The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Does what I have sound like MAV?


#12

Hey guys, So gabapentin has been helping a lot, but unfortunately I had a bit of a crash this afternoon after eating a nut bar and then a banana - I think it’s the high tyramine foods that cause the biggest problems for my migraine situation. Keep an eye on that maybe. I’m avoiding high tyramine foods from now on!! Liv


#13

Sorry, I got it a bit wrong, as in not completely. What my doctor said, there is this one thing that gives your system the last push. And creates a permanent shift in your condition. However, if it isn’t this one thing by itself, it could have been anything. Just a little while later. Your body, your brain just was “ready for it” and it had to happen sooner or later. Hope you understand what I mean.

I for myself can certainly feel changes in weather and climate. Particular if it changes from high air pressure to low air pressure.

Slightliy off topic: I’ve known quite a number of women who are even on the pill when they are not in a relationship because without it they are experiencing mood swings, skin problems and painful periods.

But as you are very sensitive to changes I’d think that artificial hornons are most likely not good for you. So, if you found a way without hormons that suits you, it’s certainly the right thing.


#15

That’s so crazy about a banana and nuts making you feel so bad. I still have yet to find any dietary triggers. I’ve been off caffeine all week but haven’t noticed a difference. Naturally I seem to get a couple good days and a couple bad days. Yesterday and the day before that I’d say I was 90% most of the day except when I went into Michaels and the fluorescent lights along with lots of tiny objects hanging up (beads and jewelry section) made it hard to concentrate on anything. So far the only trigger I can pinpoint seems to be when the weather gets cold and cloudy here. Maybe I should move to the Southwest lol.

@liv85 What happened to just increasing the Nort.? It seems from what I’ve read on here Gabapentin doesn’t have that great of a success rate with MAV patients. At least you can find relief when you’re not around bright lights. I hope you find relief soon!

@Frank183 yes I was initially just on birth control to control my acne and I was 100% for 3.5 years on it. I barely felt like I was on anything, it felt like a sugar pill. My last half year on it I had increased headaches so I decided it was time to take a break. And see before this whole MAV thing I thought I tolerated medications quite normally. For some reason my body just became intolerant to the birth control pill.


#16

@anotherstar: did you go back on the same pill you used before against acne ? The anti androgyn pills are a lot more prone to heavy side effects than regular BC pills.

I remember some 20 years ago it was a common “trick” for high school / college students on a tight Budget to find a nice doctor would “diagnose” them with acne or hirsutism (even though not true) and prescribe an anti androgyn BC pill as a “medication” against it so that the health insurance would pay for it and they had free contraception.

Today however they rarely prescribe them any more and even the pharma companies producing them recommend not to take them as contraception only. They use them only if it is the only option helping against acne and then it’s like two birds killed with one stone.

So, you might be ok with regular pills. although I wouldn’t recommend trying it.

Has your acne come back since ?


#17

I was on Ortho Tri Cyclen which is one of the most common pills ever and apparently it’s well tolerated by most. And yes it was the same one, I’ve always been on.

Being a girl involved with birth control, I can say I had no problem getting a prescription for Yaz (an anti-androgen bc pill), although I chickened out and never took it, just stayed on my old Ortho Tri Cyclen. I know many of my friends who are on Yaz or Yasmin too. They still are in the top 10 birth control pills prescribed each year. I don’t know why considering the side effects.

And yes if you see my first posts my acne has been horrible well really my whole life but especially now that I’m not on birth control.


#18

A bit off topic now: Ortho Tri Cyclen and Yaz/Yasmin have only a marginal anti androgyn effect and are only marginally helpful against acne.Besides that Yaz/Yasmin belong to the “next generation” pills that are currently under investigation as a couple of young women have died from that. Arguably though.

As far as I understand it (I have a leedle bit of a chemistry Background) they wanted to replace the estrogene used in the old pills as they feared it might be related to breast cancer and also could have weight gain as a side effect. With all the good intentions they might have gotten it wrong. Over here many women want to go back to the “old” ones, but it’s not that easy as the patents of the old ones are expired and there are a lot of cheap generics available. So the pharma companies are trying to push the new ones through the doctors prescribing them …

Another side note: some of the medications against migraine such as Topmax can reduce the efficiency of BC pills and can lead to an unwanted pregnancy.


#19

So good news is that my new GP seemed very knowledgeable about MAV. He said his wife even has some variant of it and he said around 20% of his migraine patients consists of MAV. He is super nice and understanding and let me talk to him as long as I needed. He said mine didn’t sound exactly like his other patients as I seem to have symtoms 24/7 when I’m in migraine brain, but I don’t feel too weird as many people on here also have that.

Now the bad news. He prescribed me Propranolol which sent me to the moon. Oh my god, it makes me feel SO weird. My body feels physically dizzy on it instead of it just kind of being in my head and it makes me yawn and almost fall asleep all day, I’m so damn fatigued. I’m quite literally a zombie on this crap. I know it can make you feel worse before better but there is no way I can function at this level. If I stuck it out I’d be off work for at least a month which I absolutely cannot do. I took 60 mg before bed but the fatigue is just unbearable. I’ve called his office and asked that it be changed to verapamil. I’m so sick of feeling this shit I just want to be normal again.


#20

Hey Anotherstar,

I’m having excellent results (not too fatigued once I got used to it) at 200mg of gabapentin 3x a day. I take it at 8am, 2pm, and a bit before bedtime around 10am. If I go higher, I get oddly dizzier and very out of it, like I’m stoned or something, so I am staying at this dose. I still get some symptoms if I have too much caffeine but 1 cup of coffee seems okay on this med. Fluorescent light sometimes also create some MAV symptoms to intensify but it’s manageable. I have realized this is something that I probably will have longterm and I am able to cope with the symptoms on this med at this dose because the side effects are not bad (just some fatigue, but it relaxes me as well). I sleep super well on it. I recommend the med if propranolol is too sedating.

Best wishes,
Liv


#21

Liv that is wonderful! I take back what I said earlier about gabapentin then :slight_smile:

So would you say you’re close to 100% as long as you’re not under direct fluorescent lights? I will mention this one to my doctor when I talk to him next.


#22

Olivia,

Really happy for you. Stay with what works, don’t rock it :).

No updates from me.

Best,
Asli


#23

Thanks so much, Asli! It’s a relief to find something that works that also allows me to feel like myself.

Anotherstar- yes Gabapentin is the best drug I’ve tried so far, but I can’t go higher than 200mg 3x per day it seems without having too much sedation and another type of dizziness that’s different from MAV.

I’m just a little tired for a bit after I take the pills but I’m fine at this dose in doing everything I like to do, even horseback riding. The only issue is that I do get some of the MAV sensations back (not at all as severe though) when I’m exposed to lots of computer screens, media screens, fluorescents, etc. still. CFL lights etc. I much prefer incandescent light bulbs and natural light.

People have a lot of problems that are worse than MAV and I’m just going to try to take care of myself and enjoy life and try to push on with this. Gabapentin makes my symptoms manageable. Hope you guys feel better soon. I’ve realized I may never be 100% but I think that I feel well enough to function on Gabapentin! Liv


#24

Not sure where to go from here. It’s been over a week since I touched anything (propranolol) and I’m still way worse than when I started those stupid pills. It’s like the prop awakened the MAV beast and now it refuses to go back to baseline dizzy that I had before (irritating and no fun but livable!)

Last year my MAV burned out around March and completely vanished in April. Part of me wants to hold out till then but it’s so hard lately. I’ve been waking up dizzy and when I turn over in bed I get stomach drops now which I never had before. This disease is so unbearable, especially at 25. I can’t help but feel like life is somehow over for me.


#25

@anotherstar: I really feel for you. I’m quite a bit older than you, but still far away from retirement. And I perfectly know this feeling of desparation that there is nothing you can do and that life is over.

4 weeks ago I tried “Flunarizine” which is also a calcium channel blocker like Verapamil. It did help to some extent, but after 5 days I got heavy mental side effects. I don’t know how to describe it, it was partly a depression and partly a feeling I’m going to lose control completely. It was some sort of a feeling that I was only a passenger in my own life, that I just wasn’t myself anymore, don’t know how to describe it better.

Things that relialby help me to a certain degree and have no (or just minor) side effects are:

  • Vitamine C in high doses which is like 1.000mg per day and more
  • Vitamine B complex (B1, B2, B6, B12)
  • Magnesia
  • Zinc
  • Calcium

For all those things mentioned above I have to use very high doses, typical 10-20 times higher than the RDA. Those plain vanilla multi vitamine capsules from the drug store don’t do anything for me.
Possible side effect is a bit of diarrhea, but not too bad.

  • Migravent: very helpful, unfortunately relatively expensive.

  • Cetirizine: an old OTC anti histamine. Might contribute to a bit of weigt gain. Others have it also reported, but this is not confirmed. Might as well be that if you feel better and enjoy life better, then you also might enjoy eating more. But anyway it’s for sure not that you pop up like pizza dough …

  • Dimenhydrinate: is used in travel gums against motion sickness. Main purpose is to fight nausea and vomiting from motion sickness but helps me against vertigo/dizziness. Takes about 2 hours to show an effect. Can cause a bit of sleepiness as a side effect but not too bad. In the US branded as “Dramamine”

  • Diet: staying away from known triggers, in my case coffee and alcohol, particular wine and champagne. I also try to eat low carb and stay away from any kind of preprocessed food but rather go with fresh salad, veggies and a bit of meat/fish/eggs

If you haven’t tried those things yet I recommend to do it. But DON’T combine Cetirizine and dimenhy. with any “hard” drugs, such as Verapamil or Gabapentin as they might take influence on each other.

With those things I am in this state as you describe it “no fun but livable”. Hope that helps …

(NB from admin: these images link to products members have found helpful and at the same time helps fund the site: As an Amazon Associate I earn from qualifying purchases. More recommended products here. Thanks for your support!)


#26

Hey guys,

Gabapentin is a drug I recommended to another star before, but unfortunately after being on it for more than a few weeks, I have noticed that it is bloating and very sedating. It did work at 100-200mg 3x a day extremely well for my MAV symptoms though. But I am too tired and have absolutely no motivation to do anything when I am on it.

I am giving good old topamax another try because it does seem to cut my MAV symptoms but it is more energizing and the weight gain is not an issue. It is also supposed to be very regard on this forum for MAV-ers if they can stick out the first few months of it. If I can’t deal with the side effects of topa, maybe I can figure out some other plan…

Best wishes to you guys too. These meds aren’t fun but I think topamax might be the best bet perhaps, at a low dose hopefully for me…The part that is stressful is the birth defect issue with topamax, so I have no idea what I’m going to do in terms of planning for the future (I’m a relatively young female) but I’ll take things one step at a time. xx


#27

You can do it, @liv85!! I started Topamax in mid-December and already am at 125mg (I live in NYC and am desperate to gain control of the subway system again - subways and dizziness do not go together). I suffer from both chronic traditional and vestibular migraines - Topamax already has helped with much of my traditional migraine pain (reducing pain from a steady 8 to a manageable 5) and almost eliminated my daily morning migraine aura. It has yet to make a dent on severe photosensitivity or motion-sensitivity (enter my new little friend Baclofen, which has put an end to subway platform throw-up sessions - they’re trialling it up here for vestibular patients and it seems to be working).

Now, if anyone can share tips on how to reduce what I like to call the ceaseless leg pins & needles…


#28

Thanks so much for the encouragement, primer!! I have taken b2 and magnesium (oxide) tonight (both at 400mg doses) as recommended on some headache websites as a last ditch effort to feel better naturally but I don’t hold out too much hope that it’ll do much.

I just have so much trouble with side effects, and being young it’s hard to imagine being on a drug for a very long time (and if I want to have kids…that’s a concern…) but honestly I have to live my life and keep my job, so I’ll go back topamax after the next 2 days if I don’t feel a big difference with b2 and mag.

I’ll let people on this forum know if that magically has any positive effect. Doubt it though.


#29

Don’t worry - I’m young, too. Two of my best friends are on Topamax and they both have beautiful, healthy children. You just have to stop taking it whilst pregnant. The side effects are tough but they’re far less severe than the condition it’s treating (at least for me it is). The first few weeks are the hardest part - download some good books on audible (or your public library), make a big batch of rice pudding and you can power through it! Oh, and add some butterbur and fish oil to your vitamin mix and then you’ll have a nice brain-healthy cocktail. Cheers!


#30

Hi primer! Thank you!! We’ll see how tomorrow goes… I am pretty sure I’m jumping back on the topamax bandwagon depending on how I feel now that I’ve stopped gabapentin, which was way too sedating for me to function at work. There are millions on the med, so I don’t know why I am so afraid of it. :slight_smile: I agree that the illness itself is far worse than any side effects when it gets bad under fluorescents and other stimuli. Thanks again for your comments and encouragement. It’s hugely appreciated. xx


#31

You can do it! Topamax is a difficult drug but listen: we have it easy compared to those who it’s truly intended for. Traditional Topamax patients can go up to 400mgs - so what we have is small potatoes! It’s like what my vestibular therapist says: take it one day at a time, always look for the positive. Even if it’s a shit day, you always can find something positive - even if it’s a warm bath, successfully doing your Bs or cozy cup of tea.


#32

Thank you, Primer!! :slight_smile: That is true. I try to stay positive that at least this isn’t full blown epilepsy, that would be very scary indeed. xx