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Teenage MAV sufferer from India seeks help with relapse


#1

Hello. I am the desperate mother of an 18-year-old daughter, looking for some encouragement and help. We live in India where this condition is not very well known or understood.

My daughter has been suffering since 2016 from near constant dizziness and vertigo ( no headaches)… We went to nearly 20 doctors, who could not give us a diagnosis. BPPV, Menieres, and various other things were ruled out. She had an MRI and a CAT scan with everything normal. Eventually, we finally found a doctor in Mumbai who diagnosed MAV. He put her on medication and a strict diet ( the 5 Cs diet). She was on 250 mg Dicorate ( Divalproex sodium), 20 mg Inderal ( propalonol) and 8 mg Betavert daily ( Betahistine) daily.

After about a month, she was vastly improved. She remained reasonably well for a year and a half on this medication, and also cutting out food triggers. But in April of this year, she had a relapse and she has now been constantly dizzy since then. The medication appears to have stopped working. Her earlier doctor has now retired, so we have had no choice but to see a new doctor, who has suggested VRT in addition to the medicines. She has been doing that for about 2 weeks now with no improvement. The dizziness is so constant and intense that she can’t get out of bed.

She is meant to be going to college this year and it looks likely she will be forced to take a gap year. This is of course making her intensely depressed and anxious; it’s a vicious circle. I am wondering if she needs to switch to another medication. Do mav patients become resistant to medication? Any advice greatly appreciated.

We are both incredibly sick of doctors telling us we should be glad it’s not cancer or something life threatening. It’s completely taken over her life in the last two years, affecting her exam performance, sports, and other activities, so it is so frustrating to be told we should be grateful that it’s not cancer.


#2

I should add she’s very sensitive to meds. Even this relatively low dosage makes her sleepy all the time, and nauseous. At one point we tried doubling the dose to get her through her exams, and she ended up sleeping 20 hours a day. She’s very skinny so even a low dosage knocks her out.

I know there are a no of alternative meds on here but am worried about side effects for so young a girl.


#3

Hi, and welcome. Sorry to read your daughter’s story. I’m in UK and MAV is no better understood here I’m afraid. It’s not unusual for preventatives to stop working but I wouldn’t increase the dose unless a consultant advises it. You really do need to get her to a new doctor as soon as you can arrange it. As you obviously appreciate from your script there are also the long-term implications of such debilitating chronic condition in so young a woman to be considered. She needs to be alot better to function and lead a normal life. Meantime go back to the doctor who advised the VRT because if her MAV is very unstable and sensitive doing VRT could actually be making her dizziness worse. The exercises may need to be less challenging.

At mvertigo.org we are only a discussion support group without medical training and unable to diagnose or prescribe which drug to try. Your new doctor/consultant will do that. Sometimes they introduce a second drug to take along the current one. They may increase the propranolol. That’s a popular combination with sodium valproate. The consultant I saw spoke very highly of sodium valproate as a drug for MAV treatment however it is not widely used with women of child bearing age here in UK because it can damage unborn babies. There has earlier this year been much in the TV News with women taking it because they have epilepsy.

All our very best wishes with solving your daughter’s relapse. Hope you find that new consultant/doctor very very soon.


#4

Most people with MAV meds sensitive but do remember to tell the doctor just in case. Trouble is all drugs have side effects. Sleepiness is a very common one.


#5

Thank you, Onandon03, for your kind and prompt reply. I may not have made myself clear in my post, but the new doctor we are seeing is a oto neurologist , so I think as specialised as we can get. The VRT makes her dizzier for about 15 minutes, no more than that. I did not know i could make things worse, so thanks for that. I know sodium valproate has effects on babies, but she is a long way away from that now, so thought we could try it.

I am wondering if we should fly out to see Dr Surenthiran. It wl be very expensive for us but he seems to have many fans. The thing that stops me is that he too seems to be experimenting with meds and it may just give my daughter false hope.

I know I need to stay positive but the idea that she may be suffering with this her whole life is just too heartbreaking for words. She worked v hard and got some v good college ( university)offers, and now I am not sure if she wl go to college even next year.


#6

Hi

Great news that you have seen a neuro-otologist already. You cannot do better than that. Dr S is considered pretty much the tops in UK. I wouldn’t imagine you would gain anything much with what would be a one off appointment with him. I would think the main advantages with him are (a) that he does follow ups which others don’t necessarily offer so he is more active in managing the condition. (b) in UK like India and nearly everywhere else lots aren’t able to get a diagnosis to work with elsewhere so don’t have a starting point. Your daughter already has diagnosis and is started on one of the known to help drugs. Ask yourself what more can he offer? I’m in UK. I’ve not seen him, I’m recovering. Perhaps you could speak to somebody at his office for further advice if you feel she is missing out still.

From my own experience of MAV. I’m not a medical person. Treatment for MAV is by trial and error. There are no specific MAV drugs. They just know it can respond to certain drugs and with each individual work through them to find the best or best combination for each patient. So All consultants are basically constantly experimenting. Be it Dr S, yours in India or mine in the UK. Mine in the UK would probably have given me sodium valproate as first choice had I not already been taking a betablocker but she spoke most highly of it to me in consultation. It’s not so much a question of ‘giving false’ hope but just trying various drugs to see what works for her.

Try not to worry too much. MAV often seems to affect high achievers. She may have to postpone college a further year. It happens. There’s a young man who went to Oxford University on here with MAV, got first class Hons, had to take a year out to sort the MAV and now next year is going to start training to be a neurologist. Still taking his meds. So it’s very very sad but not for ever. She’s young.

Have a read of the information on here under Welcome section and some of the other quoted websites. There’s tons of info on MAV. It’ll seem alot less intimidating and difficult to handle once you understand it a bit more. On Dr Hain’s website (USA) you will find a migraine preventative drugs flowchart some people print off and take to their medical appointments, and lots of further drugs related info. I cannot imagine that being at all well received in any of the consultant’s rooms I’ve ever been in but the decision is yours of course.

Best wishes in your journey.


#7

Hi people,

I posted about my daughter’s migraine a couple of months ago here above, and since then I went through this forum looking for things to help.

Her doctor was terribly clueless; so I eventually went to her with Dr Timothy Hain’s flowchart. She wasnt happy at all, but I insisted on trying something new. We decided to start her on 20 mg of Amitryptylline and 10 mg of Citalopram daily, because she was very depressed. We stopped the VRT as it was making her worse.

After about 6 weeks of this treatment she showed a dramatic improvement. She is now almost normal and walks around as usual, though she still is not keen on the exercises… I am now very confused and have the following questions that my doctor cannot answer:
(1) Was my daughter depressed or was it a genuine case of MAV?
(2) She has been feeling a bit nauseous and very drowsy the last few days, though until now she was tolerating the meds well. Is this likely to be the Ami? Its now nearly two months on Ami. How long should one be on it?
(3) My daughter wants to reduce the meds but I am really not sure whether to do that. We have no medical guidance at all and given I was the one to suggest ami to the doctor, I am beginning to feel that I am the doctor here!


#8

This is great news, well done.

With those significant vestibular symptoms your daughter is unlikely to have been just depressed.(I personally don’t believe MAV is just a brain issue in any case but the cause probably varies)

The aetiology of chronic dizziness has not been determined and almost the only way to treat it is explore the MAV protocol and see what works. Nature takes care of any healing required.

Amitriptyline is quite effective in a lot of cases on its own.

Amitriptyline would make you drowsy but not nauseous. The nausea is probably break-through MAV symptoms. The drowsiness reduces over time … you could always drop to 10mg but that might make symptoms escalate. I used to get nauseous for hours on end and Amitriptyline really sorted it out for me. However I would still get some break-through nausea some days. It’s not a silver bullet and it won’t cure you … it’s just dulling the symptoms.

If your daughter is feeling ‘mentally’ less anxious and more settled then Citalopram is probably the one to drop. I was offered the same drug to deal with the mental impact of the condition, but resisted. Once Amitriptyline took care of the worst of the symptoms, my anxiety and depression fell away significantly. It may be all that’s required to keep a cap on things.

However, since that’s an SSRI, it might be worth researching the impact of that even though its a very low dose.

Amitriptyline is a very effective anti-nausea drug (where it relates to motion intolerance) so I would be careful not to drop that. In time she may be able to drop that (but FYI it took me 1.5 years!).

That’s my unqualified 10 cents.

PS Experience on this site and resources like Dr. Hain’s website together with your local doctor may be all that you require initially.

Most people on here now know more than their local doctor about this condition and how to treat it :slight_smile:

Best of luck to you both with next phase.


#9

Turnitaround,

Thanks for your very kind and long reply. It was your experiences with Ami that prompted us to try it in the first place.

I am afraid I spoke too soon yesterday. My daughter was feeling much better, but then in the 24 hours since I posted, the dizziness and general MAV symptoms has come back:( Clearly the nausea and drowsiness were due to MAV, not the Ami I think as she tolerated the Ami fine for the last two months.

Not sure what to do now. Just one q: I know you are busy, but would you suggest increasing Ami to 25 or 30 mg per day? So far, as I said, she has tolerated it reasonably well.

I am just so sick of this constant ups and downs. I know you said it’s not a silver bullet.

I am pretty sure it’s not depression now.


#10

It’s worth trying going up but I suspect there comes a point when this will no longer provide additional value.

I would recommend exploring the diet and making sure she gets some long walks in to both help her adjust and reduce her stress levels.

Also coming to terms with spiking symptoms is important whilst it’s unstable. It should improve over the long term but important not to panic when things get temporarily worse. Relapses always pass.

If symptoms are causing anxiety go outside for a walk. That usually helps with coping.

My heart goes out to you both. It’s very tough to have to deal with this at a formative age and stressful for mum too.


#11

I’m so sorry to hear about your daughter , I wanted to chime in because I had a mav crash at 19 and athough it took a while I came out of it fully recovered with no medication. Seems ur daughter may require meds but time is also a healer meds are there to stop the attacks and allow the body to heal. I’ve crashed again but I went 10 years symptom free. Not a doctor but I know you can keep going up with ami every 3-4 weeks until symptoms stop. 20mg is still a low dose I think the highest on Ami is 50mg so it could be worth going up and seeing if it stops the attacks. If not then maybe seek a neuro to add in another med. I am on pitzotifen which is used for migraine and it’s generally a safe well tolerated med. anyways I’m not doctor just my two cents. Seems like @turnitaround has given some great advice as always


#12

You should try flunarizine. Its a great med for Vestibular migraine. In India it goes under the name Sibelium. It is the med that an India neuro otologist wanted me on. Hope your daughter gets better soon.


#13

Thanks so much, everyone, for your comments. I keep reading posters say " we are not doctors
but I have had more help on this forum than any condescending doctor I have ever been to, and I have been to nearly 15 so far!

James/turnitaround, I realise it’s important not to panic. Afraid my daughter is currently so dizzy and sleepy she can’t manage a walk. Her bad spells tend to last for weeks, not hours or days like other luckier people.
regarding diet, we are v strictly avoiding the 6 C’s, though it’s so hard for a teen to not eat chocolate.
Yes, it is indeed tough to deal with at this age. I would send her to this site for support but I am worried she might gravitate to the not so successful diaries! One q again: do you think Nori would have less of a sedative effect?

Amylouise, yes 20 mg is quite low but she is v v skinny and slim of build ( 5"7 and only weighs 46 kg now), so meds tend to knock her out. Pizitofen is next on my list to try. Even though the docs here have not even heard of it.

Get Better: I forgot to mention earlier on , but she has tried Sibellium which was almost the first thing she tried. It didnt work at all for us. But thank you for the suggestion.

I see reading through the forums that so many of you have mav as a consequence of an accident, or with tinnitus or some other hearing problem. My daughter has not had any accidents, and she has absolutely no ear problems. The only problem is constant 24/7 dizziness and nausea. Nothing else. Migraine does not run in my family either. The only thing I can think of is that this is somehow hormone related. But what does one do about hormones?


#14

I think the majority of sufferers go through a phase like that.

My bad spells have simply got shorter over time but it also depends how you define ‘bad spell’. It’s all relative and people often don’t talk about the permanent imbalance that they are suffering as their baseline because that’s a given.

I’ll defer to those who’ve tried both. I can’t at present recall anyone comparimg the two in this regard. Ami’s effects mostly wear off so may be just a question of time. It will always dampen your alertness slightly though I suspect. I’m fairly sure Ami is a stronger vestibular suppressant so that might mean she’d need a higher dose of Nori. Best discuss that with someone really savvy with the pharmaceuticals.


#15

Hi @Journeywoman I never had an accident and have had this illness on and off since I was 12. It’s genetic for me but yes some can get mav after injuries or infections no one know how or why tbf the brain is a confusing thing that’s still not well understood .

As for your daughter yes that is tiny , I’m 5,7 and 69kg I tried ami and nort both were sedating but did pass after 4/6 weeks same with pitz. Side effects do usually settle. I would def go up on ami and see how she goes you don’t want to give up too soon on a med.

Also you haven’t said is your daughter taking supplements I take something called dolvent which has b2 coq10 and magnesium. All the things suggested for migraine so this may be useful too.

Please let me know how she gets on my heart really goes out to her
A x


#16

Hi

With the female of the species and making allowances for trauma/accidents, I’d say ‘Spot On’. I don’t think even an impending firing squad would ever convince me mine was other than hormone dependent. And, as you say, what can one do about hormones. Precious little I’m afraid,

Afraid that’s common. Mine and many others have had them for years although I know you won’t tell her that.

As you know (we’ve conversed before) I’m no medic but yes, theoretically Nori should have less of a sedating effect than Ami. The sedating effect is probably caused because Ami has high antichlorinergic properties. Nori has less. Nori should be better tolerated. Pizotifen is also lower than Ami in antichlorinergic properties, just for future reference. That’s the theory. There’s no guarantees however and tiredness and indeed dizziness are common drug side effects and migraineurs are often hyper med sensitive always to anythjng they take. Having migraine constantly is exhausting in itself and having to use so much mental energy to balance exhausts the body anyway.

Don’t know if you have already heard but Under 25 year olds tend to have more, stronger reactions to antidepressants than older people anyway. Many medics seem to try not to prescribe them preferring betablockers instead. Helen


#17

Hello there, just wanted to chime in about hormones, for me hormones area huge influencer on my condition. I’m mid 40’s and trialed hrt, it didn’t help much however when I met an expert in hormones, she told me had I been younger, late teens early 20’'s etc…we could have tried the contraceptive pill and found one to help stabalise the hormonal fluctuations. It won’t stop mav might reduce severity with meds. Get some expert advice if you can. I hope she gets some relief, you are a super mum by the way, you will get good days again, just keep taking it one day at a time. Take care x


#18

Hello

I am back again to ask for more help on the forum that has helped more than any super specialised neurologist I have ever met. I am especially asking for help and feeedback from Ami users. I will try to keep my questions super short as I know you are all terribly busy.

Long story short ( pl read upthread), my 18 yr old daughter has been suffering from MAV for two years counting. Currently , she is on 20 mg Amitryptaline, 250 mg Dicorate, and 10 mg of Cipralax. We started the ami the end of July 2018. Ami seemed to ‘work’ after a month or so, but she has had two relapses. The first was in October and lasted a week. She was then normal with zero dizziness till mid January when she inadvertently ate some MSG in a product. ( One of her triggers) Currently she is in the middle of a v bad relapse which has lasted two weeks. We tried upping the AMI to 30 mg but she only felt worse and v sleepy. She only weights about 45 kg so that is a concern. Ami seems to be making her lose weight instead of vice versa.

My questions:
(1) Does no dizziness for 4 months ( from September to January) except for two relapses mean the Ami is working as well as it can be expected to? Do you think we should persist with Ami? Until the latest relapse she wd often feel slight dizziness during her periods but it was only for an hour or two. Is that Ami working?

(2) Currently the AMi does not seem to be working. Should we switch to pizotifen or verapamil? or nori? I am reluctant bcos those seem to take months too.

(3) Our doctors here are pretty damn useless and several want to take her off meds completely and try yoga etc. We tried that last year and it made her worse. But she is now really sick of meds and sometimes wants to come off them all.

(4) Does AMi long term have any side effects at 20 mg? She has had hair loss, weight loss, sleepiness, and a general fuzziness.

(5) Have any of you found any emergency meds to work? I am told Ami is a prophylactic and not effective if you already have an attack. She has tried Stugeron ( cinnarizine) and Stemetil ( prochlorpezine). But neither have worked for her and instead made her even sleepier and given her stomach aches.

Grateful for any help. I know I am asking a lot.


#19

The dizziness expert in the US is Dr. Timothy Hain. He maintains a fantastic website that is used as a resource by both doctors and patients. He has a page on MAV and more than halfway down (it’s a very long page), he has a flowchart that shows his thought process with drug treatment for MAV.

The page is here:
http://dizziness-and-balance.com/disorders/central/migraine/mav.html

If you look at that flowchart, you’ll see that he recommends Ami in doses ranging from 10mg/day to 50mg/day. (The “HS” abbreviation means “take at bedtime.”)

Even though your daughter is small, it may be that her dose is not high enough yet. I think most MAV doctors have their patients start on a lower dose, then wait a number of weeks and if their symptoms don’t resolve, they go up to the next higher dose. Then they stay there for a number of weeks and go up again if they need to.

I’ve never taken Ami but many people here have, so maybe they will chime in with their experiences.


#20

You are bound to get relapses with Amitriptyline. Migraine management is a combination of med, suppplements, diet, sleeping same time everyday, exercise and trigger avoidance. Don’t expect perfection from the med but 50% reduction as the definition on success. Try Flunarizine, I met a Neuro-Oto in Chennai in India and he highly advocated for this drug. We don’t get Flunarizine in the US. Yoga can help as a add on calming the parasympathetic nervous system.

See below article for dosage of the different meds