Adam, anyone, info on drugs+lightheaded

Specific Illnesses & Conditions VM/MAV
1

Hello,

We’ve ‘spoken’ before on the inner ear disorder board at healthboards, I go by the name of hbep. (Was clearly feeling uninspired when I picked that name.)

I’m going to introduce myself properly in the tell your story section, but am too damn ill today to be up to it. I have been ill 3 yrs, diagnosed initially with VN and then MAV. I am seen in a neurotology department in London, have been seen by neurology in the same hospital. I was dizzy with patches of vertigo 24/7 for 2 yrs. For the last year I have had blissfull peridos of almost complete remission within strict perameters (can’t do cardio exercise without terrible facial/head pain, must get enough sleep, stay unstressed, have problems in busy visual environments etc… I always have tinnitus, that never goes.

Anyway, long story short I have been weighing up trialing another drug. I was avoiding them because I have made such progress and all the ones I’ve tried have been a disaster. I am very sensitive to anything that causes drowsiness. The tricylics left me a dizzier zombie even at 10mg. Tried 2 of them. I could barely function to do the simplest things. On Pizotifen I developed such severe anxiety I considered suicide (I was so out of control I forgot it was probably a drug side effect. ) Fortunately a friend pointed out I had only felt that way since starting the drug, I came off it, and the anxiety went. Propanonol caused such brain fog again at a tiny dose that I couldn’t work or function in any normal way. On coming off it I had violent palpitations.

The drugs the neurologist suggested are sodium valporate and topiramate (topamax.) I am really, really loathe to try an anti seizure med, mainly because they have a reputation for causing severe drowsiness and as I said, anything that does that tends to be a disaster. He was initially going to try flunarizine, but because of the terrible experience with pizotifen and a history of depression, he doesn’t want me on that. Apparently both of them are serotonin antagonists - and, after the pizotifen I’m not going there again.

Do you know which drugs aren’t serotonin antagonists and which also aren’t anti seizure meds? Are there any he hasn’t thought of? I could talk to my GP about trying something other than the drugs he’s suggested.

I think I am going to have to bite the bullet and take something. I did 5 days of unremitting temple/ facial pain, (this is how the migraine manifests) it went, and then like an idiot I stayed up half the night chatting with a friend, and also, (moron that I am) decided, in a lunatic move, to try drinking a small amount of alcohol for the first time in 2 years. Of course, 2 days later I am still so lightheaded I can barely function and so, so, so fed up. Every time I think I’ve beaten this rubbish it’s back with a vengeance. I don’t think I can live as a sitting duck anymore - never free of the knowledge that another attack can happen at any time.

I’m curious, do you, separate from vertigo, get this disgusting lightheaded sensation? It feels like I’m heavily drugged - monstrously spacey. It often come on after a headache. Makes it terribly hard to work - I am a writer and need to be on the ball mentally - difficult to do when you feel like you’ve been slipped some rohypnol. I actually prefer mild vertigo to this as I am so out of it I can barely function.

Anyway, this is longer than I intended, am miserable today and guess I needed to vent to people who understand.

best,

Hannah

2

Hi Hannah

Good to have you here - your posts on other forums are always helpful and informative.

From your criteria, a drug you might want to try is Acetazolamide. It is vaguely an anti-seizure med, and has similar
side effects to Topamax (both are carbonic anhydrase inhibitors). It’s not use for seizures often though, its mode of action
seems to be at the ion channel level. A lot of brain disorders including migraine are thought to be ion channelopathies
and Acetazolamide works very well for these types of conditions by somehow restoring the function of ion channels. It is thought
to be because it makes the cellular environment more acidic - but thats a vague, unprovable explanation.

Did you try Verapamil at all? Sodium Valproate is really not as bad as it sounds - its definitely worth a try as well. A lot of people
have zero side effects form it. It’s a time-proven drug for sure.

You may even find that you can just take these drugs when you have your bad spells. When you are feeling better
you can taper off them and stay off them until things get rough again.

Flunarizine may worth trying as well (I"m surprised you have access to it - aren’t you in the US?). It is actually a dopamine
antagonist (not serotonin) but dopamine is crucial in depression as well. When I take Dopamine antagonists like metoclopramide or
chlorpromazine for nausea I become immediately depressed, agitated (akathisia) and feel suicidal. An important thing about
Flunarizine is that if you DO have side effects, you will be in serious trouble. It has a half life of 19 days which I’m sure you know
means it can cause ill effects for a long, long time after you cease taking it. I had a terrible experience with Flunarizine.

Previously, I had had huge troubles tolerating any migraine preventatives as I would feel nausea, vomit and have diarrhea and
abdominal pain. I thought I’d give Flunarizine a try and took it for 3 days before I started to feel the above. I stopped immediately
but it was too late. I spent the next 5 weeks acutely ill (in and out of hospital) with dehydration, nausea, vomiting 50+ times a day,
diarrhea, pain, hallucinations, agitation. I lost 13kg of body weight in those 5 weeks which were the worst of my life. It made me
swear to never ever touch a drug that has a half life longer than a day or two.

Not worth the risk in my opinion - if it does make you depressed, it just takes too long to reverse.

Acetazolamide will definitely make your hands and feet tingle, and you might get a bit of nausea - but stick with it…
I started on 62.5mg/day and am up to 187.5mg/day now. The target range is 500-750mg/day in migraine-like ion channel disorders
(episodic ataxia, periodic paralysis etc.). I believe its also the same for migrainous vertigo.

Adam

3

Hi Adam,

Thanks for your reply. Great that this forum is up and running. I’ve been on the healthboards a while but it’s good to have a separate forum for MAV. It’s nice to talk to people in the same boat. These days I find myself wishing my first diagnosis (VN) was correct, at least with a stable deficit there is a stronger chance of total recovery.

Think I’ll steer clear of the flunarizine. I’m in England - hence the access to it. To be honest, my neurologist won’t give it to me even if I wanted it because of the history of depression. And knowing my response to drugs there’s no way I want to be on one that doesn’t leave your body fast in the event of severe side effects.

You know it’s interesting that you should mention metoclopramide. I didn’t realise flunarizine is a dopamine antagonist. As it happens I take a dopamine antagonist daily. Not as an anti emetic but as an upper gastrointestinal tract prokinetic agent. I have reflux and slow eosophageal motility (a direct side effect of living with MAV - I think it was stress induced.) You know a lot more than me about how drugs work, but I know that when it comes to anti emetics, domperidone, so the gastro told me, doesn’t cross the blood/brain barrier and causes far fewer side effects than metoclopramide - which apprantly has a reputation for being a harsh drug to take. The neurologist knows I take domperidone, but still didn’t want me on flunarizine, so guess he was still worried on the depression front, despite the fact I already take a dopamine antagonist.

I am going to talk to my GP about Acetazolamide. The only thing that puts me off that is another poster on here saying it caused terrible stomach/acid problems. I’d need to check out Acetazolamide’s effect on the stomach first. I thought of verapamil - might think about that too. Hope you’re right about the valproate. Maybe it won’t be so bad. I’m really curious about the idea of going on and off the drugs during bad spells. That’s food for thought.

Wish I could beat this thing only through dietary changes, but I just don’t think that’s going to happen.

Thanks again for your reply,

best,

Hannah

4

Hi Hannah

Like yourself I had a few incorrect diagnoses when I knew nothing about what I was dealing with -
“sinus problems” (had surgery), VN. Of course nowadays I realise the sinus in no way causes dizziness or
or headache - not surprisingly the surgery did nothing. That would’ve been 7 years ago now. The turning
point came when I went to see Dr Halmagyi in Sydney (well known neuro-oto) and he provided the diagnosis
(his words) “migraine without headache”.

It is quite likely that MAV does go into remission. It might sound weird me saying it as I’ve had 8 years
with no relief, but I still believe there is a chance it will go into remission for me or I will find a solution
that makes it no longer a major problem in my life.

It’s funny with certain drugs like metoclopramide (and also propranolol) - that they don’t cross the blood brain
barrier but can still cause neuropsychiatric side effects. Propranolol is implicated in depression quite often - perhaps
thats just a response to how tired and weak it makes you feel when you start it, though.

I have had no stomach problems with Acetazolamide - the instructions just say take it with food or milk which
is good advice for any drug. It will definitely make your feet tingle though, so be prepared for that. :slight_smile: You’ve definitely
got a few options definitely - valproate, acetazolamide, verapamil. I’d probably try verapamil first as its pretty
mild in terms of side effects. It worked brilliantly for me but strangely I developed angina on it, where I had previously
had no chest pain. Stopping the drug reversed that.

There’s definitely no problem going on and off the drugs, as long as you taper properly.

I’ve had minimal success with dietary changes too :frowning: The major ones are definitely caffeine, alcohol and MSG for me - which
is not surprising as they are more drugs than they are foods.

Adam

5

Hello,

The whole question of remission is interesting to me - for obvious reasons, lol. I may have told you this already elsewhere, but I think I experienced migraine once before. I’m in my thirties now, in my mid-twenties, for I’m not sure how long - a yr and a half - maybe longer, I had unremitting atypical facial pain and vasomotor rhinitis. The inside of my nose was horribly inflamed with no identifiable allergy. I saw an absolutely awful ENT. I explained that the pain I was experiencing in my sinus area and in to my temples was frequently terrible and disabling. This man, despite being the head consultant in the clinic was a) nasty and b) a bad clinician. The pain was unrelenting, varying in severity, but always there. I was going half mad with it. I kept going back to the ENT, they X rayed my sinuses and said they were fine, they stuck me on nose sprays. I saw a different doc in the same department who was worried enough to run a load of blood tests as he thought the nose problems might be a sign of an auto immune disorder. It wasn’t. Anyway, eventually, despite my trying to stress that the facial pain was very severe, the horrible consultant eventually told me there was nothing they could do and told me to live with it. He implied I was exaggerrating the pain. I lived on vast quantities of paracetamol, popping them like smarties. Eventually, after over a year the pain just went away one day.

Years later, when researching the dizziness and trying to get to the right consultant, I came across an article about migraine, sinus area pain and vasomotor rhinitis. Apparently migraine can cause nasal inflammation. I was blown away to realise that the dreadful pain I had been in was almost certainly migraine and this rubbish consultant hadn’t even thought of it. A daily preventative at that stage might have changed what was over a year of severe, disabling pain.

I say the pain just went but actually the one thing I did at the time was have acupuncture. I am very sceptical about anything that hasn’t been properly trialled. As far as I am concerned the jury is still out where acupuncture is concerned, but I was desperate, and it is a fact that shortly after a course of acupuncture the pain went. It may have been coincidence, but where remission is concerned this is a heartening story, either a therapy worked, or it just went, but either way it stopped.

Two years in this ordeal I started to experience the same facial pain on and off, just had a 5 day bout of it. The neurologist feels it is migraine. I am a teeth clencher and have a loose diagnosis of muscular problems (MPD) due to teeth clenching, but I now think this probably merely acts as one of many migraine triggers and the facial pain isn’t only down to MPD (muscular form of tmj.)

It drives me slightly nuts that I don’t know for sure what definitely causes my symptoms. I have three diagnosies, a mild vestibular deficit (I never had a caloric, only rotatry chair, so that isn’t 100% certain) migraine and MPD. At this point in time I think all 3 play a part, but my gut tells me migraine has been at the root of this. I just wish I could know for sure. At least I no longer think, as everyone does at the beginning, that it’s something sinister.

How are you getting along with the acetozalomide? How much have your symptoms remitted? Hope you are doing well on it. I have spent the last 3 days fantasizing again about a drug that will work for me. I do this every time I get sick again. Once you’ve been free of the dizziness, as I have, it seems to become ever harder to tolerate getting dizzy again. I loathe what it does to my brain/intellect, all along I have found that the hardest thing to tolerate.

best,

Hannah

6

Hi Hannah

It is odd the way migraine manifests, but for me the proof is in the response to medication.
While it is not possible to say someone who felt better because they took a calcium channel blocker
had migraine - it seems the most plausible explanation. When questioned people with no diagnosis
almost always state they have light sensitivity, sound sensitivity or visual issues and some sort of
tension or painful headache at times. Unfortunately I think labelling this disorder ‘migraine’ or even
using the word ‘migraine’ in it misleads a lot of people because almost everyone thinks migraine
is a basic headache syndrome and nothing more. Benign recurent vertigo is a good term because they
connect it to migraine, and say it is probably a migraine variant, but you don’t get people questioning
the diagnosis unless their vertigo is chronic in which case the ‘reccurent’ part is also misleading.

I get pain in my upper teeth (gums) and intense pressure in my temporal region at times.
Acetazolamide has not been as good at ameliorating all my symptoms as Verapamil was, but I can’t take
the risk of taking it again because of the previous angina. However, I can say that almost everything
normalised when I took it - the gum pain, the temporal pressure, light sensitivity, sound sensitivity, headaches,
vertigo, visual snow and flashes of light - all gone. It was amazing to feel that way - my partner also
said my posture improved markedly as I think I compensate quite heavily for my imbalance with my hunched
posture.

Verapamil is safe and doesn’t often lose effectiveness, so come to think of it again, I think that would be the best
first-line drug for you to try. It is very effective. I still sometimes ponder trying it again - as I don’t discount
that the chest pain may have been a result of anxiety. I had an ECG during an episode of chest pain at my GP
but there were no abnormalities except a minor prolongation which the Dr did not think was clinically significant.
I’d be really interested to hear if this one helps you.

I feel better on Acetazolamide - the first week I felt brilliant - normal again - but it lost its effect. I am now on 4x that
original dose and still feeling better, but not as well as the first week. I am currently taking 250mg a day so maybe
when I reach 500-750 all my symptoms will disappear.

I know what you mean about what happens when you’re sick. It’s demoralising and while I don’t get depressed, it does
make me less interested in everything. I run my own IT company and am primarily a programmer and if I’m not
on the ball, some of the more complex projects really get the better of me.

Have a bit of a read about Verapamil - it seems to be first-line for this disorder now and the side effects really are
pretty benign. Ankle swelling and constipation is about all you can expect. It should have no neuropsychiatric side effects.

Adam

7

Forgot to mention:

I have a new article to post you might find interesting. It’s 25 pages about the pharmacological treatment of vertigo.
One of the lines that made me think of you when I read it was “migrainous vertigo tends to be very common in women in their 30’s”.

He also suggests Verapamil as first line.

I’ll post it on the front page shortly.

8

Hi Hannah (hbep),

Just thought I’d post a quick note here to say hi. Although I can’t offer anything on MAV I hope that you can come up with new ideas here. Adam and I are always sharing info from medline etc and, where possible, I grab the articles from the university. So hopefully - sooner or later - something new will come along to wipe out or at least greatly dimish this migraine stuff.

All the best - Scott

9

Great Adam!

I will look forward to reading the 25 pages about the pharmacological treatment of vertigo.

Cheers

Tib.

10

Hi there Scott and Adam,

Good to hear from you Scott, hope you’re doing well. I am, as you may have read, having a set back, so I won’t need to tell you how fed up I currently am, lol.

Adam,

First off a question. Do you know what the lowest dose of verapamil is that you can start with?’ Heal your headache’ suggest 120mg once or twice daily. I’m not sure what dosages the tablets come in. I need the info for my GP visit. I will start as low as possible.

Thanks for all the info. Was out this weekend, trying to keep active despite the dizzy issues, but am looking forward to reading the article you mentioned. I did look at some of the drugs suggested, got to say it’s daunting, can’t say I fancy any of them when I consider their side effects. That said, I don’t want to put up with these symptoms either, or what they might do to my life (capacity to work etc…) if I can’t get them under control. I’ll talk to my GP about the verapamil. Really not sure why the neuro didn’t suggest that prior to the anti seizure meds.

This is a bit left field but I thought about your chest pain issues on verapamil. Your digestive system is clearly very sensitive to meds. Have you ever considered you might be prone to reflux (GERD/heartburn.) One of the most common reasons for chest pain that isn’t the heart (ECG/stress test etc show no problem) is heartburn. It often has people rushing to the ER thinking they’re having a heart attack - it can be very severe. The eosophagus kinks to the left on it’s way to the stomach, which is why the pain can seem to be emanating from the heart. It can also cause nausea amongst other things. I might be way off the mark here, but thought I’d chuck it out there. People with a propensity towards GERD often have to be very careful which drugs they take as they will be more inclined to stir up the stomach issues.

I understand your frustration re ‘migraine’ and the general assumption it means a) a headache and b) the symptoms will be intermittent/not cronic. It doesn’t help that a lot of doctors are woefully ignorant about it too. All you can do is put the info out there, I think despite their reservations or misconceptions, people will eventually get around to looking into it.

Funnily enough, despite a few periods of reactive depression over the years prior to being ill. I haven’t actually suffered from depression since getting ill. I’ve been miserable about it, who hasn’t? But not depressed. Although your description of being ‘less interested in things’ hits the nail on the head. I think it’s because it makes it hard to fully engage with anything else, there’s always a part of you which is ‘watching’ your symptoms, either consciously or unconsciously monitoring yourself. That, and of course the simple matter of being less able to think straight or enjoy things as much when you feel dizzy and tired.

Sorry the acetozalomide isn’t working as well as the first week, as you say, you may respond better once the dose is titrated up.

I’ll keep you posted re my next drug trial. Not sure when it will be. I saw the neuro a few weeks ago, I, meant to wait for him to write to my GP, which frustratingly seems to take them weeks. Also, I am hoping that this latest bad bout of hideous lightheadedness will pass, each time I get sick again I never believe it will go. Am panicking big style at the moment. But working on the assumption that it may, I should probably try a drug when I’m in a symptom free spell, so I can get a better idea of how I respond to it. Think I’ll probably just visit my GP this week, see if she’ll prescribe without the consultants letter.

best,

Hannah