Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I am losing my mind. I have had this non-stop 24/7 headache that has gradually gotten worse since February. I wasn't diagnosed with IIH until May, and since then it has just gotten worse and worse and I seriously cannot take it anymore.
When I was first diagnosed the dr's. main concern was my vision because my optic nerves were very swollen and they were very concerned I was going to go blind because I was already seeing everything double and blurry and my field tests were terrible, but as far as my eyes are concerned, they responded great to diamox and are wonderful now with only minimal vision loss and so they are no longer a concern, but I am still left with a worsening headache.
My headache never goes away, it is the same when I am standing up or lying down, it gets worse in the evening, nothing seems to make it better, and it is ruining my life. Since May I have literally only left my house to go to Dr's appointments or when I have been admitted to the hospital. I have had 3 LP's with opening pressures of 47, 27, and 25.5. I am not a candidate for a VP shunt because my ventricles are too small and I had a cerebral angiogram last week that determined I am not a candidate for stents either.
I currently take Diamox 2000mg, topamax 100mg, and was also just put on lasix 40mg. I am a university student and am so stressed out about how I will be able to go back to school in the fall, because right now I just don't see how it will be possible. I can't focus at all and I am in so much pain.
I am just so lost on what to do.
When I was first diagnosed the dr's. main concern was my vision because my optic nerves were very swollen and they were very concerned I was going to go blind because I was already seeing everything double and blurry and my field tests were terrible, but as far as my eyes are concerned, they responded great to diamox and are wonderful now with only minimal vision loss and so they are no longer a concern, but I am still left with a worsening headache.
My headache never goes away, it is the same when I am standing up or lying down, it gets worse in the evening, nothing seems to make it better, and it is ruining my life. Since May I have literally only left my house to go to Dr's appointments or when I have been admitted to the hospital. I have had 3 LP's with opening pressures of 47, 27, and 25.5. I am not a candidate for a VP shunt because my ventricles are too small and I had a cerebral angiogram last week that determined I am not a candidate for stents either.
I currently take Diamox 2000mg, topamax 100mg, and was also just put on lasix 40mg. I am a university student and am so stressed out about how I will be able to go back to school in the fall, because right now I just don't see how it will be possible. I can't focus at all and I am in so much pain.
I am just so lost on what to do.
I am so very sorry you are going through all this.
My previous record for my personal worst headache was a month at a "10". I've also gone through months on end with no break with headaches that range from 1-10.
I have a few thoughts for you.
I've seen posts from people in here who still have headaches at a pressure of 18-25 or so. I'm one of them. Everyone's "normal" is different. All the literature gives guidelines of 20+ ir 25+ but I think everyone is an individual. Also, the headaches could be IH, or could be something else.
Headaches can actually be a side effect of Diamox. Topamax also lists headache as a side effect. Here's the link to the NIH site that has the latest official package insert for Diamox:
http://dailymed.nlm.nih.gov/dailymed/lookup.cfm?setid=acbd120b-c517-4acd-9fe9-04d8ae7465dc
On three diuretics you may be getting dehydrated. Being a little dehydrated helps my headaches, but being too much so can give you a headache. I know I'm dehydrated when my lips get chapped. Here are the symptoms of dehydration.
http://www.mayoclinic.com/health/dehydration/DS00561/DSECTION=symptoms
A majority of people suffer from more than one kind of headaches - IH headaches, migraine headaches, cluster headaches, etc. I have IH headaches and migraines. The Topamax should help prevent migraines. Works for some, not for others. Here's a couple of links to types of headaches. It might help you identify yours.
http://en.wikipedia.org/wiki/Headach
http://www.headachemag.org/HeadacheTypes
http://typesofheadaches.net/
The time I had a "10" for over a month it was stopped with Prednisone. Nasty drug. You can't take it often in your lifetime, but boy did it work for me. Counting time on full-strength and time weaning off of it, I had a month that was completely headache free. It was amazing.
my story:
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now
Sophiasmom- No I haven't had a neck MRV, just a few MRI's of the brain and the cerebral angiogram.
When I was last admitted to the hospital the drs there put me on elavil and when I went back to my normal neuro they had me stop taking it immediately because it "might" make me gain a few pounds.
So they won't give me medications that may help me because of possible weight gain, but at the same time are keeping me in a position that is making it very difficult and painful to keep active to lose weight and really just functional.