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Wow, lost for so many years and today I´ve found this website

Hello! I am originally from Spain and now living in London. I am so happy I found this community after all this time of not knowing any other person with the same problem as me…
I was diagnosed with VM two years ago but has been dizzy for more than 7 years already. I am now 37. I tried Amitriptyline and I am now taking Flunarizine 5mg (migraines prevention), I´ve been on this treatment almost for two years but I still feel dizzy and living a very limited life.

I am a clinical psychologist and I practice Mindfulness, I am grateful I learnt how to cultivate this attitude of acceptance through meditation, however, there´s still much to do.

After years of not being understood at all (all doctors told me that this was “anxiety and stress symptoms” and neck problems) I finally came up with this diagnosed and treatment, at least I know that there´s something real there and hope it is “treatable”.

My worries now are about how to live in this city with this condition, have a personal and professional
life, if I am ever going to be able to go to museums, or do my shopping, or travel and sightseeing…

I really need to think about the next step, and I wonder if you could recommend me who do you think I should see. I just wrote an email to N.Harris, I´ve been waiting for my NHS appointment for two months for the Royal ENT UCL but I am still on the waiting list, keep calling everyday but it pointless.

Thanks for being there :))

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Hi and welcome. If you are already on Flunarizine that is surely prescribed and dispensed from a hospital pharmacy. In UK that is a legal requirement so I’d suggest you return to the prescribing consultant who may increase the dose for you. Better the Devil you know maybe. To hurry the thing along enquire about paying and go privately to see them. As you already know until you can control the symptoms well life can be difficult and some things impossible.

Interesting you being a clinical psychologist with MAV experience. This forum could certainly do with some of your input for sure, many people find it very difficult to get to grips with. They really do struggle. Helen

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Thanks Helen! (by the way, we have the same name)
Indeed, acceptance tools like mindfulness meditation and other exercises did let me “have a life” when I first learnt them trough therapy. It’s not the ultimate solution, but it just allows you to live a life and do things, avoid less, while you have this condition, in case you haven´t found the right treatment, like me.
Reading the post, I can really see how so many people do struggle with anxiety and sadness, frustration feelings. It is the first time I am reading about other people´s feelings with the same difficulties so it is also being very interesting for me as a therapist. I work with people with other long term conditions like chronic pain or fibromyalgia but I never had a case like mine or yours in my clinic. Anyway, acceptance of we can not change and emotional management is always a good skill to learn and my recommendation is learning Mindfulness with a therapist.
I wish I could help and I am going to do it as much as I can in that forum.
Thanks

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Hi Helen. Well fancy that. I don’t know if you have ever noticed it but in drama on TV and in plays on stage and in history (Helen of Troy) more often than not the main victim who gets murdered is called ‘Helen’? Must be just ‘our’ luck, eh. :sweat_smile:

Assuming you are continuing your career here in UK personally I doubt you will meet any MAVers, not through the NHS anyways. It’s still little recognised and nobody acknowledges any Psychological impact from it either. That’s just not expected. After all it’s not fatal so people are expected to just get on with it and not make a fuss. When it comes to people freshly diagnosed I Find most find it impossible to grasp that, in this Age of Instant Everything, there is no quick and specific remedy and MAV can prove very long-term and difficult to tame. That is after they get past the “Why me” stage. I shall look forward to reading your input with great interest. I’m sure the best way forward may well be with a qualified therapist but in many parts of the UK and aside from paying to go private there are very limited opportunities for such assistance I’m sure. Helen

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Of course, short-term to bridge the gap, you could take a closer look at tinted lens. Many people find them helpful. Plenty of debate on those on here and links to products to purchase which incidentally contributes to the site’s running costs. Helen

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It sounds like you tried Amitriptyline, can I ask what starting dose and why you stopped? I tried Paxil (before I knew I had VM), then Verapamil (was working but ran into kidney issues), then Topomax (was working but ran into insomnia), now I’m on 25mg of Amitriptyline and seem to be tolerating it quite well for 9 months or so. It can be quite a while before you find the right medication, although I see you are on Flunarizine so that is good.

Do you have head or nasal pressure symptoms? If so, I think Cefaly device might be a good option too.

Erik

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Hi Erik, I left Amitriptyline because it was, weirdly enough, causing me headaches almost every day. That was the first medicine I tried and then my doctor prescribed me Flunarizine 5 mg, that is actually working but, In my opinion, is still not enough. I am now trying to figure out my next step and trying to decide whether to go for Vestibular Rehab or try other medicines as I think after two years on FLunarizine it is not working as it used to. When I take 10 mg I feel depressed and sleepy the whole day.
The most limiting symptom for me is dizziness and visual vertigo, I can´t walk a lot, go to shops or museums make me feel really dizzy and block, tired and confused although I still can do things and work (part time)
And yes, sometimes I feel pressure on my head, but nothing nasal.
Thanks for your advice!!!

Ah I see, well if I were you I’d give Topomax a try next.

@naejohn had similar symptoms initially and was put on Ami. She had constant headaches (had always suffered from them apparently as had her Daddy) but she was switched to Nortriptyline and that seems to be working for her. Just a thought.

Regarding trying VRT from all my experience here in UK I’d avoid it like the plague. It’s not usually recommended with unstable MAV and, unlike the US I don’t think UK expertise has much to offer in that direction. Helen

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Hi Helen(s)!
As @Onandon03 mentioned, I loved how well Ami treated me. It helped so much (at 50mg) with the visual issues, rotational vertigo and balance issues. The one issue that didn’t get better and may actually have gotten worse were the headaches. I was on Ami for 6 months and recently (3 months ago) switched to Nort. I was pleasantly surprised with how my headaches started lessening. As Helen mentioned, my daddy always had headaches so I honestly just thought that was just another way we were alike :innocent: I’ve never in my adult life gone a day without one. First time I was headache free was nothing short of miraculous! So in short, I’m now on 75mg Nort and have further improved in the past 3 months. I am living a nearly normal life :raised_hands:t3: Today I drove 80 miles in the dark, took a shuttle, an elevator, escalator and 2hr flight :airplane: Something that would have terrified me just some months ago! I hope you find the right medication for you but I of course am a huge proponent of Ami and Nort :smiling_face_with_three_hearts:

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Hi Helen, I’ve had VM for about 10 years now.

Just wanted to chime in and say I think you are in a really good position to deal with this condition as someone with training in the management of stress and anxiety.

For many a battle with VM is really a battle with anxiety. Anxiety makes the symptoms much worse, provokes attacks, and sustains attacks. Also, most of the worst effects of VM are not the vertigo itself, but rather the effects of the anxiety which is caused by the vertigo. So your training in anxiety therapy will surely be of great benefit during the process.

My advice from my own experience is that exercise is the best way to handle this condition. Basically the more of a “fitness freak” you can become the better adapted your brain will become at dealing with dizziness. I would advise a lot of running, climbing, tennis, basketball, etc - anything with a big balance component and lots of movement of the head and eyes. Exercise is very hard at first, because it makes symptoms worse, but over a long time period it’s more effective than any medication I’ve tried.

The opposite is also true: watching a bunch of TV, hours staring at the phone, or long periods on the computer, will make vertigo and symptoms worse as your brain de-compensates. In the times we live in electronic devices are a mainstay of life (I work as a computer programmer myself), but if you must be staring at screens you can mitigate the effects somewhat with regular breaks (I set a pomodoro timer when programming, and every 25 minutes I walk around and do light exercise for 5 minutes).

I tried a lot of meds, diets and therapy over the last decade, but in the end when tracking symptoms the biggest improvements came from reducing daily screen time and increasing daily exercise time.

Welcome to the forum!

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Thank you so much for sharing this. I definitely have now more information based on others experiences to discuss with my doctor in Spain or a new doctor new here in London , but I still haven’t got any appointment date, still on the waiting list…
I am a little bit scared of going on antidepressant, I would rather try other things, but I will have to consider them as I see they are helping other people like you. I didn’t know wich other med options I had besides Fluroxetine, so, thank you!

This is a real issue in all of us. When doctors told me “It was anxiety and nothing else” it made sense because I knew that, indeed, I had anxiety and stress symptoms when I felt dizzy, so I got into this spiral you describe, anxiety-vertigo-more anxiety-more vertigo. Nobody spotted the vertigo as a condition itself, and that has made me “waste” 7 years of not knowing what was going on with me…Thanks God I found mindfulness and acceptance therapy approaches that showed me how to cope and still life my life, do stuff…

Thank you soooooooo much for this advice. I´ve spent the last year just laid in bed or sofa, watching TV and series and “resting” as much as I could. I´ve felt exhausted and drained and that was the only solution I was able to come up with. I thought exercise was not doing any good to me. In the last months I’ve decided that, as hard and horrible as it may feels for me, I was going to come back to Yoga and start from there. It has to be a gentle yoga, bending forward and inversions are real triggers and need to be careful, however I am going to carry on with this regular practice. I have to.
I didn’t know though that I should exercise that much and do all sort of sports, I will definitely change this behaviour in the next months. Thank you so much for your suggestions!!!

Thank you for that @Onandon03, I almost book an appointment for VRT but I am going to give it a thought and maybe wait for the NHS appointment instead and see what I can do from there. Thanks!

Thanks, I am now considering all the changes I can implement after seeing what other people are suggesting here, I don´t feel food is a problem for me but I have to be honest with myself: I have three coffees a day, so I am going to start from there as well: Yoga everyday, no coffee and wait to see if NHS changes my medication…
Again, thanks for your reply

IMHO and from my own personal experience you will be better off doing natural VRT, walking etc. Perhaps yoga if you are used to doing that. Be very careful though. Too much unaccustomed exercise can bring on total collapse especially in people already reconditioned by being sedentary. You need to introduce exercise slow and low and by returning to exercise you were previously familiar with at the start, not a lot of completely new stuff.

With regard to the drug you are currently taking obviously I don’t know where you obtain it at the moment, but be careful not to run out because UK doctors cannot issue prescriptions for it. It comes only from hospital pharmacies under special licence from authorised consultants. If you are in a queue waiting for an NHS appointment to obtain a repeat prescription you need to speak to the doctor well in advance of running low in supplies, ie don’t wait til your due appointment in order that they can look into arrangements for you to obtain it. I have no idea how they do that, never needed to know but would suggest you give this top priority. I imagine there will be a big time delay. It can only be issued through a hospital pharmacy.

The most comprehensive preventative list you will find. Helen

http://dizziness-and-balance.com/disorders/central/migraine/treatments/Migraine%20prophylaxis%20drugs.htm

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Indeed, I am going to start doing Yoga again slowly and gradually :))
The medicine I´ve been taking for two years now has been prescribed for my ENT specialist in Spain. I have quite a few of boxes here with me just in case…

How are you at the moment Helena?

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helen

So pleased you have sufficient supplies to last. Seems you are very well Organised. You’ll find my long diary under the Personal Diary section on here quite easily I’m sure. I won’t go into detail here on your thread because that would be going off topic.

Many people end up with ‘wasted’ years of suffering under misdiagnoses. So frustrating looking back. However ‘vertigo’ isn’t a condition in itself, it has to be a symptom of some sort of vestibular disruption. In our case a symptom of ‘MAV/VM ‘which is described by some as a ‘migraine variant balance disorder’. The anxiety certainly will feed upon it. As @_Nathan says lots of people struggle with it. Helen

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