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...
Hello. I was recently diagnosed with Pseudotumor Cerebri after a 10 day stint in the hospital, several MRI's, 2 lumbar punctures several eye exams and a lot of infiltrated IV's. I believe that I have suffered from IIH for the past year and a half. However, even upon urging my neurologist and GP that something was definitely different....wrong, I was ignored. Over the past year, I initially began having the "whooshing" in my left ear. I would hear that sound every day and night for the next eight months non-stop. Then I felt the head pressure and eye pressure....like my head was in a vice. Usually, dizzy spells would come along with that. Then I began having seizure like symptoms including daily muscle spasms. I also suffered from memory problems and was extremely fatigued all the time. Still, my neurologist saw no need to investigate. (I was already dealing with the diagnosis of hemiplegic migraines...and still am.) Then about 4 weeks ago out of nowhere I pulled a muscle in my neck/shoulder and was taken to the ER for care. (Later I found out that the excess CSF from IIH can leak into your neck/shoulder muscles which is what causes that muscle pull sensation). Yet, again, I was rushed to the ER with extreme pain for what turned out to be the pseudotumor diagnosis. While in the hospital, I was unable to use the restroom on my own as the sensation to go was gone completely. (Temporary damage due to one of the LP's I think.) I have since gotten this sensation back. I am on 1500 mg. of Diamox a day while tapering off of a steroid medication they put me on while in the hospital. Problem is, while the pressure seems better, I feel worse than ever. I can barely get out of bed. Today just taking a shower was more than I could do as I could barely lift the wash cloth to my body. I feel like the whole left side of my body is weak and numb...which could be due to the hemiplegic migraines I have. I am only 39 y/o, I am 5'8" and weigh 190 pds. Obviously, the easiest way to reverse this disease would be to lose weight, but, if I can't even move out of bed I can't imagine this to be an easy task. Has anyone else had this problem with Diamox? I also feel like I have a Urinary Tract Infection and like my blood sugar is low all the time....anyone else have these symptoms? I am supposed to see my neuro-opthalmologist tomorrow and would appreciate any advice you have to offer. Thank you.
There are many of us that do not tolerate Diamox well and I have heard others say that it robs them of all their energy. I take 1500 mg too but ramped up over months to get that high which I think really helped my body adjust to the Diamox effects. I can only imagine starting at 1500. What was the opening pressure of you 2 LPs? Must be pretty high to start off with such a high Diamox dosage. Are you taking Sequels (extended release)? Maybe talk to your doctor about reduceing dosage until your body adjusts??
Many of us also have neck pains to various degrees. I had not heard about the CSF leaking out to be a cause but never really thought about that either.
Good luck with the Dr. apt. and welcome to the group.
TJ
All my opening P's have been between 25 and 30 so 1500 sound consistant with waht wroks for me but we are all different. For what it is worth I ramped up 250 mg every 10 days and seemed to do ok.
I was reading some of your input on other discussions as well and find you to be very knowledgeable and helpful. I can tell you that after skipping my usual afternoon dose of Diamox today I felt better! Unfortunately, that UTI I had mentioned before has gone into full blown assault and I am suffering some misery with that now. Do you know if Diamox as a "diuretic" can cause this type of infection? Furthermore, I have noticed a rash that has begun breaking out all over my body of small red bumps...from the Diamox?
I also found it interesting that in another entry you mentioned that weight doesn't really have as much to do with this disease as the doctors say it does. Is that true?
How has upping potassium helped you? I have found that I have had a mean craving for bananas over the past couple of days.
I really hope that I don't have to go off of the Diamox because it seems to help and I haven't read anything anywhere about the shunt surgery that sounds promising. I realize that some doctors prescribe Topamax as well, but I have had reactions to this in the past also.
How old are you and when were you diagnosed? Just curious.
Yes a rash could be a reaction to Diamox. Do you have any sulfur allergies? Dont know about other infection related issues.
Weight: not sure which post you read but I recently wrote one about losing weight to someone (Jazzy I think) that only had an opening pressure of 13 or 15. In that case it does not make sense to me how weight loss could be a benefit. However, if you are overweight and have opening pressures above 25 then I am a believer in weight loss but yet have read that it does not always work. Krystal (absent for a while) is living proof that is can. She lost 25 lbs in 3 month and her PTC went in to remission. Yeah for Krystal where ever you are!
Potassium: keeps me from getting metabolic acidosis-nasty stuff. If you havent already done so I would have your potassium level checked once you finalize dosage.
Shunts are last ditch effort. Try all meds first as many do well and keep thing tolerable with meds. For me I have tried all the meds and nothings is working. I am running out of options.
I have had a HA 24/7 since Aug 07. Dx IIH in April 08 at the ripe old age of 48.
Hope this helps.
TJ
I'm sorry you are going through so much, and on top of the PTC having hemiplegic migraines. I too became a freqeunt flyer at the ER. Diamox made me so tired (I wrote you about it in your other post), dry heave, have stomach pain and become so dehydrated that I was told to drink 4 liters of water a day! Which makes me wonder if your UTI is from being dehydrated. But it did make me loose weight, though I'm not considered overweight. My Dr. told me that 80% of people with PTC who lose 20% of their weight get rid of their PTC. Of course, how are you supposed to lose weight when you feel like crap? They must have brushed up against one of your nerves during the LP since I had that happen and they kept asking me if I was voiding okay, I think that was at level L2-3. Anyway, I hope they can get your diamox level at a dose you can tolerate and you start to feel better! Jazzy
I have been lucky that I haven't lost the my stomache contents yet. Although I will say it does make me a little nauseous. I am very thirsty all the time, but even that doesn't seem to help. In addition, this evening the pressure has started to return. Possibly from cutting back on the Diamox???? Also, has anyone had any problems with their gall bladder while on this med? I have been experiencing some achiness in my upper right back/shoulder all evening that would be consistent with a gall bladder flare up. Just curious.
Thanks. MM3
At first I thought maybe you were standing on your head or swinging from your tail. Then I sought the advice of my trusted colleague Mr. Wikipedia and low and behold that damn gallbladder is quite high in the old digestive system. So being that you are the only one here who even knows where the gallbladder is I would imagine that is why we all scratched our heads and did not reply to this post. For me the answer is definitely no. Never experienced that pain or pain in that area.
I am still trying to get to the bottom of you comment about neck pain and CSF leaks. Had meant to review that at NS apt yesterday but did not get that far. Where did you learn that good little trivia answer?
TJ
Just wanted to share a past recent experience of mine about this time last year, I sharted having those same pains you described... My Dr. took a chest xray and told me I had the being begging stages of walking pneumonia game me some meds. A couple days later it moved to my stomach and I was on the floor at work it hurt so bad, they took me to the ER... Come to find out I had got pancreitis from a z-pack antibotic I was give for strep throat.
What I am getting at is if it does not go away go get it check cause meds can cause pancreatis (which is next to your gallballer and produce the same symtoms)! It took a good Dr. in the hospitial to figure out why I got it. The ER Dr. couldn't understand and was confused since I don't drink.
I know can't eat certian foods or I will be in stomach pain... Now a year later I am hear with all these headaches!!!!!
Best of luck to you!
ronron
I realize by now you've probably seen the doctor, but I wanted to share with you my experience. When I was diagnosed, I was prescribed Diamox, Topamax, and Lasix. It completely knocked me out. I had to sit in the middle of the shower to get through it. After a week and a half, I began to function a little better, but began to notice little itchy red bumps on my arms. Come to find out, I'm allergic to Topamax. My Doc replaced it with Zonogran and I'm getting around much better, but still working on dosage because it's not taking care of HA like Topamax did. My friend has seizures and told me Topamax is often not tolerated well.
Hope it helps... good luck!
I am curious what you mean by "perfect tap"? Do you mean it went well or your pressure is down or???
As for Diamox, I think there might be someone here at 2000 but that is getting up there. I have heard of some going as high as 4000 but that is very rare. As I understand it you need to start being careful to avoid metabolic acidosis if you go too high and also monitor potassium levels. My neuro stopped me at 1500 based on blood results. My potassium is ok as I take 20 MEQ per day in suppliments but I guess my CO2 is a little out of range which is why he stopped me.
Hope this helps.
TJ
IHRF Ambassador
Maybe our stars are lined up together over the original Buffalo Wings bar about 70 miles west of you as I am feeling better today too (still rough nights though).
I'll keep my fingers crossed for you. Sorry I'll have to defer the rash question to someone else.
TJ