[MeredithAncret]

My name is Meredith, I'm 21 and studying political science at university.

Last year, before I went back to college, I was diagnosed with pseudotumor cerebri.

I've had mild, annoying, headaches almost constantly since junior high. I would get the occasional migraine, suffer through it, and move on.

In high school my mother and I thought we discovered the cause of these headaches, as we realized that I was allergic to a common food dye used in processed snack foods (Red #40) which caused nausea, vomiting, and migraines if I ingested too much of it. My family changed their eating and shopping habits to protect me and some of the headaches stopped.

At 20, I was working full time and I moved out. I was still getting migraines about 3 times a month or so and these were bad migraines. Sensitivity to light that was so high that I had to cover my head completely and block out all light. Sensitivity to smells and sounds that caused me to shut myself up in my room for hours. I had to force myself to go to sleep every time as that was the only way to stop them. They were like no migraines I had ever had before. I could literally feel the pressure building in my brain, feeling like my eyeballs were going to shoot out of my skull.

Slowly, over a period of 6 months, the number of migraines and severity ratcheted up to about 1 a week, sometimes 2. They started effecting my ability to work and my parents finally insisted I go to the doctor after they had to pick me up at work, where I had locked myself in a bathroom with the lights off, after throwing up several times.

My mother, an optometrist, started by checking my eyes and found that my optic nerve was severely swollen and a check of my visual field showed several massive gaps in vision.

I went to a neurologist who finally diagnosed the problem, after 2 MRIs and a Lumbar Puncture. I was put on Diamox, which is the traditional treatment, as well as Topamax for the non-pseudo tumor migraines that I also had.

He reduced the dosage after several months and I stopped the Topamax altogether, as it had no more effect than a bottle of Excedrin and it slowed my thought processes a lot.

Eventually my neurologist told me to stop taking the diamox for a time, to see what would happen. As PTC can stop being a problem suddenly, just as it can start suddenly.

I was a bit over-zealous and remained off the drug for MONTHS. It was amazing to not deal with the side-effects of the drug, the lethargy and lack of appetite, and I had no problems with pressure related migraines. I took over the counter Excedrin for the average migraine.

However, just a few weeks ago the PTC migraines came back with a vengeance. Luckily I was staying with my parents at the time and they were able to go fill my prescription, which was luckily still valid, and I have been fine since I started taking Diamox again.

Unfortunately the side-effects are back too.
While my friends don't want me to be in pain, they also don't understand why I never have any energy to hang out with them anymore. The lethargy is affecting my schoolwork because I just really can't muster up the energy to care about the socio-economic repercussions of China's communist government, when it's all I can do to even get out of bed in the morning anymore.

Sadly, I think it's more than just the medication causing this...I think it's the general hopelessness that I feel when I think of living like this for the rest of my life. As far as my neurologist knows, there is no "cure" for this. I worry that I'll spend the rest of my life in a lethargic haze where everything that I listed as my "hobbies" on this site (except for watching TV) just seems like too much work, to much effort, to try to do.

I don't think any of my friends or family can really understand that.

Sorry for the long intro, I'm just feeling a bit more despondent than usual today.

[ginnie]

Welcome to Neuro Talk. I am sorry for what brought you here, but this site is wonderful for information and support, no matter what the medical condition is. I do not know alot about your condition. I will look it up tomorrow and write to you again. I had a big day today myself and I am really tired tonight. I had to let you know, that people will care about you on Neuro Talk. Many people have these depressed feelings over the conditions they have. You will find friends and support here. I wish your friends would be a little more understanding of your condition. When you feel rotten it is hard to do much of anything. I sure understand that part. I will write to you again. You will get some other responses too. At the top of the page there is a search bar. If you type pseudotumor cerebri into that space it will bring you to that forum. Again welcome to Neuro Talk, feel free to talk as much as you need to. We will be here to listen. ginnie

[Lara]

Welcome to the NeuroTalk Support Groups, Meredith.

There's a current thread in this forum
http://neurotalk.psychcentral.com/forum2.html
General Health Conditions & Rare Disorders

edited to add the current thread. Someone just posted there today.
http://neurotalk.psychcentral.com/sh...otumor+cerebri
Losing Faith, My battle with pseudotumor cerebri

I did what ginnie suggested as well and notice there are quite a few older posts from people in different forums here regarding pseudotumor cerebri.

Also some older posts in Hydrocephalus Forum
http://neurotalk.psychcentral.com/forum14.html

There's also the Headache forum
http://neurotalk.psychcentral.com/forum32.html

[MeredithAncret]

Thank you both.

Ginnie, I'm sorry to hear you have also had a bad day. I guess we all have some pretty off days now and again, that's why we're here

My friends are mostly very wonderful, but, with only a couple of exceptions, they've never dealt with chronic illness. The ones that have...well they understand part of what I deal with, but it can be hard for us to talk since it just seems to compound our problems when we discuss them...since there isn't anything we can actually do to help.

[Darlene]

Meredith,

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. There are great number and caring fellow members here, you will see we are supportive and relaxing place. Just let us know if we can be of any help. Our shoulders are here for support in many ways. Have fun roaming around.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

[ginnie]

I told you I would be back. I just got back from errands. Sat down the last half hour and reviewed pseudotumor cerebri. From the information given on line, this can have correction and resolution. Are you happy with your doctors? The most to worry about apparantly is vision, and that you have to have it checked often. I will re-read your post too. Have hope that in time, a correction can be found, or that it will resolve completely. Back to your origional post....ginnie

[ginnie]

One of the best things, is that you are young. Sometimes your condition does go away. There are also some other types of proceedures that can allieviate symptoms. Have you had more than one opinion? I did read about the medications you have tried also. I think I would have to get another opinion before I let depression carry me to the bottom. Maybe try a few more things, to relieve the pressure. Has any other option been given to you? The articles all said the pressue can be helped with a shunt, or to drain off the fluid via spinal tap?. What if that were all it took to allieviate the problem? It might be worth considering if this were an option given to you. Please have some hope, that this won't last all your life. There are also some homeopathic things mentioned. Have you gone on line to do any research on it? I really did see some hope in your condition. Let me know what you are doing, and if you are going to see another specialist. I do wish you all the best, and a solution. I am hear to talk to any time. I can also direct you to the pages I read about on line. ginnie

[Momma's Kids]

Hello Meredith and welcome. I'm sorry that you have to be here, but glad to meet you. Most folks will refer to me as Momma cause that was my name for years.
I get the lethargy that you have, I suffer(and suffer is just what we do) from fatigue caused from MS. I can sleep for 16 hours and be up for 4 and go back to sleep. I have taken amphetamines to stay awake and still go to sleep, and I only take those maybe twice a month or less.
I also have severe migraines that have landed me in the hospital for several days, I take a pretty high dose of Topamax. I also have some heavy duty pain meds if one starts. Its not easy for those that do not have health issues to understand what those of us that do go through on a daily basis. We may feel great one day might get in two days and then feel like that dead turkey at Thanksgiving for weeks. That is our life.
It is hard to give up things in our life we love to do, mine is fishing. I don't get to go as much. I found other things to take the place, things I can do sitting down in a chair with little or no movement involved. lol
Seriously, I like to sew and I do when I can or will when I get another machine, mine died a couple of weeks ago. I also like to knit and crochet...maybe that is something you might like to learn and you can do it while watching tv.
Don't give up on you just yet, you are stronger than you think or you wouldn't still be moving around. I know its hard most days, but hang in there, we are here for you. I'm around, just don't post as much, and you're always welcome on the porch. The porch is where you come to forget all the bad things and sit and swing, listen to nature, smell the flowers, swat the bees. lol
You be good and take care.

[Anixiel]

Meredith,
I am new to this site as well... I know what it is like for others not to understand what you are going through, and I have experienced people leaving my life because they do not understand and/or can not handle. What you have to remember is your strong, young, and have a wonderful life in front of you!

I see that you are in Arizona, I am not certain which part, it just said that state name under yours. I used to live there just 8 months ago, I had a great set of Dr.'s, they are Gilbert Neurology, and are just tremendous. They work with you and explain things that you may not understand, you have many options. A low sodium diet is very important as well, as well as your hydration, lots of water (always hated it when my mom said that...lol), but it is important. Exercise, no matter how hard it is, gotta do it... You will feel better...

Now, if I only listened to myself as I type this out we would be doing great. I hear ya, I know how it is, I am exhausted at times for absolutely no reason and no one understands why, so I am glad I found a place where people will...

Good Luck.

[ginnie]

Welcome to Neuro Talk. I hope you stay and keep posting. Every time we respond to each other, it gives the other a message of hope. Glad you found Neuro Talk. I have been here for about two years, and still continue to receive support. Have a good Easter weekend, I am glad to meet you. ginnie