Hi, and thanks!

Specific Illnesses & Conditions VM/MAV
1

Hi everyone,

just thought I’d introduce myself and say hello, and thanks. Thanks, because I’ve been following this forum for a long time now, without actually joining and posting, and the information and people on here are an absolute god-send and an inspiration. I want to thank Scott, especially, but there are so many others on here whose names I now know very well, just from following their stories and reading their posts - people on here are so knowledgable, and their knowledge and shared experiences are absolutely invaluable. I’m currently struggling through a Topamax trial, and it has been a fairly rough ride, and there have been days where the only thing that’s kept me going, is “Rich2008”'s story of success with the drug, through all his struggles, until he won through…

My MAV (I’m now fairly certain that’s what I have) started in Sep 2008, so just about 2 1/2 years ago (but who’s counting, eh? :wink: . I guess I had a ‘big-bang’ event, as Scott might call it, that set this whole damn thing off - it followed a period of prolonged stress, and literally 15-20mins after I finished this ‘task’ after months of stress, I completely relaxed, and then had 2 mini ‘spin attacks’ lastly just a split-second each, that knocked me to the floor (the room literally span). Since that day, I have been left with much milder, but constant, unrelenting, never-ending, 24/7 disequilibrium/dizziness - complete with marshmallow/trampoline floor, and false feelings of movement and motion (what people on here call ‘rocking’?). I’m very lucky in that I’ve still been able to work through all this, and for that I’m very grateful, and I can only read in admiration some of the trials and tribulations that some people on here go through and still come out fighting from - I salute you!

After all kinds of tests that came back clear (except for a caloric test that showed a possible mild vestibular asymmetry), I had a failed attempt at VRT, and the physio then suspected an underlying unstable disorder might be interfering (i.e. migraine). I eventually went onto Pizotfien, and distinctly remember it working after about 3 weeks or so (the dizziness started subsiding to barely-noticeable levels, and I had started to foget I even had it!). But unfortunately, my heart pulled a stunt on me and went into atrial-fibrilation (out of sinus rhythm) and I ended up in hospital for a couple of days. The consultants there thought there was a chance that the Pizotifen could have been playing a part (even though there’s no mention of such side-effects in the literature), so I came off the drug - oh how I wished I hadn’t!!! It turns out (I believe) not to have been the drug, but just my heart - it had gone out of rhythm in a similar way once before about 20 years ago, and I just think it was doing it again! I went back on the Pizotfien a few months later, but despite going to a much higher dose, the drug never quite had the same magical effect as the first time around! :frowning: I don’t know why this was so; it still helped, but not in the same way as it did the first time.

So now I’m taking Topamax, and it’s been a struggle, but I’m finally at 50mg per day, and I’m simply waiting for the 3/4 month mark to pass to see what happens (end of May will be 4 months). What a frustrating condition this is! Thanks again to you all for sharing your experiences and knowledge - there are days where you guys have literally kept me going, even though you didn’t know it! I hope I can contribute back in some way…

Tony.

2

Tony - welcome and sorry you’re suffering with this byatch of a condition!!

You will be welcomed by everyone here who is - as you already know - kind, KNOWLEDGEABLE, helpful and supportive.

Wishing you well on the Topa and keep us posted. I’m thinking of Piz as my 2nd choice if the Nort that I’m on doesnt work. Have you only trialled Piz and Topa? Do you use any Benzos (Valium, Clonazepam/Klonopin)?

My desire is to get well enough to work again :slight_smile:

In the words of New Kids On The Block - hang tough!!!

3

Hi Muppo - thank you for the welcome!

I’ve only trialled Pizotifen and Topamax. I think I did try Propranolol at some point, but I’d have to check my notes/diary. I’ve never tried any Benzos, but one thing that really made me think about them last week was this (and this may sound a bit strange, but here goes!):

I went down with a flu-type bug last week (not the real-thing, but a bit shivery, achy joints, and the ‘I just need to crawl into bed and crash’ type feeling), and for 3-days my dizziness improved!! This never happens for me - my dizziness is always 24/7 unrelenting. The strange thing is, I think a similar thing may have happened once before when I had a similar flu-type bug, about a year or so ago. What if feels like, is the body is naturally getting sedated (the ‘I have no energy and just want to crawl into bed and crash’ type feeling that strikes when the bug hits). It really feels like a natural-sedation is taking place, and that that sedating effect is dampening down the dizziness. I would have happily traded the flu-type bug for the dizziness for a good while longer (hell, maybe even forever!! :wink: But, sure enough, as soon as I started to recover from the bug, the dizziness returned, and this week I’ve been dizzier than ever!

So, it got me thinking about the Benzos - do they work by ‘sedating’ the brain? I don’t know much about them.

How’s the Nort working for you?

4

Tony,
That is so interested about your experience with the bug…were you taking any medicines to combat the flu like symptoms?
The benzos are basically a central nervous system “brake” system…they work on GABA in the brain, and i"m sure other things as well, but GABA acts as they brakes. Dopamine and NOrephinephrine act as the “gas”…energy etc, which can also lead to insomnia/anxiety when not in balance. Our systems are meant to be balanced with all our brain chemicals, but they get out of whack and we get these weird symptoms.
Pizotofen actually it an antagonist of serotonin…meaning it decreases sero at certain receptor sites. I find it confusing that a medicine that decreases sero is used as an antidepressant? Seems weird, right? All the other AD’s try to increase sero by preventing it from being taken back into the receptor after it’s been released (reuptake)…so it’s floating around longer…
I’m getting off track…for those of you that know me, I am a little preoccupied with this whole brain chemical/drug stuff…lol
Kelley

5

Hi Kelley,

I’ve read lots of your posts over the past few months, so it’s good to ‘speak’ to you at last! I’ve always noticed that you seem very knowledgeable re. the brain/chemicals stuff, and I like that, because I puzzle over how it all works! :wink:

I can’t help feeling that Pizotfien was the drug for me - if only my stoopid heart hadn’t messed me around, I’d probably be in a state of happy non-dizziness by now! I too don’t understand how a serotonin antagonist can act as an anti-depressant!!??

I wasn’t taking any other medication for the flu-type bug. I remain convinced that the body was producing some kind of natural sedating type act on me - I just felt calmer, like I couldn’t be bothered to worry about anything else - just needed to crawl into bed and curl up for a few days! :wink:

It sounds like you have found your magic dizziness potion/cure…?

6

Tony,
My first drug that worked for me is Remeron. It had almost no side effects and within days I was feeling so much better…about 6 weeks later it “pooped out” on me…Remeron is different in that it isn’t an SSRI…it actually makes the body release more sero instead of preventing the reuptake…so it has a different affect, but similar in that it increases sero. But my anxiety broke through and I wasn’t able to go up on it. It was heartbreaking when it stopped working. My point is that even if Pizo worked for a while, no guarantee that it would have kept working…which is what I wonder since you aren’t able to get those results back…at least not the same way.
I do think that when youre sick, you “shut down”…and hit the sheets…so it could have sedated you overall, and because you were in bed, you probably had less stress? I’m guessing here…I know when I was sick a few weeks ago, I didn’t take any klonopin at all for 5 days…didn’t need it. And i usually take it every am to kick the dizzies to the curb…a very low amount is all that’s needed.
Yes, I found a good cocktail for me, but I’m always searching for the Holy Grail…the best thing would be to truly understand how this came about…I"m a “need to know” kind of person…I need to make sense of it all…and this is just something that doesn’t make sense…I just have to accept that I got hit with the MAV stick, and take it one day at a time…
:slight_smile:
Kelley

7

Tony,

I could insert my name for yours and we would have the EXACT same story!

I had one “big bang” experience with a pure vertigo 1 minute episode followed by every symptom that you described…and a few others. (occasional numb parts of face, burning sensations, tinnuitis that changes tone, yada yada yada)

I will be starting Topamax (hopefully) within the next week. Keep us posted or feel free to PM me.

I am staring at 4 years…but like you, who the hell is counting. :?

take care and keep us posted

Todd

8

Hi Tony

Sorry you’re here but welcome anyway! What a lovely introductory post you wrote - It’s really interesting that this forum helps ‘silent’ MAV sufferers who just watch the boards for a while b4 saying hi or not.

Just wanted to try and answer your question on why the benzos might work. I’ve noticed the 'flu paradox too - the dizzies sort of fade away in all the drowsiness of the 'flu symptoms. I’d much prefer permanent 'flu (mildish 'flu mind you :slight_smile: !). I used to think it’s due to the well known phenomenon in medicine that a second illness often makes the first one seem to go away. Like the headache you’ve got suddenly vanishes when u stub your toe!

However, I think there’s something in waht you say about the sedating effect of 'flu and what happens with benzos.

My consultant explained my MAV thus: the brain has basically got 2 main parts (incredibly simplified, as it’s got lots of parts obviously), the cortex or ‘thinking’ brain (or ‘grey matter’) and the brainstem, (white matter) underneath which is what keeps you alive, breathing, heart going, etc, and also is an important ‘relay’ centre for incoming info form eyes, ears nose etc., like vision (light), sounds, smells, balance etc. etc.

During a MAV attack, the brainstem becomes hypersensitive, or hyperexcitable. EVERYTHING in the outside world appears to be magnified, to the extent that light is too much, sound is too much, one can’t bear to see movement, one can’t bear certain smells. This happens to an extent in ordinary migraine. The cortex, or thinking brain, in a reaction to this hyperstimulation of the brainstem, sort of ‘shuts down’ (this is the theory of spreading cortical depression), and normal thought, speech, processing language, multi-tasking etc. become impossible. The brainstem is sort of the ‘primitive’ brain, there for survival not complex thought. All living things (not plants I suspect!) have a primitive brain or nervous system akin to the human brainstem. The sense of balance is ‘primitive’ in the sense that it is fundamental to existence and survival. All animals need a sense of ‘which way is up’. Once the hyperexcitable brainstem of a MAVer is triggered (for whatever reason), all hell breaks loose and the balance system is b***ered.

Benzos calm the brainstem down. They also calm the vestibular system. This is what wiki has to say about their mode of action:

Benzodiazepines enhance the effect of the neurotransmitter gamma-aminobutyric acid (GABA), which results in sedative, hypnotic (sleep-inducing), anxiolytic (anti-anxiety), anticonvulsant, muscle relaxant and amnesic action. These properties make benzodiazepines useful in treating anxiety, insomnia, agitation, seizures, muscle spasms, alcohol withdrawal and as a premedication for medical or dental procedures. Benzodiazepines are categorized as either short-, intermediate- or long-acting. Short- and intermediate-acting benzodiazepines are preferred for the treatment of insomnia; longer-acting benzodiazepines are recommended for the treatment of anxiety.

Once the brainstem is calmed down, the cortex can begin to do its job properly, i.e. integrate visual, proprioceptive (info from muscles etc. re. where the body is in space), and vestibular info, which is critical for balance. And you can think straight and process light sound, movement etc. correctly.

Some of the anticonvulsants also have a similar effect, but are long-term preventatives rather than ‘quick fixes’. Meditation and relaxation can also enhance GABA, as can alcohol, but that’s probably not a great option!

Hope that makes some sort of sense!

Dizzy Izzy

9

Hi Tony,

I think we may be acquainted elsewhere :smiley:

This is a really great place for information, and everyone is very friendly and welcoming.

10

Thank you all so much for the replies:

  • Hi Kelley - that’s an interesting point about the Pizotifen - I have no idea why it didn’t work as well the second time around. I remember speaking to my neuro when he suggested moving onto Topamax, and I got cold feet (metaphorically as opposed to literally as I sometimes have now :wink: ) and he said, ‘don’t worry, you can always go back to the Pizotifen’, and I thought to myself, 'yeah, but if its effects keep diminishing each time I return to it, it’ll soon be useless! I also take your point about the reduced stress when I was ill and feeling better in terms of dizziness. But I still think something else was going on, because the first day I went down with it, I went to work as usual even though it was a struggle, and still noticed the subdued dizziness even whilst struggling through a ‘normal day’, if that makes sense. I too have trouble with the acceptance of it all, and want to make sense of it all - I cannot believe that a period of stress has somehow, almost irreversibly, changed my brain chemistry so that I’ve now triggered something that won’t switch off. As I see it, if “normal” + “stress” = “MAV”, how come “MAV” - “stress” = “normal” is not true??? I also don’t really understand how the migraine mechanism can result in absolutely constant, unrelenting, 24/7 dizziness…? Does this mean the actual migraine (albeit without headache) is somehow active 24/7, and has been for the past 2 1/2 years??

  • Hi Todd - so sorry to hear it’s been 4 years for you :frowning: What a bitch this condition is, eh? I too have occasional tinnitus (as I type this I have a particularly nice combination of a low-frequency rumble in my left ear, and a high-pitched whine in my right ear - it’s a real party when I try to sleep at night)! I wish you all the best with the Topa, and of course I will keep you posted, and may well PM you soon, if that’s OK. When I started the Topamax, I began at 25mg and failed the jump to 50mg after just 5 days, with anxiety/panic type symptoms. But when I returned to 25mg, and titrated much more slowly, going from 25 > 30 > 40 > 50, all was fine! Just goes to show, that for lots of migraneurs, a slower than recommended titration is the way to go!

  • Hi Dizzy Izzy - thank you so much for taking the time out to write such a clear explanation - it made a lot of sense to me! One thing I wondered about was why Benzos are generally frowned upon as a long-term solution to the dizziness - is it because of potential dependency/addiction issues? Also, once the brain-stem is calmed down, I wonder why it doesn’t stay calmed down (when use of the Benzos is stopped), or is there a chance that it can? Thanks again for the info!

  • beechleaf - who are you, and what’s this crazy sounding stuff about hammers and burning hands!!! :wink: Only kidding - yes, it is me - I had noticed that you had found your way over to this forum from ‘the other one’ a while ago, and always meant to post sooner. What you say is true - this is a really great forum. It sounds strange, but often if I’m trying to get to sleep at night, and feeling particularly down about the whole MAV thing, I think about all those people out there, whom I really only know by their names and stories and shared experiences, looking for answers and helping each other through, and it gives me a little bit of a lift and renewed encouragement. I hope the Pizotifen withdrawl trial is going well for you…?

11

Hi Tony,

With regards to the 24/7 migraine my neurologist described it as being ‘in a cycle of migraine’. I guess that means back to back migraine, like a feedback loop.

Vic

12

Hi Tony

Just going to try to answer a few of your q’s (I’m sure others will do a better job!).

Firstly, you ask why, if normal + stress = MAV, why not MAV-stress =normal.
I think the point here is that normal + stress does not = MAV. The equation is more like this:
MAV brain + stress = MAV
or
MAV brain + food trigger/hormome trigger/sleep deprivation trigger/smell trigger/ear infection trigger = MAV
So we’ve all got a migraine (in this case vertiginous migraine) brain. We were probably born with it.
The theory goes that EVERYONE has the potenttial for migraine, it’s just that some poor sods were born with a lower THRESHOLD for triggering it.

Secondly, why does this thing go on 24/7. Good question. One explanation may be found in the following, which I took from

emedicine.medscape.com/article/8 … #aw2aab6b4

a website with a good overview (I think) of MAV The bit in bold at the bottom may explain why it persists:

Spreading depression theory
In 1992, Cutrer and Baloh developed the most commonly accepted theory regarding the pathophysiology of migraine-associated vertigo[13] by proposing that episodes of dizziness of a duration similar to that of a migraine aura (< 60 min) that are time-locked with the headache most likely have the same pathophysiologic mechanism (eg, spreading wave of depression) as other aura phenomena.

According to the spreading depression theory, some type of stimulus (eg, chemical, mechanical) results in a transient wave front that suppresses central neuronal activity. This depression spreads in all directions from its site of origin. Neuronal depression is accompanied by large ion fluxes, including increases in extracellular potassium (K+) and decreases in extracellular calcium (Ca++). These changes result in a reduction in cerebral blood flow in the areas of spreading depression. However, most patients with migraine-associated vertigo have dizziness independently of the headache.

Cutrer and Baloh suggested that when the dizziness is unrelated to the headache, the dizziness occurs from the release of neuropeptides (ie, neuropeptide substance P, neurokinin A, calcitonin gene–related peptide [CGRP]).[13] Neuropeptide release has an excitatory effect on the baseline firing rate of the sensory epithelium of the inner ear, as well as on the vestibular nuclei in the pons.

Asymmetric neuropeptide release results in the sensation of vertigo. When neuropeptide release is symmetric, the patient feels an increased sensitivity to motion due to an increased vestibular firing rate during head movements. Cutrer and Baloh also proposed that CGRP and other neuropeptides may produce a prolonged hormonelike effect as these peptides diffuse into the extracellular fluid.[13] This may explain the prolonged symptoms in some patients with migraine-associated vertigo, as well as the typical progression of persistent spontaneous vertigo, followed by benign positional vertigo, then motion sensitivity.

So there you go!

Dizzy Izzy

13

Wow!! Fascinating. Wish I had a degree in biochemistry!! I wonder why celexa med of choice for that condition per dr. Baloh??
Thanks for sharing!
Kelley

14

— Begin quote from “rockyksmom”

Wish I had a degree in biochemistry!!

— End quote

I’m considering giving you and Honourary Degree! You’re amazing Kelley that for someone who has zero science background has become the board’s de facto pharmacist :lol: You would have smashed second year biochemistry out of the park. You should look into doing something more formal part time. I’m serious. I think you’d dig it.

15

— Begin quote from “dizzyizzy”

Benzodiazepines enhance the effect of the neurotransmitter gamma-aminobutyric acid (GABA), which results in sedative, hypnotic (sleep-inducing), anxiolytic (anti-anxiety), anticonvulsant, muscle relaxant and amnesic action. These properties make benzodiazepines useful in treating anxiety, insomnia, agitation, seizures, muscle spasms, alcohol withdrawal and as a premedication for medical or dental procedures. Benzodiazepines are categorized as either short-, intermediate- or long-acting. Short- and intermediate-acting benzodiazepines are preferred for the treatment of insomnia; longer-acting benzodiazepines are recommended for the treatment of anxiety.

Once the brainstem is calmed down, the cortex can begin to do its job properly, i.e. integrate visual, proprioceptive (info from muscles etc. re. where the body is in space), and vestibular info, which is critical for balance. And you can think straight and process light sound, movement etc. correctly.

Some of the anticonvulsants also have a similar effect, but are long-term preventatives rather than ‘quick fixes’. Meditation and relaxation can also enhance GABA, as can alcohol, but that’s probably not a great option!

— End quote

Hey, Dizzy Izzy.

Lamictal affects GABA too, doesn’t it? My son can’t take benzodiazepines – he has a paradoxical effect from them. He gets the muscle relaxant effect (can’t walk, slurred speech), but becomes agitated and aggressive. His psychiatrist says that people who react that way to benzos are likely to be angry drunks if they drink too much alcohol.

So what’s the difference in what Lamictal does to GABA and what benzodiazepines and alcohol do?

Mamabear

16

Hi Victoria - thanks for the reply. The ‘feedback loop’ sounds like a good analogy - I still have real trouble accepting that the brain is capable of getting into such a ‘locked up’ state whereby it can’t naturally find its own way out of it. I guess I lost a little faith in my body/system the day I tried to accept that this was the truth, and that it looked like I’d need the help of drugs to try and ‘break the cycle’!

Dizzy Izzy - thank you for taking the time out to post such a comprehensive explanation - there’s a lot of information in there! As soon as I saw your correction of my ‘equation’ I laughed to myself, because I think you’re absolutely right - I was never ‘normal’ to start with!! :lol: So, it is the neuropeptide release that looks like being responsible for upsetting the vestibular system…? This is great info. And the part about ‘asymmetric neuropeptide release’ being resposible for vertigo - amazing - I’ve never heard about this. Does this literally mean, ‘asymmetric’ in the sense of the release occuring more on one side of the brain than the other, as opposed to ‘evenly all over’…? And the hormone-like effect explaining the prolonged symptoms - this is a lot to take in, but it’s great to finally read some decent theories about this stuff! I’m struggling to understand this, but I really want to learn more. Thanks again.

17

— Begin quote from “TeeCee”

  • beechleaf - who are you, and what’s this crazy sounding stuff about hammers and burning hands!!! :wink: Only kidding - yes, it is me - I had noticed that you had found your way over to this forum from ‘the other one’ a while ago, and always meant to post sooner. What you say is true - this is a really great forum. It sounds strange, but often if I’m trying to get to sleep at night, and feeling particularly down about the whole MAV thing, I think about all those people out there, whom I really only know by their names and stories and shared experiences, looking for answers and helping each other through, and it gives me a little bit of a lift and renewed encouragement. I hope the Pizotifen withdrawl trial is going well for you…?

— End quote

Hi Tony,

Um, I’m not so sure about the pizotifen withdrawal trial. I stopped about 2 weeks ago, but have felt a bit worse (have had a couple of headaches and have also felt a bit like my balance is ‘off’ again, and a couple of mild spins during the night), but I have no idea if it’s really due to the lack of pizotifen, or whether it’s just because I’ve got a lot going on work-wise at the moment so am a bit stressed and I would have felt like this even if I was still on it. The current plan (assuming no really obvious decline in the meantime) is that I stick it out for another few weeks and see how I feel. On the up side it was only a few days before my appetite went back to normal, and I am loving the feeling of having my usual appetite back and I can see I’d be able to get back to my usual weight pretty quickly without the pizotifen. On the other hand, if I start feeling much dizzier, I would rather go back on it again and be slightly larger but non-dizzy!

Glad to see you on here, and to hear that your slower titration of topamax is working for you. What dose are you working up to? Are you feeling any different yet? P.S. I first read your message on my phone, so got to read all the first sentence without being able to see you were joking, so got to have 20 seconds of thinking ‘oh s**t’ before i saw it really was you after all…

18

— Begin quote from “beechleaf”

Um, I’m not so sure about the pizotifen withdrawal trial.

— End quote

Hi beechleaf - sorry to hear it’s not going so well for you. The thing that worries me about this is, are you going to experience what I did, when I found that returning to the Pizotifen after a break resulted in a diminishing effectiveness of the drug? Hopefully not - fingers crossed for you!

— Begin quote from “beechleaf”

P.S. I first read your message on my phone, so got to read all the first sentence without being able to see you were joking, so got to have 20 seconds of thinking ‘oh s**t’ before i saw it really was you after all…

— End quote

LOL. Sorry (although I think deep down the joker part of me secretly hoped that might happen! :wink: ).

My plan re. the Topamax, was just to get to, and hold at, 50mg, which I’ve now succeeded at. Still not feeling any particular success yet - so far, I much prefer the Pizotifen - I was ‘stiller’ on that, with much less sensation of false movement and ‘rocking’ etc. But, I want to reach the 4 month mark, which is the end of May - funny how ‘elastic’ time can be - when you are waiting for a date to arrive, it takes forever, but when you look back at how long you’ve had MAV it seems to have flown by (2 1/2 years already)! If 50mg doesn’t work, we’re ready (my neuro and I) to move to 60mg (4 * 15mg capsules).

19

Tony, when you restarted the pizotifen, how long did you try it for before deciding it was having no effect? I’m just wondering about that, as I would say it seemed like months before I saw the benefits of my medication and the improvement was really gradual. I’m kind of thinking maybe I should leave myself be, until I have my consultant’s appointment in about 4 weeks, but I will see how I get on.

I hope the current dose of topamax will work for you, but if not, the next one up with. From stuff I’ve read it seems to be quite effective, so long as you dont have too many side effects, and of course the key is to get up to the right dosage for you.

Does the topamax decrease your appetite, or had it not had any effect? Was just wondering as I know you were immune to the appetite increasing effects of pizotifen (you lucky boy!).

20

— Begin quote from “beechleaf”

Tony, when you restarted the pizotifen, how long did you try it for before deciding it was having no effect?

Does the topamax decrease your appetite, or had it not had any effect? Was just wondering as I know you were immune to the appetite increasing effects of pizotifen (you lucky boy!).

— End quote

Hi beechleaf - I stopped the Pizotifen for almost 16 weeks before resuming it, and when I went back onto it, I gave it 12 weeks before we (me and the neuro) decided to try Topamax. I must emphasise, it wasn’t that it had stopped working completely and was having no effect - it still worked the second time around, but perhaps only at 30-40% of what it had the first time around! When the day came to switch to the Topamax, I remember getting cold feet and wanting to stay on the Pizotifen - I still felt quite settled, even at 30 - 40% effectiveness. The first time around with the Pizotifen, the postitive effect was quite fast (I felt better within 3 weeks).

I would say the Topamax has probably decreased my appetite overall, although now I’ve settled down with it, there’s probably not a lot of difference. But in the first 2-3 weeks, boy, what a difference - the nausea increased over the 2-3 week period until it meant that I didn’t want to eat anything at all!! Then, I definitely lost a little weight! But the nausea thankfully subsided after those first few weeks. Overall, I would say people are likely to lose weight with Topamax, if anything…