Update- migraines, fainting, and a drs appt.

Hi All,

I had two doctors appointments this week. One was with my regular PCP and the other with the cardiologist at the University. I got some good news, an interesting opinion, and am still have some questions.

My PCP suggested that we try Provigil to see if it will help the fainting. I am all for this. He said it has helped some of his patients with chronic fatigue symptoms. (The only problem is that the rx wound up in a stack of records I took to Birmingham with me. I think it got mixed up with some of the records that the cardio kept. I am waiting on a call back. If I don't find it, I did schedule another appointment with my PCP for a new script. I have been on a variety of C2 pain meds and have never lost a script before! But I think all will be taken care of. I can't start it until after I see the psychiatrist next week anyway. It is just a big hassle.) I am very glad that he is willing to try it. The cardiologist also felt it was a good idea.

I had an appointment with a new Cardiologist at the University Hospital about 90 miles from here yesterday. He was very good and helpful. He said that I had seen pretty much everyone there is to see about this, but he did say he liked a challenge. He also said that it was some form of dysautonomia, but no one really understands why it is happening or what to do about it. He explained that many drs who see these cases see patients who are fainting and they try the run of medications, can't find anything structurally wrong that they can fix and then get frustrated because they can't fix it. If nothing else, he told the truth- that is exactly what happened with Cleveland, and many of the other drs I have seen.

In the end, he asked what I felt he could do that the others couldn't. I said that I needed a local cardiologist and that I needed someone to take the loop recorder out and simply be there to bounce ideas off. He said he would be happy to do all of those things. He is probably the first dr I have seen for this condition who looked more at me than the chart. He felt the service dog was a good idea and he seemed more focussed on how to live with this than with finding the cause. He is more conservative than others. But in many ways, I feel a lot more comfortable with him than I have with anyone else treating the fainting. This doens't mean that I am giving up. I still want answers. I still want to stop fainting, but I am also at that point where I think I have to give this a shot while continuing to look for answers and treatments. I am glad we are on the same page though. In some ways, this is kind of the same point I reached with migraines- there came a time where we had to manage the sympptoms rather than the cause. But we kept looking and found the stimulator. Maybe something will show up and will help like that.

I am also seeing a psychiatrist on Tuesday to completely rule out any type of conversion disorder or anything. My psychologist, who I have seen for about the past seven years and who has worked with patients who have conversion disorder, says this is not it. I agree. But we are ruling out everything possible.

The head is pretty bad right now. I did have to take an extra klonopin, along with some benedrul and T3. I am trying to rest and it is helping some. The plan for the weekend is to just relax.

I am absolutely exhausted right now. I just want to crawl into bed and wake up when this headache is over. However, I know this isn't the best way to deal with the situation and it isn't like me at all. I have fainted about thirty times today and I think I am tired out from pain, the drs appts, and fainting. I am rarely this tired. I just don't know what to do and I hate the times when I feel this way.

I'd love any opinions, advice, etc.

Pain free days,
sailingm

Sounds like you are making some progress. Curious on the Provigil. That was recommended to me by two doctors for fibro fatigue. However, I didn't try it, as my insurance only covers it for narcolepsy (typical) and it interferes with birth control pills. Eventually found a doctor who was comfortable with trying me on Ritalin, which has been very helpful. My insurance won't cover the Ritalin either, as I'm not taking it for ADD, but its a cheap generic.

So, I'd check if your insurance will even cover the Provigil off label. I agree that at a certain point of a condition like this you don't care as much anymore about finding the cause, but focus more on managing the symptoms. I sure have had that with my NDPH and other conditions. I'm a big proponent of multiple doctor opinions. Don't see how it could ever hurt. Best wishes.

I have Dysautonomia/POTS & it took me 25 years to get a diagnosis. My symptoms started with migraines but there are too many symptoms to list. A good source of info is "dinet.org".