Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Alex 2024 on April 06, 2024, 10:10:38 AM
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Hi Everyone,
This is my first post! And wish I'd found this forum years ago ;)
I'm 53 and have been on hrt for 3 1/2 years, definitely started peri menopause at age 47. I'm in the UK and have struggled with menopause prescriptions the whole time. I use Everol patches and was using Utrogestan tablets but now have a mirena coil.
I Started taking Citalopram anti depressant at 47 to help deal with anxiety due to marriage break up. Citalopram, yoga, meditation served me well for a long time.
I stopped taking Citalopram in November 2023 as I felt it wasn't making any difference and it blunted my emotions. This was probably a mistake.
In April 2023 I started taking Amitryptilene to help with chronic fatigue. OMG what a mistake!!!! I went from sleeping up to 12 hours a day to chronic insomnia and feeling "wired" and very anxious. The doc advised to up the dose - so I did and suffered another "bump" as I adjusted to the dose for a few weeks and it didn't help. By this time my anxiety is through the roof - I'm in coping mode and believe the doc when she said it would help.
I switched Docs and now always talk to the menopause doctor at the surgery. She switched me to Sertraline in September 2023 this didn't work either, suffered a severe bump getting up to a dose of 50mg over a few months, by November 2023 I've written in my diary that I feel suicidal. I was having panic attacks as well. All the while I am in coping mode. Each day is a challenge. I know I need some sort of anti depressant to help but life is hell. The Doc changed me immediately from Sertraline to Venlafaxine. I gradually upped the dose of this to 112.5mg
In December 2023 I changed to the Mirena Coil because Utrogestan tablets made me feel worse around my period time than I ever did before peri menopause. This has only just settled down.
In February 2024 I changed my Everol patch from 75 to 100. Previously doing this had increased my anxiety and a blood test came up as 866 for Oestrogen s I switched back again. Changing up again increased my anxiety and didn't stop the horrendous nights sweats that I started having around 4 months previously. I had a blood test after 5 weeks and my oestrogen was 566. Which seems a good amount as the upper limit is 800 so I'm still on 100 patch.
I saw a psychiatristrist 8 days ago (something I never thought I'd need to do) and he advised me to cut back Venlafaxine and add in Mirtazapine.
So here's where I'm at right now......
Everol Patch 100
Mirena Coil
Venlafaxine 70 mg (cutting down as of 8 days ago)
Mirtazapine 15 mg (started 8 days ago)
The Mirtazapine knocks me out at night (except for one random night of insomia - got one hours sleep) but I CANNOT wake up in the morning, previously waking up at 5am naturally, now wake up with alarm at 7am but feel very woozy and spend 2 hours drifiting around on the internet before I panic and get up. I'm then in fight or flight mode and feeling tense most of the day until I start relaxing around 8pm when I start my bed time routine.
I should add that I'm a naturally thin person and have very severe reactions to starting anti depressants - I usually need to start on less than half the recommend amount for other people. However, Menopause meant that I gradually went from 8.5 stone to 11 stone 2lbs until I started this hideous anti depressant rollercoaster in April 2023 and lost all the weight back again in around 3 months. I would now like to put on a bit more weight.
My questions are: I "think" my hrt are about right for me at the moment - but if anyone has comments on this I'd like to read them :)
I really don't think Venlfaxine suits me, but I'm already on it and every change I make puts me though increased anxiety hell yet again. Has anyone had a similar experience to this and what was the outcome?
I will stick with trying the Mirtazapine for at least another week, has anyone tried this with Venlafaxine and what did you think?
A friend said she thought there was a blood test that is primarily used in the USA that tests which anti depressants will work for you and which won't. Does this sound familiar to anyone in the UK? - is it possible to get it here and have you managed to get an nhs Doc to interpret the results for you. Has anyone got a link to this and any advice?
..... I'm really sorry this is such a long and complicated post but as you can tell I've been going through hell for a very long time and am coping (because I always will through sheer determination) but really want to sort out this mess.
Thanks for reading and am hoping you can help xx
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Yes, there is a specific DNA test called Genesight which does exactly that! It maps your DNA against a wide range of psychiatric drugs (around 60 I think, and includes all the main ssris, and Venlafaxine is in that group) and indicates whether you are likely to respond well or not, or if they'll cause you problems. It is a US test but your psychiatrist or any type of functional medicine doctor/ naturopath should be able to order it for you. You can't order it yourself, it is practitioner only. It is about 250 quid I think. I think it's a good idea and am hoping to get it myself when I see a Psych privately in a few weeks. General DNA tests do not give you the information about specific drugs in this way although they can indicate if you have any problems with particular pathways eg making serotonin or metabolising certain things. If it was me, I'd give Genesight a try x
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Morning. Did the Psychiatrist give advice on weaning off 'venlerfaxine'? I can't understand why another drug would be added until you had been 3 weeks into weaning off.
Bounce back anxiety is common when weaning off, it took me 9 weeks however, I can't remember which particular drug ::).
Lots are sensitive to the progesterone part of a regime, has the Mirena helped at all?
Hormone blood tests are reliably un-reliable. They have to be done at certain times of a cycle and/or HRT regime.
Could you take the Mirtazapine earlier to avoid the 'hung over' effect each morning? A friend used this drug with great success after a few problems/truamas.
I have never heard of a blood test or any other examination that would show if a patient is susceipable to drugs, this is something to ask the Psychiatrist about rather than spending money. Always make sure that the Company charging for the blood tests are not selling a product!
Let us know how you get on.
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Thanks Penguin that's probably exactly what I'm looking for, I'll email the psychiatrist and ask about it.... Fingers crossed...
Thanks also CLKD I was also wondering why I was asked to do two things at once... However I've been in such a heightened state of anxiety for such a long time that I now want to make quick changes and find what's right for me asap and if it means a week or two of very unpleasant adjustment then I'm willing to do it in the hope that finally things will improve.
As for blood tests... I have no idea where I'm at on the cycle because the coil has changed things so much. I bled every day for around two months. And I've just finished my first period since having it fitted and yes, I did feel better than when taking utrigestan tablets.
I'm going to continue as I am, email psychiatrist and then see him again in a month.
I just wish I could throw all the meds in the bin and start again but I can't..... Sigh....
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Good luck, I think it's definitely worth a try!
Also some drugs you can start cross tapering immediately with and some you can't. Depends on type and known interactions. My brother in law is a doctor and told me that that is why I am better seeing a psychiatrist rather than a GP as these types of drugs is their specialism and they know what can be combined. He also said that sometimes a low dose of two drugs works better than a high dose of one, as happened to my husband with his BP meds.
Please update if you go ahead with the Genesight, or dm me if you'd prefer. I'm really interested in epigenetics and how we can work with our genes.
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Hi Alex
Sorry to hear you are having a bad time.
I think the overlap / confusion between MH and hormonal issues - and therefore the muddles between ADs and HRT - are really common, and the way things work in the UK is that GPs don't know enough about either and specialists in either tend to be blind to the other. So I hope it helps to ask if you've heard of Michael Craig - he is a psychiatrist who was previously a consultant gyn and therefore one of the few people who does consider in the round. I've not seen him ... for various personal and historic reasons I am trying to sort out my HRT first, which has been very challenging in itself - but once I am getting anything like stable or appropriate levels of oestradiol, if my crippling symptoms are still there I would try to see him. My consultant (meno) works closely with him and rates/recommended him. I think he works both privately (Craig Clinic, if that's an option for you) and in the NHS (Maudsley, Female Hormone Clinic - but I believe it's a national referral so your GP should if you ask, preferably armed with info so give them a call first?). I imagine both have long lists, especially the latter.
I'd be interested to know if anyone on here has seen him ...
Meantime that blood test sounds interesting as ADs do seem hit and miss. venflaxine is one of the hardest to come off (shortest half-life), and is available in liquid form to help this but you probably should do it under expert advice - and much though I sympathise with wanting quick fixes, that's just not how withdrawals work ... and for all SSRI/SNRIs it's the lower doses that cause the issues with w/d ie people are much more likely to have a problem at the last stages than going from a high to medium or very high to high dose so all advice is to take it slowly. There's a lot of info about this now - if you want to google have a look at the work of Horowitz, Heal(e?)y, or a website called Surviving antidepressants.
But it's probably best to do this from expert advice, much though everyone here (me included) would love to help you - it's highly individual and challenging stuff.
Hope that helps and you get some relief and help soon xx
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Testosterone!
I liked Evorel 100 + Mirena combination but wish now I knew about Testosterone much earlier. Only it helped with that scared/weepy/weak/anxious/fearful state my meno put me in and I could not shake off until I tried Testo. ...but, later, lowering oestrogen helped to get rid off an idiotic anxiety I had to..washing machine and wind..
I know nothing about combining all with ADs..Sounds to me, too much of it all at once..?
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I've had many ADs as well as Valium - initially it was 5 mg x 3 times a day then 5mg as necessary: I found it useful to take the night B4 an Event I was unable to get out of [visiting his family]. Knowing that I could take another 5mg during that day however, I never required it. I had about 3 days benefit each time.
In 2002 my GP prescribed 'propranolol' a night to ease the early morning anxiety surges. I would wake, terrified. The betablocka really helped me but it sends my neighbour into a heightened state of agitation.
Some find that keeping a mood/food/symptom diary of use to chart progress and note if any symptoms might be cyclical.
Let us know how you get on! Lots of good advice here.
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Hi Alex
Sorry to hear you are having a bad time.
I think the overlap / confusion between MH and hormonal issues - and therefore the muddles between ADs and HRT - are really common, and the way things work in the UK is that GPs don't know enough about either and specialists in either tend to be blind to the other. So I hope it helps to ask if you've heard of Michael Craig - he is a psychiatrist who was previously a consultant gyn and therefore one of the few people who does consider in the round. I've not seen him ... for various personal and historic reasons I am trying to sort out my HRT first, which has been very challenging in itself - but once I am getting anything like stable or appropriate levels of oestradiol, if my crippling symptoms are still there I would try to see him. My consultant (meno) works closely with him and rates/recommended him. I think he works both privately (Craig Clinic, if that's an option for you) and in the NHS (Maudsley, Female Hormone Clinic - but I believe it's a national referral so your GP should if you ask, preferably armed with info so give them a call first?). I imagine both have long lists, especially the latter.
I'd be interested to know if anyone on here has seen him ...
Meantime that blood test sounds interesting as ADs do seem hit and miss. venflaxine is one of the hardest to come off (shortest half-life), and is available in liquid form to help this but you probably should do it under expert advice - and much though I sympathise with wanting quick fixes, that's just not how withdrawals work ... and for all SSRI/SNRIs it's the lower doses that cause the issues with w/d ie people are much more likely to have a problem at the last stages than going from a high to medium or very high to high dose so all advice is to take it slowly. There's a lot of info about this now - if you want to google have a look at the work of Horowitz, Heal(e?)y, or a website called Surviving antidepressants.
But it's probably best to do this from expert advice, much though everyone here (me included) would love to help you - it's highly individual and challenging stuff.
Hope that helps and you get some relief and help soon xx
That is so true re the overlap, I feel like I'm chasing my tail knowing whether my MH issues are actually MH or hormonal. And just when I think I have it figured, something changes.
I am very interested in the psych / gynecologist you mentioned and going to look the Craig Clinic up. I'm seeing a private psychiatrist mid April but it would be amazing to see someone that understands both.
OP, this sounds like a great route to explore as well, someone who can look at the whole picture for you! Perhaps mention him to your Psych when you email him about Genesight?
I also agree with pursuing liquid form of drugs to taper down with, that's what I'm going to try and get for my citalopram. Your psychiatrist should be able to prescribe this for you. My GP says just to cut the tablets or alternate days but I don't think that is the safest way to do it, and you can get much smaller doses with liquid.
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Hi.
I'm very nervous about being taken to give advice here, I'm not a doctor! But: alternate days are a GP fallacy and one of the WORST things to do, especially with short half-life drugs. That puts you in and out of withdrawal on alternate days. And if you cut eg slow-release venlaflaxine into pieces, you interfere with the slow-release mechanism and therefore are also in and out of withdrawals too.
Like HRT, this is just way over most GPs' knowledge. And far too many psychs around have "closed their minds" to hormonal issues ... those were words I heard Nick Panay say in one of his Diane Danzebrink videos, and seems very true!!
HTH xx
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Several years ago that was how I withdrew by alternate days. Then every 5th day etc.. I made sure that I could rest and fortunately my symptoms eased within 24 hours each time. It took my head a couple of weeks to get round that the bounce back didn't make me feel worse! I was worried that the bounce back would cause me to restart but I stuck it out.
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Hi.
I'm very nervous about being taken to give advice here, I'm not a doctor! But: alternate days are a GP fallacy and one of the WORST things to do, especially with short half-life drugs. That puts you in and out of withdrawal on alternate days. And if you cut eg slow-release venlaflaxine into pieces, you interfere with the slow-release mechanism and therefore are also in and out of withdrawals too.
Like HRT, this is just way over most GPs' knowledge. And far too many psychs around have "closed their minds" to hormonal issues ... those were words I heard Nick Panay say in one of his Diane Danzebrink videos, and seems very true!!
HTH xx
Totally agree, same with alternating days on hrt. But he was just suggesting it for citalopram which has a long half life and isn't a slow release one (at least mine isn't that type). However, the 10mg which I'm on doesn't have a cut line in it so you don't even know quite what you're getting in dose anyway, and they arent designed to be cut. I think the key is to go to an expert when trying to taper if you can as it is SO important to do it safely and every drug is different, so a taper programme for one won't necessarily work for another. I really hope my Psych isn't of the closed mind variety!!!
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Penguin - have sent you a PM xx
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Penguin - have sent you a PM xx
Thanks, got it 😀
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I think the overlap / confusion between MH and hormonal issues - and therefore the muddles between ADs and HRT - are really common, and the way things work in the UK is that GPs don't know enough about either and specialists in either tend to be blind to the other.
Thanks Hollybol I completely agree with what you've written above and actually agree with everything you wrote.
I didn't know Venlafaxine was so hard to cut down - that's interesting .... if not good news for me!
I simply can't afford to go private - if I get the go ahead for the Genetic blood test it will be out of my rainy day money and will have to be a one off unfortunately.
My experience is, like you, that all this is beyond a GP and I'm hoping the psychiatrist has taken my menopause prescription and problems on board - he certainly seemed to be listening but I'm not convinced because I've had such bad experiences and lack of continuity of care through this whole journey.
Orlla mentioned testosterone. I had an "interesting" exerience with it. I started taking it in June 2021 and felt so much better within two days! - I had confidence like I had never ever had in my life before!! However...... I didn't pay enough attention when the gel packets changed from 50 to 40 (because I was anxious and struggling with attention and to be fair to me it would have been nice if the pharmacist or someone had flagged up the dangers) and accidentally started to overdose with it... guess what.... my anxiety started to increase and I started to get very hairy which really upset me. Around September 2023 I had a blood test and had 20 times the recommended amount of testosterone. So I stopped it immediately. I was told the hairiness would go and it has died back but not completely. So although I think a v small amount of testosterone would benefit me, until it can be prescribed more accurately and in very small doses I am not going anywhere near it.
Thanks to everyone for advice so far - it's all been very helpful and it's really good to find a supportive and knowledgeable place.
I know there isn't a magic bullet for all this ... but it doesn't stop me from wishing there was one xx
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Hello ladies.
I was prescribed Venlafaxine at the same time as I started HRT back in 2013. I have never been sure if this AD helped or not but my GP was happy to increase my dose over the years and I now take 150mg daily. These
are the slow release variety and are capsules not tablets. I read somewhere that it's possible to open the capsules and take out some of the contents before reassembling them. I haven't tried this so I am not sure if the capsules contain granules that you can count or powder that you can measure. Hopefully any psychiatrist worth his/her salt will know the answer!
On a personal note I would love to be drug free as my experience hasn't been good. I am currently struggling with overwhelming fatigue which may be due to the introduction of oral Utrogestan and the reduction of Sandrena gel. Whatever the cause I would appreciate a return to sanity asap!
Take care ladies.
K.
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sorry to hear you're having trouble Kathleen. Unfortunately GPs are very happy to increase doses of ADs without having much clue what they are doing let alone of the increased side effects without increased efficacy at higher doses or how best to come off them. I'd re-iterate looking at some of the resources I mentioned above.
Alex - I agree we'd all love a magic bullet; I often wish for a time machine - if I'd known 10+ years ago what I know now etc ...
You might consider asking GP for a referral to the Female Hormone clinic (Michael Craig's clinic) at the Maudsley. It may take months but is there a downside to getting in the queue?
xx
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Hi All,
I've just done some Googling on genetic testing in the UK and have found this.....
Genesight charge $330 BUT don't seem to connect with anyone in the UK, I've will email them to ask them if it's possible.
Myogenes will do this the test costs £786 but I would need to pay/find someone to interpret the results
https://www.myogenes.com/the-psychiatric-pharmacogenetic-test/
The London psychiatric centre seem to do this too, I think it would cost around £1,375 - initial consult, test, 2nd consult. I simply cannot afford this.
Could any of you check this for me....? I have to stop now as I've got very very stressed doing this research and I'm in such a state that what, if I was in an ok state, would take me 30 mins now takes me 2 hours and leaves me with a stress headache.... :( I'll look at any replies later.
Have a good evening everyone x
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I think both the other options are too expensive tbh, especially as you'd need to pay a doctor to requisition the test for the myogenes one as well.
You could find a US practitioner who does consultations by zoom and who would be willing to post the test kit to you. I have no idea how you'd do this apart from contacting Genesight and getting a list of practitioners who use their tests.
But I'd have thought it'd be easier to email your psychiatrist first and ask if they know a way around it.
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The specific gene set to test for this is the cytochrome P450 (CYP450), for info see https://www.mayoclinic.org/tests-procedures/cyp450-test/about/home/ovc-20393706 (https://www.mayoclinic.org/tests-procedures/cyp450-test/about/home/ovc-20393706)
The Doctors Laboratory in Wimpole St have the test but I couldn't see the price and it's not clear whether they interpret the results.
I have experience of the Doctors Labroatory https://tdlpathology.com/tests/tests-a-z/tests-c/cytochrome-p450-2c19/ (https://tdlpathology.com/tests/tests-a-z/tests-c/cytochrome-p450-2c19/) in a slightly different context - it's where I go to draw blood for my hormonal tests with Medichecks; the place itself is totally professional and bonafide. The also have courier collection in Manchester.
If it were me I would phone them for clarifications on what to do.
Also this place. GP.London (again in the Harley St area) lists the P450 test at "only" £536 https://www.gp.london/private-blood-test-price (https://www.gp.london/private-blood-test-price), plus £50 for drawing blood (Doctors Lab charge £35 for drawing blood when I use them with Medichecks).
It's not clear (but I did not look for that long) whether these people will then "read" the results for you.
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If it were me I would phone them for clarifications on what to do.
Also this place. GP.London (again in the Harley St area) lists the P450 test at "only" £536 https://www.gp.london/private-blood-test-price (https://www.gp.london/private-blood-test-price), plus £50 for drawing blood (Doctors Lab charge £35 for drawing blood when I use them with Medichecks).
It's not clear (but I did not look for that long) whether these people will then "read" the results for you.
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Wow! Thanks Lazla, that's super helpful!!!
Penguin: I agree! that's all far too expensive
Hollyboll: That's a good idea about getting on the waiting list for Maudsley, thanks! Also, I noticed from another thread that you go to Chelsea & Westminster. I was under their care but they discharged me last Feb when I "didn't answer the phone" for an appointment..... only my phone hadn't rung and I was waiting for their phonecall all afternoon.... I should have challenged this but I didn't have the energy or headspace to do it, so I just accepted it. They were much better than my GP when I could actually speak to them but I had a very very up and down experience with them, not helped by the fact that my referral to them started during lockdown and they were understandably really struggling.... sigh.... if I could clone 5 of me to be my personal PA I'd ask Pals to get me back to the clinic but it's just not going to happen - do many other life priorities ;)
Thanks v much everyone x
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Thanks Alex. Let us know how you get on
Xx
Ps I’m not (and never been) at c&w. I’ve heard the admin is v challenging - your story is another bad one :-\
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Thanks Alex. Let us know how you get on
Xx
Ps I’m not (and never been) at c&w. I’ve heard the admin is v challenging - your story is another bad one :-\
Oops! Sorry!! - not used to forum posting at all - getting you mixed up with someone else I guess. Yes will update xx
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No problem!
Look forward to updates. And hope you feel better to have some ideas meantime xx
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I was under their care but they discharged me last Feb when I "didn't answer the phone" for an appointment..... only my phone hadn't rung and I was waiting for their phonecall all afternoon.... I should have challenged this but I didn't have the energy or headspace to do it, so I just accepted it.[/quote]
Alex, I had numerous and worse episodes like this at Chelsea and Westminster but I decided that I would complain - partly because it's generally outrageous and affects lots of women, as well as for pragmatic, selfish reasons - they are I think one of only 2 (?) places in London who do NHS implants which I really needed to try. In short, complaining worked and the service has improved. But yes effective complaining does require a bit of time and effort, I think it's a question of determining if the potential benefits are worth the effort - in my case they were.
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Sounds very similar to my journey 5 years ago.
I was also under a psychiatrist and tried various antidepressants. One combination was venlafaxine and mirtazepine , but this made me worse. It was mainly the venlafaxine which was heightening my anxiety. Once the venlafaxine was withdrawn and I was on mirtazepine alone it wasn’t so bad but not perfect. I had the genetic test done that , for me comfirmed, all the ssri’s I had tried and had an adverse reaction too was not indicated for me with my genes. I ended up on duloxetine.
However the biggest turn around for me was seeing a menopause specialist who diagnosed histamine intolerance and progesterone intolerance. Unfortunately oestrogen can exacerbate histamine intolerance.
I followed a low histamine diet and took antihistamines and it changed so much for me I came off Duloxetine. I also took the drastic measure of an hysterectomy to avoid progesterone. I’m doing well now on oestrogen and testosterone.
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Sounds very similar to my journey 5 years ago.
I was also under a psychiatrist and tried various antidepressants. One combination was venlafaxine and mirtazepine , but this made me worse. It was mainly the venlafaxine which was heightening my anxiety. ....
However the biggest turn around for me was seeing a menopause specialist .... I’m doing well now on oestrogen and testosterone.
That' really interesting - sounds like I may be having similar reactions to you, I feel like it doesn't matter what I take or whether it's an increase or a decrease the result is an immediate increase in anxiety which I then have to "tough out" for a few weeks to settle before the doc admits it's completely wrong for me. I'm so sick of being a "medicated guinea-pig" as it were.
Can I ask if your genetic test was in the UK and if so who with......?
And it's interesting that you mention a menopause specialist - I was hoping Chelsea & Westminster was going to be a specialist service for me but alas, it wasn't to be.
I'm going to send some emails tomorrow and see if I can make some progress and maybe get myself on the waiting list at the Maudsley.
Lasla: well done for complaining it can be v difficult be also can really really help everyone. I made a massive complaint a few years ago about a London hospital. When I was phoned by the senior manager with platitudes expecting me to say yes ok I accept your apology I replied that it wasn't good enough . The end result was that a few weeks later I was invited to a meeting, chaired, recorded and minuted by PALS with 6 other senior members of the team and management all listening to what I had to say about my bad experiences for an hour. At one point I looked at one of them and saw she had tears in her eyes whilst I was explaining what I'd had to go through to manage my own health because they had let me down so badly. I wish I could do that again, be more own health advocate as ferociously as I was then by I'm struggling too much at the moment.
I'll get there though, somehow, hopefully sooner than later xxx
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The thing is, looking at that history you gave, you initially had chronic fatigue and then were prescribed the first anti-depressant.
From then onwards, it has been a cascade of being prescribed ever more or different meds to deal with the side effects (or sometimes can be withdrawal effects) of that first med. It becomes impossible to know what symptoms are due to the drugs.
Really, it would have been best to diagnose the actual cause of the chronic fatigue in the first place and then treat something to address that problem at source. Rather than just medicating to subdue one particular symptom. This is how menopausal women end up on 50 thousand drugs. And then more drugs to deal with the side effects of those drugs and difficulty getting off the drugs....
There are many causes of chronic fatigue.
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The thing is, looking at that history you gave, you initially had chronic fatigue and then were prescribed the first anti-depressant.
There are many causes of chronic fatigue.
Hi, thanks for your reply. I agree with you but..... I hadn't written that shortly after starting the Amitryptilene I suffered a series of very challenging life events compounded by not having any work (I'm self employed) which nearly sent me to a breakdown.... this didn't give me the chance to recognise that Amitryptilene didn't work for me and to withdraw from it and go back to just hrt only. I knew I needed something extra to help me cope. If life had been better things would have been different.
Looking back on it now what I hadn't recognised was that although the chronic fatigue meant that I could sleep around 12 hours a day, I was also depressed - it had been a slow decline that I hadn't noticed.
I was "seen" by the Royal Free Hospital for chronic fatigue in 2022. This was a 6 session group course on zoom where you were given advice on how to manage chronic fatigue. I found the course didn't help at all and in fact advised me to cut down on excercise, which I did, but this didn't help just made me more unfit and put on weight.
After this I gave up on trying to treat the chronic fatigue and just tried to do my best day to day.
If you've got any good advice on helping with chronic fatigue I'd be interested to read about it.
Thanks :)
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joziel makes a good point!
"Yuppy flu" is what the medical profession in the late 1970s onwards decided fatigue as >:(. Usually sets in after a virus which depresses the immune system and causes intense exhaustion. I am told that gentle exercise when ever the sufferer feels able - too much and the body goes into free fall to build up energy again.
Classed as 'depression' it was treated as such - never getting to the causation. There had to be something more as people were affected World Wide. The body heals whilst sleeping which is why animals curl up for hours, however being in a society where appearing in the work place is expected, sufferers dragged themselves out of bed until the body said 'no more'.
My aunt was diagnosed with everything even to the point of having a hysterectomy. Clutching at straws her GP was, for over 20 years. She became withdrawn and unsociable.
Being hydrated: the pee should never be really pale as this can lead to other problems within the body. The 2 litres a day was pushed by the bottled water companies. We obtain liquids from most of what we eat/drink so keeping the urine the colour of straw is about 'right'. Any darker and we need to drink more.
Half a day at a time? Try to get into the sunshine when possible to top up VitD levels as low levels can cause weariness.
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I think the first thing I'd check out, with chronic fatigue - is thyroid. Not just the usual TSH and free T4 tests which the GP does (because those can still be fine whilst things most definitely are not good) but a full thyroid panel.
As a starting point, Medichecks does an at-home Advanced Thyroid Panel which includes a lot:
TSH, free T3, free T4, thyroid antibodies for the thyroid (no reverse T3 unfortunately)
And also ferritin (which should be over 100, D3, B12 etc etc - lots of nutritional tests which deficiencies can also cause fatigue....
I think that would be a good starting point for you...
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Hi Alex
I was on Venlafaxine for about a decade and found withdrawing from it was extremely difficult. I was so anxious and overwhelmed that I thought I was relapsing but a few weeks later it was clear that my symptoms were down to withdrawal. Mirtazapine is much easier to come off and far less side effects. During perimenopause I have found vitamin D, B12 and magnesium helpful. Once the venlafaxine (also known as Effexor) is fully out your system you will hopefully feel a lot better. My GP told me it was known as Side-Effexor at med school because the side effects were so horrible in withdrawal! Hang in there. It will get better.
quote author=Alex 2024 link=topic=69240.msg942510#msg942510 date=1712398238]
Hi Everyone,
This is my first post! And wish I'd found this forum years ago ;)
I'm 53 and have been on hrt for 3 1/2 years, definitely started peri menopause at age 47. I'm in the UK and have struggled with menopause prescriptions the whole time. I use Everol patches and was using Utrogestan tablets but now have a mirena coil.
I Started taking Citalopram anti depressant at 47 to help deal with anxiety due to marriage break up. Citalopram, yoga, meditation served me well for a long time.
I stopped taking Citalopram in November 2023 as I felt it wasn't making any difference and it blunted my emotions. This was probably a mistake.
In April 2023 I started taking Amitryptilene to help with chronic fatigue. OMG what a mistake!!!! I went from sleeping up to 12 hours a day to chronic insomnia and feeling "wired" and very anxious. The doc advised to up the dose - so I did and suffered another "bump" as I adjusted to the dose for a few weeks and it didn't help. By this time my anxiety is through the roof - I'm in coping mode and believe the doc when she said it would help.
I switched Docs and now always talk to the menopause doctor at the surgery. She switched me to Sertraline in September 2023 this didn't work either, suffered a severe bump getting up to a dose of 50mg over a few months, by November 2023 I've written in my diary that I feel suicidal. I was having panic attacks as well. All the while I am in coping mode. Each day is a challenge. I know I need some sort of anti depressant to help but life is hell. The Doc changed me immediately from Sertraline to Venlafaxine. I gradually upped the dose of this to 112.5mg
In December 2023 I changed to the Mirena Coil because Utrogestan tablets made me feel worse around my period time than I ever did before peri menopause. This has only just settled down.
In February 2024 I changed my Everol patch from 75 to 100. Previously doing this had increased my anxiety and a blood test came up as 866 for Oestrogen s I switched back again. Changing up again increased my anxiety and didn't stop the horrendous nights sweats that I started having around 4 months previously. I had a blood test after 5 weeks and my oestrogen was 566. Which seems a good amount as the upper limit is 800 so I'm still on 100 patch.
I saw a psychiatristrist 8 days ago (something I never thought I'd need to do) and he advised me to cut back Venlafaxine and add in Mirtazapine.
So here's where I'm at right now......
Everol Patch 100
Mirena Coil
Venlafaxine 70 mg (cutting down as of 8 days ago)
Mirtazapine 15 mg (started 8 days ago)
The Mirtazapine knocks me out at night (except for one random night of insomia - got one hours sleep) but I CANNOT wake up in the morning, previously waking up at 5am naturally, now wake up with alarm at 7am but feel very woozy and spend 2 hours drifiting around on the internet before I panic and get up. I'm then in fight or flight mode and feeling tense most of the day until I start relaxing around 8pm when I start my bed time routine.
I should add that I'm a naturally thin person and have very severe reactions to starting anti depressants - I usually need to start on less than half the recommend amount for other people. However, Menopause meant that I gradually went from 8.5 stone to 11 stone 2lbs until I started this hideous anti depressant rollercoaster in April 2023 and lost all the weight back again in around 3 months. I would now like to put on a bit more weight.
My questions are: I "think" my hrt are about right for me at the moment - but if anyone has comments on this I'd like to read them :)
I really don't think Venlfaxine suits me, but I'm already on it and every change I make puts me though increased anxiety hell yet again. Has anyone had a similar experience to this and what was the outcome?
I will stick with trying the Mirtazapine for at least another week, has anyone tried this with Venlafaxine and what did you think?
A friend said she thought there was a blood test that is primarily used in the USA that tests which anti depressants will work for you and which won't. Does this sound familiar to anyone in the UK? - is it possible to get it here and have you managed to get an nhs Doc to interpret the results for you. Has anyone got a link to this and any advice?
..... I'm really sorry this is such a long and complicated post but as you can tell I've been going through hell for a very long time and am coping (because I always will through sheer determination) but really want to sort out this mess.
Thanks for reading and am hoping you can help xx
[/quote]
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Hi Everyone,
Here's an update:
KBallinger: Thanks for your comments, that's very interesting, sorry to hear you decided to have a hysterectomy but I understand how you could reach that decision. Can I ask where you got your genetic test? And also your menopause specialist?
CKLD - I've no idea about the connection between a virus and CFS/ME/Yuppie flu all I know is that my diagnosis was that of medium CFS and it was a diagnosis by elimination. The treatment was simply managagement. I've had a fair few thyroid tests over the years and all come back completely fine.
Hydration: for me to get my pee to be pale straw colour I have to drink a lot of extra water during the day, it wouldn't be pale enough if I only got my water from food. I've been taking a Vit D supplement throughout the winter. Sounds like your aunt had a horrific experience, sorry to read that.
Joziel: thanks for your comments,v helpful.
K45: thanks too for your comments. Wow! and Uh-oh! to the withdrawal problem :(
So last night I decided to cut back Mirtz to only 7.5mg because 15mg is just far too much for me at once. I think it's the right decision atm so thanks everyone for your support and help as I don't think I'd have made that decision without you. I NEED to function today - I have my son and his friends to look after today- life goes on (thank God!) and you have to roll with it. I do feel a little clearer this morning (phew!)
Also: I heard back from Genesight. They cannot send me a test as "Thank you for your interest in the GeneSight® test. Unfortunately, due to international customs and regulations regarding human DNA samples, we are unable to offer GeneSight testing internationally at this time" . Which makes perfect sense - something I hadn't considered.
I phoned GP London and they will do a CP450 test without a referral. If I wanted someone to interpret the results they could recommend a psychiatrist. Interestingly they couldn't find the test on their website and phoned me back. When phoned back they initially said it would be "£615 but we'll honour the price of £536 on the website" - she thought I was phoning about the price and service on the Doctor's laboratory site, she was confused. It was clear that GP London and Doctor's laboratory are linked in someway, I'm guessing they're different brands/service with the same lab/parent company. The cost of interpretation by a pschiatrist with GP London would be £150 which makes a total of £786. Doctor's lab themselves won't do a test without a refferal. Phoning myogenes was the best experience. Instead of a blood test you do a cheek swab. Included in the price is a 30 minute zoom consultation with a doctor. Guess what the price is...? £786 .... do I think all three of different brand of the same service - yes I do (though of course I could be wrong). The downside to the myogenes service is that if I can't get my psychiatrist onboard with this then their cost for a doctor to interpret for me is £250 so actually that would come out as £1,036.
This is very frustrating as the cost with US based Genesight is just $330 ..... but then this is very new to the UK and it's just where we're at right now.
I also emailed my psychiatrist with my progress and asked if he would support me to do the testing.... I'll wait and see what he has to say...
I booked an appointment with a GP which I'll use to ask about a referral to the Maudesley and also ask about Thyroid testing again.
Thanks so much everyone - all your comments are food for thought, supportive and yet also slightly challenging (the CFS comments) but challenging is also good - we all need that sometimes. I feel I've found a supportive community which I really need.
I'll keep updating on my progress and reply to all comments. xx
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Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
When you say offer the same service do you mean they test the exact same gene? Which is the company you don't need a referral with?
I am seeing psych in a few weeks so will ask as well. This may well end up being the way forward for those of us struggling to find the right mental health meds so it's be good to pool and share this information on how helpful each test/ approach is.
Penguin x
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Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
Penguin x
Yes so had I..... however - didn't have the time to write earlier that hey said that if you had a holiday to the US you could use their portal to order the test and of course just sent it back. So that's one option - if you're lucky enough to be able to travel for work or holiday then it's a no brainer. ...? Would be interested to know if anyone does this as I haven't read experiences of any who has used this service. So can only take a "looks good but haven't tried it" approach.
The company you don't need a referral with is GP London..... well, so far, but there's something I'm not sure about between them and doctor's laboratory and I'm waiting to receive a second phone call back from them - which may not happen until tomorrow. I'll update when I can.
I am DEFINITELY feeling better on a lower dose of Mirtazapine..... I find this so frustrating that it doesn't matter how many times I tell doctors that I'm super sensitive to any medication and change they ignore me...! The only person who didn't was a wonderful GP I had until a couple of years ago but unfortunately she moved away. Her care made a huge difference to my health.
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Thanks for the update, that is good to know (albeit disappointing) re Genesight as I'd pinned my hopes on that one in particular.
Penguin x
Yes so had I..... however - didn't have the time to write earlier that hey said that if you had a holiday to the US you could use their portal to order the test and of course just sent it back. So that's one option - if you're lucky enough to be able to travel for work or holiday then it's a no brainer. ...? Would be interested to know if anyone does this as I haven't read experiences of any who has used this service. So can only take a "looks good but haven't tried it" approach.
The company you don't need a referral with is GP London..... well, so far, but there's something I'm not sure about between them and doctor's laboratory and I'm waiting to receive a second phone call back from them - which may not happen until tomorrow. I'll update when I can.
I am DEFINITELY feeling better on a lower dose of Mirtazapine..... I find this so frustrating that it doesn't matter how many times I tell doctors that I'm super sensitive to any medication and change they ignore me...! The only person who didn't was a wonderful GP I had until a couple of years ago but unfortunately she moved away. Her care made a huge difference to my health.
So do you have to get the blood draw done in the US or, could someone who is travelling there for work, pick the test up and bring it back to UK, and then you send it back via post?
I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
For example my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.
Perhaps Laszla will know more, hopefully she'll come back on and see this!
I too am sensitive to meds and initial estrogen dose of 2 pumps was far too high. I am still on half the standard dose of citalopram and even have a hard time with side effects from antibiotics. Haha I am a sensitive little flower. But it is hard to get anyone in the conventional medical field to believe that the reactions/ side effects are as a result of the drugs, rather than menopause in general or anxiety (which is what is always levelled at me). I mean, I've never had reflux in my life, hrt caused reflux, will the GP believe it even when the reflux is cyclical and timed with the progesterone phase? Nope, my reflux is caused by anxiety apparently so I totally get where you're coming from needing lower doses of things.
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Good to hear you're better Alex. I'm not surprised that gp London and Doctors Laboratory are connected - my thought/hope when suggesting you call them was that they would connect the dots in terms of 'interpreter', blood drawer etc. But of course the price remains high.
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Reflux may be caused by laxity of muscles. As oestrogen levels drop muscles can become lax. I had indigestion over the years which became worse in my mid-30s. 'omeprazolol' eases the irritating clearing of throat!
GPs don't seem to be pliable ........... if it's anything out of the 'ordinary' many seem afraid to engage with the whole patient. :-\
I react to most ABs = severe nausea and I rarely complete a course. It would be better 4 me to have it via a drip ::). However, at my age I would probably trip over the drip stand ? :D
We know our bodies best.
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Reflux may be caused by laxity of muscles. As oestrogen levels drop muscles can become lax. I had indigestion over the years which became worse in my mid-30s. 'omeprazolol' eases the irritating clearing of throat!
GPs don't seem to be pliable ........... if it's anything out of the 'ordinary' many seem afraid to engage with the whole patient. :-\
I react to most ABs = severe nausea and I rarely complete a course. It would be better 4 me to have it via a drip ::). However, at my age I would probably trip over the drip stand ? :D
We know our bodies best.
Maybe in some cases. But mine isn't caused by that. Mine is a direct result of taking hrt and the progsterone phase in particular. It goes at the end of each month when I stop the utrogestan. I hate that stuff but it's the only non synthetic progesterone available so if I stay on hrt then I'm stuck with it.
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I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
For example my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.
Perhaps Laszla will know more, hopefully she'll come back on and see this!
According to Mayo Clinic: "The cytochrome P450 enzyme includes the CYP2D6 enzyme, which processes many antidepressants and antipsychotic medications. By checking your DNA for certain gene variations, CYP450 tests can offer clues about how your body may respond to a particular antidepressant. CYP450 tests can also identify variations in other enzymes, such as the CYP2C19 enzyme."
In other words, the CYP450 test includes various pathways and enzymes and definitely sounds like the relevant test for determining reactions to certain ADs.
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I've asked someone to find out for me whether the UK test CYP450 is the same offered by Genesight. I don't know if more genes are involved in the Genesight one or not, given they list over 60 drugs they test. I am a little confused because I thought it was not just about your metabolising gene, but also about how up or down regulated your other neurotransmitter pathways are in general
For example my MOAO is slow which means I find it hard to process / get rid of certain neurotransmitters when my body produces them or drugs that influence them are added. That isn't CYP450 but I know so little that perhaps MOAO comes under the umbrella of the metabolising test. Sorry if I am making this sound more complicated than it is, I just don't want either of us spending that amount of money out unless it will actually give us the answers we need.
Perhaps Laszla will know more, hopefully she'll come back on and see this!
According to Mayo Clinic: "The cytochrome P450 enzyme includes the CYP2D6 enzyme, which processes many antidepressants and antipsychotic medications. By checking your DNA for certain gene variations, CYP450 tests can offer clues about how your body may respond to a particular antidepressant. CYP450 tests can also identify variations in other enzymes, such as the CYP2C19 enzyme."
In other words, the CYP450 test includes various pathways and enzymes and definitely sounds like the relevant test for determining reactions to certain ADs.
Ah that's great, thanks for explaining that!
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Dear Alex,
I’m really sorry to hear of your difficulties. From my perspective, anxiety is a hideous thing and I have been struggling with it for years.
I’d like to reiterate what others have said about tapering and not doing alternate days. Some people are more prone to withdrawal and some drugs have shorter half lives (making withdrawal harder). Having done a LOT of research trying to help myself, and having seen a number of GPs and psychiatrists over the years for depression/anxiety, I can say with confidence that some people have very bad withdrawal and the only safe way to manage that is a very gradual tapering using liquid. This is what I did the last I came off AD as my previous experience of withdrawal was horrendous. There are forums online of the hundreds and thousands of people who have suffered withdrawal (the forum is founded by a DR with huge experience about researching withdrawal. And for years most psychiatrists and GPs would tell you there’s no such thing, it’s just your symptoms coming back). I lowered my dose of citalapram by 1mg and stuck with that for 3 weeks, then another 1mg for 3 weeks and so on. I actually had a verbal fight with the psychiatrist (in Ireland) to go this slowly and do the liquid route. But I know me better than she knew me and I know what I went through years before. I know some people who can half their drug for a few weeks then half again, and they are fine. I definitely wasn’t and no psychiatrist was going to tell me to harm myself. GPs know virtually nothing about AD other than what the patient information leaflet says in the packet. They don’t call it “practicing medicine” for nothing. It really bothers me that for a lot of people with depression/anxiety are given a cocktail of drugs and swapped and changed. Mental health treatment feels like an experiment. Apologies, I’m ranting a bit, but after years of bad and harmful advice, I’ve had my fill. I’m sure little of what I’ve said is useful, but I am thinking of you.
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P.S. if there is a DNA test to ID which drugs would work for you, that sounds amazing (get your Dr to verify though). It would also be a travesty that it’s not more widely known or done on the NHS, given the impact on taking drugs that don’t help or make you worse.
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Hi Everybody,
Huge apologies for the very late reply to some incredibly useful and supportive advice given here, had a deadline for some very important paperwork which of course took me a long time due to my battered capacity. All your advice is greatly appreciated.
I am definitely lacking in mental clarity. I really wish I'd had the capacity to come back and answer here a few days back....oh well... it is what it is....
So... my replies first of all are:
Penguin: The Genesight test is a cheek swab. Yes, you'd have to get it done in the US, if a friend took it back for you they'd be breaking the law as you're simply not allowed to cross borders with DNA samples. I'm guessing this would actually be smuggling? - but exactly what law you'd be breaking I don't know. For sure, there's no way I'd risk it!!! By the way what does MOAO mean? I know exactly what you mean by being a sensitive flower - I'm just the same!!
Lazla: I'm only a bit better.... I keep zoning out, feeling discombobulated.. I'm not saying it's unpleasant but I am saying it doesn't feel like me and it's definitely the meds making me feel this way, also it's making me highly unproductive as I'm very forgetful and keep drifting off.... I just cannot function first thing in the morning (am changing my routine to adapt) and I have shaking hands, diarrhea, due to the Mirtazapine. I still have chattering teeth, "clenching in my left gut area" which I'm sure is the biggest contributor to my IBS and need to wriggle my foot due to the Venlafaxine..... whilst these meds are helping omg are they also messing me up. It is a very very hard price to pay, but I am at least functioning. In balance, it is better than severe anxiety..... I'm sure it sounds familiar when I write I just want to scream "I just want to be me!!! But I don't know who me is anymore!!" ....if I had the energy to scream of course.
Joziel: Thanks for the reminder - have a gp appointment booked, will ask for previous thyroid results and also ask if she thinks I need another overall health blood test.
Confused about HRT: Thanks, your comments are very interesting and good for you for having a verbal fight! - I'm far too polite most of the time. And yes you're right "practicing medicine" it is. Although I can also see why it's a guessing game for docs and not an exact science as we're all so different. I didn't know you could get liquid venlafaxine... but my GP should have!!
Everyone:
An update into my calls and emails to UK gene testing companies.
I called GP London first and spoke to a helpful but confused lady. My phone brought up this number as being owned by "Ak Private Management". When she called me back on Monday she thought I had called her about the doctors laboratory...
The doctors laboratory when emailed directly weren't particularly helpful and you need a referral for them.
On Tuesday Ms "Helpful but confused" called me back with more information. The two tests offered in the UK are different. The doctor's laboratory test genes P450 2C19 and GP London test genes P450 2D6. What's the difference? - I haven't got a clue!! - this is all now far out of my level of understanding. Ms Helpful then emailed me back a sample lab report which came from yet another company: Medical Express. ( https://www.medicalexpressclinic.co.uk/blood-tests but I can't find the gene test on this site). I don't know about you but now I'm starting to lose a little bit of trust simply because there seems to be some sort of monopoly/cartel going on. My guess is that there is only one lab in the UK but a lot of "shop fronts". This actually makes me very grateful for the NHS service even though it can be frustrating, imagine if there was no NHS and you had to deal with this all the time.
As it may help I'll quote the email sent from the lab directly:
"Dear "Ms Helpful",
With regards to CYP450 2C19 currently our in-house reports are very simple.
However, we can offer some further direction if you are interested in our in-house test for CYP450 2C19.
Alternatively we can also refer if the test requires a comprehensive pharmacogenetic. Please see attached sample report.
The 2D6 will have a similar report structure as attached.
To explain how the reporting works, the report structure is the same as for the 2D6 and all the information is generated from a single pharmacogenetics knowledge management system. Unlike this 2C19 report, which was generated from either a qPCR or sanger test solely for 2C19, the 2D6 result will be based on our NGS global panel of 335 genes. Only the 2D6 genotype, phenotype and guideline information will be included, along with any clinical commentary if the requesting physician poses a clinical question. "
Attached to the email was a 13 page report that may as well have been written in Martian..... honestly, I'm not even convinced a psychiatrist could understand it... but hopefully I'm wrong on that one ;) haven't heard back from my one yet btw.
I'm quite happy to post the report somewhere online if anybody wants to see it - I just don't know how I can do it here.
And finally for now.... the genesight test is a cheek swab as is the UK based Myogenes. Gp London / Doctors lab / whatever they're calling themselves today is a blood draw. From my (admittedly very limited) experience, I don't see why all of them can't do cheek swabs as it's so much easier for the customer and surely (as it's genes we're talking about here) they can extract the same information. But then if you not set up for cheek swabs at the lab then you can't offer it can you, we can't assume any of these business have customer simplicity as their first priority.
Thanks again everyone, very grateful to be in "my new community" and will update again where I can.
Yours, very confused and discombobulated, Alex x
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Sorry to be the bearer of more confusion ;D but re
"Joziel: Thanks for the reminder - have a gp appointment booked, will ask for previous thyroid results and also ask if she thinks I need another overall health blood test."
You won't get a full thyroid panel done via your GP. They will only test TSH and free T4. You need free T3, thyroid antibodies and ideally reverse T3/rt3 done as well. As I said before, Medichecks .com offers an 'Advanced Thyroid' panel test which includes a bunch of other things which are good to test (B12, D3, ferritin etc). It includes all the thyroid tests except rT3, but is a great place to start....
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Sorry to be the bearer of more confusion ;D but re
Medichecks .com offers an 'Advanced Thyroid' panel test which includes a bunch of other things which are good to test (B12, D3, ferritin etc). It includes all the thyroid tests except rT3, but is a great place to start....
Yep! I'm very confused! :o
I'm on a very limited budget so medichecks sounds good but.... I'll have to wait and see what the doc says in a couple of weeks
Thanks for updating me though :)
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Hi Everyone,
I've got another, interesting update on this - especially for those who were thinking they might take a gene test.
I had a text chat with some friends in the states and they said they'd help me try and take the Genesite test. It is just not as easy as I thought. You'd need to be over there but also you would need to register with a pyschiatrist service, a Genesite provider and liase with them. The fees for this seem to be between $300 and $450. It also wouldn't be easy to organise, as I contacted a few providers by email and they all want to speak to you by phone. So actually I think it would be more difficult than doing a test here and would also cost more or the same.
If anyone else tries this or gets further than I have then I'd be grateful if you could update this thread with the info.
On the plus side... I finally got hold of my psychiatrist and he said he would support me with doing the myogenes test. There was a caveat though: he has done this for other people and he said it may not be as useful as I think as it's not as "cut and dried" with answers as I might think. He makes a good point.
And how am I doing right now........? Terrible this morning.... I think I'm really struggling with cutting my dose of Venlafaxine. The Mirtazapine does seem to be doing something to help me feel more optimistic but I started feeling VERY tense on Sunday. On Monday I woke up with very bad face excema again (I've managed to control this, phew!). Tuesday I didn't feel so bad but today, Wednesday morning, I am so tense and ratcheted up I cannot concentrate... I feel like I could easily snap at someone. I have a dry mouth too. I've been two weeks now on cutting down from 112.5 to 75mg, I think I'm going to "power through" for another two weeks, but of course the option is to go back up to 112.5mg. This is what the psychiatrist recommended. Does anyone else have something to help me on this....?
It's fine if you'd prefer to DM me with your experiences/advice.
Thanks everyone - just trying to take one step at a time today and get through my day's committments x
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It's the Trial and Error that is so tiring :'(
it’s just your symptoms coming back. it's known as 'bounce back' in that the symptoms that the drug/s were prescribed for and which subdued any sensations etc., come back without the drug imput. It took me 9 weeks of weaning to get off one AD can't remember which one: each time I dropped the dose the effects would return so my head went into 'what if I can't stop', 'what if I have to go back on it', 'what if the new regime doesn't work' :-\ :'(. It took me 10 days to realise that after each 'drop' those awful feelings didn't become worse; so I persevered. I had support from my GP at the end of each week as well as a DH.
If people don't get that support and reassurance then it must be so hard to ditch any drug that may be prescribed.
Me: I want a cure and I want it yesterday :-\ ::)
I'm feeling vulnerable for the last 2.5 weeks, due to a problem with eating :'(
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It's the Trial and Error that is so tiring :'(
It is - and to be perfectly honest it's wrecked my life - I feel like I've spent the last year "on hold" because of medication that was supposed to help but actually just made things worse..... hence why I'm so keen on the gene test rather than more trial and error .... just how much hell can one person take...?
it’s just your symptoms coming back. it's known as 'bounce back' in that the symptoms that the drug/s were prescribed for and which subdued any sensations etc., come back without the drug imput. It took me 9 weeks of weaning to get off one AD can't remember which one:
From what I've been reading this week you did very well to get off an AD in 9 weeks. This forum suggests 10% drop every 4 weeks: https://www.survivingantidepressants.org/forums/topic/300-important-topics-in-the-tapering-forum-and-faq/
So when I was advised to go from 112 to 75 it was a 30% drop...! - that's a massive drop for me!! - no wonder I felt awful after two weeks!!
If people don't get that support and reassurance then it must be so hard to ditch any drug that may be prescribed. - yep! absolutely!!
Me: I want a cure and I want it yesterday :-\ ::)
I'm feeling vulnerable for the last 2.5 weeks, due to a problem with eating :'(
Yes - me too.... so sorry to hear you've got eating problems atm, anything we can do to help......? xx
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Thanks for the interesting updates Alex, and we're all wishing you improvement soon.
Hope it's helpful to paste here some info I put in another thread about withdrawals. It's not to replace anythign your specialst recommended but you might find it helpful to discuss with them in trying to understand their recommendtions ...
Experiences of this are massively individual - depends on metabolism (and presumably gene things they don't understand yet!), the drug, how long one's been on it, other health and meds etc etc. Some people sail off without many probs, but for many it's much much harder.
As CLKD says, because sometimes withdrawal symptoms are not dissimilar to originals, medics often miss and muddle them.
Her experience - of it taking a couple of months and stabilsing after 10 days each time - sounds exhausting and challenging but many do have much longer and tougher times ... I say this not to frighten you, as you may not, but because when my GP put me into withdrawal nightmare by advising very poorly on withdrawals from drugs onto which he should never have put me to start with, but he either didn't know about or didn't believe in hormones, I had to find this all out for myself, and really wished I'd known when I started. I was by then desperate to get off them, but realised the only way I'd have any chance of doing that sustainably was to do it really slowly and gradually - I'm NOT a patient person!!!
Anyway - here's the info from the other thread:
Specialist advice generally is that even the Royal College of Psychs revised guidelines are too fast - unfortunately psychiatrists are people who prescribe drugs.
For anyone trying to taper, I'd recommend looking at Critical Psychiatry / survingantidepressants.org / the work of Mark Horowitz / David Healy (sp Healey?) - lots around including on youtube.
Idea generally is to reduce by 10% not more than every month or so - your CNS needs time to catch up and stabilise. That means the reductions get very (VERY) small as you get to lower doses. So it's easier with liquid although there are other options - lots of info on survingantidepressants.org ... Alex venlaflaxine liquid is available, have you tried that for smaller decrements?
There's also a pharmacy that does 'tapering strips' - you need a doctor to order them - and has some very helpful info on the different meds and suggested decrements (including the graph thing I try badly to explain below). www.taperingstrips.nl - search under 'antidepressives'.
What most GPs don't know or understand is that the 'effective mechanism' of all these drugs is on a graph like a hockey stick. So the difference between 0 and a teeny tiny amount or a teeny tiny amount and a tiny amount is massive (a vertical slope up) compared to say between (say) 112.5 to 75 of effexor (brand name for venlaflaxine, nicknamed by medics as side-effexor) - at those greater doses the 'effective mechanism' slope is almost horizontal. THe side effects may reduce as dose reduces, but it's at the lower levels (starting when you get 'down' to what medics often quote as the minimum therapeutic doses) that reductions often cause huge withdrawal issues ... so advice is to take them very slowly and gradually.
'Effective mechanism' is something to do with occupancy/binding or receptors, but way above my head!
Some people are fine doing halving and quicker etc but a lot of people have problems - hence even the RCS updated its guidelines and the Critical Psychiatry movement (all of whom, like Horowitz and Healey are psychiatrists).
The effective half-lifes can vary from hours to days - or even longer for some (and some have complicated functions that mean they get even further extended ... fluoxetine is one which is why sometimes people are bridged from shorter half-lives onto fluoxetine for the later reductions) .. and as always different people react/metabolise differently. Best practice isn't to shorten the hold just because something has a short half-life - but to give yourself proper chance to stabilise after each decrement; it's just that a longer half-life might give you a less bumpy ride / side-effects ... and for those with particularly long half-lives (eg fluoxetine) any effects might only emerge a lot later.
I'm not a doctor - simply sharing some general principles I learned the hard way. But they are very general principles and everyone is different. If I ever again was facing coming off ADs , I'd only consider doing so with some specialist input - and if a specialist wasn't familiar with Healy/Horowitz/Ashton-Manual/taperingstrips.nl, I'd find another specialist - I'd not expect them to agree with everything, but i'd want to know they were aware of the principles/discussions!
HTH and good luck to all
xx
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Hi Holllybol,
Thanks so much for your detailed reply - that's really helpful, I really appreciate the time you're taking trying to help me.
The reason I haven't replied earlier is because I feel absolutely terrible..... every hour of every day is a challenge. I feel frightened/fearful to face even simple taks and those that I do manage are taking forever :(
This isn't funny - I'm trying to function, get my life back on track and look after my child at the same time.
My sleep is great - but too much, still struggling to get up and wake up. When I'm awake I click into "highly tense" mode with shaking hands and hot cheeks, chattering teeth, feeling very thirsty and holding tension in my gut which aggravates my IBS. This lasts all day unless I am with an adult and doing something simple and enjoyable, but I only have this for a few hours each week.
I'm 26 days into cutting Venlafaxine and starting Mirtazapine although I cut back to the very small dose of 7.5mg of Mirtazapine after 11 days because I was such a zombie.
I'm just putting up with feeling terrible in the hope that things will get better. I'm keeping a diary and I've just written in it that I shouldn't change Venlafax until 6th May and Mirtaz until 15th May...... but I have a very important event on 2nd May and I know I'll feel absolutely terrible and I'm so worried about how I will cope. And the idea of not feeling any better when I reach either of those milestones (I honestly don't think I will) is just so horrible to contemplate. These milestones are just dates when I should consider making changes for the better that will take 4 weeks or so to kick in............
Does all that make sense and do you have any further advice for me as someone who seems to react in a very similar way to me and has been through this hell before me?
I really wish I hadn't cut the Venlafaxine at all (just following advice of psych) and I wish I'd gone back up to my original dose of 112.5mg when the psych suggested I should 7 days ago, but there's no point in changing now though I suppose, so I'm on 94mg at the moment.
Thanks for the links to tapering off slowly - I'd found them just before I saw your post - that's VERY interesting and I wish my GP and Psychiatrist knew about these but my GP definitely doesn't and it's v early days with my psychiatrist. I think I understand about the hockey stick, but my brain is so mashed at the moment I don't really understand about half lives and how this affects me and both of these medications.
I'll send you a direct message in a minute.
CKLD: are you still reading this and are you ok.....? - your last message wasn't great so I really hope you are, just message if you need suppport and you're welcome to direct message me too
Thanks everyone xx
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Tnx - replied to your PM
I have an eating disorder from age 3. My weak spot is below my belly button on the right. I don't recognise hunger so if I don't eat little and often my body lacks energy = nausea. Last Tuesday I had a light-bulb moment: we have been going to bed later, sleeping heavily until 9.03-10.00 a.m. so I'm missing an eating opportunity. Now we set the alarm for 7.45 [that's almost 7.30 :o] and I get breakfast at the proper time I am beginning to feel more human with less nausea = anxiety.
Your 'highly tense' feelings may ease if you eat every 3 hours, 24/7. Takes practice I can tell you. The National Association for Pre-menstrual Syndrome [NAPS] gave me that advice in the 1990s, to stop the body losing energy. Once the body becomes depleted those awful feelings may take over, it can take 8-10 days to regain levels.
Take care of you. R U able to not attend the event on the 2nd? I've backed out of many things, even funerals, due to not wanting to upset others if I have to run for cover. Anticipatory anxiety is the PITS! but I am unable to counteract it, I have an emergency tablet to take when necessary. Until recently I hadn't required it for 4 years.
MayB weaning off is something to ring your psychiatrist about this week? Make a list of your queries so that you don't miss anything that you need to discuss. My GP knew about tapering so I had support. For me it was the physicality that was difficult, the 'what ifs' followed .......
Do U have help with child care? It's scary feeling scared! :foryou:
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Hi CLKD,
Thanks for your reply... that's really interesting about eating every 3 hours I can keep a snack to try and do that.
However.... I've done 24 hour fasting in the past (find it very difficult!!) and that has always helped me with sugar cravings and to reset to have a better diet... which is the opposite of what you're suggesting....... so I'm confused (nothing new there!)
I'm sure most of my current anxiety is because the meds I'm on are not right for me in the current dosage or not right for me at all... I just don't know.
I can't get any help with child care unfortunately - and tbh it's being with him that's sort of keeping me going at the moment. I have to go on May 2nd... I'll just have to make the most of it.
I agreed with a close friend a couple of weeks ago that I'm a mentally strong person who's mental strength is being tested to the limit at the moment... it really really is, I can cope with anything but when you have to do it day after day, and those days turn into 13 months.... it's just too much...
Can I ask which emergency med you take to get through situations?
Thanks for your support and the lovely emoticon - that's very cute!!
xx
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Fasting update: in the Sat papers it was suggested that fasting has no impact on over all gut health unless 1 is dieting; because the person continues to eat exactly the same processed foods in the same amounts ::). Of course I've binned the article >:(. We do fast over night so why bother at other times? Me, if I went without breakfast by 11.00 I would be on the floor :o- not a pretty sight ::)
Although as hunter gatherers we would binge/starve as we have evolved socially it's obvious that people in the 1st World sit down to eat at specific times. For convenience; i.e. breakfast, lunch, evening meal ; as well as when eating out with friends.
Many years ago I read about eating 'correctly', the thought being at that time that we should take small amounts off the fork and chew slowly B4 adding more food. Who has time :D. Another thought was to leave the table a little bit hungry. I have found that not having pudding immediately allows my digestive process to work, after 20 mins I probably don't want pudding 'cos I feel full. That doesn't stop me reaching for a bowl of ice cream at around 7.30 ;-).
I will have to search for the packet to find the name of the emergency drug. Could you ask for 5mg of Valium to take the evening B4 the Event? I used that successfully for many years, knowning that I could take another 5mg the next afternoon which I never required.
Sugar cravings - r these cyclical? Since eating less processed foods I feel less likely to reach for the sugar hit, other than a stick of 'twirl' chocolate as pudding. There's a lot of recent research about how commercial foods 'feed' the bodies requirement for sugar :(. [Chris Van Tulekan: it was too involved for me but DH is a scientist so would read out bits of interest that I was able to understand]