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It’s been 19 years!


#1

It’s been 19 years! I’ve tried every med, brain surgery, physical and vestibular therapy, Botox, clinical trials, diets, devices, alternative therapies, psychotherapy, meditation/mindfulness, procedures, specialists across the country… have vestibular migraine + migraine with brainstem aura (MAV) + uncompensated left vestibular loss…gets worse every year…my world and independence just continue shrinking…I am so miserable. I am in total despair. This is beyond my ability to bear. I can’t do this for the rest of my life…it’s hard enough to do it for an hour! I don’t know what to do. Every little thing overstimulates me. I don’t know how I will get through this.


How do I get through this?
#2

Hi, Welcome and so very sorry to read yr post. This MAV can prove relentless and really soul destroying. There’s no point me telling you don’t to give up because, after 19 years, you are still going so you’ve conquered that one by yourself. Nineteen years is a looooong time but not totally unusual with MAV. I’m 15 years this very month, and I know @sputnik2 is much longer. I think she said 22 but I’m sure she’ll chip in at some stage. Both of us are much improved recently so there’s hope. Plenty of hope. Longer one’s had it, longer it takes a top consultant told @sputnik2, I think he said 18 months+ and it would be a rocky road. This support group will help you in any way they can. I expect from your own vast experience you could help other newbies in practical ways if you feel you want to get involved too. We aren’t medics but could probably make some suggestions if things you might look at if you have time to write up a more detailed history. Then somebody somewhere might hear a bell ring that would give you a clue as to where to look next. The only thing that kept me going was Hope, and to keep looking for answers and not give up. I accepted it had it but wouldn’t accept it would be with me ‘for ever’. Can I ask what continent you are on, which specialists you’ve seen (it’s a surprisingly small world, the MAV World), and what drugs you tried, for how long and why you had to quit them. That would be a good start, assuming you are ready to once again tackle The Beast. Helen


#3

TracyD. I felt like that in the summer when I was more or less bedbound for a few months. Things had been getting worse for a while ( after getting a nasty respiratory virus around Xmas that wouldn’t shift)and then just went crazy as the heatwave in the UK started. I really worried about what my future might entail and if I could face it. I felt that life had no fun in it for me anymore.

Anyway, I bit the bullet and took control again and went to see a proper MAV specialist and went right back to the beginning with the drugs. I’m currently on 2mg a day of Pizotifen and going to go up to 3mg in stages over then next few months and then see where I am. I’ve improved, back to about fifty or sixty percent most days. There are many things I still can’t tolerate or feel I can do (driving, full time work, socialising in busy places etc) but am functional within the home and for short bursts outside. My specialist has said it’s still early days in finding relief for an old hand like me (22 years) but I am making some progress on the drug but know that I will probably need something added in or changed. I also think my reaction to certain drugs has changed over the years, I used to take Stemetil with no effect 20 years ago, but in the summer it caused an allergic reaction. I tried pizotifen 10 years ago and it sent me into a comatose sleep during the day but I’ve been fine on it this time round.

Like you, I have left vestibular damage (which was a red herring and meant I was misdiagnosed with Menieres for fifteen years). Please don’t give up hope. This condition seems to wax and wane over time. I think for me, as a woman of a certain age, a lot of the increase in symptoms are linked to fluctuating hormones and my specialist has warned they can throw “a bomb” into my treatment at any time and that women who are peri/menopausal make up his biggest group of new patients and are the hardest to treat and it can take a long time (18 months+ once the right drug therapy has been found). I’ve started to be kinder to myself, not chastise myself or feel guilty for shortcomings caused by this condition and to not force myself to push through. I just feel glad if I can do basic things, enjoy a short walk outside, make some nice food without getting dizzy in the kitchen etc. just live in the day (as much as is practical).

You are a survivor, things will improve. What do you think you could try next? Did any drugs give you a bit of relief? Often in the past, I now realise, I didn’t trial drugs properly as the dosages I was precribed weren’t high enough to be therapeutic or prescribed for long enough periods. Hence, starting again with the meds.


#4

Thanks @sputnik2. Were it within my power, I’d certainly award you ‘Post of the Month’ for that one. I’m sure TracyD will find it helpful. You two seem to have so much in common. It’s reassuring to find you aren’t the Only One in any given situation. Helen


#5

One quick question if I may. Has your MAV been chronic for 22 years, or did it start out episodic, and worsen with time. Guess I might ask @TracyD the same. Just out of interest. Mine was episodic, totally self contained episodes lasting 72 hours for 12 years before becoming 24/7 four years ago about now, early/mid December. Helen


#6

Thanks for all your advice and help on this site @Onandon .

In answer to your question I would say more or less episodic. However, since it started I’ve never been totally symptom free. I’ve always had some degree of a feeling of ear fullness, even on the best days but I did have long periods of being fully functional. I could usually cope fine with busy life (and 4 young children at the time) except for a few really bad days here and there each year until about 8 years ago when I started to get bad headaches most days which cleared after a year or so and then about four or five years back I developed chronic migraine which was horrendous, eventually after a few med failures I tried amitryptiline for six months and the headaches lessened but the dizzy bouts returned and my life has got smaller and smaller until I was virtually housebound and then bedbound in the summer.

I was always aware that things could kick off though even in my good years. If I drank too much , I’d be ill for days (gave alcohol up), if I had too much sun strobe whilst driving I’d pay the next day etc. I had labyrinthitis when I was 7 months pregnant with my second child which was horrid. The room span around me and I kept collapsing and vomiting. That cleared after a few weeks and then I was okay. My child had a very bad, traumatic birth and there were questions about deprevation of oxygen and deficits and she was very ill all the time, so I was very stressed and at about six months after birth the dizzy bouts, depersonalisation, marshmallow pavements started and the ear fullness. Interestingly I went on to have 2 more children and felt great during the pregnancies, with only a tiny bit of ear fullness as a symptom. Wish I could have felt that way forever. As I was continually misdiagnosed with Menieres I was basically told that my body had compensated, and as the meds (Serc and Stemetil) hadn’t worked I’d just have to live with it and like you I did. After the initial bout it really was a few days, at most five days that I’d have to stay in the house a few times a year but still managed to lie on the sofa and direct the children ( I had a box of new games/play doh/ a few videos in stock etc to whip out) and could stagger to the kitchen to cook etc. If definitely has got worse in late forties/early fifties. I’m sure it’s a mix of my poor brain being too tired and irritated by coping all these years without meds and the old hormones playing up.


#7

How long did pizatofin take to work for you? I’m On this but no improvement yet


#8

Thanks for replying. I’m only too happy to have been of assistance. Broadly speaking the history of your MAV is very similar to MAV. Particularly in progression. If anything I had more extremes. I was lucky in that in between episodic attacks I was completely symptom free for at least the first ten years and could completely forget about it. However my attacks, when they happened, were more severe, totally incapacitating me initially for 72 hours at a time, then moving to 8 days bedridden at a time. My attacks were always exactly as you describe your labyrinthitis. As you say, in many cases hormones must be implicated. Another question: did those two ‘good’ pregnancies happen to result in sons? Helen


#9

Onandon -No, one girl, one boy.

Veena, I starting noticing I’d improved after I was on 1.5mg per day but I had several better days(60%) on 1mg. However, I’m by no means anywhere near “better” and progress is not consistent. I started on 0.5mg in October and have been on 2mg for 31/2 weeks now due to go up to 2.5mg in a month or so. What dose are you on and for how long?

I’d say I’m back to how I was before things went crazy in the summer. Mostly housebound, trying to get out for a walk everyday, managing to cook, clean, go on the internet for bursts etc. but nowhere near capable of doing a job, traveling on public transport, socialising in a busy restaurant or bar for example and a mix of bad and not so bad symptom days.

I thought I was doing well, baby steps forward is as much as I expect but then yesterday I had a bad headache and when it abated I felt really off balance in the evening and this morning feel nauseous, have a headache threatening and feel off balance, bit hot and cold and the feeling of pressure in my ears going a bit crazy up and down - not at all good.

My partner seems to think I’m doing better than I myself do, he says that I’m doing more around the house, and thinks I’m a bit “perkier” etc. We are under tremendous stress from various quarters at present so I think that can’t help at all. It’ll be a long road for me as the MAV is so ingrained. Have you suffered for a long time?

I do think you need to stick with a drug for a while ( as long as the side effects don’t outweigh the benefits) and the dosage needs to be high enough to be therapeutic which Is quite individual.

All the best


#10

Hi
Im about 70% better on Venlafaxine, Gabapentin, Botox and still cannot do public transport without being ill…its hard isnt it?