NeuroTalk Support Groups - pseudotumor cerebrii

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Hello blueridge, and welcome to NeuroTalk! You will find many friendly, helpful, and caring people here.

I live in Salem, right between the Blue Ridge Mountains and the Appalacian Mountains. Love it here!

living with PTC for 11 years

I am 21 years old and have had PTC since I was 10; 11 years now. My symptoms started with headache and it took about 4 months for me to be diagnosed. I want to share my story with you so maybe it could help you.

I have a constant headache and can no longer even remember what it is like not to have a headache. Lights sounds and smells drive me nuts too. Florescent lights are by far the worst and computers are a close second. It helps to wear amber colored sunglasses. I too have been on over 50 medications. It has not affected my growth as far as we know but it has caused other problems. So far only Diamox and amitriptyline have helped at all, but not much. One thing my mom does that has been invaluable, she keeps a running list of all the meds I have been on along with the dosage and date.

I hate to say this but you get used to vomiting at the drop of a hat, or at least I have. I have constipation partly caused by meds and partly caused by a lazy colon, which was probably caused by meds. I also have gastroparesis, my stomach empties extremely slowly. My neurologist has to order a medication from Canada to treat it. My senior year of high school I got POTS, postural orthostatic tachycardia syndrome, we are not sure if it is linked with PTC.

I had surgery to put in a pressure monitor when I was 11. From that we found a shunt would not help me because my CSF level fluctuates too much. I had papilledema through most of high school and thankfully my vision has never been a problem.

I hope that biofeedback helps him. It never helped me. I have tried acupuncture and massage as well. Massage does help my because the headache makes me very tense and that has been the only way to release the tension.

I have had the series of LPs like your son is about to go through when I was 11. Mine were every two weeks. I found out later that spinal fluid regenerates within hours. I pray your son does not get the post spinal headache. I have it each time and have to lie flat on my back for a week.

Over the past 11 years I have been to all kinds of hospitals including Duke and Mayo. The only place that has not given up on me is my neurologist at Jefferson University in Philadelphia PA. He is a headache specialist. I live in VA but my mom and I make the 5 hour drive up there every month because it is worth it. At times the headache has become so bad I have had to be hospitalized for 2 to 3 weeks to break the cycle and bring the pain level down to something reasonable.

My baseline headache pain level, the level it never goes below, is a 6. I can fully function at a 6 or at least I have learned to. When the headache becomes worse, especially if it does at lot of fluctuation, it becomes much harder for me to function. A 7 is still pretty easy to deal with, an 8 I can still get things done but concentration is much harder, and a 9 I want to be left alone as I curl up on the couch and watch TV. I never say it is a 10 because I assume it can always get worse.

Distractions are very important in order to cope. I usually bake when I get worse. I also color, play computer games (with sunglasses on), watch TV, or something else that requires little to no thinking.

Like your son, I missed over half of my classes each year. I was still able to maintain straight A’s, participate in Girl Scouts (our Gold Award project was building handicap accessible platform tents), go on mission trips, participate in marching band and so forth. I know band sounds like it would make a headache worse, and it did, but I really loved it. I am now a Junior at James Madison University; I commute from home. I have found college very different from grade school. Classes have no busy work so even on my worst days I force myself to go and sit through class and I record the lecture so I can listen to it again when I feel better. Sometimes it has meant my mom drives me to class and drives me home.

One thing I do that you may find odd is that I only tell my closest friends that I have PTC. I do not like people asking me all the time how I feel. For the most part people do not listen to the answer because they assume you will say fine. I also am a master at having the worst headache someone can imagine and have a smile on my face with a happy attitude to match. My friends tell me I am hopelessly optimistic. It has caused problems occasionally. I went to see one neurologist and he thought I was just faking.

If I can help in any way let me know. Do find a neurologist that is on top of all the new research though. I see one of the top 5 in the nation. He informed me that most doctors have stopped using shunts because of all the problems associated with them. Instead he has me on 3000 mg of diamox. It is so easy to fall behind in medical research that you have to find someone that is staying on top of it. Look into a headache center. That was the smartest thing we ever did. I would recommend doing it sooner than later because my neurologist said after having the headache for 5 years it becomes ingrained and much much harder to get rid of. My mom found my neurologist by reading all the latest research and choosing one of the neurologists that is very active in research, publishes frequently, and is a speaker at most headache conferences.

Please feel free to contact me.

Hello and Welcome!!

Hello Liz and WELCOME to Neurotalk!!!

Please note that Blueridge has not logged in to Neurtalk since September 2008. So you may not get a response.

Please feel free to start your own thread!! Introduce yourself!! We LOVE meeting new members!!!

You have found a WONDERFUL place with VERY KIND and CARING people who share a wealth of knowledge.

Please feel free to make yourself at home. Roam around and join in anywhere!!! Please help others where you can and ask questions when needed. Someone will always be along to help in any way that we can.

I hope to see you around the board!
:hug:
Abbie

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Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help.

There a great number of friends to listen and assist at all times. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Quote:

Originally Posted by Dippity Do (Post 545070)

Dear Blueridge,

I am a mom of a teen with PTC. We've had a long road. About 1 1/2 years for a diagnosis, one year being ignored by a neuro, and now being treated for the disease in an agressive way at Children's Hosp in Oakland.

We have been dealing with this for 3 1/2 years. It's been horrible. My son missed most of middle school (home hospital tutor),and is being homeschooled for 9th grade because of it. Most normal activities are too much for him--light, sounds and even smells can make him worse. He's been on so many meds it concerns me that it's affected his growth.

He wakes up with a headache every day, and has been unresponsive to meds. He also has stomach issues that may or may not be related to this disease. He has frequent diarrhea and nausea, and for a long time would vomit at the drop of a hat.

He's had 7 spinal taps (LPs), including a temporary shunt put in to determine if a permanent shunt would help him. The temp shunt made him very ill and the "test" did not show his CSF pressure to read high. At that point the ns decided he didn't have PTC, so he took him off the Diamox. He then developed the one symptom he never had before--papilledema. (The docs at Children's never saw a child with PTC without papilledema before.) He had some vision loss over that two month time. It upset me very much. The neurosurgeon is still very hesitant to put in a shunt because they are so problematic, and he didn't do well with the temp.

He's a church camp right now, but when he gets home next week, he'll have three dr's appts to go to. One being a colonoscopy and endoscopy on Fri to make sure there isn't anything going on in there. He also goes to biofeedback once a week for pain. This summer we've had mostly 2 or more doc appts every week. It's been tough on him. So much running around.

The neurosurgeon and neurologist concurred recently that they are going to give him an LP every two to three weeks to try and permanently reduce his CSF pressure (ICP). This is to avoid a shunt. They said they have been successful with one other patient. The LPs come with risks, too, but my son really doesn't want a permanent shunt.

Anyway, if you'd like to send me a PM I'm okay with that. I hope and pray your daughter gets well--well enough to go to school and have a "normal" life. How's her vision? Any stomach issues? Bless her heart!

Please contact me. I've needed a support system, too!

I have really bad nasuea,vomiting and chronic dhiarhea myself and suffer PTC.. Recently had a shunt placed and still on DIAMOX but a dose if 500 vs what I was on.. Mine was from an abnormal vein that drains the fluid I part of several neuro birth defects I have) No amount of weight loss will help mine since it's congenital. I had so many LPs my back now makes POP noises and has some scar tisssue build up :(