Menopause Matters Forum
Menopause Discussion => All things menopause => Topic started by: Lucyjo on October 23, 2017, 07:37:38 PM
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I have been suffering from burning mouth for 2.5 years & I wondered if anyone else had found a cure??
If so, I would be most grateful if you would share it!!
At present I take low dose amitriptylene which just makes me sleep & get fat.
I also take citalopram. I am 54 & not sure where about I am in meno as I have Mirena coil, due to be removed after 7 yrs.
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What is in your toothpaste? There are certain things that can cause a burning mouth, for me it was after cleaning my teeth: chocolate and bananas reacted instantly. Can't remember what the product is though :-\
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Sodium Laurel Sulphate
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My dentist diagnosed me with this but it didn't last long. But when I was looking for a cure it just said low dose ADs were given x
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I have these from time to time. Really help dry mouth
Gingigel is good for sore parts of mouth too
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Thank you everyone for your support! I will try it all - I am so desperate!!
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Has anyone found that HRT helps BMS & if so which sort?
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My BMS is much better on HRT....not sure it matters which one as it's the oestrogen but I use oestrogel.....I was also low in ferritin / B12 / Vit D so all these need looking at with BMS.
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Just seen my GP. She is swapping the amitriptyline for nortriptyline. Has anyone tried this & did it help?
She has also prescribed vagifem tablets - any comment on these??
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Vagifemis essential to keep the vagina tissues supple so that they itch less. There are several threads here to do put the product name into the 'search' box - take notes ;)
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When whatever I had (that the dentist thought was BMS) I had sores on gums and back of throat that looked like when a hot pizza burns it. Plus metallic taste. I'm going through a sore mouth phase again now, not BMS just ‘sore' x
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Always a possibility. I've not had my levels checked for a few years x
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I think mine is oral B sensitive. My private dentist I was going to recommended it and it definitely helps
I'm due a blood test sometime this month so I might ask if they can add in B12 test too x
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Hi Lucyjo. I started with Vagifem earlier this year after six months of constant UTI's and the forum gave me the confidence to go ahead even although I was worried that my mum died of breast cancer. It has really made a big difference, that and decafinated coffee which the consultant recommended. As to the burning mouth. Try not to eat acidic fruits as they will not help. I also have big problems with pineapple nowadays too which I never did. The joys of meno NOT
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Thanks Sparkle - will be starting the vagifem tonight! Hope it helps with the constant weeing!
As far as the BMS - my mouth looks perfectly normal.
My tongue & roof of mouth burn like crazy & feel dry & uncomfortable all the time.
Hope the nortriptyline will help xx
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GP said use one every day for one week then just 2 per week.
Go back 1st December to have mirena removed - hopefully she can get it out this time, after using these!
I forgot to ask - do you use them at night or in the morning?
Thanks x
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Hi Lucyjo. You should definitely be doing a two week load not one week and then as prescribed. I do Mon, Wed, Fri and I do this at night. I don't keep the patient information sheet nowadays but the two week load info will be on there for sure
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Thanks Herdwick - I will take your advice xx
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Hi Annie 0710 - The toothpaste you recommend for burning mouth, is it Oral B sensitive plus gentle whitening?
Many thanks Lucyjo x
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Hi Annie 0710 - The toothpaste you recommend for burning mouth, is it Oral B sensitive plus gentle whitening?
Many thanks Lucyjo x
No sorry I misinformed you. I did a home delivery last night and it's Colgate sensitive pro relief x
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OK thanks - I'll try that x
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With regards vaginal atrophy treatment some ladies need nightly or alternative nights. It is what keeps us the most comfortable!
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Ok thanks - will see how it goes!
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SLS. ;)
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Has anyone tried duloxetine for burning mouth?
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Hi, I just wondered if anyone has found a cure for burning mouth syndrome?
I've not posted for a while - just too depressed.
Thanks,
Lucyjo
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To my knowledge there's no cure but gps say ADs can help
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Just had a thought Lucyjo. Do you use a mouthwash? I ask because I do and had a lot of trouble finding one that did not make my mouth sore. After trialing quite a few different makes I now use a Colgate one which is mild and only use it at night not in the morning and have not had any problems since
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Lucyjo - are you taking hrt?
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Started on vagifem 10mg twice per week 3 months ago - to enable GP to remove merina coil!
Coil now removed & still using vagifem but no actual hrt.
Thanks for helping x
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I've not used a mouthwash since I started with BMS.
I will try the colgate one though - thanks x
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My mouth has been sore this weekend, can't fathom why.
What are you taking for the depression?
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I'm taking Citalopram 40mg.
Have been on it for years - way before the BMS x
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Saw GP yesterday & she has told me to stop taking Citalopram (reducing over 2 weeks) then stop Nortriptyline & after 2 days take Duloxetine 60mg once a day instead of the other two.
Does anyone have any experience of duloxetine & did it help burning mouth syndrome???
Thanks x
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Be very careful with duloxetine, has a black warning in the US I believe as it is highly addictive and very hard to get off of.
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Hello Lucyjo
I am struggling badly with extremely dry, burning mouth at present and I understand the depression as I have constant anxiety with this and seem to shake most of the day. Waiting for an appointment with maxillofacial to try and possibly find the cause for the dryness, maybe your Dr could organise this for you? I have been using Xyilmelts for the dryness and they have been helping, but today from Boots I have ordered the entire Biotene range for dryness and burning, which includes a mouthwash. Maybe they would be of use to you. I am here if ever you need to talk (as I know the other ladies are), this is completely depilating as I no longer know what to eat or drink for the best!
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Since doubling my oestrogel from 1 pump to 2 a day , my burning mouth has hugely reduced in the two weeks I have upped the dose .
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Hi Knorman,
Thanks for that! I saw a maxillofacial about 2yrs ago & he prescribed the Amitriptylene - which I have been on until last autumn when the gp changed them to Nortriptylene. Neither have done much I'm sorry to say. I will give the Biotene a try.
Maryjane, I asked for HRT again yesterday & she told me to try these duloxetine instead!
So fed up with this x
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Duloxetine over HRT mad ....I would seriously educate yourself on duloxetine ( i admin a pain group and see what this drug does ) .
If you want HRT then pushbfor it take the NICE guidelines look up burning mouth and menopause very common , I would be making noises and complaining.
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Morning Lucyjo
I had been on 20mg amitriptyline for 10 years with no problem with dry mouth apart from first couple of weeks. I went cold turkey few weeks ago and very next day, dry mouth had gone. Was like it for a couple of days and then something from the dishwasher set it off again, absolutely gutted! It seems that it is the dry mouth that causes discomfort, burning and stinging. It is all very complicated isn't it and we are all different in how we respond to medication. I'm trying not to hold out all my hopes on the maxillofacial! I may have missed something somewhere, so apologies for asking, but why won't your Dr prescribe HRT? Boots order is in, so looking forward to picking that up later!
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Morning Knorman,
I really don't know. She just goes on about blood clots & breast cancer - I don't have any connection to either! I also still have periods - if that makes any difference, despite being 55!
I don't know if to take the duloxetine now following Maryjanes post - there appears to be very mixed reviews.
Got 2 weeks to decide whilst coming of citalopram & nortriptyline. This hideous condition takes over life doesn't it?
Please keep me informed about the biotene. So glad to talk to you. Was the amitriptyline you took not for burning mouth then?
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Lucyjo this site I have just posted is excellent , owned by a NHS/ private GP re HRT.
Read through it and go armed , your GP is actually all about her opinion and not evidence based IMO.
Also having periods is irrelevant , I have my own natural cycle still.
This GP herself is on HRT.
Also along with hormones BMS can also be caused by B12 and ferritin deficiency.
Just to quick to put very addictive drugs on patients.
https://menopausedoctor.co.uk/
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Hi Maryjane,
Thanks so much for that, I'll read up! x
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Hi Lucyjo - coming late to this thread. I see you had the Mirena coil and it was removed after 7 years and since its removal you have started having periods again - is that right? Are they regular or has your cycle gone haywire without the Mirena? If your cycle is irregular then you are definitely peri-menopausal and your age would also indicate that. If you have been taking the ADs and nerve pain meds then these might be reducing or eliminating the hot flushes you might have experienced due to menopause. While it's great that you may well not be expereincing them, it is these obvious symptoms which persuade docs to prescribe HRT - and it can be difficult sometiems it seems, just to get it otherwise - although it shouldn't be!
I'm not clear why your doc is prescribing duloxetine? if you have long-standing depression which has nothing to do with hormones, and for which you have been taking ADs - then presumably you will continue with something - but if they are for menopausal symptoms or hormonal anxiety and other symptoms then HRT is more appropriate as Maryjanes has said.
If you are having erratic heavy bleeding without the Mirena then also might be worth having a word with the doc to check all is OK with uterus - but you may just be a late menopauser. There is also a thread for women like you ie menopause over 55! https://www.menopausematters.co.uk/forum/index.php/topic,36765.msg610539.html#msg610539
Hurdity x
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Thanks Hurdity you are so helpful! I have been on Citalopram or similar for 20+ yrs for depression/anxiety.
But only got the burning mouth approx 2.5 yrs ago - then started the amitriptylene as well, at night.
I keep thinking if I could get rid of the BMS I could cope better with the depression etc as it is ruining my quality of life & my family's. My periods have been regular since having the coil removed, but they just seem like another burden at the moment.
Thanks again x
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Out of interest - does anyone know when we should get the MM magazine????
Thanks, Lucyjo
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Morning Lucyjo
Speak to your Dr about maybe coming off the amitriptyline. I took 20 mg per night initially for back pain, but as a really bad sleeper, they did help to relax me, which may be why they were recommended for your BMS. I know anxiety makes it worse. I have taken a long winding, road to BMS, so not sure at this point if it is even due to hormones. I had been taking amitriptyline for 10 years and initially it gave me a dry mouth (it is one of the known drugs for causing this), but didn't notice it after a couple of weeks. Since having BMS, I saw my dentist and he explained I had an extremely dry mouth, I went cold turkey coming off the amitriptyline (and the occasional zopiclone), had the most horrendous, anxious night as I had nothing to help me sleep (the night heats are atrocious at the moment), but kept going at the thought that the amitriptyline at this point, may be make the BMS worse. Woke up with an extremely dry mouth, but it was a 'normal' dry mouth and I knew something was different. Got up, started my day and I was about 80% functioning better. I was extremely happy, the sun was shining and the birds were singing. A perfect day!Then I had the incident with the water bottle top, I think it was something from the dishwasher on there, it tasted chemically and of salt and bang, back it came. You will be able to imagine how I felt after having 2.5 days with a practically normal mouth. Anyway, please excuse the rambling! Upshot is, the amitriptyline may be contributing. The Biotene I would recommend, felt vey nice to coat my mouth yesterday and stopped the stinging/burning, it also encourages saliva due to Xylitol and would also recommend Xylimelts (Amazon) if I haven't already. I was also still having periods at 55, had an ablation and hysteroscopy (due to flooding and what felt like labour pains), they came back for a couple of months and then mine finally stopped at 56 and period free now for 17 months. We sound very similar! I understand about the quality of life, I have only had this a few months and I am losing weight due to not being able to eat things I usually eat, ie spicy food and the odd cake, I'm not even able to have a cup of tea as it dries my mouth out too much, which it didn't initially, so I am well and truly miserable and finding it hard to stay positive. I get panicky if I am seeing other people as talking is extremely uncomfortable and that of course makes everything worse. At the moment everything feels like a really vicious ever decreasing circle and I don't know what to do for the best, but I do hope maybe some of the things above will help. I never know when the MM magazine is due! Sorry for the long post and thank you for the late menopauser link Hurdity.
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HI Knorman,
Thank you so much for that! I have been for reflexology this morning - first time & am going to give that a try for 3 more sessions. I am now on 20mg of citalopram daily & 25mg of nortriptylene at night, reducing the citalopram to 10mg on Thursday for 1 week then stop citalopram & nortriptylene, & take 60mg of duloxetine daily.
I am going to Boots tomorrow to get the biotene toothpaste & mouthwash. Feel like I'm on a mission to get rid of this once & for all - it'll probably all end in tears though! I have been thinking of postponing the duloxetine & see how I get on, having seen the worrying side effects. I will also try the xylimelts. Take care x
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Hi Lucyjo
Strangely, as I had another sleepless night last night, I wondered if acupuncture might help. I am not able to work at the moment due to CFS/ME and really cannot afford it, but like you, on a mission! I hope everything you are putting into motion helps, I think it helps also when we know we are trying to help ourselves. You take care too! x
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Morning Lucyjo
I have hopefully found something natural to help with the dry mouth...raspberries, the tarter the better. They are used in the Xylimelts I mentioned, so I thought I would give them a go. The tartness is producing saliva and also, making my mouth feel 'clean' for the first time in ages. Worth a shot!
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Thanks knorman, I'll give them a go!
Got the Biotene mouthwash yesterday so trying that as well.
Down to 10mg Citalopram for one week from tomorrow - see what reactions that brings!
Take care & good luck with the raspberries x
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Hi Knorman - did you find the Biotene stings your tongue like mad?
I expected it to be very gentle for some reason!
Maybe it's doing some good if it hurts x
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Hi, just read through some of the previous posts about Duloxetine. It can also be prescribed for neuropathic pain so perhaps that is why the doctor has decided to try it.
Remember none of us here are experts and we only have our own experience to base advice on. Make sure you balance it with what to find for yourself plus what the doctor says. :)
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Morning Lucyjo
The first time I used it didn't, but then it did. I am going to going and have some in a minute. Did your mouth feel more lubricated after? I always like to think that if something is unpleasant it must ne doing some good!
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Hi knorman,
It was very stingy for a while after - worse than before I used it.
Haven't used it today - too depressed!
Just received the MM mag & when I saw "burning issue" on the front I was so excited - thought it may be about burning mouth - but it wasn't unfortunately.
If you don't mind me asking - do you take hrt??
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I am so sorry Lucyjo, I feel I made it worse for you :(.
I received MM yesterday and like you, though aha! maybe some answers!
HRT started this problem for me. After 3 weeks my night heats had gone and something began to lift, bliss, and then 3 1/2 weeks in, my tongue and lips started to burn and tingle. When I stopped the HRT, the sensation started to go away. Something obviously upset the balance in my mouth as since then I have had all sorts of problems with different things. We tried 3 different types of HRT, all with the same effect. I have oestrogel and utrosteone waiting for me upstairs, but waiting until I have allergy tests in May before (if) I start with them.
Do you think if we put a request in a post for an article on dry, burning mouth in the MM it will be picked up?
I am so sorry about the mouthwash Lucyjo xxx
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Knorman, please don't blame yourself - I am happy to try anything - I will give it another go maybe tomorrow.
Just fed up today!
I did put a request in to the magazine a while ago - so maybe if a few people do, they may look into it for us.
I did pay £25 to menpause matters for help but don't think it helped that much - can't really remember & I must have deleted it some time ago.
Take care x
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As I understand it, BMS is common in perimenopause and menopause as high estrogen means B12 can't function as well and so we go into relative deficiency. B12 deficiency can cause all sorts of neurological symptoms, of which a sore tongue is one. It may be addressed by taking folate and methyl B12, which will also help address anxiety, depression and digestive issues. One might argue that oestrogen dominance = B12 deficiency = many perimenopause symptoms! If you were B12 deficient before peri, this will get much worse. Having a serum B12 reading in range does not mean that you have sufficient B12 at cellular level, but doctors get this wrong. I have a serum level massively over range and yet I am deficient, as witnessed by BMS and many other neurological symptoms.
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Hi imgeha, please could you tell me exactly what B12 etc I need to take for BMS? Also did it cure yours? I'm so excited that you may have given me a cure! I have just started a multi vitamin for over 50s women - but if you recommend something different I'm more than happy to swap. Can't wait to hear from you - Lucyjo
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Hello Lucyjo
B12 deficiency is a whole story .... from types of B12 (methyl, adeno, cyano and hydroxy) which suit different people, to method delivery (injections, sublingual, transdermal oils, patches) and co-factors (folate, B1, B2, iron). The easiest thing would be to get some sublingual methyl B12 - say 1mg - and keep it in your mouth between gum and cheek for at least half an hour. If after a few days you get some relief from BMS then you know you are onto something. There is lots of reading to be done, and probably blood tests too, to see where your serum B12 is at, although taking the sublinguals will push the levels up very high (although your body won't necessarily be able to use it) and GPs will see this as the real level and take no further action. I would get blood tests done first, see where your B12 is at, do some research around this result (plenty of FB groups on B12 deficiency which will guide you) and take it from there. I have had B12 deficiency, and BMS for 14 years - really only just worked it all out. I am using B12 oil, and thinking about injections. My BMS is much better, but not gone. Neurological damage (which BMS is - damaged nerves) is irreversible after a certain point, so it is best to treat it quickly. Not leave it 14 years! I'm not sure I will get rid of mine completely, but I'm going to give it a good go. Also, I would say your multi vit is probably not going to do you much good.... Here is a link to get you started. http://www.b12deficiency.info/b12-facts/
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Imgeha, I have just had normal B12 and folate blood tests, both came back within the normal range, but do I understand that this may not be enough investigation into B12?
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What was your B12 result? It may be normal and within range but not optimal. Some countries aim for much higher rates than we do in UK.
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Hi Dotty. It was near the top in the range. It was a long shot. Just keep hoping that one day I will wake up with a 'normal' mouth as I'm sure Lucyjo is too!
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Morning ladies what about trying the b12 spray ,you just spray into your mouth/check and it bypasses the liver this way so you actually get better absorption rates,you can buy it on amazon at a really good price I use it I also use vitamin d3 / k2 oral spray.good luck xx
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Knorman - having a result near the top of the range doesn't mean very much unfortunately. It can mean that most of the B12 in your serum is inactive. It is possible to be within range or even over it, like me, and have a B12 deficiency. There are other B12 tests which are more accurate (active B12, MMA), but the doctors often see a false "normal" result and go no further. Ultimately, B12 deficiency leads to dementia - we all need to remember this. B12 deficiency is no light matter. If you have symptoms of B12 deficiency despite a normal serum result, you need to push for other tests. GPs really don't know what they're doing on this issue, and there are many many people dangerously undertreated.
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Thank you for the information imgeha. I don't think my Dr will go for these tests, but I will keep them in mind
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Hi Knorman, I'm thinking of trying the b12 spray, as recommended by Daisydot - I'll order some today & let u know!
Thank you to everyone for your suggestions xx
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Thanks Lucyjo, look forward to hearing from you x
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B12 spray should arrive tomorrow. Not taking any citalopram or nortriptylene for two days now & should start the duloxetine Saturday, so we'll see what happens then!!
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Dear Ladies - I need some advice!!! I stopped the citalopram & nortriptylene as directed by GP. Have had 3 horrendous days - dizzy, headache from hell, feeling sick, light headed. Took one duloxetine but felt too ill to take another - don't think it was that but read reviews & got scared & just didn't want to risk any other pills, thought I had done 4 days should I sit it out?? My tongue is pretty much the same - on or off them. Please help - would you push for hrt again? Got an appt with different GP at 3pm today xx
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Hi Lucyjo. If I don't know your history but if you are suffering with menopausal symptoms then hrt is the answer not anti depressants.
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Morning Lucyjo any improvement with the B12 spray? I have used the Biotene again, in a smaller dose and it hasn't been stinging, so may be worth trying again? I saw the Maxillofacial surgeon last week, I'm going for further tests so he can rule certain things out, but he thinks when I started HRT it has kick started something off and will eventually go, he just doesn't know when. I have never known this happen to anyone else and so would definitely recommend HRT if you are able to take it, it was wonderful for the 3.5 weeks I was able to take it. he did suggest I start taking zinc as it has helped other women that he has seen.
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Hi Knorman, I've had a horrendous couple of weeks. Saw the different GP on the monday who said take no pills at all & ring him on the thursday. By the Tuesday I thought I was dying! Rang & spoke to duty doc who said take a duloxetine straight away 7pm ish & another next morning. I have taken 1 each morning since & am slowly feeling like normal - burning mouth still there but not suicidal - he said it was seratonin withdrawal. Haven't really bothered with the spray just busy trying to get life back to normal - wish I had stayed on the citalopram & nortriptylene. Got a family party coming up this month & dreading it - everything is too much effort. Sorry to moan on XX
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Hi, I have had all the mouth issues including burning tongue and can honestly say there is a vast improvement since going on to the hrt patches. I started with fem 7 sequi but they are useless at sticking ,so changed to evorel with separate prog.I know what you mean about everything being too much effort! Please give it a go it really helped me although I don't feel normal,don't think I ever will again! x
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I am pleased to hear that you are slowly getting back on an even keel Lucyjo, I know it is hard. We will feel normal again one day, its just going to take us a bit of time. I had started to isolate myself even more as it is uncomfortable to speak with the dry mouth, but the surgeon I saw did wonders for sorting out my head. I have a way to go and not sure I will feel completely mentally better until my mouth is better, but he reminded me that I have one life and to go and live it, tricky with CFS/ME as well as menopause, but he is right. I too was dreading a family day on Easter Sunday and even though I wasn't feeling very well, I went. Please go to your party, even if it is a huge effort, you will be chuffed with yourself the next day. Don't give up. x
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Thank you AnnieR & Knorman, don't know what I'd do without this forum xx
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Still feeling pretty rubbish! 3 weeks into duloxetine but have also had a really bad cold, so not sure if it's the pills or the cold giving me the lethargy & dizziness & depression. If I feel no better at the beginning of next week, will go back to GP. I do think my burning mouth may be a tiny bit better though, since taking the duloxetine, so I don't really know what to do. Have a good weekend everyone x
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It seems like you are between a rock and a hard place, which happens to a lot of us at the moment, that vicious circle that we do not know how to break. I think you may have to sit the cold out and then see how you feel. I don't know how the weather affects your mood (my OH says I take the weather personally!) but we are due some nice weather soon and hopefully that may help your mood. I think a lot of us are probably struggling with low mood at present (I know this is different from depression), due to the fact we have not seen the sun in such a long time.
Once the cold goes you'll be better placed to see how you are and may find that your mouth feels even better, which would be brilliant. In the meantime, if you are able, hunker down and rest if you are able and spoil yourself a little. x
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Knorman you are so kind - thank you. Maybe things will soon get better - they can't get much worse!!
Take care x
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Hello AnnieR
I too am suffering from Burning Mouth Syndrome and I was interested to read that you are on Evorel Sequi HRT as I've just been prescribed the same HRT option this week. I have to cut the 50 patches in half (so a 25 patch on Monday and I popped another 25 patch on last night) as I have endometriosis and my GP doesn't want to trigger anything off in connection with that. I'm doing 4 weeks on half patches of Evorel, and then another 4 weeks on Evorel Sequi, so my build up is a slow process.
Do you mind if I ask what dose you are on and how many days/weeks it took for you to notice the difference in your BMS symptoms? When I popped the first patch on, on Monday night, I woke on Tuesday morning to very little burning, I couldn't begin to tell you how happy I was!
But alas, that was short lived as the pain came back that evening and has been pretty constant since. I stuck the second patch on last night and it does feel a bit better today but all the symptoms are lurking, just waiting I think to develop as they day goes on. I know it's very early days for me but would love to know how you're getting on which would give me some hope that this is the remedy for me too.
Many thanks.
Pamela
x
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Hi Pamelapitt I've been bad for months with sore tongue and burning mouth and I have my own theory lol.I picked up a packet of opal fruits at the checkout last week,I hadn't had for years, and that night watching tv I had a couple,I can't begin to tell you the difference in my mouth,by day two most of the pain and burning had gone and my tongue went from furry grey to a nice healthy pink again.I think I may have had a blocked saliva gland and the sucking and chewing of opal fruits may have reactivated it .I don't know for sure but something certainly worked day 6 now and my mouth is much improved.This burning mouth syndrome only happened after I started the oesrtogel coincidence or not I don't know but it'd be great if any of you fancy trying it to test the theory and see if it is the hrt causing blocked saliva gland
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Morning Daisydot my BMS started when I took HRT. Fine for 3 weeks (Bliss, no more night heats and my joints worked and something in my mood lifted) and 3.5 weeks in the burning tongue, lips and dry mouth started. It was so bad I stopped taking it, but it was enough to cause all sorts of problems for me. Been left with some after effects still, but much, much better than previous. I have CFS/ME, so my immune system doesn't work properly at the moment and it seems the HRT set something off. My maxillofacial consultant has now signed me off, but advised against taking HRT. Gutted, I loved it and would take it like a shot if ok for me. I like the Opal Fruits theory (they will ALWAYS be Opal Fruits)! x
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Hi knorman.good to see you back posting
Missed you.x
Quick run out and get the opal fruits lol.
I'm glad you've finally got some relief but so sorry it was at the expense of the hrt it's a hard battle for you.its a bit like the vagifem I know now that's what caused the breast pain so I've had to cut that right down and use all my other tricks but there's no doubt in my mind that was the problem it can't be a one size fits all mentality with drugs of any kind because new reactions will occur with people so you can't just say oh no that's not a side effect it's just maybe not a " known" side effect.anyway I intend to keep sucking away.teeth in or out doesent matter lol.keep well and keep posting xx
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Funny you should say that. When I was having the problems with my mouth, which I KNEW was the HRT as it started to go when I stopped taking it, the HRT specialist who visited my Dr surgery said there was no way the HRT caused my symptoms. Yep, not a 'known' side effect!
Thrilled with my FitBit, but still not monitoring my sleep. I'm scared of it vibrating and waking me up if I do manage to drop off! Take care xxx
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Knorman fit bit stays silent at night 😊
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I also have a sore tongue 👅,only since starting oestrogel,I was fine on tablets,patches and sandrena gel xx
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Hi knorman use your Fitbit to monitor your sleep and heart rate it'll surprise you and as MJ says it doesent do that you'll not even realise after a couple of times doing this that you have it on and simply sync with your app in the morning and it makes you feel reassured if anything you'll see.xx
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Hi Lisa I predict there will be massive increases in sales of opal fruits lol.
I'm going to watch everything I take from now on and trust my instincts we can't all be wrong.xx
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Hello Daisydot,
That's great news you have managed to find a solution to your burning mouth, and even better your cure is a fine sweetie! lol I haven't had Opal Fruits for years, but I'm willing to give anything a try to get rid of this blasted misery and get back to a tongue, gums and mouth that feels normal again!
I've had this for a couple of months and have tried and tested the various potential solutions as per Dr Google, I'm now swimming in B12 and other vitamins, I've gone back on my acid reflux tablets as I thought acid was maybe burning the back of my throat and I've tried layering coconut oil on my tongue (waste of time, and I don't even like coconut!). I've seen GP, Dentist, Maxillofacial and Neurologist as I've had various weird things going on since the New Year so I'm slowly ruling everything out. BMS was the last symptom I got, my first symptom was pins and needles in my chin, followed by burning through my whole body, then finally burning in the mouth, all of which I still have (along with various other symptoms).
I guess I'm at that "magical" age where everything seems to go pear shaped so I went to see a Menopause GP who was excellent and just speaking to her made me feel a bit better in general. I'm hopeful HRT will work for me, but at the same time, I'm trying to be realistic in case it doesn't. It seems with BMS you need to get to the primary culprit and that is difficult to diagnose, I'm hoping the menopause is my primary culprit and that the HRT will work. If it doesn't work, then it's something else that's causing it and I've pretty much exhausted my options..
Not sure if it's helpful to anyone, I'm a newbie on this site and it's maybe been talked about before so apologies if I'm repeating old news, but there is one test I read about that might be able to help and it's HSV Type 1. It's the herpes virus that can cause cold sores, etc... I've read that can cause BMS and people diagnosed with this virus has been treated with antibiotics and in turn, their BMS has disappeared. I haven't gone down that route as I'm trying the HRT and I've never had cold sores, but apparently you can still have this virus without developing cold sores. Maybe worth a google ;o) (I don't advocate googling in general, I try not to do that anymore as I turned myself into a quivering wreck a while back reading all the scarey stuff, but just putting that wee suggestion out there in case it helps anyone).
Enjoy the Opal fruits, and the burn free mouth (that must feel like heaven ;o))
Pamela
x
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Hi pamabz and welcome and you post what you want to we can always learn from “ newbies†I still consider myself one lol.
First of all for any one reading you can report these possible side effects under the yellow card scheme I'm going to do just that later as I think it's important so we help other people,I don't care If its not a recognised symtom if it's happening to me then that's real enough for me and it could put other people's minds at rest.
Pamela I'm already a member of the U.K. herpes association based in London and their website has a wealth of information and I used to get the worst ever cold sores which was what drove me to them as I was worried I had genital herpes which in fact turned out to be v.a and it was advice from there that pointed me in this direction.There is masses of info on it and they're quite a sociable group with hidden Facebook account and they do regular meetings for people who are interested.I suppose ,like hiv,it's difficult for single people dating etc with these viruses so they tend to focus on helping with that quite a bit and I'd say don't be scared of google it's a massive boon so long as you use the info wisely if you know it sets your fears racing then avoid it it's that easy.
I hope your hrt does work for you and if not don't give up stay on here and talk to like minded women who will help you keep your sanity when your gps have long since given up on you.xx
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Welcome pamabz!
I read the same article when I was researching my BMS and I know I have the herpes virus from having cold sores. I didn't mention it to my consultant as he did such an amazing job of reassuring me that all would be well. Apart from sorting out my head! he advised to take zinc tablets as they sometimes help this condition. I tested for zinc and although in the normal range, I was right at the bottom of the range and have been taking it ever since. Will have blood test again once used all zinc tablets to see if I have absorbed it. My mouth and tongue is so much better (still not back to normal, but manageable) and whether it is down to zinc and/or the fact that he managed to calm my extreme anxiety (which of course does not help any situation!) I do not know, but anything is worth a try. Especially Opal Fruits! x
Maryjane, my friends FitBit went off at 05.45 (I had sent her an email....) and woke her up! I wouldn't have sent it, but I didn't think they were supposed to go off until a certain time in the morning, so that has put me off again. Thank you for trying both, maybe I will attempt it one day! x
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Hi knorman just turn off your notifications and that won't happen.
So glad to hear your tongues easing up it's the most horrible thing to suffer from I originally thought it was my cut tongue causing it all and doctors were no bloody help at all.Theres a massive difference in my tongue now and I'm going to drop the oestrogel down to one pump alternate days now and see if I can cope with that.stellajane does that so as to be on minimum possible dose so I think that's a good idea and well worth trying rather than just stopping as I don't want the sweats back.good luck xx
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That is very good news to hear that your tongue is much better. This is a very distressing disorder isn't it? My night heats have disappeared for the odd few nights here and there, with the evening ones disappearing completely, so hopefully maybe things are on the wane. I have had them every night and evening for last two years, with no let up, (they were sporadic for two years before that) most women's seem to come and go, not be a constant. I've still got all my HRT upstairs, including the gel, which was going to be my next attempt. Oh I miss it so much!
I thought I managed to turn off all my notifications (I have to take scheduled rests during the day for CFS/ME), but I still get 'buzzed' when I am resting. Probably me, useless with techy things, even though I used to have quite a techy job. Enjoy your weekend girls! x
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Morning Knorman and Daisydot
Thank you so much for your encouraging words of wisdom and I'm delighted to hear you are both feeling so much better! That gives me hope!
I read about the zinc connection too so I'm going to give that a go.
Would you be kind enough to let me know how long you had the bad symtoms before they started improving?
I also totally agree with the whole anxiety and stressing thing, it definitely makes all the ailments worse so I try my best to switch off to everything when I can but The bad days do creep in now and again.
Thanks again for replying to me, your support is very much appreciated!
Have a great day in the sunshine ☀️💕 x
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Hi Pamabz,
I am on the evorel 50 with separate utrogestan, I'm sorry I can't quite remember how long before my tongue felt better but it certainly does and I have been on hrt a year. I also take ranitidine and a probiotic every day. I remember when my tongue was unbearable I used to sprinkle a bit of sugar on it just to get some temporary relief!!
Stick with the patches and hopefully you will see a difference.
Annie x
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I have been taking duloxetine 60mg instead of citalopram & amitriptyline, and my bms does seem somewhat better.
Still there but not so bad as it was.
Still suffering with awful va - going to ask for hrt again!
Tried most other treatments.
If anyone can suggest what hrt I need.
Also, will my periods start again ( last one in Feb.)
Thanks x
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Morning Lucyjo.Looks like you need some vagifem pessaries to help with the v.a you'll do a two week load ,which means one pessarie nightly for two weeks,then you'll reduce to two or three weekly and this is for life it doesn't get any better it just gets manageable.
My bms and sore tongue is now 99% improved.I reduced the oestrogel to alternate days, one squirt,and same with the vagifem I've reduced to twice weekly instead of every night and I'm definately seeing an improvement in the breast pain and mouth problems.
I understand that everyone experiences different side effects with meds of any description,my sister is a pharmacist and is always a good source of information for me even though she's retired now.
I need to go stock up my opal fruits today and I'm going to see if I can find spangles too lol.xx
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Morning All
Another sunny day, trying for a day visiting open gardens in a village near us. Love nosing rounds peoples gardens and helps ward off the old anxiety!
Pamabz, a quick (!) run down of what happened. Started HRT last November. Bliss. 3.5 weeks in started getting a burning tongue and lips, with a lot of tingling, mouth also felt very dry (which is when I turned to this forum, thank you all). Stopped the HRT, symptoms started to go and then about every six days, I would 'do' something that would set it off again, things that hadn't been a problem before the HRT, such as taking my Vit C powder. The anxiety then kicked in and my mouth became drier and drier and then the roof of my mouth started to sting badly. HRT well out of my system by now (evening and night heats returned with a vengeance). Saw my dentist who said mouth extremely dry. Decided to stop taking Amitriptyline 20mg (and the odd sleeping tablet) and two days later I could feel the saliva glands under my tongue producing saliva. One very happy girl. Two days later, something started it all off again and I went downhill rapidly from there. Throat started to burn, roof of mouth stinging, my tongue felt as if there were 'hairs' standing up on it when I tried to speak and started to have near panic attacks (again, much help received through this forum, practically and emotionally).Referred to maxillofacial surgeon by Dr, but my appointment didn't come through. I went private in the end as it felt as if I was heading for a nervous breakdown. Max Fax consultant sorted my head, he completely understood menopausal women as well, which in turn helped my mouth as the anxiety lessened. I knew the anxiety was making it much worse, but until I spoke with someone medical to help with all the issues I had, I had nothing left in the tank to help myself mentally. When mouth was at its driest, I used Oxylimelts, which helped stimulate saliva and helped control the panic. It does seem that it is the sugary things that have been helping everyone, it does stimulate that saliva! 8 months later, much, much improved, but I have been left with my brain 'thinking' my mouth is dry, which Max Fax says will go eventually, but I always tell myself that my saliva glands ARE now working and my mouth, although not normal yet, feels so much better and I can cope. There was much more to it than this, but it is a long post already for you to read, but I hope there are things you can pick out that will help. If possible, I would see if your Dr will refer you to Max Fax consultant, I wouldn't be as well as I am now without his help. I did go private (even though funds are very tight, best money I ever spent) and I did manage to pick the very best one for me. He was fantastic, kind, wise, with a great sense of humour, which helped tremendously. I went out the other evening and realised I hadn't taken the oxylimelts with me. I never use them now, but take them out for reassurance, so I think this says a lot! Sorry for long post and please, no one be put off HRT by my post, it appears my system is sensitive to medication at the moment because of CFS/ME. I would take it like a shot if I could. Lucyjo, there are some extremely knowledgeable women on here regarding HRT (hello Hurdity), but your Dr should be best placed to help you initially and then the forum is excellent for any subsequent HRT issues. Good luck! x
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Daisydot, imagine what tangy Haribo would do! xxx
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Don't knorman it's making me giggle at the thought of me speaking like a ten year old girl lol I love those adverts.
Great post knorman xx
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Hello AnnieR, Knorman and Daisydot,
Thank you so much for your posts over the weekend, they certainly made me feel calmer about the whole BMS pain so I'm very grateful. You wonderful, kind ladies have helped me with my anxiety far more than some of the medical field I have gone to see so thank you :-*
AnnieR - thank you for replying to my message, I will certainly keep going with the HRT patches, I'm only a week in and on half doses so I guess I need to be patient (a word I'm becoming more used to but still not very going at carrying out! lol) but I do hope that the patches will help my BMS and hopefully it will go eventually.
Knorman - I totally agree with Daisydot, that was a very helpful and hope inspiring message you wrote, thank you to you all for taking the time to share your stories, and more importantly handy tips!, with me and the rest of the forum. I'm glad MaxFac helped you Knorman, I was actually at a MaxFac Consultant last week. Unfortunately, I can't say I had the same success with the gent I went to see, he was helpful to the point that he could confirm there was nothing sinister in my brain MRI (the Neurologist had already confirmed the same thing to me a month earlier) but as for the pins and needles in my chin, and the BMS, he couldn't really advise why I was experiencing this or what to do to help, so was a bit deflated with him.
However, I also went to see a Menopause GP and she was wonderful, putting my mind at rest and reassuring me that what I was going through is mostly Menopause related. Since meeting with her, that has helped my mindset so much and my anxiety, although still quite high, has reduced to a level that I can function with.
I totally agree with you Knorman, anxiety and stress makes the pain a lot worse, so I'm trying to control that as best I can. Just one quick query if I may, I noticed you had been on Amiltriptyline and I'm also on it, 20 mg daily to try and block the pins and needles sensation in my face however 4 weeks on and no change to the sensation as yet (I believe it can take 6 - 8 weeks for the tablets to work but I did think I would notice some difference by now). However what the tablets are doing is giving me a dry mouth! Do you think the Amiltriptyline adds to the BMS, or there's no connection? I did get BMS before going on the Amiltriptyline so it wasn't the cause but I'm just wondering if it's adding to it?
Thanks again ladies and I hope you are having a good day.
Take care.
Pamela x
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Morning pamabz
I am very pleased to hear that the people you have visited have helped put some fears to rest and therefore lessened the anxiety. When the max fax signed me off, he did say that I would still continue to have some strange sensations orally (they will go eventually) and I don't get pins and needles as such, but the area around my mouth still 'tingles' sometimes.
I have been able to ignore all sensations now, even though I still notice them, as I know that none of it is permanent, it will go away eventually. Being lucky enough to have the right people to help us at this time of life makes all the difference and most surgeons are very matter of fact, they are probably not going to take the time with the anxiety, if indeed they even notice it, or the menopause! However, knowing there is nothing medically wrong and it is our stupid hormones, does help. It sounds like your Menopause GP did the same for you as Max Fax did for me, completely changed my mind-set and helped me cope. This forum has helped me tremendously and I am so pleased it is helping you too. I had a very kind lady 'virtually' holding my hand warding off panic attacks.
The amitriptyline. Yep, it added to the problem when I first developed the problems with the HRT (problems it seems unique to me, so keep taking that HRT!). It is well known for causing a dry mouth and from what I researched, a dry mouth can also cause stinging and burning in the mouth, so yes, it may well be adding. When I stopped taking it (I had taken it for 10 years with no problem), two nights later, in bed, I felt the glands under my tongue produce saliva. Such a relief! I hadn't realised previously how a dry mouth could cause such discomfort, other than just feeling dry. So if they are not having the desired effect, speak to your Dr about coming off them. I went cold turkey as it was such a low dose (75g is start of antidepressant use I think) and I do miss it, as it used to help me relax into sleep and now I am quite convinced it probably kept low level anxiety at bay as well. However, Max Fax consultant also told me to avoid the amitriptyline, so that in itself probably tells you all you need to know! And your HRT should kick in soon, lucky girl!
Daisydot, I love the Haribo adverts, they are sheer genius!
Hope you all have a great day xxx
P.S The melts are called Xylimelts, no idea why I shoved an 'O' in the front of it. Brain burp!
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Hello Knorman,
Thank you, once again, for all your advice and insight into what is a crazy rollercoaster ride for so many of us going through the various menopause symptoms. As you say this forum is a godsend, just reading everyone's posts has made me realise I'm not going off my head (despite thinking that about myself a few times over the past 6 months) and that there is a genuine reason for going a bit loony tunes now and again ;D
Yes, the Menopause GP gave me the hope I was looking for as my own GP is convinced what I'm experiencing is not the menopause. I've got an appointment with him in 3 weeks time so that will be an interesting conversation! By then I will have been on the Amiltriptyline for 7 weeks, they've worked wonders for my sleep (best night's sleep I've had in ages) but if they are not helping with the pins and needles then I will probably taper off them.
I'm so sorry you can't enjoy the benefits of HRT, I do feel it is beginning to help me, that and the fact that my anxiety has lessened. My panic attacks were horrendous for a while but I'm hoping I'm passed the worst of them and I can enjoy my life once again, I think that's all everyone really wants on this forum, to get their lives back and feel normal again. I've forgotten what that feels like but I do hope to get back to that head space in the near future :)
I hope you are having a lovely day and feeling well, best wishes to you.
Pamela xx
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It sounds like you are making great progress and very pleased the HRT is starting to make a difference to you. I noticed huge changes in 3 weeks and was looking forward to how I was going to feel in 3 months!
Hmmm..... normal...... now, what was that again?!
Enjoy the day xx
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Hello Knorman
I knew I would speak too soon 😕 having a bad day today. Zero sleep last night despite taking 20mg amiltriptyline a couple of hours before heading to bed. My mouth is so painful today, and my burning through my body is back as well. This is going to be a tough day. My mouth is painfully dry and I'm hoarse again. I'm going to cut back down to 10mg Amiltriptyline as I feel it's making my mouth worse, I just hope the HRT is not the issue as well but I can't tell 😕 sorry to be a misery, I'm just struggling today. Hope your having a better day xx
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Keep remembering those good days and they will help you get through the bad, it helps when you know for a fact that not every day is going to be as bad. Going on experience, I think it is a good idea to cut down on the Amiltriptyline. I had made the link even before seeing my dentist and it made a difference straight away, the stinging lessened. It may be worth seeing your dentist to see if your mouth is actually dry, mine was roof of mouth and my tongue. Horrendous! I didn't realise how severe the lack of saliva was until I saw my dentist. Try the Xyilmelts, they made a big difference and helped the anxiety when I could feel some saliva coming through. Cheapest I found online is a company called Mouth Ulcers Shop in Portsmouth and very quick delivery. I had the mint free ones.
Not sure if I mentioned this in my original post, but I have CFS/ME, which is why my body reacted against the HRT as it did. I do not wish to pry, but wondered if you had any medical condition that may affect the HRT? However, I am sure it is the Amiltriptyline making it worse, no the HRT, but it may have to be a process of elimination. My Mother-in-Law had to stop taking Amiltriptyline as she was unable to cope with the dry mouth.
Amiltriptyline came up as if there was a spelling error, I spell checked it and the suggested alternative was 'pantyliner'! xxx
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Knorman, thank you so much for replying to me, your words of kindness made me cry and the pantyliner comment made me laugh so thank you :-*
You're right, I need to remember the better days, although I have to admit I don't get much of those. I never have a day when I'm pain free, but I do get days when the pain and discomfort is bearable, so I need to hang on to that thought.
I'm not aware of having a medical condition that would clash with the HRT, I have two small ovarian cysts and endometriosis so I made the Menopause GP aware of all that and was glad when she said I could still try HRT.
The only niggling doubt I have is the pins and needles in my chin (for which I have the Amiltriptyline) as I haven't managed to get a confirmed diagnosis for that and I wonder if that is what's causing the BMS, but none of the medical professionals seemed to link that to the BMS and burning throughout my body so I guess not...
Anyhow, I'm going to persevere with the HRT as I haven't been on it for very long, less than 2 weeks, and half patches. Maybe I won't notice a difference until I go on to full patches, it's all a guessing game isn't it.
For what I've read, BMS takes quite a few months to sort itself out, roll on this time next year! lol...
Thanks again, you have been a wonderful support.
Have a good day.
Pamela xxx
PS Will give the Xyilmelts a go.. :)
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Morning Pamela
I hope today is going to be one of your better days, its certainly cooler today, which I am very pleased about.
Is the lower dose of 'Pantyliner' helping the dryness?! Hopefully the HRT will be kicking in, but you are right,
it is a guessing game and pretty much a waiting game also.
The consultant that I saw did tell me that I would still experience strange sensations for a while (and I do, but
nowhere near like I did) and I am wondering if your pins and needles is one of those 'strange sensations'. I still
occasionally feel tingling in the area immediately around my lips and going down towards my chin, but I do my best
to ignore it, which I think really helps, but easier said than done, I know!
Enjoy the cooler weather today xxx
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Hello Knorman
Lovely to hear from you :)
Sadly, today's not a good day for me, nor yesterday. I dropped down to 10mg Amiltriptyline 2 nights ago and as a result I've had very little sleep, between mouth and tongue burning and also the burning got worse in my arms and legs again so all that kept me awake most the night. Been on HRT 2 weeks now but will be on half doses for 8 weeks in total so not sure I'm going to see any improvement for a while? I do get the odd day when I'm feeling a bit better so I need to hang on to those. I think I will need to stay on the Amiltriptyline unfortunately until I get on to the higher dose of HRT as I won't be able to function on the sleepless nights, my working day is quite long.
Every day I wake up hoping I'm going to start feeling an improvement but so far that hasn't happened. If the HRT doesn't work in the next few weeks then I think I'm going to be a medical mystery :-\ was it a few months for you before you started feeling better?
Will let you know how I get on, thank you for being there.
Take care lovely lady xxx
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Sleep is so precious even without having to go to work, so fully appreciate the anxiety around not sleeping when you have a long working day. I hope you have some understanding colleagues to laugh along at the absurdities of the meno with you! I was on low dose Elleste Duo and after 4 days I noticed an improvement in my joints (an unexpected, very much appreciated bonus). I also noticed a shift in my mood after a few days.Evening heats disappeared after 10 days and by 3 weeks the facial night heats disappeared followed quickly by the upper body night heat. When I had to stop taking it after 3.5 weeks (I cried), my symptoms came back in the order that they last appeared, i.e body heats came back first. So I think mine worked quite quickly, but my s-i-l took over 3 months to see an improvement. I was told by my Dr that it would take up to 3 months possibly to see an improvement, so hang on in there. It may be at some stage that you need a 'tweak' and there are ladies on here that are extremely knowledgeable about HRT if your Dr is not so helpful.
I hope with it being a bit cooler the last few nights you have managed that golden elixir that is sleep Zzzzzzzz and always, always here for a chat xxx
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Morning Jeanie and what a beautiful morning it is. I managed to sleep without any sleeping tablet, a minor miracle! Gosh, we have had an almost identical experience on HRT, thank you very much for your post, I had found it difficult to find anyone who had had the same issues. No one in the medical profession had heard of anyone it had happened to! I resisted HRT for 2 years until close friends and family begged me to go to the Drs, as by November last year, I wouldn't have cared if I walked under a bus. However, I have CFS/ME and understood it was something I shouldn't take and so it proved! Like you, even though not able to take it, I also think it reset something, as I never got back to the awful place I had been in prior to taking it. Yes, all the heats came back, joint pain came back, but since sorting out the health anxiety and panic caused by the tongue and mouth issue (it is still ticking away ever so slightly), I've noticed that I haven't plummeted to the depths of despair I was in before HRT, a lot of which I think was down to severe sleep deprivation as well as hormones. Something is changing finally with the heats also. The evening ones have been gone now for a few months now and even the night ones are changing, so finally after 4 years of intense symptoms, with the last two being appalling, who knows, I might be coming out the other side too? I'm still having issues with my nose (that's a whole other thing!), which I think HRT also made worse, but appointment with ENT 1st August and hopefully have some answers. Having someone to talk to is so important to us all at this bewildering, upsetting time and in lieu of having the right medical people to talk to (my maxillofacial surgeon was brilliant at helping me mentally and got me eating and drinking properly again, although I still haven't been able to touch the redbush teabags since, see even, the teabag connection!) this forum with all its wonderfully kind, knowledgeable women has been a godsend. I hope you manage to see your consultant soon and find the answer that you need, but it sounds as if you have done a grand job of helping yourself already. That gut is a mighty powerful thing! Have a great day Jeanie and hope Pamela, Lucyjo and all enjoy the lovely weekend day too. x
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Dear knorman,
Thank you so much for your kind post the other day, you have been such a support to me these past couple of weeks and I'm so grateful, thank you :-*
Last week was not a good week for me, I struggled big time with my mouth and tongue, along with very little sleep so work was hard going and I think I only had one decent day. However, I did manage to get some sleep over the weekend so I feel a bit more upbeat today. Mouth and tongue still painful, along with numbness in my hands and the burning through the body but I'm optimistic this is going to be a better week for me! I will give it a few days and let you know how I get on :)
Jeannie, your posts are an inspiration too, I'm learning so much about the menopause. I can't help thinking to myself, I'm 50 years old how can I not know this stuff?!?! But then I realize it's because, in my circle of family and friends, it's a subject we never talk about. It's not deliberately avoided but no-one I know is going through any debilitating side effects, so when it hit me like a steam train at the beginning of the year, it totally derailed me and sent me into all sorts of despair and anxiety. I had no idea what to do or how to cope. However, the dark days are getting fewer with the help of my very supportive hubby, this forum and my new virtual friends! You wonderful, kind ladies has helped me understand so much about what the body can go through, and this forum is brilliant for new people like myself as this is real life. My menopause GP told me that although I didn't have the classic symptoms of menopause, I still qualified for the badge, yippee for me! lol... my regular GP totally dismissed it, nothing to do with menopause he said... hhhmmmm, I think he would have a change of heart if he read this Forum!
Knorman, yes I had a giggle when you asked about my work colleagues, as I've been told I'm going to be the "go-to" person if or when they start getting random symptoms... God forbid, I hope I'm not an expert on all things menopausal by then, I can barely cope with the symptoms I've got! lol..
Have a wonderful day knorman and Jeannie, big virtual hugs to you both xxx
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Regarding the burning mouth problems, I have a friend who has suffered for some time over this and in the end it was her dentist who referred her to Guy's Hospital for tests and they discovered she had a slightly under active thyroid. Though her GP had tested her thyroid function, it had come up as ‘within normal range' but at Guy's they thought the slightly low thyroid function was an issue and she is now on Thyroxin and doing much better all round - burning mouth improved and feeling less tired!!! Sadly the NHS have very dogmatic guidelines regarding thyroid levels so it seems thyroid function is often overlooked when symptoms as mild!! DG x
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Thank you Jeanie for your reply, yes I do believe BMS is the worst thing I've ever experienced health wise. As you say, I need to trust my instincts and do what I feel is helping but it's so difficult to work out what helps and what hinders... however, I'll persevere with the HRT for a while and see how I get on. I'm so glad to hear you are feeling better, you must be so relieved to get rid of the breast and mouth pain and be relatively pain free, that must feel like bliss after what you've been through... long may that continue for you so you can keep the cuddles going with your cat, pets are just the best for unconditional love and a great distraction from the stresses of life :)
Dancinggirl, I've been wondering about my Thyroid too, I can't remember getting it checked so I'm going to ask for that next time I'm at the Docs. Funnily enough, like your friend it was also my dentist that mentioned burning mouth syndrome to me, the GP only discussed it with me when I brought the subject up. Oh well, time will tell how I get on, for what I've learned about BMS, I need to have patience as it seems to be a long haul symptom. Not sure what will test me harder, the BMS or the patience bit! lol..
have a good day ladies..xx
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It's rather cruel that at a time in our lives when we need this patience, a lot of us haven't got it anymore, what with lack of sleep and lack of 'nice' hormones! I had my lovely 3.30 am awake today, definitely an inside heat, not an outside one and not been able to get off again as had pest control man here for 8.30. If only it was as easy to rid ourselves of menopause symptoms as it is rats. Been an outbreak in our area and I don't like killing anything, but they were starting to come into the house. Jeaniewigs, we could have done with your cat! Hope she is still managing to have snuggles. The hardest thing when I first started going through this symptom was not having a medical person to speak with that could help me, so you are not being selfish. My consultant has confirmed he is still on hand if and when I need reassuring and I wish I could share him with you all as he is brilliant at sorting the anxiety.
Pamabz, Dancinggirl has already mentioned this, but the routine thyroid function test does not go to a deep enough level, so hopefully you will be able to access more than a routine check.
I'm going to have to go girls, sorry, my brain is not functioning. Hope you all have better days. xxx
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Hi everyone, I've not posted for ages! My BMS is dreadful at the moment. When I started the duloxetine in April/May I thought it was getting a bit better but I think I have now got used to them & they are not working. Really fed up - eating wine gums & drinking iced water. I can't imagine having this for the rest of my life x
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Thanks Daisydot - you seem so upbeat! I feel a total wreck! I hate this menopause so much. May I ask - do you take HRT & if so which sort?
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I had it pretty bad last year. Mouth dried out and tongue burned. I even got blisters and showed up in the ER twice. Freaked me out!! For me, b12 and D3 brought back the saliva. I had to quit coffee and sugar for a bit. I am back to decaf now.
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Daisydot you poor thing - and here I am feeling sorry for myself!!!! I just think I'm lazy & want a magic pill to make everything ok! Caring for my mum at the moment & looking after my own family & business all taking it's toll along with the menopause especially the BMS. Will try to cut different things out of my diet & see if there is any improvement. Sorry to moan xx
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Hello LucyJo (and Knorman, Jeanie, DG and Annie :))
I too have been suffering from burning mouth for several months now so I feel your pain (quite literally!) as it is absolute misery. Every day I would wake up to either no improvement, or very little improvement only to go back to full on burning the following day. I had it in my tongue, the roof of my mouth, my gums and my teeth. I had other weird stuff going on in my body too but the BMS was by far the worst symptom, and the most distressing.
3 months ago, in desperation, I paid private to see a Women's Health Specialist GP as my local GP was adamant my BMS, along with the intense burning/heat through my body was not Menopause. The Menopause GP was wonderful.... kind, compassionate and told me that, although I didn't have "classic" menopause symptoms, she still believed the menopause was what was causing all my pain and distress.
She started me on half patches of Everol Sequi for 8 weeks, and I went on to full patch 5 weeks ago. I'm glad to say my BMS has now improved to about 80% reduction in pain. Initially I would get 1 good day and then 4 or 5 bad days, but the good days then started to outweigh the bad days and, like I say, I'm now about 80% better with my mouth. I still have a stinging tongue most days but I think that's another problem I have (was recently diagnosed with Atypical Trigeminal Neuralgia and I think that is affecting my tongue and gums) but if I didn't have the nerve problem in my face I think my BMS would either be gone, or to a point where I wouldn't notice it most days.
Obviously I can't say for certain if the HRT was the reason behind the improvement, it may just have ran its course, and of course I could get it back! but I just wanted to share my story in case it helps you, or anyone else suffering from this burning h*ll.
I think you mentioned before you're not on HRT and the Doctors weren't much help in that matter? I had the same kickback from my GP but when I went on the HRT and had to go to my local Health Centre to check my BP before they would repeat my prescription, I booked an appointment with the Advanced Nurse Practitioner. I was amazed when she said she was suffering from some of the same symptoms as me, including a burning tongue. We had a great chat and it was such a relief to speak to someone going through the same thing... anyways, all to say, it might be worth a chat with an ANP at your local health centre? I do believe had I gone to her first I might have received more help from my local GP as she could relate.
Hope some of this helps you LucyJo, and I hope you are feeling a bit better.
Take care x
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Change your toothpaste. I got hold of a tube that I don't use and when I ate anything on Monday, my mouth was burning - especially after jam and a slice of cheesecake >:( ::)
SLS can cause this symptom. It's in a lot of beauty products including toothpastes. By the way, I stood for 40 mins. a couple of years ago and read all the colgate packets - despite them claiming different results, the ingredients were exactly the same in order and quantity ;)
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Morning ladies,
CLKD - which toothpaste do you recommend????
Pamabz - thank you for the recommendation of the hrt. I will try the new gp at our practice & plead with him!!!!
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I use Colgate - a little at a time. Otherwise bananas, chocolate, toast, marmalade all makes my mouth burn.
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Thanks CLKD, sorry I didn't read your previous post properly!!!
I should have realised you use colgate x
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That's fine! Give it a try ...........
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Thanks for that CLKD. I will give it a go. The other problem I have of late is of a very sore mouth if I eat certain things. For instance I ate a cheese sandwich the other day. The cheese was only a little more mature than I normally eat and since then it is like I have burnt my mouth in several places with a too hot drink. I also find that I can't actually take my drinks as hot as I used to be able too or I get welts in my mouth (sad face)
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Dear Pamabz - I have been to the docs this morning & he has given me hrt patches!!! Alleluia! Can't collect them till Friday though. He didn't seem to think that they would help the BMS but I stuck it out & said I wanted to try. Have to go back in 2 months - can't tell you what they are as I don't have them yet but fingers crossed & thanks for your recommendation x
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I hope you see some improvement with your bms on the patches.
It certainly improved mine although my tongue and mouth is not feeling normal.
Does anyone else have :
lump in throat
salty taste
acid taste
slimy film/coating over teeth and tongue
as well as the burning tongue?
Just like to know I am not the only one!
Annie x
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Hi Annie,
I do have lack of taste as well as the burning tongue & roof of mouth & a salty yukky flavour most of the time!
Just stuck my first patch on - any idea how long before I see any results?? Not that I'm impatient or anything lol!
Lucyjo x
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My husband has developed Burning Mouth Syndrome has been to the doctor and has been trying several different toothpastes. Finally he finds Colgate Sensitive Pro Relief the best to keep on top of it and cleaning his teeth more than twice a day if necessary.
Having read on this thread about a link to Thyroid though he may need his medication checking at annual review next week. I'm beginning to wonder why the doctor didn't think of it. ::)
Gangan
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Hi Gangan, thanks for the toothpaste info. Sorry to hear about your husband - it is an awful, depressing condition.Please let us know how he gets on at his review x
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Hi Lucyjo, I saw an improvement within a week, I would say all my issues seemed 90% better, however this only lasted 2 months and I don't feel as good now but still better than before the hrt.
I'm wondering if the surge of hormones in the patch helped at first and then my body just got used to it?
I really don't know, let's hope you have some success!
Hi sparkle, yes I do have reflux and heartburn, had endoscopy, nothing unusual found, the only time I've ever had this was in my pregnancies so I do wonder if it's hormonal.
All the best Annie x
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Hi Ladies, just wondered if anyone felt rough when they first started evorel conti patches? I'm on day 3 now & feel awful - feel sick, headache, stomach pains, thigh pains. I was so looking forward to these & now feel rotten!
Lucy x
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Is this burning mouth or other symptoms Lucyjo?
Mine was bad this morning - unable to eat my muesli or toast :-\
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Hi CLKD, my burning mouth is just as bad - no change.
Feel better in general today than yesterday - not dizzy or sick or premenstrual.
Sorry to hear your mouth is bad as well x
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Half a day at a time?
My mouth is much improved. I started the day with toast and a light spread of butter. I will check my toothpaste too.
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CLKD, apologies, I've just seen the message you sent me. Haven't been around here for ages. Someone mentioned the slimy sensation, which I also get as well as the pain. I also sometimes have a feeling that the inside of my mouth is covered with a think layer of plastic. The pain keeps moving around and changing character.
Someone asked about Nortriptyline, which I took for about three years and eventually stopped as it wasn't helping. But some people find it very good.