The Vestibular Migraine Community
Please read our welcome post and user support wiki!

New here ... looking for reassurance


#21

Helen

Propanolol was my 1st ever med i tried…and forgot. I also forgot to mention i take low dose Gabapentin as i still get ear pain and it helps with that.

To be honest though Nori & Flunazirine never got a fair trial…only 1 month each. I just felt terrible at the time i was given them and gave up far too soon. I think i would even give Propanolol another try. My neurologist wont give up…she is wonderful. It must be hard for her knowing shes giving me the right drugs but im not able to tolerate them. Frustrating for her and myself.

Jo xx


#22

Hello Elizabeth B

I have just read your post and i had exactly the same conversation with both my ENT & Neurologist. They say my common & classic migraines i had occasionaly when i was younger have morphed into Vestibular Migraines as i have aged. My MAV didnt rear its ugly head until I was 49 years old. 4 years and counting its still going strong

Keep well

Jo xx


#23

Hi

It’s one of the distinct patterns I found reading around. You’ll find some on this forum under Womens Business section. You were very lucky. I’ve found the specialists to be very tight-lipped, you’d think each word cost money but the info is out there. Thanks to the internet. You sound just like me, same pattern. Childhood ‘sick’ headaches and travel sickness, mine disappeared totally at menarche only to return as MAV/vertigo episodes (no headache) soon as I hit menopause. They’d been gone so long I’d forgotten why I never eat chocolate.

It probably doesn’t work like that but I am having success with Propranolol. Wonder if it would work for you too. Does seem one of the kinder drugs offered too. Must admit it took longer to work fully than literature suggests, for me certainly. Also you do need to reach an effective dose and/or the highest tolerated dose or maximum allowed dose with Propranolol. I ‘wasted’ a year on too low a dose because I had no professional medical guidance about it at all.

You do seem to have got yr head around the MAV. Saying it might be good idea to give some drugs a second try. When one’s really ill, at the start, it’s easy to blame the drug for side effects that are in reality just the condition changing. Once a bit better might be able to better cope with minor side effects than before. Sometimes it’s ‘ better the devil you know’ isn’t it.


#24

Helen you are entirely correct. With the exception of Topiramate which made me ill from the very 1st tablet its true i was so ill i couldnt handle the other meds for more than a few weeks and the MAV would wax and wane and when i felt at my worst i would always blame the meds. Now im having some pain releif from the Botox ( as i had chronic daily neck pain and varying degree of headache) I feel i may have some stamina to give maybe Propanolol or Nort or even Flunazirine a second go to try and wipe my dizziness and balance issuse out.

Helen…do you believe that if you resolve the migraine the dizziness will eventually disappear or is that just wishful thinking?

Forgot to say…i have even been offered an HRT patch just to see if it would make a difference at all.

Jo xxx


#25

Hi Amylouise!!! I’m a bit surprised you aren’t on diazepam (valium) given how severe your symptoms are. Its function with vertigo conditions is to suppress the vestibular system which can give mild to moderate relief.

Also, I would see a Neuroautologist (not sure if Brits uses the same title :slight_smile: ) but they are a Neurologist who specializes in the vestibular system and auditory issues that are neuro related. They are rare (at least here in the US) but it took one to definitively determine what type of vertigo I had.

As for the light at the end of the tunnel. As my condition progressed, episodes became worse and more frequent, eventually having to give up my career, and with me (and yes I am kind of a freak of nature) I either couldn’t tolerate most of the meds, or if I could they did nothing, I felt the same as you. But with some time, and months of therapy (I got stuck in a very angry stage, and I’m not an angry person), I “adjusted” as best as I could. Eventually I reached a point where the vertigo came in episodes of 2 - 6 weeks (average 2-4) and then a week to 10 days in between. So I do everything I can to make those breaks between episodes enjoyable and do the things I want.

But I didn’t give in easily. I consulted with ever vertigo specialist around the world I could find, questioned, debated, argued with doctors, talked to a lot of people on various boards like this, spent every penny I had to try and find a solution. That may not sounds good, but for me, at least I know I did everything I could to try and find a fix.

So hang in there. Use boards like this for support and to vent. And don’t do what I did at first…not tell the people closest to me what was going on. You’ll find if you let them in, they will be an amazing support.


#26

Hi

I’ve never heard of or read of valium being used in the treatment of MAV in UK. I think it’s much out of favour generally these days in Britain. Used to be used frequently generally. Because It suppresses the vestibular system it reduces/stops the brain from compensating and would be frowned upon for the treatment of MAV. One or two of the anti-sickness drugs that are used are given to be taken very short term, ie up to 3 days or so to use during acute attacks, for the same reason, they stop the brain compensating.

Yes, we have neuro-otologists too. I saw one. They are indeed rare enough to be on an Endangered Species List. Here they are also extremely expensive (not that it’s possible to put a price on yr health of course) and I suspect waiting lists to see one on the NHS go on for ever. Amylouise has been very fortunate to have seen Dr Surenthiran who is The Top MAV Consultant in the UK. I doubt she could better that. Though it’s always good to be aware of other available options for sure. As you have experienced MAV can prove a long road
And, as you say, best not to give in easily.


#27

I don’t think it’s wishful thinking at all. Theory is the dizziness is a symptom of the migraine therefore if the preventative meds control the migraine effectively it will stop all symptoms so the dizziness should go. From personal exp. I think it might hang on for some time. Sufferers do seem to find some sort of ‘imbalance’ does rather drag on after the other symptoms have gone.

HRT - do hv a read on Womens Business on this forum about this. I’ve reach conflicting opinions here and elsewhere. The impression I got was it didn’t help but you never know. Perhaps all those it helped are so well, they are out enjoying life and never have time to read/write vertigo forums. Then individuals vary. Really you’d imagine it would help but I’ve never fancied it anyway. Maybe one day our hormones and brains will reach an amenable truce and decide to live together in perfect harmony and our MAV will disappear. Yes, and maybe I’ll just pop along and have a coffee with the fairies that live in the toadstools at the bottom of my garden!


#28

Hi

You are correct in that valium MAY prevent compensation. However, that is in the case of when MAV is caused by trauma (such as head injury or stroke) or is unilateral as opposed to bilateral. If MAV is bilateral, there is no opportunity or an unimpacted side of the vestibular system to compensate or the impacted side since it is equal on both sides.

Also, yes here in the US, valium is frowned upon for anything these days thanks to nearly every household having it in their medicine cabinets to take when one was upset over burning dinner! (Idiots!!). But in vertigo cases, including MAV, it is used when nothing else works to help reduce the symptoms during the episode as part of compassion care. When you have exhausted all avenues like me, you are left with anything that will reduce the severity of each episode.

In terms of Dr Surenthiran, that may be one of the Dr.s I actually consulted with…if they are private (I’d have to look back over 10 years of records to see for sure). Oddly, the NHS wouldn’t allow for consultations from US citizens…for some reason they were willing to turn down the fee of $15,000 - $20,000 for them to review my records and video chat with me and my Neurologist….I had always thought the NHS was strained for funds. but who knows. I do know one of the vertigo specialists around the world I did consult with was in England, and Sweden, and Switzerland, and Italy, and Australia, and Argentina, and Canada, and everywhere in the US. One of the biggest things I learned from all of that, is there is very little that “vertigo experts” agree upon. So then it is up to use to look to message boards like this, seeing what others have tried and brining that to our doctors. I have yet to meet only 1 doctor who has ever spent time on one of these boards and that is Haines out of Chicago.

But yes, I did learn the hard way not to give in. I did that once. I’m not sure I would do it again unless it suddenly started to get worse again, and in that case, I’m not sure I have THAT much fight left in me after all these years…but one can surprise themselves!! :slight_smile:


#29

Yes i experience most of your symptoms. I had a black eye from migraines and found it weird untill i saw your video on facebook and knew it was a migraine symptom :slight_smile:

As for the combo it is a mixed bag of ok/bad/worse and good’ish days. Yes nothing is quick in the MAV world.


#30

Hi

Same old story as with everything else, the Valium. The few spoil it for the many every time. Hospitals here used to hand them around like sweets as did dentists. I found them helpful as a young person with the dentist because I’d had terrible exp. with one dentist when about five. As an adult had two for backpain once slept so solid nobody could wake me for 10 hours. You could probably have removed my tonsils and it wouldnt have woken me. Now I see that might have been to do with the migraineurs hyper sensitivity to meds. Even the GP didn’t believe it at the time.

Think your health organisations are more sympathetic to things like MAV. Lots of medics here don’t recognise it even exists. Nine doctors in my practice and I don’t think any of them have heard of it yet. They think it’s all ‘anxiety’ but are too polite to actually say so. Still, as you said, even the experts can agree between themselves. Didn’t know Dr Hain had actually frequented this board. There are records of various emminent bodies answering posters questions somewhere on this board that, although ‘old’ obviously are still relevant and very worth reading. Not quite sure where they are but I bet I know a lady who does. @Manatee? Pls.

The NHS really is the organisation ‘which passeth all understanding’. It really is at breaking point having been pushed to deal with things far outside what it was set up and is funded for. In fairness they can be brilliant with life threatening conditions. Have a cancer scare and you’ll get dizzy flying around departments at a hospital at such speed your legs don’t touch the floor. Same with heart conditions. Guess they just have to draw the line somewhere frustrating as it is. We MAVers just have to our own advocates, as you did, and would no doubt do again if it came down to it. For yr sake I hope it doesn’t.


#31

Hi

The point in questiion

Strange us discussing that. I’ve been tweaking the times I take the meds trying to obtain better 24/7 cover for couple of months. Seemed taking them later than 9.00pm’ish I’d wake up next day feeling like I was awake but my eyes or sometimes my brain wasn’t. Splash cold water did nothing and it would take an hour maybe to wear off. Thinks must be the pills. Then last eve completely forgot them til 10.15 pm maybe but later, thought mustn’t miss a dose, will just have to put up with that groggy feeling in the morning. Took them, went to bed, slept like a log as usual and woke up this morning feeling bright as a button, wide awake and better than ever since MAV went 24/7. So, bang goes another theory.


#32

What meds are you on Helen? Yet another day carted home from work for me…lasted 3 hours. I was rolling around like i was drunk…then the headache. Im going to take an abortive and buccastem and lie down…this is the pits

Jo xxx


#33

Propranolol. Eventually, to gain some control, not enough at first for a whole year and now, about enough to floor an elephant, but it’s working. With Propranolol (no idea if it applies to others) there is a dose formula pro rata to bodyweight. Rather like worming your puppy! @GetBetter told me about it. Can explain if yr head is up to it but wouldn’t imagine it’s general knowledge in UK. You are UK based? I was having attacks that lasted 8 full days and nights then instead of a couple a yr suddenly 4-5 in nearly as many weeks. Yes, barely a day between to even start to recover. By that point I have taken Rat Poison if somebody in authority said it would help. Mind you it did take some time to really work. With MAV the only thing that’s instant is the onset I think.


#34

Thanks so much Elizabeth and so sorry you are also suffering with this nightmare .

I do agree with a lot of what your saying and I know it could be much worse . To be honest I can hack the dizziness to an extent I’m used to it as been dealing with it since I wasn’t 13 however the constant derealisation is unbearable for me it makes me feel so awful and hard to deal with . Do you still have this constantly ? I do wonder if an anti anxiety med would help with this .

I have tried osteo / Accupunture / vrt / a few meds before my current combo

I guess in my head I assumed I would take a pill and be cured silly me in hindsight . I have come a long way since 8 months ago that’s for sure . When my first med didn’t work it sent my health anxiety in to overdrive I kept thinking I must have something else wrong with me so being here and on other groups has reassured me . I never thought migraine could be this bad or be 247 .

I do hope you also get some relief I guess I’m finding this a bit tough as I’m also 30 and would love kids in the nearish future but I am not welll enough and can’t be on medication while trying . I am very happy to find others going through this it makes me feel far less alone .

Are you currently taking anything now Elizabeth ? Xx


#35

Just reading through your posts :slight_smile: I’m on prop and I have felt some change at 60 but not a lot I wondered what dose did you take when you didn’t find it effective compared to how ? I question this as my doctor said people give up too soon on meds when they really just didn’t reach a therapeutic dose so now I’m determined to stick it out unless unbearable

As for me I had episodic Vm as a kid I just never through it could turn 247 and be as bad as it is . Although to be honest my worst symptoms aren’t the dizziness now more the visual ones snow and light sensitive and the chronic derealisation :confused: if this would go I think I could cope a lot better by far the worst symptoms for me x


#36

Thanks so much for the reply and I never thought any of this could be migraine :confused: are you currently taking anything to ease off symptoms ?


#37

Hi paul
Thanks so much for the reply I actually begged for Valium after reading it could help and was given 20 5 mg tablets but only for emergencies .

I read someone online took Valium daily and was symptoms free not sure how that worked.

It’s good to hear your attacks have slowed down I think for I can’t understand why I’m having 247 symptoms the dizziness lessens but the constant visual snow head pressure and derealisation is constant did you have any of this ?

I am struggling to get my head around this being migraine but I am doing most proactive things therapy osteo doctors rehab ect I can’t do much more than that .
I also have felt very angry therapy has helped with this I know it could be worse but when symptoms plague ur life you long to be normal . It is reassuring to hear regardless of meds you have improved :slight_smile:


#38

Hi Amylouise

I remember reading online of somebody who did VRT for quite a while and was then virtually back to normal. Found out much later she’d also been taking Propranolol the whole time as well but hadn’t mentioned it.

Appreciate I’m not Paul but just felt I had to mention the above.


#39

Hi Amylouise

I rather feel the anxiety that almost inevitably follows MAV seems to be hitting you a bit hard at the moment. Perhaps you should ask for some anti-anxiety pills to tied you over for a bit. You need to give your poor overworked head a chance to chill. Try to accept MAV. It is what it is. It’s rubbish and it’s stealing your life away at present. It’s become 24/7 symptoms for you like many others on here. That’s what it does. There is hope. You will get better. It’s not for ever. You will have to make temporary changes to yr lifestyle etc but it’ll be OK in the end but there is no magic pill and no quick fix unfortunately.

Your doctor is really clued up. You are lucky. I doubt mine knows what day of the week it is regarding MAV. You do need to reach an effective dose and stay there to achieve success. 6-8 weeks before you see somevprogress. At least 4 months before you know it doesn’t appear to be working and people usually stay on the drug a year at least afterwards. There’s loads of info from specialists on this forum.

Propranolol is used for MAV and for anxiety. Speak with yr doctor.

Well done. That’s the spirit.

PS; all the visual stuff, it’s all part of the syndrome that is migraine. Everone knows migrineurs hide in darkened rooms to avoid the light. It’s all just another lot of symptoms seemingly designed to make you feel worse. Well, it seems like that to me some days. Theory is once the drugs control the migraine, the migraine and all its associated symptoms go away. Now, that’s something to lok forward to, isn’t it.


#40

Hi Amylouise!

You read that someone took valium daily and they are symptom free? Why can that not be me! I take it 4 times a day and very far from it :slight_smile:

There is one thing that puzzles me about your symptoms…it is the “visual snow” you have mentioned. You said before that it is like your entire vision is like looking at snow on a TV. This is the first time I’ve ever heard of that. I’ve heard of tunnel vision (center is clear, surrounding is blurry), and poor depth perception (both of which I have), but now the snowy vision. Do you know more about it? Have you heard others describe their vision the same way who have some kind of vertigo condition?