I’ve joined this forum to try and get some advice on a vertigo condition I’ve been suffering from for around 7 years now. I’ve 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 I’m not sure what the triggers are? My symptoms are; unsteady on my feet, feeling light headed and like I’m on travellator when I walk, feeling of swaying back and forth when I’m standing still, nausea, headaches, sensation changes, tinnitus, fatigue, neck ache. Things don’t 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 I’m not sure if there’s something that’s suddenly making it worse? It doesn’t 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, I’ve been suffering for a few weeks now, today being a particularly nauseous and unsteady day.
I found this site through my wife’s work colleague who went down a similar road for years and was finally diagnosed by Dr Surenthiran with Vestibular Migraine. I’m 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 I’ll go back down the same road to try and get a diagnosis via the NHS.
Medication I’ve tried so far hasn’t 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 didn’t 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 I’m hoping it will alleviate my symptoms… I often reach to massage the top of my neck as I feel this is where the problem is which is why I’ve 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 I’m suffering from but I’m 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. I’m a very active, outgoing, positive person and I’m not going to let it run my life but some days feel exhausting and depressing.
Hi Lee, and welcome.
If you have already seen Dr S and been given a diagnosis of VM I wouldn’t imagine there’s 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. There’s no cure but it’s 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 it’s 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. It’s in the top three NHS choices for preventative. Word of advice. It’s used off label for migraine and also for treating chronic long term pain in many other conditions. At that dose it’s not working as an antidepressant so don’t let that put you off one of the most successful preventatives there are if you are offered the chance.
Thanks for your reply. I haven’t yet seen Dr S as it was my wife’s colleague that travelled to down to Kent to see him to get her diagnosis. I don’t mind going private and travelling to London as I health care cover and I suppose it’s worth a try if I’m 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 I’ve had no choice after getting no answers from the NHS. I’ll 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 didn’t really work and just made me drowsy all the time. They definitely weren’t 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. I’m just hesitant as my mum was addicted to anti-depressants for a lot of years. I’ll mention it to my GP though next week. I guess I’m used to the long road now and no quick fix as I’ve had it for years. The first ENT consultant said it would just go away but that was years ago My wife’s 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.
I’m afraid this condition is so nebulous I wouldn’t expect any concrete answers.
I’ve been recovering well but had a bit of a relapse recently so I can definitely relate to ‘managing well’.
One thing I’ve noticed of late is a very strong correlation of symptoms to stress levels; does that help any? When I get a flair up if I’m too anxious about it it just makes it worse. It’s very important to take a lot of exercise and get a lot of downtime away from stressful environments like work.
It’s really important to stay away from caffeine too.
Lee. Sorry. I misread that bit. Thought it was you that had seen him. He’s very elusive it seems but lots of here have seen him and multiple times and have his contact details. I’ve 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 there’s a few U.K. active members at any one time so we have quite a network of experience of various clinics etc. There’s Dr Silver of the Walton Centre at Liverpool, he’s a specialist expert but there are others much nearer home to you I suspect. There’s one in Manchester. If you cannot find one by searching it’s 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 ‘straightforward’.
Good luck - and persevere. I found it beneficial to say ‘a friend suggested it might be vestibular migraine?’ to every clinician I saw, once I’d done my research and felt that was what I was suffering from.
Yes, I definitely feel that there’s link to my stress levels and work commitment, although I didn’t think I’ve 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 I’ve never given a thought that it may be making things worse as generally, I didn’t think caffeine affected me and didn’t worsen symptoms when were at at a milder level. I shall cut out and see if it helps. Thanks
It’s great to finally be able to talk to people who understand and have suffered or still are. People don’t really seem to get how it makes you feel, both physically and mentally, unless they’ve suffered from it, even if they’re trying to be helpful, like my wife:grin: It’s also reassuring that there’s experts closer to home so, I’ll 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 it’s likely I’ve 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. I’ve 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 it’s 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 it’s the best thing I did. It’s 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 I’m 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 it’s easier to start moving forwards so keep going. My specialist isn’t 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. It’s 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 it’s fortunately come and gone in severity. It has however, never gone away properly and it’s currently the longest period of time I’ve had symptoms for in a few years. No idea what the triggers are or how it started but it’s something I’ve, as others have, had to learn to live with. I can’t seem to think of any specific triggers other than stress, working too much on a computer or alcohol sometimes but other times I’m totally fine with them. It doesn’t really stop me doing anything other than if it’s on a day when it causes a headache and nausea, which then I need to lie down and rest and I can’t 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 don’t 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 don’t want medication to affect that either, as it has in the past when I was first prescribed medication (can’t 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 I’ll see what they suggest as the next step? I might need to find an expert closer to me.
It does make me tired, can’t deny that! But I’ve learnt to mitigate that by taking it an hour before bed and other than making me sleep like a log, it’s okay. I also exercise regularly and my medication hasn’t gotten in the way of that at all. In fact it’s helped me to progress more as it’s helping to manage my symptoms better. Not to say I don’t have days where exercise is hard, but that’s 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 didn’t really get any side effects other than extreme tiredness for the first two weeks but that then settled down. It’s 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 wouldn’t 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 what’s best and right for you. Good luck!
Hi, Thanks for all your advice. I’ll let you know how I get on. It’s been tiring at work with it today. Hopefully I’ll be able to get on top of it a little bit.