Update and desperately hoping for some help!

Specific Illnesses & Conditions VM/MAV
#1

Its been quite a while since I wrote. Unfortunately, I am no better. Was hoping to write again with more positive news, and frankly just so sick of this illness and sad to write that I’m still doing horribly. For those that remember me, my worst symptom by far is rocking. Rocking (disequlibrium) is terribly violent when I walk and stand, making such activities nearly impossible or extremely torturous. My head always feels so “spinny” and I’m beyond fatigued. Been diagnosed by many doctors with MAV, but thus far no medications have worked. tried Nortriptyline, Verapamil, Klonopin and Celexa with no improvement in above symptoms, except verapamil and nortriptyline helped with my more textbook migraines (and migraines with aura), which are the very least of my problems. My symptoms exacerbated with my first pregnancy, and I am due with my second son in 2 weeks. Again, my symptoms exacerbated, as I expected. Fortunately, I have a live-in nanny. otherwise, I would never ever be able to have children. This is certainly not the path I wanted, but glad that I can have help and still have children being as ill as I am. I just hope that they get to see me well one day. My son is doing great. He is happy and healthy, and this pregnancy is going well, as far as baby is concerned, thank goodness.

guess I’m just reaching out for support and reasons for hope. It is so hard for me to get through this delivery knowing that I have this miserable life ahead. I feel incredibly hopeless. and, I need some hope to help me through all this. I often read of people cherishing the better days, and that helping them through, but I do not get better days. I am always so very sick (4 + years). And, the failed medication trials have left me more hopeless than ever. I tried all above drugs to therapeutic doses. My next drug will likely be Topamax, but feel so discouraged that it will help, based on all my previous experiences. I realize it has different mechanims of action, etc., but I still feel so hopless. I do know I have no choice but to trial another drug. If Topamax fails perhaps I’ll look into CSF issues. I know I cannot stop trying different avenues.

I recently read, “How to be sick,” by Toni Bernard. I was hoping that it would be somewhat helpful for my coping. But, it wasn’t. I am in no way able to be at peace with being this sick. I was so young when this happened (age 30) - I realize this is an awful illness at any age. I was marrying the love of my life, recently received my PhD, and had a beautiful life ahead of me. This illness is comprised of such suffering that there is just no way I can live like this in peace.

I am so sorry for the sob story. I hope to not get others down. I realize that I am an incredibly difficult case, so please do not feel discouraged by reading this. Any suggestions, etc., on how to cope would be so helpful. any reasons why I shouldn’t be feeling hopeless?? I am pretty much bedbound, and even when i am not pregnant and at my worst symptom wise, I am tremendously debilitated. i spend less time in bed, but everything I do is such a struggle and so torturous. And, the only reason I ever get out of bed is because of how extremely hard I push. I always say anyone “normal” with such symptoms would be in the emergency room or bed. i’m just so scared of never getting any quality of life back. sometimes I just hope for ONE day of peace, but of course I want so much more. I want to be well again, and live and enjoy life.

Thanks for reading. Much appreciated.

#2

Hi Lisa,

I am so sorry about how you are feeling right now. I thought I was feeling desperate also, but I think you are worse off than I am right now. I don’t experience the rocking, so I feel fortunate for that.

I am so glad that your pregnancy is coming along nicely, although it must be hard to feel the way you feel and be pregnant. It’s terrific that you are also able to have a nanny to help out with your son and that he is doing well, but I bet it’s hard for you not to be able to do the things with him that you would like to do.

I just started this journey in August and have been basically homebound because I haven’t been able to drive because I become instantly dizzy when looking out of the car while moving. I also feel the same way when riding in the car. My mom she thought I was just having anxiety, but I knew that wasn’t true because I have never been anxious while driving or riding in a car and I did a sample test of taking xanax while riding in the car with my husband and nothing changed. I also have dizzies randomly and in stores and while looking at certain graphic patterns.

I saw a neuro and he didn’t know what was wrong, so I am still waiting to get in to Dr. Baloh at UCLA and I my insurance probably won’t approve. I gave my regular doctor a bunch of info from this site and we both think that I probably have MAV and she is currently trying to help me through this with trying different meds. I believe it all probably started last year when I lost my dad at 64 and both of my grandmothers within a few months of each other. This year I went into menopause and I think that just threw me into this mess with the hormonal changes.

Please don’t feel bad about asking for help. That is what we are here for on this site, to help each other get through this mess. I know we don’t know each other, but if you ever need to talk just let me know.

I hope you start getting some kind of help and relief soon.

Take care,
Donna

#3

Thanks so much, Donna, for your kind message. So nice of you. I wish you all the best as well.

#4

Hi Lisa,

I really feel for you. I was like this, but only for a few months and I can remember feeling like I would never be ok, so I can only imagine how terrible it must be for you going through this for years. Poor you.

I know it’s hard not to give up hope, but after your lovely new baby comes along, I hope you can find the strength to keep trying medication. Sometimes it really is just a case of trial and error until you find the right medication. I was also wondering if you have ever tried VRT? I know it would seem very hard to do it when you’re so dizzy, but I wonder if it might be worth a try?

But please don’t apologise. We are all here to help and listen, and we’ve all been in the same boat (although perhaps to a lesser extent for most of us) at some point, so we all understand. Take care.

#5

Thanks. I tried VRT at RUSK in new York in beginning Years but was told it wouldn’t help for mav and my doctors told me the same. So didn’t try for long. I sometimes wonder if I should try again.

#6

Hi Lisa! I was thinking about you just the other day and meant to email you but time got the best of me. I’m so sorry that you are still so sick. I have been dealing with this for 15 years (although as you know I was diagnosed with MS at Hopkins for 10 years!). I know how hard it is especially as a mom. My little guy was 5 when this began and I too had a nanny who helped immensely. We had many, many reading sessions in my king sized bed!! They were actually good quality time with my son and despite my health issues, he has grown into a fine young man playing football and making terrific grades at an ivy league school… Not telling you that to brag…just to let you know that you can be a great mom with a little ( or somedays a lot!) of help!

Once your second is born, you should consider going to Duke to see Dr Adkins. As a matter of fact, you should make an appt soon as she is booking out to June!! I just posted about my visit with her yesterday and I’m feeling hopeful! I want that for you too my friend! Pm or email me if you’d like to talk further, but please hang in there… We all must support each other. Although our journeys may be different, our pain and suffering is the same… Dee

#7

— Begin quote from "MAVLisa"

Thanks. I tried VRT at RUSK in new York in beginning Years but was told it wouldn’t help for mav and my doctors told me the same. So didn’t try for long. I sometimes wonder if I should try again./quote

I think different doctors have different views on this, and some try VRT alongside medication. My consultant said she’d have very mixed results for people with MAV. Some find VRT really helpful, but some find it aggravates things and makes it worse. She reckoned - in her experience - it’s about a 50:50 split. I have to say, for me it really helped. However, my situation was different to yours, as I had got reasonably good control of it using medication. I was just left with some residual problems, like getting mild spins in certain head positions, and I think this was just that my brain had got used to this being ‘normal’ because it had been going on for so long. I have to say that the VRT worked very well (and quickly) for me. Within a week all of this had stopped. Without doing this I don’t think I would have ever made a full recovery.

But I appreciate that you are in a different situation to me. But maybe it would be worth you trying again at some point?

— End quote

#8

Hi Lisa

I am so sorry that you are suffering like this :frowning: MAV is a hideous illness. I have had the dizzies for 2 years now (i am not officially diagnosed but 99% sure i have MAV) and i am finding it hard to cope, it must be even worse for you having had it for so much longer.

Your story does give me some hope though as i have had 2 miscarriages since having MAV and thought that there was somehow some link and i would never carry a baby to term but reading that you have been through full pregnancies with this helps me a lot.

Have you tried the migraine diet at all? Its very tough to stick to as there are so many no no’s out there but some people do find a big improvement with it. I am experimenting with it currently and it has so far definately helped with the headaches side of things at least.

I know what you mean about being unable to accept this illness as part of daily life, its not like living with a bad leg or other ailments because it is there 24/7 and makes doing anything so hard. I used to try and ‘embrace’ the dizziness and not fight it but i still stumble about at home and work (only do part-time now) regardless.

I really hope that you are able to get some sort of relief in the future and good luck with your pregnancy/birth :0)

Dee x

#9

Dee - thank you for your post. the story about your son really moved me and put a smile to my face. I appreciate that. I am very glad to have read about your appt with Dr. Adkins. I don’t think I’ll make an appt with her quite yet, as I have a doc very well-versed in MAV in driving distance, and either way I want to try Topamax next. Please keep me posted on your progress. Again, so glad to have read about your appointment and wish you all the best.

Beechleaf - I’ll never say never, but I feel strongly that if I get well it will be medication that does it. But, I know there are mixed opinions about VRT for this.

Dee#2 :slight_smile: - I am incredibly sorry for your loses, but as far as I know there can’t possibily be a causative relationship between MAV and miscarriages. I wish you all the best
I have tried the MAV diet quite strictly for 6 months, and it didn’t help. maybe in combination with the correct med I would see more progress with it. I’m not sure. But, I did it fully and incredibly strictly for all those months with no improvements.

#10

Lisa,

I’m so sorry to hear that you are still suffering so badly. I had hoped that your absence from the board was because you’d improved and were getting on with the business of being a mum and having a normal life. I wonder if all the hormonal fluctuations from pregnancy and birth is playing a role? Regardless, I think you are an absolute champion for going for a second pregnancy when you feel so awful. I really hope that you can find something that brings you some relief.

Best,

Vic

#11

Vic - thanks for your kind words. I promise if I am ever better, I would surely let you guys know. I know how vital hope is. I love reading success stories. My pregnancies definitely exacerbate my symptoms, but I am always so disabled, pregnant or not. I will try to be more present on the boards. Guess I was just feeling so fed up and sad.

#12

Hi Lisa,

I’m so sorry to hear this nightmare is still going. I had no idea you were pregnant again and had another baby! Congratulations. :slight_smile:

As for the ongoing rocking and rotten symptoms, what’s the story on the specialist’s front? Have you been given any guidance lately on what you might do next in terms of medication? I’ve forgotten who is looking after you. Is it Newman by any chance? I believe he’s in New York.

I’m wondering how you would do on either Periactin or Pizotifen. Granot thinks these types of meds are very effective for wiping out the more migraine variant type stuff which you area dealing with. Also, have you thought about propranolol?

You may recall the Waterston paper where there were cases on there of women with 10 years of intractable vertigo and dizziness and who saw a complete resolution of symptoms on 1-2 mg of pizotifen. You may have to get it from overseas as it’s not available in the US. There is definitely hope for this. Can you chase this up?

Hang in there champ … Scott

#13

Hi Lisa -

So sorry to hear you’re feeling so lousy. Surely “hormone soup” is making things worse now, but how nice to have baby to look forward to in a couple of weeks!

Just wanted to let you know that Topamax has given me my life back. I can’t drink fizzy drinks anymore because they taste icky, and I do have some word-finding difficulty with words that I don’t use very often, but I’m willing to pay that price!

I was afraid I might have to give up driving because I was having severe dizzy spells with tunnel vision auras, and worried about what would happen if I had that while driving. The rocking and head motion intolerance didn’t go away as quickly as the severe dizzy spells and auras did, but after about 3 months those cleared up too.

I consider myself very lucky to have been given Topamax first because it did the trick - from diagnosis to good symptom control in just a few months is a great outcome for anyone with MAV. I hope you’ll have good luck with it too!

FYI - My doc was going to have me start at 25 mg and increase by 25 mg each week if I could tolerate it, but a doctor friend suggested I go slower (up 25 mg every 2 weeks) even if I felt OK at the end of week 1, and I decided to follow my friend’s advice.

Take care, and best of luck.

#14

Hi im there every step of the way, 4 crap years and counting with one son. Ive tried sandromigrain, inderal, periactin, 5htp vit b2 ZIP NADA NOTHING!!Life is like you said torcher. MY BRAIN DOESNT WORK, I CANT STAND GOING OUT ITS SO UNCOMFORTABLE nobody understands etc. this illness drives me nuts!! But i can walk now and im still here and finding ways to keep the home going. just! ive been told i need a brain op for something else very rare thats most likely going to cause huge probs if i dont deal with it and all i care about is getting rid of the vertigo! im seeing someone in a month for botox if it helps ill let you know by posting. i do feel your fustration im sure youll find a way it could be the topa :smiley:

#15

Hi Lisa,
I’m so sorry to hear what you’ve been going through. :frowning:
I’ve been lucky enough not to have been bed-ridden by this, but I have experienced disequilibrium/rocking/dizziness pretty much every minute, of every day, since Sep 2008.
But there have been glimpses of breakthoughs. Firstly Pizotfien was amazing for me - after 3 weeks at 1mg my daily dizziness had diminished to the point of being forgotten about, so I would echo Scott’s comments and say, how about giving this a try? I came off it prematurely and it didn’t work quite as well the second time around (perhaps 65 - 70%). So I tried Topamax next, and even though this was a much harder ‘drug-trial’ (and longer, taking 3 - 4 months once I had finally reached a therapeutic dosage before seeing any benefit), I started to see the same kind of results as Pizotifen (not quite as successful yet, but still helping with the disequilibrium). So as you have mentioned, this is another one to consider.

I know how tough it is - each failed drug trial feels like a marathon that you’ve run for nothing, and you’re wondering how many more you can run - but you can Lisa - a fix is out there for you - keep pushing - we must all keep fighting and searching. My heart goes out to you - please discuss/try the Pizotifen (and then perhaps if not, the Topamax)…? I wish you all the best Lisa - keep in touch with us,
Tony.

#16

Hi Lisa!
I remember you! We joined the group aboput the same time in '09. I am so so so sorry that you aren’t doing any better. I so remember feeling hopeless and full of deperation. I am wondering though if Effexor might help get your seratonin levels back up…I definately needed it and it has helped in that area! I can’t remember if you have tried that?
Hang in there, and please know that I am thinking of you and that we are on this journey together!

Pam

#17

I read everyone’s comments and very much appreciate every single one of them. I am feeling so very ill, so it’s difficult to write much more this evening. I gave birth to my son on Saturday and he is
Doing well. I, though, am doing even worse - if that’s possible -
Mav wise. Rocking became even more violent - it is insane torture. I am recuperating well from delivery. This illness definitely shows you that all is relative. Labor , delivery, and recup are nothing at all compared to torture of this illness. I had same experience with first son. Now it’s time to finally get better - I hope! I’ll write more as soon as I am able. Luckily, we have help to care for
My son. But, want to be well and take care of him
Myself more than Anything.

#18

Hi Liza,

Congratulations on the birth of your baby boy :slight_smile:

No doubt, the drop in progesterone after the birth will be playing its part but I am sure things will get better once the hormones stabilize.

It is a miserable illness (I should know, had it for over 20 years now) but there are good times and lots of people have got nearly better with the right medication. I hope you soon feel better and are able to enjoy your new baby.

Christine

#19

Oh Lisa, this is such a bittersweet time. I am so happy for you that you’ve delivered a healthy baby but it is just horrific that you feel even worse with migraine. This truly is a fucking awful disease. I really hope that now you have delivered you can perhaps try some new meds - even if that means weaning earlier than you would like.

Thinking of you,

Vic

#20

Lisa,

I too had hoped that your being off the boards meant things were going a little better for you. If you remember, I’d reached out to you a while back as we had a mutual connection – so I was particularly interested in how you were doing.

I often feel the way you’ve described emotionally and my symptoms are not in the same caliber as yours, though they were definitely worse when things first started (at age 24, I’m now 26). I already suffered from pretty moderate anxiety on a daily basis before this started, so having a chronic condition that my friends/family nor doctors seem to understand… well, I am in the same boat as you a lot of the time with how overwhelming it can be. I am CERTAIN that the emotional component makes things worse. It’s a catch-22 because the physical part is what makes me depressed/anxious and yet I have to stop the depression/anxiety to feel a little better physically. In the times that I’ve managed to relax and accept where I am even for a few moments, I can feel some sense of peace. It is not easy.

Have you at least been able to identify anything that makes your symptoms worse? (I know it seems like just about everything, but you are still eating foods and engaging in some activity, so there could be triggers in there).

I gave up on medication after having a horrible time of it on 5 different trials. There may still be a medication out there that will get me from where I’m at to somewhere better but I’m not willing to go through the hell of a trial while still trying to manage working full time and living in NYC. At least not right now. What has helped me some is a vision therapy program for convergence insufficiency, an added diagnosis I was given after MAV. I don’t believe I had the convergence insufficiency in my eyes before the MAV came on. It also is obviously not the whole problem otherwise I’d be feeling totally better since finishing therapy. The bottom line is that there’s always the potential for something out there to inch you a little bit closer to normalcy. None of us are likely to live a completely normal life but any improvement is an improvement.

Congratulations on the new baby. Hopefully the ramped up symptoms from all the hormones will calm down soon and you can get back to your baseline.

Adrienne