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Vestibular migraine, palpitations, botox

I have suffered vestibular migraine for 7 years now but only correctly diagnosed since 2017. I used to have flare ups lasting 6 months, after which it would subside, until a year later when it would return. For the past 2 years now though it’s been constant and I cannot identify triggers. I have tried diet, riboflavin, getting good regular sleep, eating patterns etc etc with no success. I have tried Amitriptyline, Nortriptyline, Gabapentin and Topiramate, all of which only made my VM worse not better (i couldn’t tolerate the lowest start dose of any of them). After seeing a neuro-otologist and a neurologist, I now have an appointment with Dr Zermansky at the headache clinic at Salford royal in april, for the consideration of botox. I am at my wits end with this condition and simply cannot live like this (i am bedridden most days and can’t function - and yes, i’ve tried keeping active because it supposedly helps and being inactive supposedly makes things worse but it does not work that way for me).

Ever since vm began i have also had ectopic heartbeats which i know are due to the vm because it disrupts autonomic function. But i have read that migraines can increase the risk of heart attack, stroke and abnormal heart rhythm like AFib, so i am concerned that because i live with 24/7 migraine that hasn’t reacted to so many treatments so far, that i may develop a heart problem. I realise that most people who achieve some sort of success treating 24/7 vm never totally get rid of symptoms, so it worries me what could happen to us having to be in permanent migraines.
I am so fed up with this condition ruining my life. I’m 30 years old and have no other conditions yet this is robbing me of life. Everything i have tried has done nothing to help. I don’t even know why it’s 24/7 with no identifiable triggers. (i’ve had all sorts of tests, mri scans and been examined by multiple neurologists so i am absolutely certain it’s vm, my symptoms fit it perfectly. I just worry what other things might come about because of having this, and wonder if i will ever actually feel any better.

Has anyone successfully treated 24/7 VM with botox? Has anyone who had ectopic beats due to their vm managed to get rid of the palpitations too?

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Hi there. Sorry you are suffering with this nightmare of a condition. I have had migraines most of my life, they are in my family and vertigo and dizziness on and off for years and it became chronic in 2017 and I was only diagnosed by a ENT specialist in March 2017. I have a number of things going on but I do get the ectopic heart beats and fluttering. It was really bad about 15 years ago and I saw a heart specialist and wore a heart monitor for a day, they were meant to call me back to wear one for a week but they never did. I saw a different specialist at the same hospital about the results and I asked what he could do and he said ‘nothing’ at the time!I had a ultra heart scan as well.I think it was hormonal although my sister is younger than me and has got heart problems, maybe due to other conditions. They were horrible and really frightened me and I could feel them all the time!I was diagnosed with ‘ME’,post viral syndrome at around the same time.Have you had your thyroid checked?R.

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Thanks for the reply. Sorry you have suffered too. Yes i had thyroid checked, told it was normal.

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Hi, and welcome. Sorry to hear your suffering. VM can be pretty relentless. Although I’ve no known heart related problems I can sympathise because I too have, like a few others on here, been bedridden with this on numerous occasions over the years most recently for nine days in January of this year. It does so restrict life it can getting pretty depressing. I’ve been lucky in that I’ve been able to tolerate medication which helps considerably. (You can read my full story under Personal Diaries.it’s been going on a long time now). Apart from the MAV I have no other health issues and sometimes it seems amazing such a single thing can have such an devastating affect on our lives however it pays to remember MAV/VM is a ‘variant balance disorder and as balance is such a fundamental part of our make up I don’t suppose we should really be that surprised,

There must be other things not yet tried so all you can do is keep searching for an answer which you are already doing by seeing a consultant about Botox next month. Don’t worry. Something is bound to turn up. If you’ve been given same diagnosis by many and it’s meaningful to you and you feel there’s no point revisiting the diagnosis, may be time to look again at preventatives. Although you’ve tried some, others exist. Quite a few on here are experiencing success with Venlafaxine which is one of the most recently found to be successful as one example. New injectable medicines specifically for migraine prevention are appearing over the last year or so and now being tried on people with VM with success which is promising. Even the UK NHS is launching them this summer.

You, me and most of the others too. Nobody seems to know much about it generally apart from that various drugs may control the symptoms. Not much research has been carried out. Nobody knows what causes migraine in the first place. All still a bit of a mystery. Scientists seem to prefer Black Holes or reaching Mars or so it seems to me.

Anxiety will fuel VM. You’ve possibly already discovered that over the years so it’s best to just live one day at a time and, as Granny used to say, ‘jump your stiles when you get to them’. I doubt VM is life limiting. If it was thought it might be I feel sure far more research would have been done into it already.

My good friend @Jojo65 is one who’s had a few rounds, and there are several others I’m sure will get back to you in due course. Results look promising. You’ll find support here on your journey. As you are under Salford @nicola might be able to give you some clues about what other expertise is available there because I think she can recommend somebody she saw there.

You’ll find alot of info on this site. And the Search facility’s very useful too. All the Best, Helen

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Hi Missmigraine

The answer to your question basically is " yes" i have suffered 24/7 symptoms including Daily Chronic Headache since Nov 2014 and nothing helped to say i was in a state of depression is understatement of the decade, i wanted to go to bed and never get up again…then in 2018 i started Botox treatment then Venlafaxine was added…boy did that make a difference…ABSOLUTELY. Im at about 70% on a morning and even better later in the day. Still a fair way to go yet but i owe everything to my neuro for giving me my life back to a certain degree…i still work but have up and downs whilst there but im improving. I had SEVERE MAV…resistant to everything
Jo x

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Gosh jojo thank you so much for your reply, it gives me hope. I spent alot of time in Facebook groups for mav but it had abad impact on my mental wellbeing. I got tired of feeling judged by others who had mav to a lesser severity and insisted on pushing through (which only makes things very much worse for me). I got very disheartened at reading about people who got better from diet or medication, or from anything i’d tried that failed to work for me. The success stories only depressed me further. So it’s brilliant to hear that botox has been part of the treatment for you especially since you mentioned other things didn’t. Both neurologists who i saw said i looked depressed and i said to one of them “i’ve had this constant for 2 years, i can’t do anything i want to, how would you feel?”. They just don’t get it. I’ve spent 9 months being pushed from one waiting list to anther, between different consultants, who only shove me on to someone else. So i’ve had no treatment for 9 months. To say i’m fed up is understatement of the year. But it gives me hope that you are feeling better even after such difficulty so thank you for sharing.

Thank you so much Helen, for your reply. I appreciate the support. For a good long while i’ve felt that the way to get better is to avoid triggers because there’s very little effective treatment (that’s how the internet and doctors made me feel) so i felt useless at not being able to identify anything. The only thing i know for certain is my monthly menstrual cycle. I’m sure there are internal triggers that aren’t recognised, chemicals or hormones that occur naturally in us that are high or low that trigger some of us, because i swear i have some days worse than others for no apparent reason. But “migraines don’t happen randomly, identify your triggers”… I ended up obsessing for such a long time because i listened to advice from the wrong people.

At the moment, i don’t want to try any more pills. They just increased my symptoms rather than prevent them, even at the lwest dose. I feel that all the meds would just have the same effect, since all the ones i currently tried did exactly the same thing despite being different types. So at the moment i want to try botox (as long as the consultant agrees to it) and i would be very willing to try the new injections, or other options such as Gammacore devices or acupuncture. Going back to meds is a last resort for me, I feel. Hopefully i will find relief before it comes to that.

Thanks again for your reply. I already feel a little more positive.

If you are eligible for Botox dont be put off by the increase in your symptoms for the first 2 to 3 weeks im like that after every treatment but then have weeks pain free before im due another lot. I get round 4 in april. The Venlafaxine has helped outdoor visual vertigo so much so.please dont rule out meds completely…the 2 go hand in hand and work well together. I kissed and hugged my neuro last time i saw her…thats how desperate i was. She was filling up cos she had see me suffer for over 4 years xx

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Hello. I have lived with SVTs, a form of tachycardia or palpitations, and heart block where my heart skips beats, sometimes every few seconds for days on end. An echocardiogram did not show any structural reason why this should be happening so I have learned to live with it and not to worry about it. That was difficult at first but twelve years down the line I am still here! I hope my story helps you to relax a little about your palpitations.

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This rings true for many of us on here. It’s really hard to describe to people how difficult it is. People with chronic conditions are often marginalized as not trying hard enough or doing the right things. It gets worse when being judged by people who have recovered and seem to think they have the magic recipe that will cure everyone else. And at the very least, people are just often confused, not able to understand how bad MAV is or if it is a real thing.

But hopefully you realize how strong you are to survive through this mess. That’s the main thing I’ve learned with all this - there exists this innate ability for humans to endure incredible suffering and continue to find resolve in one form or another. Just keep going!

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Thanks, I will keep that in mind. Everyone kept telling me that i might feel worse at first with the medications but that it would wear off and i’d feel better. But it never did, i endured 3 months on each pill of getting worse and worse every day until i couldn’t stand it any longer, it never eased off until i stopped the pills. So i desperately hope botox won’t do the same.

Im sure you’ll benefit from Botox if you suffer pain along with Vestibular symptoms…i absolutely couldnt work without it.
Jo.

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I don’t actually have any pain. It’s squeezing pressure all over my head but not pain. I could learn to live with the headache, it’s the dizziness that’s debilitating. Thing is, a mild or moderate headache doesn’t stop you from functioning (severe pain does, obviously) but even mild dizziness does.

I hope Dr Zermansky will be understanding and open minded, and be able to help me and not just throw pills at me.

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I dont see why you wont be eligible for Botox…i trialed 9 meds, accupuncture, VRT, anything they could think of…and Botox has helped the most with pain, pressure and ear fullness…Venlafaxine helps with the rest.
Jo

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That’s like me although generally the pressure is at the back of my head. When it’s really hard I am confined to bed unable to stand up, ie without balance,

What a brilliant description. That’s it exactly. Must remember that one.

I wish you luck with the consultant. I checked him out. He expresses interest in migraine so that’s a good sign he might be more inclined to help you manage it. The neuro-otologist who diagnosed me told me he wanted no further involvement because it wasn’t within his field of interest and declined to see me again but from what I’ve read this Dr Zermansky should be interested in your condition. It’ll be interesting to see what he prescribes. Whether he wil consider Botox as you don’t suffer head pain. Still not too long to wait for you to find out though I appreciate it seems ages waiting. Helen

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Thanks. I know i am eligible for botox, I meet the criteria and it was recommended it by the last consultant i saw. He would have given it me if he had the authority to but you can only get it from dr zermansky. He’s a migraine specialist and apparently very good in his field but i heard from a couple of people that he had a dismissive, bad bedside manner and left them in tears. Everyone has different expectations, i suppose, so I will just have to see how he treats me.

There’s a study on the internet somewhere that shows botox successfully treats dizziness from vestibular migraine, not just pain, but it only looked at one patient.

I’m sorry about your suffering. I’m not surprised that you would feel depressed and worried. It’s not for anyone on Facebook to judge your response negatively.

I tried some Facebook groups too, but ended up leaving most of them. I don’t think it’s an ideal space for this sort of discussion.

I don’t believe in “pushing through” with this illness. I think we know individually what will work for us. But, MAV is not a case of mind over matter, thus calling for “pushing through”. It’s a genuine illness and a very frustrating one because there is no uniform way of managing it. I hope that you do find a course of action and treatment that gives you some relief.

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That seems odd to me. I assume this is on NHS. I cannot see anything relating to restrictions to specific consultants in the NICE guidelines.

Consultants with bad bedside manners seem to abound in the NHS. I’ve seen a couple myself whose comments could have done worse than make one cry. Hope for the best but do go in determined he won’t do the same to you. The NICE guidelines are very specific about qualifying criteria so it may be helpful to check that out beforehand and go prepared. Both mentally with answers to possible questions and some written notes maybe too. If nothing else it will show you are in earnest and might gain you some Brownie Points. I know you said you know you have reached qualifying criteria already but it might help. Helen

From what i understand, because botox is expensive, only the headache specialists can prescribe it, which means you have to see them to be assessed. The general neurologist can’t just refer you for botox treatment. Dr zermansky is a botox migraine specialist who has written research papers on it so i guess he needs to be the one to say yes or no to a patient. I don’t know if he actually directly does the injections or not.

The last 2 consultants i saw were really lovely guys, very compassionate. One of them gave me a hug. Nicest doctors i’ve ever seen. The GPs were dismissive, misdiagnosed me for 6 years with congestion amd and ear fluid, until i went to a gp who properly listened to me and appreciated how bad I felt.

Makes sense. The NICE guidelines constantly refer to qualifying by number of migraines and headaches experienced per month and viewing patient’s headache diaries.

Yep. Medics are bit like pot luck. I always had dismissive GPs with MAV. Still have. Helen