I am seriously freaking out! In Feb. I started to get this positional headache. Horrible when standing up, but goes away when laying down. Went to a doctor and was told it was a migraine, given pills sent home. No relief...except when laying down. Went to my doctor and he said dehydrated, pumped me up with 3 liters saline solution, gave me pills and sent me home. Had a mri done of my head, it comes back unremarkable. (that's a good thing, I guess)I see my doctor again, I said I want to get off my meds to see if it helps. He says go ahead, don't think that's whats causing it, but if it makes you happy, you can try. He then said he thought my headache was anxiety related. I said, I don't think so, why would it go away when I lay down? He said I had orthostatic hypnotension and sent me to a cardiologist. The cardiologist said, are you feeling dizzy? I said no. He said see a neurologist if you have a headache.
So, I have taken myself off my cymbalta. It seemed like that helped. I had a constant neck and back pain, but headache seemed to be better. I have taken myself off of the trazodone.
Headache came back, so finally got my doctor to send me to a neurologist, a week and half before I had to go on a trip.
The neurologist did tests on me, and said that positional headaches are usually caused my csf leak in neck or spine..I was like, What? He also said that I had brisk reflexes in my knees, and was wondering what was causing it. So, decided to have an mri on my neck. Mri came back pretty normal. Have one bulging disk and military neck, but no obvious leaks or malformations.
So Tuesday afternoon, the day before I leave to go on a trip, he calls and says I have set you up to have a blood patch in one hour. Ok, to back track on that, he had put me on theophylline for 2 days but it made me very sick, then on prednisone for 3 days (I love it! Felt soooo good but didn't fix headache) after that he said, try caffeine up to 500ml before 5 a day, and we will schedule in for a blood patch to fix the csf leak in your spine. Caffeine helps so much, but causes me to be shakey and have anxiety attacks, but truly helps the headache. So, anyhow, he calls me up for this procedure the afternoon before my trip
and I get scared. Because I was leaving like very early the next day, and I am very sensitive to everything, so I was worried and reluctant, thinking how am I going to pack, or what if I have an adverse reaction to the procedure? Which requires one of those doctors that I can't spell but is the ones that put you out during surgery.
Sooo, the doctor says well, if you are not completely confident lets cancel it, I said I just don't know. He said, well, if you are not lying about your symptoms, you have a csf leak and this is all there is to fix it. But go on your trip and drink lots of caffeine.
Went on my trip, had a good time, except for the need for constant coffee and the crippling headache and fatigue.
Now, I am home and call the doctor to get the procedure, and get the run around. the receptionist is like well, he worked very hard to get you that appointment last time and you cancelled so....I have been home a week and a half!
Here is where the real freak out starts! My grandfather had a genetic ataxia disordor that starts with gait problems and involved the cerebellum. Since I have been back from my trip, I have been losing my balance, and lacking coordination. Of course I am jacked up on caffeine and my head and neck are so stiff that I can't turn them , and my ears are plugged. But I started thinking about this ataxia thing that starts in you 30s (35 here)...one sign can be extra brisk reflexes...and now I am freaking out...convinced that I have the beginning of ataxia. I called my cousin and she seems to remember my grandpa having to lay down alot because of headaches!!!!And I keep choking on stuff...another sign...
my husband says to stop ocd-ing about it, get the patch, see how that helps, if you have this other thing, deal with it when the time comes.
I am having body pain and brain fog (fibro stuff that seems sinister all of a sudden)
I CANT STOP THE FREAK OUT!!
Good news is that my family doctor (who has never heard of spontaneous leaking of spinal fluid) called the one special doctor that starts with an a and they have called me and are trying to get me that procedure as quickly as possible. So now the neurologist with the god complex will be mad that we went behind his back to get this procedure done.
I have told myself today that-your mri was unremarkable, and your brisk reflexes could be because of the bulging disk in your neck, and the lack of coordination and balance is fibro related...and your ears are plugged!
OKAY. Thank you for letting me freak out. I have been freaking out to all my friends, but they don't have fibro, so they don't understand.
Man, I am already trying to decided between a cane and a walker. maybe one of those hovercrafts or rascals!...help, need this problem fixed...maybe then can go back on cymbalta and get off caffeine...