a really difficult time but a new doc to add a fresh look

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. 

Thanks for your kind comments - I'm still in the search for a good new doc - this one seems to be trying all the old tricks and even put me back on depakote er which caused my reflux to go crazy and now I have aspiration pneumonia and am back on all my old meds since changing was a disaster.  Now I have to cure the pneumonia which kept me up all night coughing so brought on a migraine to be sure. Yikes!  I know not to ask you how you are but hope that you are having as good a day as possible!

Take care and thank you again for keeping me in your prayers!

Best,

Ian

My doctor has put me on mirtazapine, now the 13th drug. It has changed my headaches. It might be worth a try. Have you tried topamax? I have been on it for almost 15 years now, no reflux. Are you on nexium or something for the reflux? Watch it carefully, can lead to other things. Frankly I would try another doctor if I were you, just ask him point blank if he thinks he can help or if he has run out of ideas. My last doctor told me he had and that he suggested I find a new doc. Hope you are feeling better by now. Headaches are bad enough, it really stinks when we have to add things on top of them.

Hi there thanks for the idea - mirtazpine is not covered with my ins - you can only imagine the fights I have had for the for Lyrica and Maxalt.  Things are really not good right not now so I am going to keep it short - was inthe ERmost of the night last night - they wanted to admit me through the ER but I an trying to hold on through the weekend - very hard.  It is easier to do a direct admit monday morning.  The cocktail they tried only had limited affect but they did try and were nice to me - we'll see how it goes -

warmly - in pain  -

Ian