Frustrated- migraines and fainting

Hi All,

I am really frustrated and tired of all of this right now. The headache is not letting up much at all. I barely slept due to pain, in spite of Zanaflex, even though I was exhausted from fainting 10+ times and pain. I have been up since 430. I just hate this. I am doing my best to hold off an IV as long as possible as they are becoming less effective. Usually, when this happens, I have to stop getting them for about 2-3 months, so that is probably what I will do. I do have another course of decadron left and I can start that today.


I am also really tired of the fainting and am having a very difficult time finding someone who can help me with it. My cardiologist has given up on me and told me that the fainting had to be psychogenic-that I was doing it for attention- because I don't have an arrthymia. I do have tachycardia when I faint, but it is all sinus rythem. My parents and I are also wondering if this could be a strange form of petit mal epilepsy or seizures since anti-convulsants help. My neuro won't do another EEG and has told me that he will only treat the migraines, but he doesn't know of anyone else who deal with this.

I was seen at the Mayo Clinic in Jacksonville 2 years ago and they thought it was Neurocardiogenic Syncope and reffered me to a dr in Toledo, but it is nearly impossible to get in touch with him, which is why I started seeing another cardiologist Depakote and Klonopin help. Once we get Mom a little better, we are looking into going to either the Cleaveland Clinic or Hopkins. Right now, it just feels like I am stumbling around in the dark with no light to guide me. I told mom this yesterday and she said "that's exactly what we are doing." I have tried dilantin, but was only on it for a few days because it is no longer the drug of choice for petit mal.

I saw my pain management doctor last week. (Well, I saw his NP, but she did consult with him.) I asked about adding something stronger for the really bad ones and she said she would ask the dr. I told her I didn't really want to go back on the long acting narcotics, but asked if we could add something immediate release for the bad ones. Unfortunately, he said that we could either stay where we are for now or go back on the long acting pain meds. He also had the NP ask me what my neuro was giving for headaches- klonopin and benedryl as needed. Pristiq and Zanaflex for prevention. I was surprised when he said that was not a lot of medication for the amount of pain I am in and that we could re-evaluate the situation the next time I saw him, if we needed to go back to the stronger stuff, we could.

The fainting has been horrendous andd scary. I passed out in our backyard yesterday- on concrete- and rolled part of the way down the hill before I came to. It really scaredd me. I am going to make an appointment at the cleveeland cliinic today and am also going to ask to see a neuro while I am there.

Anyway, thanks for letting me vent.

Pain free days,
sconesail

I wish there was a real life Dr. House we could get on your case. I know there are doctors that practice what he does, but I mean the 'real' House. He always gets the answers, and right now, I think you could use that as much as a course of treatment. I don't think any of us would care if he's the jerk he appears to be if he could find a solution for what all we've had going on. I know I refer to the neurosurgeon who did my back surgery as a sadist, but I'd send someone to him in a heartbeat, because he fixed my issues, so personality isn't everything in a good doc. Good Luck!