Looks like we may have a dx....

[Snugelbear]

Well I went to London yesterday to see a neuro opthomologist, had a spinal tap with an opening pressure of 28.  I have been strated on acetazolamide four times a day.  Look like I have IIH idiopathic intercranial hypertension.  The MRI \ MRV on Saturday will tell us if there are any tumors, or blockages and if the medication does not bring down the pressure in my skull then I will have to have a shunt to drain off the fluid.  Thank you everyone for your support over the last 9 months I really do appreciate it.  Now I am off to find more information on IIH

cheers
Tracy

[Snugelbear]

Well today is day 5 after the LP, I have spent 5 days since the LP in and out of local ER's no one wanted to touch it.  The day after the LP I had an excruciating headache they said was not LP related, gave me some drugs and sent me home, however the next day I noticed that when I lay down the headache would ease and my neck was stiff, back to the ER ( as was instructed by the original doc from the ER on Thursday)  Spent 7 hours in agongy and not seen by a doc, had to leave because I had my MRI booked for 7 am and I could not miss it.  Saturday night comes back into the ER can not take not even being able to be upright long enough to go pee.  HE gives me some medicine and tells me to come back Sunday morning that the anethesitest will do a blood patch.  Back in Sunday morning @8 at 2pm I have a blood patch done and my head feels better........finally, now this morning I wake up with another headache, not as bad mind you but a headache none the less.  My back is killing me from the patch.

Mommies:  Thank  you so much for sharing you have IIH, it has been tough to find anyone around.  I am on acetazolomide 250mg x 4 tmes a day.  Definatly have the side effects of taste and numb feet and hands, it *****!!  Go back for follow up with the Neuro/Opthomologist on Thursday.  This oughta be interesting.

Binx:  Thank you for the blessings it really means a lot to me.

JibJen:  Thank you for the best wishes.  I will do my best to keep you all updated.

Next big problem. Loose weight! they say that this disease gets women during child bearing years who are in a period of weight gain.  Great!!  I have struggeled with my weight my whole life!  Why shouldn't I have do now when it means the difference between surgery for a shunt or just medication.  I like the just medication option thanks.

Hugs to all

Tracy

[illinwithoutacause]

dear tracy,

thank you for letting us know about your diagnosis.  i hope you are now able to get proper care and treatment, and ultimately some relief from your symptoms.

please do check in and let us know how you're doing.

blessings,
binx

[mommies4]

Hi Snugle,

  I also take Acetazolzmide,I take 250 mg 2x a day. I share the same DX as you.
This Awesome eye doc payed me a visit,while I had a 6 day stay in the Hospital
back in April of this year . I have been dealing with this for a few months now !
As long as you dont stop that med you should be OK .. Soda is flat to the taste
so it does effect your taste buds horribly.Also I do have alot of side effects,numbing
of both hands,not just the finger tips and pins and needles all over both feet.However,
it did take the headaches away and that was the biggest problem,26 day headaches
were for the birds as they say,I also had alot of pressure behind my right eye,it would
hurt to even move my eyes side to side..I do also have something else going on that the Dr.s can't figure out .I live in cronic pain daily.I do beleave the cronic pain is entirely different from my  ( IIH ) Just this week my Neuro witch I think has lost his mind desided

to take my off the Acetazolamide.He said to me he thought it was causing my cronic pain,BOY was he ever Wrong !! I knew this walking out of his office that day last week !
so I called the eye doc he has been keeping a close tab on me and my eyesand he said on Monday AM this week ,( no go ahead listen to the Neuro he is a good one ) !!
I  have to ? him !!    WELL it only took 2 1/2 days WEDS. AM at 6;00 I sat stright out of bed with that HORRIBLE ( IIH ) NO,NO,I said its back,so i called the neuro,he tells me to call the i doc and to see what he wants to do !! So this coming Monday AM at 9
I go to my Eye doc Who is really the only one i feel like i can trust right now,And he is gonna increase the med I guess thats the next step ! HE has been following me tracking my eye pressure ,also I have my 2nd field test on Mon. to check the blind
spots in my eye.I guess the biggest thing is loosing my vision in 1 or both eyes.
    If you have any ?s please feel free to ask me.I may or may not be able to help answe?s  for you ..           thank you for sharing that I have been looking for someone
with ( iih )  to explore ....    good luck to you      mommies4

[jibjen]

Hi,

I just wanted to say that my thoughts are with you and although i am not familiar wih the diagnosis..I hope that medications will work for you..Please let us know your results and know we are thinking of you and sending you best wishes...

JibJen