Hi all - boy a lot has happened since the last time I wrote including two hospitalizations from direct admits thru the ER. I am not doing well now at all but have been proactive with my doctors and my neuro refered me to another neuro in his practice so we can have a fresh look at my medications and treatment. The comorbid conditions have really been firing up and since I had what they thought was a seizure in the hospital they have been trying to figure out whether it was caused by medications I was receiving or by a medical condition. So far a 24 hour eeg showed nothing - I just had one of the shorter in office eeg's so we'll see if that that shows anything. Like I've said before - status migrainous is a horrible place to be - so far we've had no true answers and we are still looking but I have to try and remain hopeful. Please keep me in your thoughts!
All the best -
Ian
Oh sweetie- what an awful time you are having. A random thought here, has anyone looked into an autoimmune disorder? Maybe putting all the puzzle pieces together...
Hang in there
Dear Nancy - at my next new neuro appt I will bring the autoimmune situation up. This neuro was literally a dinosaur. Cafergot? I mean that stuff doesn't touch my pain and switching me back from Keppra to Depakote ER. I was on Depakote five years ago and it stopped working after a year - he thought it had been long enough to switch back. I'm beginning to think Nancy that I need to take a nice day trip to Dallas to see Dr. Krusz. In fact I am thinking that it is my only hope. It's not covered by my ins but one does what one has to do. I've failed so many drugs - I know he will still have some ideas. Do you think it is a good idea - the only hard part is the long distance doctoring... Last time I went for treatment this time - just for the consult. Let me know if you think it is a good idea. I'm in so much pain I can't think straight. I hope you are as well as can be - at least the Lyrica is a keeper - it really helped the neuropathy tremendously. In all my years of Migraine nightmare it has been the only drug that has worked but unfortunately it's efficacy did not stretch over into migraine. I knew it wouldn't.
Take good care -
Ian
I think it certainly wouldn't hurt to have a consultation with Dr. Krusz. Maybe he can come up with a plan then you could find a local doctor to work with so you wouldn't have to travel all the time to Texas. Has anyone ever done an LP on you?
Believe it or not I don't know what an LP is - liver panel? I know they took a lot of blood from me today for a borage of tests including autoimmune - so often it has appeared in the past that I am a riddle without a rhyme. :-(
Thanks for your continuing thoughts and let me know what an LP is if i am wrong. My state ins program for self employed people is in trouble, keep your fingers crossed. Frankly? I need to be a disability for a while but that's such a hassle, so far gottta keep driving.
It's always so good to hear from you - it's time for some maxalt, a quiet room and some of my ipod's relaxation music -
thanks
Ian
Oh goodness Ian, I am so sorry about using LP instead of lumbar puncture/spinal tap. This is a test where they measure the cerebrospinal fluid that surrounds the spinal cord and brain. Intractable headache is just one of the symptoms of Idiopathic Intracranial Hypertension (IIH) formerly known as Pseudotumor Cerebri (PTC). It is more commonly found in women but men are known to have it. It certainly couldn't hurt to have that checked out at this point. Here is some information on it for you: Pseudotumor Cerebri (IIH) - The Basics.
Let me know what you think after you read that article.
Of course LP - yes I have had two - totally normal
Ummmmmm, then.