Iāve joined this forum to try and get some advice on a vertigo condition Iāve been suffering from for around 7 years now. Iāve been down all the NHS routes, MRI scans, consultant referrals and balance clinics but everything came back clear. It seems to come and go and Iām not sure what the triggers are? My symptoms are; unsteady on my feet, feeling light headed and like Iām on travellator when I walk, feeling of swaying back and forth when Iām standing still, nausea, headaches, sensation changes, tinnitus, fatigue, neck ache. Things donāt particularly spin for me but I do feel spaced out and it affects my concentration and focus and spatial awareness ( I sometimes move more towards my left side). My symptoms can last for weeks or months and can vary in severity on different days during that time, so Iām not sure if thereās something thatās suddenly making it worse? It doesnāt really affect me when I lay down or sleep but much more so when I up and moving about or sometimes when sitting and working, e.g.at my computer. At the time of writing this, Iāve been suffering for a few weeks now, today being a particularly nauseous and unsteady day.
I found this site through my wifeās work colleague who went down a similar road for years and was finally diagnosed by Dr Surenthiran with Vestibular Migraine. Iām currently waiting to speak to my GP to try and get another balance clinic referral as my last one is no longer open due to my symptoms going away (but not going altogether) No doubt Iāll go back down the same road to try and get a diagnosis via the NHS.
Medication Iāve tried so far hasnāt worked but it was mainly what I was prescribed at the very start when the GP thought it was Labyrinthitis. One neuro consultant also suggested a small dose of anti-depressants to help relax my neck muscles but I didnāt really want to start taking any kind of anti-depressants. I think acupuncture has helped in the past and also neck massage, although I had a neck massage last night and I feel terrible today. I have another acupuncture session booked so Iām hoping it will alleviate my symptomsā¦ I often reach to massage the top of my neck as I feel this is where the problem is which is why Iāve been focusing on my neck.
It affects me so much on some days at home and also at work and is really starting to affect my mental health. I know that there are so many variations of what Iām suffering from but Iām just desperately trying to get a diagnosis for what I have and how best to treat/ manage it.
Any advice from any fellow sufferers about who best to see or suggested effective therapies would be greatly appreciated. Iām a very active, outgoing, positive person and Iām not going to let it run my life but some days feel exhausting and depressing.
If you have already seen Dr S and been given a diagnosis of VM I wouldnāt imagine thereās much point in chasing diagnoses elsewhere. He is certainly one of the very few U.K. experts and specialists. My understanding is, as of very recently, he no longer sees NHS patients only private ones though there I stand to be corrected having had no personal involvement. One main advantage of Dr S is that he offers repeat consultation so oversees case management. Few do that in U.K. though a balance centre may well do. Again as they barely exist outside London I have no personal experience of them at all.
As no doubt by now you will have realised VM has no quick fix. Thereās no cure but itās possible to get it under reasonable control. Personally I medicate however others prefer major lifestyle changes, vitamin supplementation and migraine diets. All might be worth exploring. If you have already tried maybe itās time for a revisit.
Lots of info on site. Read up on the Wikis etc. Read The Migraine Survival Guide. I always suggest a good read around the subject. Might bring up another as yet untried possibility. Any keyword in the Search facility affords many possibilities. Though somehow I think you may find yourself already pretty familiar with most, as you seem to have trialled physio/massage, acupuncture etc already.
Not sure what meds you refer to if they were prescribed for labyrinthitis. Doubt they are for long term preventative use somehow. There are a lot of preventatives out there. Many people have great success with a tiny dose, as little as 10mg sometimes, of Amitriptyline which is technically an antidepressant. Itās in the top three NHS choices for preventative. Word of advice. Itās used off label for migraine and also for treating chronic long term pain in many other conditions. At that dose itās not working as an antidepressant so donāt let that put you off one of the most successful preventatives there are if you are offered the chance.
Thanks for your reply. I havenāt yet seen Dr S as it was my wifeās colleague that travelled to down to Kent to see him to get her diagnosis. I donāt mind going private and travelling to London as I health care cover and I suppose itās worth a try if Iām unsuccessful second time around with the balance clinic which is near me in the Northwest.
I seem to have managed it over the years and not let it affect me too much as Iāve had no choice after getting no answers from the NHS. Iāll definitely read up on what I can on here and just keep plugging away with treatments to hopefully relieve symptoms. As for meds, it was something the GP prescribed for motion sickness I think to combat what he thought was Labyrinthitis or something similar. I tried a few different tablets but they didnāt really work and just made me drowsy all the time. They definitely werenāt a long term prescription though. I do remember the neurologist saying the suggested anti-depressants were a small dose so maybe they are worth a try this time around. Iām just hesitant as my mum was addicted to anti-depressants for a lot of years. Iāll mention it to my GP though next week. I guess Iām used to the long road now and no quick fix as Iāve had it for years. The first ENT consultant said it would just go away but that was years ago My wifeās going to try and get a contact for Dr Surenthiran from her colleague, so fingers crossed I might be able to get in to see him in the near future.
Iām afraid this condition is so nebulous I wouldnāt expect any concrete answers.
Iāve been recovering well but had a bit of a relapse recently so I can definitely relate to āmanaging wellā.
One thing Iāve noticed of late is a very strong correlation of symptoms to stress levels; does that help any? When I get a flair up if Iām too anxious about it it just makes it worse. Itās very important to take a lot of exercise and get a lot of downtime away from stressful environments like work.
Itās really important to stay away from caffeine too.
Lee. Sorry. I misread that bit. Thought it was you that had seen him. Heās very elusive it seems but lots of here have seen him and multiple times and have his contact details. Iāve a feeling they were actually posted on here but may be wrong. @Coffey6810 or @sputnik2 can easily help I suspect. This site is worldwide but thereās a few U.K. active members at any one time so we have quite a network of experience of various clinics etc. Thereās Dr Silver of the Walton Centre at Liverpool, heās a specialist expert but there are others much nearer home to you I suspect. Thereās one in Manchester. If you cannot find one by searching itās easy enough to put out a call.
Welcome to the forum!
I had symptoms very like yours and was recently diagnosed with Persistent VM for which I was prescribed low-dosage amitriptyline.
I understand your resistance to antidepressants but the dosages for VM are much lower than for treatment of depression.
I am already on Fluoxetine for anxiety and depression for other reasons and have been told by my neurologist, pharmacist and GP that the small dosage of amitriptyline that I am on will not affect that.
I am currently at 20mg of ami and plan to increase it to 25mg which I think will do the trick.
So, if you are diagnosed with VM by a clinician, it is definitely worth trying the amitriptyline if it is suggested.
From what I can tell, those VMers who respond to amitriptyline are the lucky ones as other treatments seem less āstraightforwardā.
Good luck - and persevere. I found it beneficial to say āa friend suggested it might be vestibular migraine?ā to every clinician I saw, once Iād done my research and felt that was what I was suffering from.
Hi
Yes, I definitely feel that thereās link to my stress levels and work commitment, although I didnāt think Iāve felt particularly stressed lately but my wife thinks otherwise. I do try and get a lot of down time and love my exercise so doing what I can in that department. As for caffeine, I do drink coffee being a teacher ( two cups a day generally) and Iāve never given a thought that it may be making things worse as generally, I didnāt think caffeine affected me and didnāt worsen symptoms when were at at a milder level. I shall cut out and see if it helps. Thanks
Itās great to finally be able to talk to people who understand and have suffered or still are. People donāt really seem to get how it makes you feel, both physically and mentally, unless theyāve suffered from it, even if theyāre trying to be helpful, like my wifeā:grin: Itās also reassuring that thereās experts closer to home so, Iāll definitely look into that if I have no joy through my GP. Thanks
Hi there, I just wanted to message as your feelings were so much like mine! I had (probable) labryinthitis which in turn led to vestibular migraines, although itās likely Iāve had this for many years without realising (makes sense when I look back). I was eventually given prochlorperazine after many other nausea meds and this was the first thing that worked which was what led them to start thinking along the vestibular route. Iāve now been on a low dose of amitriptyline for a year and had so many doubts about starting it. I too felt really worried about it being an antidepressant but itās very very rarely used for that purpose nowadays and is regularly prescribed for things like chronic pain, migraine prevention etc. I have to say that itās the best thing I did. Itās allowed me to get some element of control into my life, I keep my dose low (10mg) by also using supplements, diet and lifestyle changes to help manage my symptoms. I could probably do with a higher dose if Iām absolutely honest but have been reluctant to do so given I already feel as if I rattle! Stress, doing too much, hormones, MSG, supermarkets, too much sun - these are just some of my triggers, and I do have to constantly manage symptoms but it does and can get better! Once you find the right consultant itās easier to start moving forwards so keep going. My specialist isnāt London based so there are some good ones out there outside of London. Good luck, let us know how you get on!
Thanks for your reply. Itās nice to meet people who can share their experiences of this scary condition. From reading some of the posts on here, my symptoms seem milder which I feel very lucky about, and I seem to have managed for the past 7 years and itās fortunately come and gone in severity. It has however, never gone away properly and itās currently the longest period of time Iāve had symptoms for in a few years. No idea what the triggers are or how it started but itās something Iāve, as others have, had to learn to live with. I canāt seem to think of any specific triggers other than stress, working too much on a computer or alcohol sometimes but other times Iām totally fine with them. It doesnāt really stop me doing anything other than if itās on a day when it causes a headache and nausea, which then I need to lie down and rest and I canāt do much at all. Others on here including you, seem to have a lot more triggers.
My issue with being prescribed permanent medication is that I donāt want to constantly feel tired and drowsy from them and also not being able to have a beer with my mates when symptoms are mild. I also exercise a lot which keeps my stress levels down so I donāt want medication to affect that either, as it has in the past when I was first prescribed medication (canāt remember what?. Maybe I can trial a low dose of amitriptyline to see how I go. How does it make you feel? apart from it helping, do you feel drowsy from it or anything? I really feel for people on here who have worse symptoms than me, as I hate feeling how I do some days and it often affects my mood so god knows how people cope with some of their symptoms.
I have a GP appointment on Tuesday so Iāll see what they suggest as the next step? I might need to find an expert closer to me.
It does make me tired, canāt deny that! But Iāve learnt to mitigate that by taking it an hour before bed and other than making me sleep like a log, itās okay. I also exercise regularly and my medication hasnāt gotten in the way of that at all. In fact itās helped me to progress more as itās helping to manage my symptoms better. Not to say I donāt have days where exercise is hard, but thatās the condition rather than the medication. My specialist told me I was okay to have a drink with amitriptyline although it does say not to on the label and I have personally chosen not to as anything more than the smallest of small glasses of white wine makes me feel rather sick! I was lucky and didnāt really get any side effects other than extreme tiredness for the first two weeks but that then settled down. Itās such a personal and individual decision and one that only you can make for yourself unfortunately. I barely took a paracetamol before all this so can totally understand your feelings on medication, I wouldnāt be taking any unless I absolutely had to. Definitely worth getting as much advice from specialists as you can as then you can make an informed decision as to whatās best and right for you. Good luck!
Hi, Thanks for all your advice. Iāll let you know how I get on. Itās been tiring at work with it today. Hopefully Iāll be able to get on top of it a little bit.
My wifeās going to try and get a contact for Dr Surenthiran from her colleague, so fingers crossed I might be able to get in to see him in the near future.