I have searched your site and I can not find any information on a cure or any material relating to Psuedo Tumor Cerebri (PTC).
I was wondering if there is any information you could give me about cures for PTC
Also, I would greatly appreciate a NEW forum with this topic, so myself and other suffers of this disease may come and share
information, and learn more from Dr. Schulze about this disease and its cure.
Most of the doctors do not know what causes this disease, have trouble diagnosing it, and the only solutions they have are
very harmful medications like diamox, lasix(sp?) and others in these families. Besides medicines they also like to put in shunts to
help reduce the intercranial pressure, this is not an option for me, I do NOT want something mechanical in my body. So, not
wanting to take the medication or have a shunt, the only option left has been to have several spinal taps, which are painful and end
up only giving temporary help along with a low pressure headache.
Anyway, sorry to ramble, just wanted to give some back ground and reasons why this request is important to me and many other
sufferers of this disease.
All the help and information will be GREATLY APPRECIATED!!!!!
I have the exact same problems you are expriencing and have had 7 spinal taps
to date, did you ever get a answer to your question? My new neurologist has told
me that the most severe headache that I am expriencing is from Brain Cramps
that is very under diagnoised and is only studied in Europe, treatment is with
physical therapy...I am interested in knowing what you have found out!
It was about two years ago when I was 20, when I would get dizzy and make nothing of it. A couple of months later I was in emergency with double vision and not able to stand. I went through the spinal taps and all. I went to one neurologist who didn't know what to make of it, the second was God's gift. I was on lasix and diamox(which I only stopped taking about 6 months ago)I feared the psuedo tumor would come back if I went off. I have suffered from migraines since I was a child, now I am on topomax for that. I get regular check ups and am currently doing well. I am of average weight, we are not sure what caused this. Since then I have dieted to fully eliminate that factor. Know that with will and determination there will be an end to it. Good luck!
I am 28 and was diagnosed with Psuedo Tumor about 2 months ago. And like you, I am not obese. Since then, I have tried Diamox which I could not take long due to side effects and have 4 taps, about to have another one this week. I was just wondering how many taps did you have? Reading your message made me feel a lot better!
I WAS DIAGONOSED WITH PSUEDO TUMOR CEREBRI 6YRS AGO.TILL LAST WEEK,I'VE HAD MY 11TH SPINAL TAP AND HAD OPTIC NERVE SHEATH FENESTRATION SURGERY DONE IN ONE I TO HELP WITH MY VISION LOSS.I'VE BEEN ON DIAMOX ON AND OFF AND SEVERAL OTHER MEDICATIONS.THE HEADACHES DO NOT STOP,AND I CAN BARELY HOLD MYSELF UP ANYMORE.IS THERE SOMETHING ELSE THAT I CAN DO TO HELP ME AT ALL.I JUST CAN'T TAKE THE PAIN ANYMORE.
I was almost depressed about my eyes before i read your message. I almost went into the dr. and agreed to a spinal tab.... I will not... I know that the cleansing will work. I will lose weight and watch what I eat......... God Bless everyone who is experiencing this awful thing. I woke up sunday morning and could not see... I went to Wells Eye in jeffereson Hospital where the doctors and nurses are the greatest......I had a mri done and blood work and could have lost my mind, but I held it together. In my right eye I have some blurriness and something in my line of vision but I'm not blind..... im going to see what the dr, says on thrusday, but I will take the natural approach......Im not going through several spinal tabs and brain pressure drainage procedures and all of those toxic meds. Now if you agree or disagree thats fine... I do not want anyone to follow my advice because i'm not a doctor...........................I am just thankful that i was able to read your stories and I nolonger feel alone...........Everything will be fine!!!!!!!!
I feel so badly for you, that you are still suffering so much with this headache. My son is facing the same thing - he's only 26 years old, is obese and has very bad teeth as a result of an antidepressant that a doctor prescribed for him years ago. This poor kid has never even had a life, and now he has THIS to deal with. He's also been suffering from a rare eye disease called birdshot retina..blahblahblah (can't remember the long name) since he was only 12. Anyway, for the past few days I gave him some of my Fioricet that my doctor prescribes for me due to frequent migraines. He called me about an hour after he took them and for once I could almost 'hear' him smiling on the other end! The Fioricet did take away the headache for a number of hours. The main ingredients in Fioricet are phenobarbital, caffeine and acetomenophen (Tylenol). If you haven't tried this, perhaps your doctor will let you try a few doses? Only problem with it is frequent usage can sometimes give you 'rebound headaches' - in other words, the headache relief can GIVE you a headache! I know it doesn't make sense, but what I do is try to stay away from taking it for at least a couple days, then I can take some again. In the meantime, I give myself my own 'cure' for migraines - maybe this will even help? Now, don't fall over laughing at my suggestion, please! What I do is to take out a bag of frozen corn and keep it on top of my head while I have heat around my neck. The 'cold' (corn) shrinks the swollen blood vessels in my head and draw them down towards my neck, where the heat is. I bought one of those microwavable 'pads' (don't know what else to call it!) that I bought at a flea market. It's stuffed with something like finely ground nut shells; I don't know exactly what's in it but I've seen 'recipes' on the net before in other places. You can make your own if you can't find one in the store. I microwave it for about a minute and a half and it stays warm for at least half an hour. The corn stays cold for a long time. I know you're wondering why I use corn - everyone does! I found that I can tolerate the weight of it better than an ice pack, plus the small kernels have better surface coverage than ice. I've used peas too - anything that is small and frozen will work. You can only use it once though, as refreezing makes it form into a big ice ball. I usually just wind up having to cook it that evening or the next day, plus I give alot of it to my birds (wild birds will enjoy this too!). I know it's a weird suggestion but it truly helps!!! It gives you a really strange sensation at first - it can even make you dizzy, so sit back in your recliner or prop yourself up on the couch so it stays put. Try to relax...in about 10-15 minutes you should see a difference. If I don't do this then my migraines will drive me crazy with pain - I'll start vomiting and the pain grows in intensity until sometimes I just pass out from it. Please do give it a try if you can, and let me know what happens. Best of luck to you.....