Chapter Six -
From the Mouth of the Experienced...
Through letters, phone calls, and postings on the Internet, we gather useful tips and information from people that live with PTC.
Please keep in mind that much of this information is anecdotal findings, meaning that information is based upon common experiences, but not verified by medical research, etc.
Here's a few things of interest:
·A number of PTCers have career backgrounds in nursing and teaching (often described as "helping" or nurturing professions).
·Several people have reported having arachnoid or pineal cysts, something that the medical professions have said is unrelated to PTC (but frequent enough to make a person wonder).
·A good number of people have reported having a history of sinus problems prior to getting PTC.
·Regarding a tyramine-free diet: some people say the diet helps, others aren't so sure. Tyramine is an amino acid. To follow a tyramine-free diet (with a goal of reducing cerebrospinal fluid and thereby pressure), avoid all foods that are aged, canned, pickled or cured. Examples are processed meats and cheeses.
·A physician told one patient to not drink carbonated beverages. These contain a lot of sodium (salt), which can cause your body to retain fluids.
·Regarding spinal taps: drink lots of Gatorade after having one. The fluid and the electrolytes in the beverage help minimize after-effects.
·Another spinal tap tip: insist on laying flat for an hour after the procedure. This will minimize a spinal headache.
·Avoid vitamin supplements, particularly Vitamin A. Also avoid eating liver and carrots (high vitamin A content).
·Patients report good things about using the drug Depakote (originally used for seizure disorders).
·There is a new shunt available with what is called a 'Smart Valve" (Codman Hakim shunt). It was approved by the FDA in the Fall of '98 and the valve opening can be adjusted using a magnet outside the body.
PTC Comments
Do you think you're alone? Wonder if others have the symptoms you have? Want to know tips or ways to cope?
Following is a listing of comments from PTC people- patients, family members, physicians and others who care. We hope this information offers comfort, support, and hopefully... help.
FYI....General Feedback
"My main problem is pulsatile tinnitus...it leaves me stressed out to the max!"
"I'm tired of being treated as though I have a 'benign' illness. The headaches are debilitating; although my neurologist doesn't think so."
"I find your newsletter to be informative, as well as comforting to know there are others who can relate to the pain I have."
"I have to move s-l-o-w-l-y."
"I am upset that my condition had recurred after 19 years of remission."
"Very glad to see your newsletter going out. You do feel so alone with this disease."
"I live with my head and back pain but work full-time, have raised two sons and do the best I can by taking each day and living it as if it were my last."
"I find the hardest thing with this condition is you don't look sick (other than a lot of squinting). The worse my headache is, the harder it is to formulate thoughts and finish sentences."
"I just go day by day and I do enjoy the quiet times. I've learned to love life at a slow pace....When it rains or it's cloudy I'm off-balance."
"The mental confusion bothers me. I'm unable to do simple automatic tasks easily, such as bills, makeup, or the checkbook. I can only focus on one thing at a time."
"I'm just wondering if anyone has found any connection between the ptc pressure and problems or growths in the sinuses? I have a large polyp (whatever that is...) in one of my sinuses and I'm wondering if it is contributing to the my pressure problems."
"Thank you for the informative newsletter! I was only recently diagnosed with PTC and it is comforting to hear about others with the same struggles."
"I'm interested in knowing if anyone has family members with PTC as well. I was diagnosed in 1994; one year later, my older sister was diagnosed. My doctor has not heard of two direct family members having this disease."
" My daughter (16 years old) is having a rough time dealing with the fatigue that goes along with this disease. I would be interested to know if anyone is taking something useful."
"I have problems with being passed from doctor to doctor. No one wants to treat or take any responsibility."
"Thank you for 'keeping in touch.' I appreciate all the efforts I know go into this.."
"Just trying to explain this disease to other people is really difficult."
"Will they ever find an answer to what causes this disease?"
"This condition has put a tremendous strain on my family, both financial and emotional. Our faith in God is what keeps us going and looking forward. We believe someday all the answers will be found."
FYI....Oddities
"Yes, I also have the pain in my ears. I woke around 3 am this morning with my ear hurting. When I went back to bed I tried to make sure I laid the other way. I think it does help. Maybe the fluid doesn't build up behind that ear drum when I change positions."
"I was just wondering if it is me or if the group is having weird cravings. I have been craving sour things almost for 3 yrs. now. I crave lemons, sour pickles (not dill, but sour) cucumbers and vinegar, things like this. I can not get enough of these things."
"Yes, the bear meat question is one of the old ones they used to ask....specifically polar bear meat. I have no idea where they got that one!" (note: there is a high amount of vitamin A)
"...my son does have another shunt that was put in 8 years ago for an arachnoid cyst but we were told it has nothing to do with this. Since then we have found some reference to it."
"I too have an arachnoid cyst. My doctor told me it has nothing to do with my condition or headaches. The funny thing is that it's exactly where I hold my head when I have a headache. Does anyone else have this cyst?"
"No arachnoid cyst....but I have a pineal cyst in my head....doc told me that it's unrelated to ptc too. Hmmmmm....."
"Back in 1989 the neurologist found a small ovoid cyst (3x5mm) that was determined to be an arachnoid cyst filled with CSF. It comes and goes on each MRI, doctors have not done anything to drain it. They have never seem worried though it has disturbed my psyche over the years."
" I have a sub-arachnoid cyst on the right side of my head....."
FYI...Symptoms
"I have memory problems; at times I can't remember my phone number and address. Writing and spelling are also difficult."
"Just one question. Does anyone question their spelling since having PTC? My son complains about having to look up the words and finding out he was right; they just don't look right."
"I do not have trouble with my spelling, however, I do reverse letters and numbers completely backwards from the way I read them or from the way they are called out to me. For example, as I am typing I might type the word trouble- elbuort."
"Just for a quick reference- PTC and migraines have been shown to co-exist together. Actually studies in 1996/97 show that a high percentage of people with migraines have PTC with no eye involvement."
"I am on diamox. Has anyone experienced a change in personality? I am quite impatient now."
"I think what does get to me the most is the memory thing. These are bouts of what seem like blackouts to me, with me being wide awake, so that I or no one else even knows that I don't know what is going on. I too find it hard on the spelling now, I used to be a fantastic speller..."
"Here is a thought for all. Loss of memory and overwired brains are a daily occurrence in the average world. 20/20 did a show showing the average normal American has noticeable memory loss for such things as names, spelling, recalling conversations from a few seconds ago, etc. It seems our now wired, over-processed minds have become unable to process the where, when and whats required by today's rapid-paced world."
FYI... Treatments
"Spinal monitoring is when they put a tube in your head with a gauge to tell how high the pressure goes and when it's high. (This procedure can determine if a shunt is working.) For this you have to stay in the hospital."
"my last neurologist prescribed a 12 hour release pain pill that I have to admit really seems to give me the MOST relief. I just wanted to share this with everyone because I know what it is like to have pain medications and have them not really make a difference. Unfortunately, this is also one of those prescriptions that cannot be called into the pharmacy, it has to be written out and picked up at the doctors office (or mailed) and has no refills. I hope everyone is as lucky to find a fantastic neurologist like I have (he was my 3rd one). "he prescription is called OXYCONTIN, from what I understand it is relatively new. Like I said before, I've had quite a variety prescribed for me before, including percocet, vicodin, darvocet, etc. This one is the absolute best pain pill I've ever had. "
"Depakote was originally used for seizure disorders. It is one of those multipurpose drugs like diamox that does eyes, CFS pressure and seizures."
"I take diamox 3 times a day (500 mg each)."
"I found out that a doctor was using a drug called Parnate as a treatment for PTC. It's been effective for some people, and I'm going to talk to my doctor about it."
"After having an agonizing four days of pain from my spinal tap, my doctor sent me to have my first blood patch. The anesthesiologist did an epidural. They then withdrew blood from my arm. They placed this blood inside my spine. The doctor told me to let her know when I felt pressure; then she would slowly try to put more blood in. I never felt the pressure; therefore, they were able to put 15cc of blood in.
"It is now 2:48 a.m. I had this done at 4 p.m. I am not having to crawl on the floor. I couldn't walk before the patch because the pain was so bad. My back is very, very painful. They said that it might take a day or so to feel better. On the other hand, some people bounce back right after the procedure. I have had 30+ taps and this has never happened before. I believe that I am fortunate that this is the first time."
"My daughter's valve, I believe, is an AHPV valve. 'Something' Hindman Programmable Valve. Can't think of the guy's first name or coinventor. It has 18 settings between 30 and 200. They are going to raise the pressure again tomorrow. It is a testy but easy procedure. Imagine how small the valve is and adjustments have to be checked each time with x-ray. They can bypass the pressure point with ease but must always check by x-ray to see what it is. This thing has promise; it has seemed to alleviate low pressure headaches but we are just not there yet."
"... new magnetic programmable valves for shunts. It seems Orbis-Sigma, Medos, Sophy are major contributors in new valves. There are some magnetic problems with these valves (same as those associated with magnetic programmable pacemakers) so check with your doctors as to type and magnetic restrictions associated with each valve."
FYI...Lumbar Punctures (Spinal Taps)
Diagnosing PTC- Use of Lumbar Punctures:
1) Imaging studies (ie MRI) usually are within normal limits.
2) CSFluid must be normal (lab tests show not abnormal cells or bacteria). That is why LP's are the final definitive part of diagnosing PTC. CSF pressure is USUALLY higher in people with PTC, but the make-up of the fluid is normal. The fluid is analyzed for color, appearance, fluid white blood cells, fluid red blood cells, lymphs, proteins, and sugars. Cultures are often also done."
(Ed. Note: I found this to be the best overall description of the lumbar puncture procedure from 'someone who knows'...)
"My best advice to anyone is to let a radiologist do your lumbar puncture. I have had doctors try, but they have to search for the exact point. The radiologist will have you lay on a pillow to open your vertebraes. He can use the xray to see precisely where to put the needle. There is a stick first, followed by a burning sensation (that lasts about ten seconds). This is the anesthesia to numb your back. You will then feel pressure from the needle going in.
"Do whatever you need to make you feel comfortable. Try your best to relax and breath in a relaxing way. After the needle is in, the worst part is over. They will have you lay on your side to get the pressure reading. This is where they drain the fluid off. Ask the doctor then what your reading is. Don't wait and worry. It is your right.They will then help to turn you on your side.
"They will generally drain off extra fluid if the pressure is too high. They then will remove the needle. Don't let them let you go home then. Take about an hour to lay flat. Sometimes they want to send you home too soon and this will cause a spinal headache.
"When you do get home, drink lots of fluids to flush out the contrast dye (if they put it in you). Lie flat or with your head slightly elevated. Don't lift anything heavy for a week. You have an open place in your spine that needs to heal. Just pamper yourself and relax."
(other lumbar puncture comments...)
"Just tons of xylocaine at the site..."
"The radiologist usually performs a fluoroscopic lumbar puncture procedure... they put you on your stomach, numb the area, then use a fluoroscopic x-ray machine to take a picture and mark it, take a picture and mark it, etc. until they find the area they want to stick. Then they will either have you turn on your side with the gauge still in or elevate you to help the fluid drain. It is so much easier and I recommend it for anyone who has had trouble with LP's. The difference between the regular x-ray and fluoroscope is that the doctor has a much clearer picture and more detail."
"He was the first doc to do my LP with fluoro and he gave me demoral and pheneragen. He could have cut my arm off and I wouldn't have cared."
"The first attempt was very painful, but the second time under the x-ray was tolerable- just some diffuse ache-type pain as the needle was advanced. Under the x-ray they advance about 1 cm at a time then stop and take a picture. I think the radiologist also injected the xylocaine a little deeper (used a 1.5" needle) and that helped."
"I have had a total of about 15 spinal taps within the last year and they've begun to lose effectiveness. My pressure ranges around 350-440, and it goes down significantly after the LP. By the next day it always goes back up to where it was."
"To help your back, we have found wrapping ice on the site helps."
"I will NEVER have an LP done unless it is done under fluoroscope (x-ray)."
"I have an LP about every month...in the last year I have had 10 & I fear it is time for #11. I am having a lot of dizziness (no headaches, though, which is my usual symptom) & vision problems."
" I've had the best luck with an anesthesiologist. Ask for a Whittaker needle. It is shaped different than a regular one and doesn't hurt as much or cause as many headaches later. They are great for diagnostic punctures because they are very small. (That also means they don't work as fast if they are doing the puncture to drain off fluid.) Ask for medication first, like Versed, it helps you relax. You need to be as relaxed as possible to get an accurate reading of your walking around pressure."
"Drink lots of fluids- gatorade is especially good."
"Drink lots of fluid and caffeine. Gatorade is the standby here. And lie flat, flat, FLAT!"
FYI...Holistic Help
(as in 'the whole person'.. non-medical things people have tried)
"I saw where someone mentioned a tyramine-free diet. What was the decision on that? I have tried it and it seemed to help me. Has it helped anyone else?"
"I heard about the tyramine connection and tried the diet. It seemed to help. I am completely Diamox and mostly (about 1 every 7-8 months) headache free. I have eliminated all caffeine and all processed meats and cheeses. I still eat meat but not sausage, pepperoni, or anything like that."
"Tyramine is an amino acid that is found in food that is aged, canned pickled or cured. This can trigger your body to over produce spinal fluid. My doctor told me to stay away from these foods."
"I have tried the tyramine-free diet now for 3 months and have not noticed any change. I'm having an LP shunt probably within the next 2 months. I also recently lost a great deal of weight. "
"My neuro said vitamin supplements were not necessary and vitamin A supplement was definitely contraindicated. Yes, bloodwork can be done and if necessary, you could take a vitamin supplement that has no vitamin A. Aspirin and ibuprofen are also no-no's...I believe because of being on diamox. My neuro explained to me that diamox will make blood slightly acidic and otherwise "goof" it up some, so aspirin is not recommended as it will also thin your blood. I use Advil or Tylenol with codeine when the headaches are really bad."
"The connection with carrots is a very high Vitamin A content. They warn you about liver and supplements, but carrots are also high. Avoid them as much as you can."
"Just a note: large doses of Vitamin A, what is called a "Mega dose" (>200,000 I.U. daily) has been linked to PTC caused by hypercalcemia (sp?) from toxic levels of vitamin-A. Vitamin A is necessary in one's daily life, doctors are just saying to limit daily intakes of food and especially supplements high in it. A study in MAY 98 Am. J. of Opthalmol shows a case where low doses of Vitamin A and E lead to IIH (aka PTC) forming. Either way, high or low Vitamin A can lead to problems. Maybe that is why early on IIH people are told to eat healthy and take no supplements."
(re: drinking alcohol)
"Nope, its a research fact along with the positive effects on the heart and blood. It's 1 drink per day only, so all you drinkers out there can't use this as a reason for pounding them down...The doctors even wrote it in their medical record as severe alcoholism counteracted the effects of ptc."
"It's not so much that you can't take aspirin while on diamox, it is that you are warned not to use both on a daily basis. The diamox causes the aspirin to remain in your body for a longer period and may cause aspirin toxicity. That is why if one is on diamox, you need to read all over-the-counter drugs carefully to check for aspirin in them."
"The worse culprit for most ptc suffers are antibiotics (especially the tetracyclines) and for females birth control (like Norplant)."
"Just a quickie, the doctors say I can use Ibuprofen (Motrin, Advil, Nuprin) daily while on Diamox but not if I am on Lasix. I tend to live on Advil or Motrin for menstrual, arthritis and headache pain. With aspirin, on the other hand, I almost killed myself taking it daily as I developed a high fever, severe dehydration, severe tinnitis, and my kidneys started slowing down. I forgot Fiorinal contains a high aspirin dose and had been eating 6-10 a day for HA pain while waiting for my doctor appointment. I now know why aspirin and diamox do not mix."
FYI... Weight Loss
"I was told to lose weight a long time ago. I lost over 100 pounds. Guess what- it didn't work."
"I began taking Redux from May '97 to October '97, when it was taken off the market. I had gained 20 pounds taking steroids and lost 33 pounds on the Redux in 5 months. I had been told that my weight was part of the problem. Now that I've lost 33 pounds
and I'm still not better, the doctors tell me my weight wasn't the problem."
"I have gained weight twice when I think I have had flare ups. The first was undiagnosed as my symptoms were milder. Then after a two year period, I lost all the weight I had gained without even really trying...If you are anything like me, I had been feeling as if this condition was "MY FAULT" and therefore, the doctors didn't really feel that they could help me if I didn't "HELP"
myself by losing weight."
"They told me the condition was CAUSED by my weight. That was at 286 lbs. I lost 60 lbs. It got better, but never went away. I am now down 150+ lbs. and facing shunt surgery because my opening pressure is still around 30."
"I have had gastric bypass surgery and have lost 150+lbs. It is the best thing that I've ever done."
"...a quick reference note- PTC has never been caused strictly by weight gain. PTC is a condition where spinal fluid is either overproduced or unable to be drained at a normal rate. The mechanisms behind this occurrence with CS fluid are currently inconclusive. Some doctors say vascular defects are causing ptc, some say a brain anomoly is the culprit. Weight just seems to be an associated factor, not a predeterminate."
"I have lost nearly 70 pounds and the condition remains the same."
"... My doctor is adamant that weight gain CAUSES the condition and the only cure is weight loss. He put me on diamox basically as a "stop-gap measure" until I lose weight. Of course he's a toothpick that has probably been able to eat anything he wants his whole life without gaining an ounce...grrr."
FYI...Bad Doctors
"The Dr. totally dismissed the transient hearing loss and headaches (he actually looked at me and said "No you don't". And he knows that I don't have headaches HOW?????...Once, while I was trying to describe how I was suffering, he said 'Yeah, yeah, yeah, whatever.'"
"I had a very bad experience with a neurologist. I should back up and say that I have passed the acute stage of my ptc and so not experiencing the same type of symptoms as when diagnosed in 1996; however, I am still having symptoms that disrupt my daily activities, prevent me from working in my trained profession (pediatric medical assistant) and have made me feel depressed and
hopeless because of the continual pain and fatigue.
"I have not found neurologists to be the best at a bedside manner, but I thought I would give this man a chance. He was such a horrible man! He came into the room and said, "I hear you allegedly have Pseudotumor." He asked me about my symptoms in 1996, but NOT about my current condition. Told me my neurologic exam was normal (which it usually is in ptc), that I had no papilledema (ophthalmologist says I have chronic papilledema) and that I could not possibly have ptc anymore because people don't have symptoms ongoing for years and that my spinal tap at 260 was normal!!!! Now, I know many people with ptc have taps at 500, but I also know from my nursing experience and from my own pain and symptoms that 260 is not normal.
"The man actually sat there and looked annoyed at me when I began crying (I was so overwhelmed) and never bothered to offer me a kleenex (which were two inches from his hand!) Then he sat down and said, "Now a pseudotumor means pseudo=false and tumor=tumor, but you don't actually have a tumor..." in a Mr. Roger's voice like we were two year olds who hadn't a clue!! As if anyone who has ptc has to be told what it means!
"To make a long story short, the man wants to do a spinal tap to prove that I don't have it and send me to a psychiatrist (there is nothing wrong with seeing a psychiatrist or counselor...it certainly can be helpful, but not when someone thinks you are a hypochondriac because you have symptoms they can't understand!!!)."
"...my GP told me after she had spoken with the first Neurosurgeon I saw (it really ticked me off)... that I was the most "normal" ptc patient he had ever seen ... he told her that all the people he has ever seen with ptc are weird, have really dark personalities and wear dark glasses...he was acting like people who have ptc are just hypochondriacs. Can you believe that a doctor could say something like that?"
"I know the feeling (being told that these symptoms are not from ptc). It is not in their medical books so they know nothing about it. Maybe they missed that chapter."
FYI...Other Stuff
"...tell your son he isn't the only one out there.....Boys hate it when people say this is a female disease."
(from a teacher who lost her vision)
"I spoke with the Ohio Rehab, the Cleveland Sight Center and the Cleveland Teacher's Union today on a conference call. The union told us that there are 17 blind teachers in the district. So the union said that they will do what ever it takes to get me back into the classroom ASAP. The Sight Center is going to train me in mobility and what they call daily living skills. They'll teach me how to put on make-up again, arrange my closet so I'm not wearing a striped blouse with my plaid skirt, etc. They will also give me mobility training."
"Have you checked out Hadley School? They are on line. They offer free courses with college credit for the visually impaired as well as family members. I am taking my first course now in mobility. It's so interesting. You can take it in braille, large print or tapes. It's all through the mail."
"My PTC condition is one of many complications from getting Lyme Disease...They were very slow to recognize Lyme Disease can cause PTC but it is more easily accepted now."