NOT Responding to Treatment Stories

Specific Illnesses & Conditions VM/MAV
#1

Hi all. I appologize if this topic has already been created and burried someplace. I’ve been looking over the forums here for a couple of years and haven’t seen this topic or a similar one. Finally, for some reason the forum let me register!!! :slight_smile:

I would like to hear stories from people who have not responded to any treatment for MAV. I know…kind of depressing…but that is the situation I am in. I have chronic bilateral MAV, started in 1996 (at least that is the first time I had to take time from work for not feeling well with MAV symptoms). Started out with 1 or 2 episodes a year (although I have had migraines for years which respond extremely well to Maxalt) and continued to increase in intensity and frequency. I was finally diagnosed with MAV in 2007 and in April 2008 finally had to stop working.

The majority of the medications used as preventatives for MAV (or even migraines) I haven’t been able to take because of sever reactions, side-effect, or made it worse. The few I were able to get through the reactions didn’t end up helping. I have been through vestibular therapy - didn’t help and was making it worse, natrual treatments, all of the dietary changes that may eliminate triggers, environmental changes that may eliminate triggers…bottom line is after all of these years can’t identify any tirggers.

So I have been at the point for a number of years of reducing the symptoms as much as possible…which isn’t a whole lot but is totally better than nothing :slight_smile:

90%+ of my time is spent in bed, dark, quiet, trying not to move so as to not make it worse. Pretty much have had to give up a very happy life, great career with a major international software company base out of Seattle, WA (you can probably guess which one if you use a PC and not a MAC :)) spending face time with friends and family.

I will say that the time between episodes, whether it is a few hours or if really lucky a few days are something that I take the most advantage of over anything else in life!!! Gotta love those times!

Becuase of my former employer’s medical insurance I’ve had the best medical treatment that could be found. So treatment options haven’t been for lack of opportunity.

So I am curious. Are there others out there that have not responded to any treatments? If so, what do you do with any time that you may have symptom free. What keeps you going day after day?

For me the things that keep me going is what ever time I get between episodes, hope for new treatments as MAV becomes more understood (it didn’t hurt that Janet Jackson announced that she has MAV a number of years back), and of course reading/hearing about people who DO respond to treatment.

But as in all cases it is always helpful to know you aren’t alone in a situation which is why I started this topic about stories of those who haven’t had sucess with any treatment. I can’t be the only one :stuck_out_tongue:

Anyway, that for reading this mini-novel. While I focus on the positive I would really like to know if I am an utter freak of nature :wink: , or if there are others in the same boat as I am.

#2

I know there are others who have not responded to MAV treatment. I am still fairly new to this but before I take a lot meds I am going to investigate high or low CSF pressure as a possible cause. I also have lyme disease so I am treating for that as well.
Have you checked out all other possible causes?

#3

Hi - I noticed that your post was getting close to dropping off the front page, and I felt bad about that!

In a sense, several people here are currently not responding to treatment as they are doing trials of meds after having tried a number of them, so I don’t think that you’re an anomaly as far as being someone who is currently symptomatic and not responding to treatment. As for others who’ve given up trying any treatments after several not working for them at all, I can’t say. But…

opus’ question is interesting, and I’ll pose another one: migraine can change over time, and it’s possible that your reaction to medications may change as well (for example, I had one kind of visual aura years ago - temporary colorblindness - that I never had again). Would you consider revisiting some of the medications you’ve already tried? Did you try the very slowest titration schedule possible on each of those meds? Some people have given up too soon, only to find out that later that it was because they went up too fast on the med - trying again at a MUCH slower pace worked out better.

If you had allergic reactions, that’s an entirely different matter - but if it was a problem of dealing with side effects, many of us have had to tough it out through the “body getting used to it” phase, which can be extremely difficult but with “eyes on the prize” and a start low and go slow philosophy, it sometimes pans out.

I’m so sorry you’re in this situation - MAV sucks. Take care, and best of luck to you.

#4

Bismark,

I’m sorry that you are feeling so poorly. Spending 90% of your time in bed makes me feels sad for you.

I have had problems with most meds so I guess I could say I am not responding to treatment. Though I am able to go to work everyday, even though some days I would much rather stay in bed.

Topomax - made me very anxious and distressed feeling, gave me nausea, woke in the night with coughing and feelings of asthma, tight breathing

Nortriptylene (sp?)- I had the worse insomnia ever, a very unusual symptom, 3-4 hours of sleep for a month

Verapamil - terrible constipation and something else but I don’t remember what it was

Beta blockers - can’t take because of allergy shots for bees

Vestibular therapy - ugh, I’ve never tried it, makes me sick just to think about it. I’ve heard it shouldn’t be attempted until you have your symptoms under control.

I’m currently taking HCTZ without too much of a problem, it has lowered my potassium level enough that I now have to take a supplement for that (which I’m not taking because they are too big and I’m afraid I’ll choke)

Valium and meclizine I take as needed but don’t like to take either too much, especially the valium but at least I can tolerate those. Have you tried either? I wouldn’t reccommend long term use, but enough so that you can get up for a few days.

I hope you are able to find relief somewhere, somehow.

Book

#5

Bismark, I am one of those who has not responded to the preventatives, tried over 20 of them over a 20 year period. The side effects were too bad for me. Seeing as you cant tolerate the preventatives, and you dont want to be in bed all your life, I suggest you try, like me, very small amounts of painkillers throughout the day. By small, I mean like a half of one painkiller, then another half later on, I find I can control the heads and the dizziness somewhat by doing this (I need a painkiller with paracetamol, caffeine and codeine in it). I know that caffeine is not brilliant, but for me if I pick painkillers with those 3 ingredients, I need a lot less of them and get some sort of control, this has enabled me to have some sort of a life over the years. I havent given up on the preventatives, I am slowly trying them all again, but if all else fails, take what works to give you a life :slight_smile:

Christine

#6

Hi All

Thank you so much for your replies. It sounds strange, because I feel your pain and frustration, but it does kind of help to know I’m not the only one who hasn’t respponded to treatment. But I do hold out hope since many of the medications are for other more commonly occuring conditions and there are various research efforts going on around the world for MAV and other vistibular disorders (a couple specific ones that come to mind are occuring in Argentina and at the Univerisity of Washington Medical Center). I hope for all of us that breakthroughs continue to occur and we all get to return to a normal life a quickly as possible!

Best wishes and sincere gratitued to everyone!!!