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[nutbutter]

Hi everybody I wondered if anyone had any advice on the following.

I currently have chronic nausea, dizziness and headaches.

In 2015, I started having weird symptoms of stinging and tightness in my muscles (mainly in my legs).  For this the GP gave me Amitriptyline believing the stinging and pain to be nerve related.

I used a low dose (10mg)  of Amitriptyline for two years till 2017.

When I then came off it, nausea, burping, acid reflux and headaches with a bit of dizziness started and I believed this was due to coming off the Amitriptyline.

That was 4 years ago and those symptoms have persisted.  In fact the dizziness has just recently got worse (see below).  I also have quite a bit of muscle pain and stiffness in my back, neck, shoulders and legs.


What I've tried to address these symptoms:

Gastroenterology - who concluded after 2 endoscopies, various blood tests and CT scans that there was no physical cause they could find.

Menopause Clinic - who said menopause wasn't the cause but tried me on HRT oestrogen patches (25mg - which make me feel sicker and more headachy)

Acupuncture

NHS homeopathy

massage

yoga

Bio identical Progesterone

Counselling (which is ongoing but expensive)

GP, who prescribed: Lamprozol followed by Citalopram

I am currently not receiving any treatment or taking any medication.



I recently attended A&E because of the dizziness but the doctor there said my balance was very good (notwithstanding I feel as if I'm swaying and standing on a boat).  Blood was taken and all came back normal.  He said that because my balance was good, it couldn't be vertigo or labyrinthitis.


I am 60.  I had a hysterectomy when I was 40, due to fibroids.  I retained my cervix and ovaries. I don't know what stage I'm at in menopause.

I practice yoga regularly.  I don't smoke and I drink very little alcohol. I walk most days.  I practice meditation and relaxation.  I eat healthily. 

By way of background, symptoms I have had and still have to a lesser extent are as follows:   restless leg syndrome;  sore eye (like a muscle pull - which has been checked by ophthalmology with no cause found);  extreme tiredness;  tinnitus;  migraine;  lump feeling in throat and upper tummy;  acid reflux and sore tummy.  These may or may not be related to the chronic nausea, headaches and dizziness.


After 4 years I am feeling it increasingly difficult to go on with these symptoms and I wondered if anyone has had similar experience or any advice?

The main symptoms I have difficulty with are the nausea (though I don't vomit), dizziness and headaches - which are almost constant and range from mild to very bad. Most days I feel like I have a bad hangover (without the drink of course). 

The above sounds so clinical but there is a lot of emotion that comes with it and I do cry a bit - though I'm not depressed my counsellor says.

[nutbutter]

Thanks for that Jaypo

It's pretty horrible eh?

I don't think it's the dizziness that's causing the nausea as, until recently, the dizziness wasn't to problematic.  However, the recently increased dizziness isn't helping the nausea and possibly increasing it.

I have tried HRT in the form of low dose oestrogen patches but these made me very nauseous and gave me a bad migraine.  I had to stop them, despite trying on several occasions.

I'll have a look at the Stugeron tablets.  Thanks for the suggestion, though I've tried others in the past.

I have bought bio identical progesterone and I await it's arrival and I'll give that a go again.  I've tried it in the past though.

I've also asked to see my GP and I'll suggest to her she refers me to an Ear Nose and Throat specialist to check the dizziness.  She seems a bit fed up with me to be honest and keeps asking me what I want her to do!!

Thanks again Jaypo.

[Wrensong]

Hello nutbutter & 

So sorry you're continuing to have such a horrible time of it.  Like you & in common with several other members I'm a migraineur & wonder whether what you're now experiencing could be vestibular migraine.  It can happen in later life where there is a history of other types of migraine & hormonal changes are thought to possibly be implicated.  I've had classical migraine since late teens, ocular developed in late 30s & we think more recently, vestibular migraine, which has been extremely debilitating when it strikes.  I realise you may have ruled this out already given the length of time you've been suffering but thought it worth mentioning.

https://www.nationalmigrainecentre.org.uk/migraine-and-headaches/migraine-and-headache-factsheets/vestibular-migraine/

https://migrainetrust.org/understand-migraine/types-of-migraine/vesibular/

I do hope you manage to get to the bottom of it as dizziness & nausea can be horrendous, stressful & very disruptive to normal life.
 

[nutbutter]

Thanks Wrensong.

I'd thought about vestibular migraine (not sure if that's the same as silent migraine?). 

I'd also thought about endocrinology and the pituitary gland function in particular.

The unhelpful thing is that my symptoms throw up all kinds of potential conditions.

It's just so tiring and stressful going down all these routes just to meet a dead end isn't it.  Also, given waiting times on the NHS to see someone about it and getting a diagnosis adds to the stress of it all.

I will consider what you say though and have a look at the helpful links you've sent.

I wondered if you Jaypo use the travel sickness tablets constantly?  As you know my symptoms are almost always there.

Thanks both of you.  Its good to feel listened to by sensible folk.

[Wrensong]

I'd thought about vestibular migraine (not sure if that's the same as silent migraine?).

  I did think you probably would have - symptoms like that are so debilitating they can't be ignored & drive us to do all we can to get to the bottom of them.  I think silent migraine refers to those types that can occur without headache - my ocular migraine is a type of silent migraine, but as vestibular can have headache as a feature I'm not sure whether it can come under the "silent" classification.

Should also have mentioned that like you I have tinnitus, though this has improved greatly in recent years.  With the vestibular migraine episodes there is a sense of fullness in my tinnitus ear, if that rings any bells with you (no pun intended).  I'm 9 years postmenopause & find that changes in HRT do cause headaches together with some features I associate with migraine.

If you can possibly afford a one-off private consultation, either a Neurologist with a special interest in migraine if you think vestibular migraine might be the cause, or ENT if not, that would probably be the quickest way to reliable diagnosis & hopefully treatment, or at least advice on prevention or minimising symptoms.

[Gynaikeíos]

Hello nutbutter, it is nice to meet you.

If it is of help, I had a cousin who had headaches, nausea and dizziness and found that a chiropractor had the answer. The GP had sent him to different specialists who found nothing wrong according to their specialty. He was happy the great big problems were ruled out, but still feeling unwell. He felt nothing to lose, so went to a chiropractor. They are private so it was money, unfortunately.

I do not know if there are chiropractors in the NHS?

With best wishes.

[shrosphirelass]

I have had similar symptoms and these are often experienced in menopause and can be hormonal in nature. I went on HRT ( evorel sequi then evorel conti) which definately helped and also saw a physio who recommended neck exercises which also may have helped. I am much improved but do still get bouts of it. I find sucking a lemon sweet helps the nausea and even the dizziness. The other thing that makes me worse is when I am anaemic, I am always borderline or worse. Blood tests may come back normal but if you are at the bottom range it seems you can still feel dreadful. I do hope you find some relief.

[nutbutter]

Hello Girls.

Thanks so much for taking the time to give me your thoughts.  It makes the process feel less lonely.

Wrensong I am thinking about a private consultation now as time has gone on without an answer.  I will certainly update you after I have my GP appointment.  I'd need her to refer me.

Gynaikeios I have seen a chiropractor but just for my back pain, so that's a possibility for the nausea and dizziness.  Good shout.

Shropshirelass I know what you mean about blood tests but I'm not an expert and I can only go with what the docs say and they say there is no problem they can see.  I've tried ginger and lots of other things to address the nausea but nothing like that works I'm afraid.  Unfortunately, HRT in the form of oestrogen is out I think, given my reaction to it - increased nausea and headaches.

Onwards and upwards eh!

Thanks all.  Really appreciate your input.

[CrispyChick]

My first symptoms of perimenopause were extreme dizziness avd nausea. I'm still not much further forward, but they have calmed down.

I'm only 45. But, irrespective of meno stage, I'm fairly certain hormones cause my problems.

I too had a ton of tests; mri, ct scan, endoscopy, vestibular exercises... U name it. Nothing found and nothing helped.

Maybe worth trying a lower dose hrt? I tried hrt last year and for jectoo, the estrogen alone made me worse.

[nutbutter]

Good shout Crispy Chick

I just saw some of your previous postings there.  I'm starting to think hormones are the key.

I had a particularly bad day today - just feeling like I'm on a boat in a very rough sea.

I tried two of the stugeron travel sickness tablets but no effect yet.

I am waiting for the bio identical progesterone cream to arrive and I'll be giving that a go.

I think I saw somewhere that regular meals and routine are good.  Today, I didn't eat till 1pm and it wasn't much at that.  It's possible that made matters worse.

I do drive myself to Do things when I feel worse - I get this strong feeling I don't want to lie down to this but maybe need to not push myself too much.

Thanks for yourear and input.

[Wrensong]

Crumbs nutbutter!

I think I saw somewhere that regular meals and routine are good.  Today, I didn't eat till 1pm and it wasn't much at that.  It's possible that made matters worse.

Maybe put low blood sugar/hypoglycaemia into the search box to see past threads on this topic - been discussed a lot.  The hormonal changes at menopause mean we become more prone to the effects of unstable blood sugar.  If you are not routinely eating little & often at this stage of life & feel the way you do, please do look into hypoglycaemia as poss cause.  I have to be very careful with meal content & timing since peri began many years ago & certainly can't go until lunchtime without eating.  Once we feel nauseous & dizzy the last thing we feel like is eating, but a blood sugar stabilising way of eating every day should help prevent things getting to that stage if hypoglycaemia is a factor for you.
Complex carbs, good quality protein at every meal, plenty of veg & some fruit (not too much fruit on its own), all should help slow down digestion, spread the glycaemic load & help stabilise blood sugar to prevent it getting too low & causing symptoms.  Never exercise on empty & have an emergency snack with you when out & about so you can eat it if you start to feel blood sugar crashing.  Good idea to reduce any sugary foods to a minimum if you don't already do this & oooh, sorry - coffee & alcohol can also play havoc with blood sugar.  Don't shoot the messenger!
Wx

[nutbutter]

Had a laugh at your post Wrensong.

I agree we become more sensitive to all these other processes during menopause.  I'll keep in mind what you say though I've looked at low blood sugar and any blood tests and tests for sugar level all show normal - as far as the docs are concerned I'm super fit.

I'm thinking about getting referred to as ENT specialist and also want the doc to check for any pituitary disfunction as I see my symptoms fit both areas when something is out of kilter there.

Any thought you may have on these areas would be welcome.  I'm seeing the doctor on Thursday morning.

Thanks again for your input.

[Wrensong]

Phew, glad you're genned up on hypoglycaemia    Did think you would probably have looked into it.  Have they tested your sugar with a dizziness episode ongoing though?  Presumably they did in A&E?

Yes, to an ENT referral if you think that more likely to help than Neurology.  Imagine your GP would need to be convinced of possible pituitary involvement to refer you to an Endocrinologist.  If you want to chat about that further please PM me.

Can I ask was the acupuncture in neck/spine region & did your symptoms change in any way afterwards?  Also have you had an MRI of neck & head?
Wx

[nutbutter]

Hi Wrensong.

Sorry for the delay in responding.  I've had a pretty horrible few days.

They did test for blood sugar levels in the hospital.

The difficulty I have is that I'm not a medic, so I'm not sure what the best course of action is.  All I can see is that my symptoms fit with either conditions (pituitary disfunction and ENT vestibular).  Which one is anyone's guess.

I'd really appreciate a chat on that.  You suggest I 'PM' you.  Sorry, I'm not familiar with the terminology yet.  What does that mean?

No MRI of the neck and Head yet though A&E doc has put me in the queue for that - probably will take several months he said.

The acupuncture was pretty much all over my body.  I think the head, neck and spine were involved.  It was over two years ago I tried that and the dizziness wasn't so acute then, it was mainly the nausea and headaches.  It didn't have any impact I'm afraid.

I'm not rulling out menopause of course.

Off to see my counsellor now but I'll make sure I check here when I'm back and I'll keep watching for your replies in order to ensure my timely reply next time.

I really appreciate any help you have.  You seem knowledgeable too.

[Wrensong]

Hi nutbutter.  Sorry to know you've had a particularly bad few days.  Absolutely no need to apologise - I don't log on here every day either, in fact I sometimes go weeks without looking at the forum, which is partly why I suggested you PM me.  Sorry about the shorthand - there is a Personal Messaging facility on the site that members can use to chat more in depth, one-to-one, about issues that e.g. may otherwise take a thread way off course, or about something they're uncomfortable putting on the open forum.  As PMs are notified via email I know when a member is trying to get in touch even if I haven't looked at the forum for some time, so I can then log on to MM & chat with them.  But I now see you've only made 7 posts so far & I think you need to have 10 before you can use the Personal Messaging facility.  I'm happy to do that when you're up to 10 posts if you think it might help to chat in more depth.  My history is complex & it would be inappropriate to put too much on the forum that may turn out to be be irrelevant to you, that's why I was asking some odd questions to try to get a feel for what may or may not be helpful to pass on.

Yes, absolutely it's very difficult to know which specialty might best help when symptoms cross over.  All I can say is trust your instincts as far as you can.  ENT should be very helpful where dizziness/balance issues are a problem & they would likely refer you on to Neurology anyway if they thought that appropriate, or ask your GP to do that for you on the NHS if a 2nd private consultation is difficult for you.

Could you raise your concerns about a possible pituitary disorder with your GP?  Endocrinology usually deal with that area, but your GP would be first port of call & may be able to rule that possibility out without you possibly wasting time & money on a potentially inappropriate referral.

Good that MRI head & neck is in the pipeline.  ENT arranged my first, but whichever specialty you & your GP decide is best bet for a referral, I would raise it with the consultant & they may ask for it to be brought forward if they think it appropriate.  I would mention everything you've tried, inc the acupuncture, whoever you see.  If it might help you feel more prepared & relaxed on the day, perhaps document relevant history concisely & either use as your crib notes or hand it over to the consultant.  When a condition is longstanding it can be so easy to forget to mention something, especially if you're feeling unwell on the day & worrying about that eventuality just adds to the stress.  If a private referral is agreed you could even contact the consultant's sec & ask whether he/she might want to see the summary in advance, then email or send it.

Knowledgeable?!  No.  Just like many women on here, been round the block a few times & happy to pass on personal experience if it might help.  I will try to remember to keep checking this thread while your posts are still below 10, so we don't miss each other.
Wx