Thank you, update, question, scared :(

Specific Illnesses & Conditions VM/MAV
1

Thanks for everyone’s support last week.

Unfortunately, things are no better. In fact, I’m feeling even worse than last week.

looking like I will need to try MAV meds again in a few weeks. I’ve tried so many already with zero success. So terrified that this is going to be my “life.” The torture of my symptoms is intolerable and unrelenting.

Among the medications that I’ve tried have been nortriptyline. After surpassing 20mg, I only got worse and worse. I got up to 50mg where I sat for a long time with zero improvement. I am currently on 20mg, because that dose seemed to be at least helping the head pain, but hasn’t even done that since I delivered my second son. I am wondering if it makes any sense to transfer to amitrtipyline or pitzotifen (although not in US maybe there is a way to get it - my husband even joked and said he would go to europe for it if it means getting me well - we serioiusly would do anything to get me well). Keep in mind, that amitriptyline might not be a good idea as the side effects of nortriptyline were extremely harsh for me and amitriptyline has even more side effects, reportedly. also worth mentioning that I tried celexa at a high dose with zero success. Wondering if trying let’s say pitzotifen is just beating a dead horse at this point and to move on and try a new class. I’ve already tried calcium channel blockers and beta blockers. my initial plan was to take topamax, but now I am so confused as if I do, indeed, have “low pressure,” this drug will make things worse. however, then again, doesn’t seem like CSF treatment worked so maybe I shouldn’t worry about that. of course, I will discuss all this with my neurologist, but any input would be appreciated. I am so desperate to get my life back. I don’t know how I can possibly live with these symptoms much longer. I do know I have no choice but to live like this.
I’m just so scared, and as more years pass the possibilty of having to live like this seems so very real. I feel like this illness has beaten me down, and I want nothing more than to beat this terrible illness.

2

Hi Lisa,

Please don’t despair, I tried so many drugs before I found one that worked for me - all the others did nothing or made me worse. Just to reassure you, I tried nortiptyline, amitriptyline, citalopram, topamax, pizotifen, flunarizine and effexor, I now take propranolol.

I can’t comment on the CSF pressure side of things as it’s something I just don’t know about. Although the fact that the procedure simply made you worse, from my layperson’s perspective, would make me think it might be something you can discount.

Going with my gut, in your shoes I probably wouldn’t bother with amitriptyline if nortriptyline hasn’t done anything for you. Looking at the drugs you have tried I would be inclined to try one of the anti seizure meds as they are a class of drug you haven’t tried. Topamax is an option, although if you can get it in the States I might be inclined to try lyrica, also called pregabalin. A friend of mine takes it who sees a really great neurologist called Dr Silva. Scott has posted some of his articles on this board. It’s been very effective for her and someone else I know, athough as you know that’s no guarantee. There is another anti seizure med called lamotrigine, which studies have shown to be particularly good for vertigo. Here is a study that was done:

ssm.lu/pdfs/103_108_SC_MEDICAL.pdf

Although I have to admit I chickened out of trying this one as a very infrequent and rare side effect is a nasty rash. As I get every weird and infrequent side effect going I just couldn’t bring myself to take it even though my neuro is mad keen. But that’s just me, there are loads of people taking it with no problem and it’s probably more fool me as maybe they are better than I am on the propranolol. I do well on this drug but would like to stop certain triggers like flying throwing me in to a relapse.

Something that occurred to me is do you get uninterrupted sleep? I think one of the huge things with a migraine brain is to keep regular sleep hours, and to sleep deeply and well. Whenever I have issues with sleep, wake too early, or get woken in the night, I can guarantee my symptoms will flare up. I think sleep is possibly more important than anything.

I know you have had these symptoms unrelentingly for a long time, but keep believing you will get well. I think I have said this before elsewhere, but I so know how impossible it is to believe these symptoms can go when you are in the thick of it, but they can, honestly. I look forward to the day when I hear you are doing better, I know it is coming, just stick with it, try another drug and another after that if it doesn’t work. You will get well Lisa. My fingers are crossed for you,

H

3

Hi Lisa
It’s Becks. From the knowledge I have gathered over the last 9 months I know what i will do if the prothiaden stops working. My plan will be first pzotifen and second will be topomax. I really wouldn’t worry about the whole csf thing and having low pressure. It may have nothing at all to do with mav.i cannot believe pzotifen is not licenced in the us. It is even give out for migraine in general practice here and u r lucky to get antibiotics off our GPs. It is also known as sandomigran. I wud def ask the neurologist why it’s not used in the US. If u can’t get it I would go for topomax. Maybe even with the lose dose notrip. Obviously I am not a doctor but these r my choices if prothiaden loses its magic.

4

Hi Lisa… Again, sorry that you are still going through this… As you know… I have had a long time of it too even being misdiagnosed twice with MS… But I do believe MAV is it for me… I also ventured to Duke but to a different dr who had me trial Topamax along with doubling my verapamil to 180 mg and just 25 mg of zoloft…after 2months and at that dose…and dropping a lot of other meds including klonopin, Ativan and neurontin I am feeling a little better! I am staying at 50 of Topamax for another month and we will see where we are… I will not go back to duke… I will stay with my dr at Georgetown… But I’m feeling cautiously optimistic after any, many years and lots of drs, hospitals, misdiagnosis and meds
I might be getting close to feeling more normal…I don’t even want to say it out loud for fear of jinxing it!

Please don’t despair! I would try Topamax… One thing though… Strangely I could not tolerate the generic Topamax but have had no issues with the name brand! Keep trying… I know how hard it is…we all do and we are here for one another!!! Best regards, Dee

5

Hi Lisa - As you know I am in the US and I tried pizotifen. Just ask your doc to prescribe it and order it from online Canadian pharmacy. They ship it from the United Kingdom and it takes about 2 weeks to get it. Have him write the script for .5mg for 112 pills - that’s how it comes - and it cost me about $44.00. That is a 3 month supply at that dose.

I thought it was helpful but I had to come off it because it is an antihistamine and I get a fast heart beat from all antihistamines.

Otherwise, it was an easy medicine to take.

Good luck with whatever you choose take and please consider what I PMed you about should nothing else work.

Julie

6

Hi Lisa,
Someone already posted about using the Canadian pharmacy as an option, so I won’t go into that…I think Depakote, or Neurontin/Lyrica might be a good one to try. Neurontin supposedly easy to tolerate and except for sleepiness, no bad side effects.
How is your mood? Do you think you need something for depression and/or anxiety?
I would also consider hormone therapy since things got worse for you with pregnancy/delivery…If you can find a hormone specialist near you, it might be a good idea to see if you’re in balance?
Wishing you well…
Big hugs,
Kelley

7

I’m just starting an increased dose of Neurontin (I have kidney stones and can’t take Topomax). I was originally given it as an adjunct to Paxil and Xanax for panic disorder and it really helped, so we are thinking maybe the increased dose will hit the sweet spot. I tried the beta blocker nadolol but that made my blood pressure bottom out. I would see about the pizotifen with the doctor and see what they say. I know it feels hopeless but hang in there. At this point it is worth trying anything even with the CSF stuff.

8

Hi Lisa,
One of my doctors who thought I had Mdds wanted me to take klonipin for my rocking portion. I tried it for a bit but then another doctor took me off of it because he said I would become an addict. I think it helped a little… not sure about so much of my med history anymore. I too will be curious as to your next med as I have already tried so many of the meds you have too.
I was also wondering if you thought you might get better on your own after your hormones regulate from having your son?
Christine

9

Hi Lisa,

So sorry to hear about your suffering. MAV is a beast! I am currently on nori, which I think is working somewhat. If it turns out to be ineffective, my neuro is interested in putting me on Depakote. My family has a history of kidney stones, so he wants to avoid Topamax. I was on verapamil years ago and it gave me heart arrhythmia and bottomed out my blood pressure. Eek!

Hope tomorrow is a better day!

Peace,
Jen

10

Lisa,

I wish I had something more constructive than sympathy to offer for the nightmare you continue to go through. I do agree with the others that perhaps Topamax or something in the same family is worth a try as you haven’t charted those waters yet. I also wonder if getting your hormones sorted or at least checked out could be of some benefit - hormonal fluctuations as a trigger/factor for female migraineurs is well established. Two pregnancies and birth could well still be having some effects for you.

Don’t give up!

11

Hey Lisa,
I am so sorry to hear that you are still feeling so bad. I think I would try Topamax and an SSRI such as Zoloft. Of all the three Neuro’s I’ve seen since this started Topamax was the first choice of all three of them. I did not stay on it long enough to know if it helped me as it made me so tired. However, I would try it again in a heartbeat if nothing else works. I would not bother with any Beta Blockers or Verap.
You are in my thoughts and my prayers my friend. The right med is out there. I would certainly try a combination of preventative meds.

Elisha

12

Oh, as far as it lowering CSF pressure I’d ask your Neuro but I don’t think I’d worry too much about that. Depokote is another alternative. I’ve thought about that one if Nori does not work for me.

13

I want to thank everyone so very much for your advice. I wanted to write a longer post addressinng everyone who responded, but I am way too dizzy to look at the computer for that long. But, I read each comment thoroughly and truly appreciate your help
just to note, I probably meant prothoiden, ,not pizotifen, as med to replace nortriptyline as I read prothiaden is another tricyclic, while pizotifen is a little different. I do not know much about these two drugs as they are not used here.
also, I guess it would be easier for me to forget about the CSF treatment if it wasn’t for feeling less rocking after the fluid was initially added. still not sure what to make of that. I am definitely not one to have a placebo effect.
someone also mentioned SSRIs which I have tried to absolutely no benefit. I tried klonopin and benzos as well and had zero benefit.
hope to write more soon.
thanks again

14

Lisa, this may sound completely out of left field but have you had your adrenals checked? I went to an Endo at Duke this week and had Adrenal testing. So far my cortisol levels are very low indicating adrenal inefficiency. I have further testing to do for this but my Endo believes that adrenal problems can cause the kind of vertigo we have.

15

I’m not 100%, but think might have with all the testing, including endocrin in past 5 years. I hope this doesn’t sound harsh. but, I’ve tried so many different things, and at this point, I highly doubt all this can be adrenal related. Just my opinion after all my experiences these years, but I guess one never knows.

16

That doesn’t sound harsh, it sounds realistic. Over the past 10 months I’ve been told I’ve had a lot of things that always turn out to be nothing. I wish there was a finite answer for us.

17

Thanks, Elisha. I figured you would understand.

18

— Begin quote from “rockyksmom”

Hi Lisa,
Someone already posted about using the Canadian pharmacy as an option, so I won’t go into that…I think Depakote, or Neurontin/Lyrica might be a good one to try. Neurontin supposedly easy to tolerate and except for sleepiness, no bad side effects.
How is your mood? Do you think you need something for depression and/or anxiety?
I would also consider hormone therapy since things got worse for you with pregnancy/delivery…If you can find a hormone specialist near you, it might be a good idea to see if you’re in balance?
Wishing you well…
Big hugs,
Kelley

— End quote

Lisa

We have never corresponded before so I’ll say hi, I’m Muppo (Carrie-Leigh). You know, when I first joined this board 16 months ago it was your story that stuck with me the most. I used to tell my friends and family about you as I was so heartbroken that even as ill as I was, you were the ultimate double wammy.

I always wanted to make contact with you as you are such an inspiration to this forum. I mean, look what you have achieved???!!! Yes you are desperately ill, but you have birthed TWO babies (the mind boggles how you did it) and you’re still hanging in there fighting. I admire you beyond words. I’ve never wanted children but getting MAV was the final nail in the proverbial coffin for me!!

I wanted to just add to Kelley’s suggestion about Gabapentin. I cannot tell you what an enormous leap it gave me on top of the 75mg Nori. It literally worked within 2 days. It is liquid gold. My brain was filled with out of control electricity (I could feel it and hear it) but it was never a headache. The sensation is likely nothing I could ever describe except like a centipied running through my brain wearing electric boots!

My suggestion would indeed be the Gabapentin (Neuronitn).

I want you to know that I have always prayed for your recovery and you deserve so much to have this shit knocked on the head - quite literally!

A friend,

Mup

19

Hi Lisa,
I think Muppo said so very much that was so true. Your story is so heartbreaking and it really is amazing how you had two kids with how much you are suffering, let along taking care of them. I also want (wanted) kids but there is no way I could be pregnant or take care of kids, even with all the support in the world. I mean even if I had a full time maid, butler, cook, personal massueuse…lol, I could never ever imagine doing what you did and continue to do. Keep up the fight. OUr brains have to figure this out, right!!!
Christine

20

@hannah : did you experience major side effects with flunarizine? i have to take it but i am scared with the depression and parkinsonian-like syndrom it can cause. Thanks! :slight_smile: