MAVlisa - back on boards

I finally have my computer set up and can post again. However, it is extremely difficult to look at the computer screen. I force myself as this site gives me a wonderful connection to people who understand and gives me some hope. I am just so fed up after feeling ill for 2 years now. I just received a phone call from an extended family member, who just couldn’t believe that I am still sick after I last saw her in December 08. Then she said that she couldn’t believe in this day in age with the technology available that they cannot cure me. Well, I cannot believe it either! I HATE telling people that I am STILL sick. And, most of all i HATE being sick still. It seems as though all are just living their lives, and I am just stagnant in this migraine hell. i do not wish bad on anyone, but just wish that we weren’t so sick. How do others cope? I would NEVER hurt myself, but I wake up each day with immense sadness that I have to go through another day feeling so sick. every day is such a struggle. I miss the happiness that I use to experience in life.
I also just read the article about setraline that scott sent. IT was an interesting read. I wonder if the sample of patients actually had undiagnosed MAV. That seems to be what might have been going on.
sorry such a sad post.

Lisa, welcome back. There will be better days…and I hope soon!

Hey Lisa,
So great that you are back. I’ve been seeing lots of posts asking about you. I too understand completely how you feel and wake the same way each day. Every day just feels like the same. Another day of constant discomfort and suffering only to do it all over again. No excitement, nothing to look forward to. I also saw you are seeing Dr. Rauch and maybe that can give you hope… some fresh eyes to put trust and hope into. I get the same questions from friends who touch base occasionally and can’t believe I am still not back in life, can’t meet for dinner, etc. I am less angry that others don’t get it, and more angry that at 35, when I should be building my life, it has stopped dead in it’s tracks. I too have been ill for 2 years this August…
As for the sertraline article, I agree that the patients probably had MAV.
Hold on as best you can and I hope with the right med and a fair trial something or some combination will work… for you and all of us.
Warmest,
The other Lisa :slight_smile:

Thanks Lisa and Ben.
Lisa - yes I do see Dr. Rauch August 11. I, too, should be less disturbed by people and just focused on myself. Maybe it’s a distraction or something.
are you considering trying the zoloft? I know Dr. Newman speaks highly of it. wish I gave it a full trial before.
Unfortunately, I have to log off. Can’t look at the computer for more than a few seconds at a time

Hey Lisa,
Right now Dr. Newman wants me to keep going on the verapamil. I just had a dose increase and as long as my slow heart (42 bpm resting) and low blood pressure can handle this med, he wants to keep going for now. If I hit a wall, then I’m sure he will add zoloft which I will do. I guess I am just going to trust him and go with his treatment plan. That seems to be how he usually treats patients with MAV I believe. Although I would love for verapamil to do the trick, I think zoloft is not a bad second choice with regard to side effects and tolerability. I know Dr. Rauch likes nortriptyline at very low doses to start as a first line med. Have you tried that one yet? I can’t remember what you told me…sorry!
Best,
Lisa

Hi Lisas!

I hear you Lisa on feeling like you’re in a constant state battling this garbage every day. I’m so looking forward to the day that you can say something is working for you. I’m in a massive funk myself today with the Verapamil. I’m so OVER using my body like it’s a chemistry lab watching how it reacts to drugs hoping that one of the “side effects” is to wipe out migraine.

Interesting report from Dr Newman Lisa. That gives me more oomph to carry on with this med. This morning has not been good on it. I had nausea all the way into work (never get nausea) and the dizziness is back with a vengeance today.

I’ve had some good communication with someone from Dr Tusa’s group today. Hopefully, if I get the all-clear I may be able to show you guys some new data from an SSRI which was used specifically for MAV.

Best … Scott 8)

Hi Lisa,

Welcome Back! To be honest…in my opinion there are only a very few souls that will understand chronic illnes like ours. Most people just don’t get it unless they have it or a close family member or friend has it. I continue to work part-time as a substitute working with the mentally challenged. A number of co-workers have asked me over and over again why I don’t go full-time and I end up having to re-explain. They either are not listening or they just don’t see this condition as very debilitating.

I have had this condition for 17 years and the good news is that things do get better. The healing process maybe very slow…but at least it’s going in the right direction. I certainly hope your condition does not hang around as long as mine has.

Good Wishes,

Joe

Hi Joe,

23 years and (not counting anymore). In the beginning I tried more than 15 preventatives and then lived on painkillers. Although I have never given up looking for a cure, I spend half of my life living with it and using coping strategies (mainly going out with someone but going out all the same). I go on holidays but I know I would never go on my own.

I gave up trying to explain my illness years ago. I have usually been greeted with those half smiles meaning “you’re not really ill” and I find myself stuttering and colouring up almost apologising for being ill. Even friends that have known me for 20 years have no sympathy or understanding. Thats fine by me now. I keep them as friends and talk to them about other stuff. I have made friends over the years who have the same or nearly the same illness as myself and I talk to them about the problems we go through.

You are right Joe, there is some sort of improvement over time, its hard to define. Things change. I certainly dont get the constant 3 day migraines I used to get. I still wonder though, will this thing ever really go away.

Christine

Christine - thanks for the note. I’m so sorry to hear that you have suffered for so long. Have you tried the preventatives on a higher; therapeutic dose? I really feel for you. I guess you do begin to not care what other people think.

Joe - you’re right. few people will really understand this. I guess i’ve always been an empathic person, so it is surprising to me that people just don’t get it. Luckily, my parents and husband are very understanding. So, I guess, that’s all that matters, and I should be very thankful to have that support.

Scott - I look forward to reading more research on SSRIs. I am so confused by the mixed opinions by doctors. I hope that your body begins to adjust to the med soon.

mavny - I have tried nortriptyline - got up to 20mg, but at that point I went to Newman who took me off of it and put me on Verapamil. The side effects were certainly tough. At each increment I would feel much worse for about 7-10 days but then my body adjusted. I did have dry mouth, etc when I went to newman and he said that I would gain 50 lbs. I know a few on Nortriptyline who are doing great now and didn’t gain wt, but it is not an easy drug to get adjusted to. I would try it again, maybe. Zoloft is a MUCH easier drug to tolerate, but sometimes I think that the easier route might not be the most potent and effective. However, then again people have done well on SSRIs. I just don’t know what to think. sorry for the ramble.