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.....
I am sorry to bother you, I had a tenant that came in my office today, and confessed to us that her daughter had a psuedo tumor. She has gone to alot of doctors in Texas, basically they told her that she is a case study because the Diamox and other drugs are not working. She is fine one momment and progressing and then later on she is rushed to the emergiency room. She knows she will have continusly have to have spinal taps and drainage done, all I need to know is there anything that can be done for her and her 13 year old child or will this go on for the rest of her life all the pocken and surgery. Is that what will keep her alive. I feel so sad for her but she is a single parent and all she feel she has left to live for is her daughter. Please help, if there is any advise you can give us it will be so much grateful.
I was wondering if you could give me some advice...my son was recently diagnosed (2 days ago) - he's only 26 years old and scared to death. Can you please tell me what it's like to get a spinal block - spare me no details, I want to know so I can be supportive in the right way (and he won't be reading this). Also, what about the surgeries, and the shunt - what is that like and how much relief does a person get? Will he EVER get better? He's also very overweight and has terrible dental problems. He's currently suffering from headaches and has totally lost his vision for an hour at a clip, and in between he can barely see at all. I don't know what to do, where to go, how to help him. Does he have any chance to be able to live a 'normal' life?
I don't know why I decided to leave a message in this forum, since I have no personal experience with pseudotumor, but I have some thoughts on it. I do transcription for ophthalmologists and run across letters on pseudotumor patients occasionally, so I know some of the symptoms. Ususlly the patients are overweight, but I have heard that it not always the case. I began seeing an upper cervical chiropractor about 7 or 8 years ago that absolutely changed my life - this method relieves brain stem pressure, and I have been getting regular craniosacral therapy to work with the rhythm of the cerebrospinal fluid and balance the cranial bones, etc. I can't help but wonder whether pseudotumor patients have massive brain stem pressure and would benefit from an atlas adjusment within this "straight chiropractic" (upper cervical ONLY) protocol, along with craniosacral therapy. It sounds like a serious condition, and I am obviously NOT a doctor, but if this idea could be of any help in your search, I will try to answer any questions just from my personal experience. There are very few chiropractors in the country practicing this "Blair method," especially combined with cranioscral therapy with the reverence and incredible intuition that my doctor does, but I'm sure you could find someone through Sherman College that practices the upper cervical method.
I believe that the shunt should provide your son with immediate relief. The biggest problem with the shunt's is that they do not last long. I have had 4 in 4 years. But when they are funtioning I have a normal life. Once the shunt fails my symptoms return very quickly and I have to get the shunt replaced. I have it down to a Science now and have even had the shunt surguries done as an outpatient procedure. When I had the first one put in I was in the hospital for a week. I have had this condition for 5 years now and it was originally brought on by a reaction to tetracycline.
Thank you, Leslie, for your post! My son is very afraid of having a shunt - can you tell me what the surgery is like, and how painful it is? How long does it take you to recover after your surgery? Any information you could share would be *greatly* appreciated!
Thank you, and may you always continue to have good results...
I know its hard to see that your
son is suffering. But have faith
and keep on praying. Maybe someday
your son will be healed from his
illness. Just let him undergo brain shunt so that he'll live a
Im 18 yrs old and have had PTC for 2 years now, first of all, your son needs to be on a healthy diet, being overweight, eating salty foods, doesn't help at all! I also experienced double vision, then lost it....now I am better, I have had countless spinal taps and they are very painful, but its worth it once you've had them because the pressure you experience in your head is such a relief after you've had the spinal tap, don't worry about a shunt right now because there are soo many other things the doctors can try with your son first, if he is on any acne medication, you need to get him off of that immediately, or anything that has a high dosage of vitamin A in it, diamox is what helped me, and the spinal taps! It will be okay, it does get better!
Hi my girlfriend has ptc and it has gotten worse... i myself am still learning more about this she is very scared and so am i, so i have been trying to do some research as far a surgeries go. I live in california...and i was hoping that someone out there would help me in possably finding out or recommending any doctors or does any one know if some one has had the surgery... thanks michele... i want to help my girl as much as i can...
I have suffered from these headaches most of my life I am 35 now! I was originally diagnosed with migranes and depression of course I was depressed with headaches that nobody could help me with and Dr.s thinking I was just out for drugs and being in pain all the time I have had almost 30 spinal taps! It's amazing how fast the pain goes down with them! I was finally dignosed with this about 6 years ago nobody knew what to do for them I switched DR. because of med insurace changes and so I had to go through with the Dr.s not knowing anything but I was also put on Diamox and at first it did not help but the Dr. told me to take a double dose of it and I have not had a major headache since then but I don't take it daily just at the onset and maybe the next day depending on how I feel! I hate Diamox but my step mother has a shunt and it is plugged and they say they can't remove it or fix it or replace it so she suffers constantly! That I know of there is no cure and it is hereditary I have a 17 year old whom also suffers from these and my father does also but he thinks has vertigo and refuses to take the Diamox perscription he was given he says it ruins everything he eats or drinks I think it does too but mostly I can't have anything carbonated! But I feel so much better taking it than when I didn't maybe we can talk some time please
I have been having these problems pressure in my head and at times it seems to need to blow up and it would feel better. I also ended up with high bloodpressure and thought it was that Dr. has thought migrains depression meds just to see if it helps eyes blurr up and vision seems to be getting worse.I just feel awful all the time. Have not been diagnosed with anything yet just trying to learn to live with it. Is this ptc and what have you learned,I only read your problems and only found this sight today. I would not want a shunt or half way fix with meds that don,t work what does.
I'm a 35 y/o female diagnosed with pseudotumor cerebri in may this year. I had a constant headache for about 3 weeks and ALOT of visual problems, as well as hypertension that came out of no where. I was put on 1,000 milligrams of diamox and am doing really well with that, only the tingling feet and hands off and on throughout the day. My question is, Does anyone know for certain whether or not this is hereditary? I have an 11 y/o daughter that has had a diagnosis of "migraines" since she was 7 y/o, we've tried all the meds for childhood migraines, and also the allergy route has been done, MRI's show up negative, and she complains of a daily headache that is worse with increased activity, heat, etc. she already wears glasses and still has the visual problems.....any help would be great, I'm at a loss, and I don't want her doctor to think I've finally gone off the deep end...
I have battled this disease for over 19 years now. I have had my my optic nerves decompressed twice in both eyes I have had optic nerve sheaths implanted in both eyes twice already and PTC just kept coming back. I finally gave in and had a Ventricular Peritineal Shunt put in and it has been working and correcting my headaches along with my vision for over 7 Years now. Anyone that is doubtfull or skeptical about a VP shunt being put in your body, dont hesitate if this is your only option. Believe me I truly do not want this in my body but I have run out of options. On top of suffering from PTC I also suffer from Retinitis Pigmentosa.
Hello everyone...I am a 38 year old woman who has been fighting this illness for 7 years now. I still get spinal taps that only gives me relief for 3 days, had the VP Shunt put in 4 years ago, have had 4 surgeries now because the shunt keeps clogging, and they want me to have a fifth surgery that I now have put off for three years because I'm tired of all the sticking and prying...My headaches are worse, my neck and shoulders keep pain, eyes hurt daily due to sensitivity to light, ringing in ears, and blurred vision off and on...The doctors just keep sending me to other specialists cause they tell me there's nothing else they can do...I have been on 30mg morphine for three years straight every three to four hours but took myself off because my immune system became immunned to the pain medication, diamox three times daily 750mg, elavil to help me sleep because of the pains 100mg, lyrica but had an allergic reaction, neurotin three times daily 300mg but had an allergic reaction for muscle spasms in my legs,pot chloride tab 20MEQ daily=1 tab....I continue to have these pains and don't know what to do anymore.
When I was diagnosed with this condition my cranial pressure was so high I was in a coma and it is the most frightening thing i have ever had to come to terms with.
I have had 64 Spinal Taps/Lumbarpunctures and I am only 19. As well as this I am not overweight or was I on the pill when I was first diagnosed with the condition.
I was on steroids and other medications to try and combat the damage to my eyes as the condition had actually made me completely blind in my left eye and partially so in my right. However, I am now living my life as a 'normal person', if there is such a thing!
The best thing I found to combat the fatigue, the deafness, the blindness and the feeling that I was not actually alive is to loose weight. I stuck to a fruit and veg only diet for a while, to be honest though feeling as I did I didn't want to eat anyway. I was not overweight but it still worked. I found a dairy free diet helped with the migraines as well.
Unfortunately the spinal taps have damaged my back so I now see an osteopath but I am still unable to excercise due to the pain. I have had the condition for four years now and everyday it gets a little bit easier and a little less scary. Yes it will never completely go and the migraines often come back and my sight gets blurry agin but I have only missed 15 days off College/Work in the last two years.
For all those out there.... take a deep breath, it will get easier. If anyone wants any directly personal advice fel free to contact me as I have been through it all and had numerous arguments with doctors about what I thought was best in comparison to what they felt. Remember they may have the medical experience but you know your body better than them, don't let them boss you around, instead listen and discuss ideas and options.
I have the same condition and I am 22 and NOT over weigth. I would like to discuss some of my concerns with someone who actually knows what I go through. Please feel free to email me @ SRivera8221@yahoo.com
Hello to all.
I have recently been diagnosed and I am very scared. I have heard so many good stories then so many bad. My doctor claims if I lose the weight it should only last about a year. I am over weight. any information you may have will be very helpful in my research. I do not know whick way to turn. I have had one spinal tap, one MRI, and one Cat Scan. I an currenly taking medication and trying to lose the weight. I have never felt head aches like this in my life.
If any one knows of anything that good or bad please email me at firstname.lastname@example.org would greatly appreciate the information.
I am a young overweight woman. I was diagnosed with PTC a few weeks ago, after going to an ophthalmologist for a large floater in my left eye. They had me see a Nero Ophthalmologist, who suggested getting a spinal tap. The ST was very painful and did not heal. The spinal fluid was leaking and I was stuck on my back for two days. If I stood up I would an spinal headache instantly. It was the worst pain I have ever felt! I had to go back to the hospital for a blood patch. I am never getting a spinal tap again! Since getting the ST and blood patch the head aches have gone away but I am still having issues with my vision. My doctor prescribed diamox which I have started taking, but I do not want to be on this medicine forever. I believe that this can be cured with a healthy and nutritious diet. Since then, I have bought a Nutribullet and started juicing vegetables and fruit for every meal. It has only been 5 days and I have already lost 5 lbs! I feel a lot better and my vision seems to be improving. I also watched a lot of documentaries about healthy living. I watched an inspiring documentary called "Fat Sick and Nearly Dead." It was about a 41 year old man with a rare skin disease. He had been taking medicine for nine years! He was also overweight and was at risk of a heart attack. He documented a 60 day juicing cleanse and completely healed himself of this disease. I believe our bodies have the power to heal themselves! I am going to try this out and see if my vision improves. Hopefully one day I will have this resolved.