Hi everyone,

My name is Jessica, I am 33 years old, single and a full time college student. For the last 10 years I have had headaches, body aches, and a feeling that something was just not right with my body. I went to Dr. after Dr. who would tell me that I was "fine" and that I needed to loose weight. In fact, after my last Dr. told me that my headaches were from "stress" and to take it easy and try to loose some weight. I went in to see my GP about five months ago because my vision was not normal for me and because of the headaches. She sent me to an eye dr. who proceeded to tell me my vision was perfectly normal and that I had "dry eye", after all of this I vowed not to go to another dr. as long as I lived. I am overweight but as I have been sense I was a child, I know my body and I knew something was not right. Then about 2 months ago I found a lump on the top of my head. Because of my loving and persistent mother I went to see my GP, she ordered and skull xray and after that an MRI and then sent me to a surgeon who said he was more concerned with the fact that a 33 year old was having trouble keeping her balance and having constant headaches than the "lump" on my head ( that by the way didnt show up on the MRI - only showed a rise in the skull). The surgeon referred me to a neurologist who said that he wanted me to have an lp done and that he thought it was IIH. He mentioned four or five times that it happens to woman my age who are "over weight". Once again I was made to feel like it was because I have a weight problem that I am suffering through this, like I did this to myself :( !!!!

Anyway, I had my lp on Thursday and today my neurologist called me and confirmed that I do indeed have IIH and that he wanted me to take something called Diamox, but because I am allergic to sulfates I couldnt take them. So he put me on 40mg of Lasix .... Dont know if that works like the other or not? But I am looking for some relief here.

I am so tired of feeling like this. My head hurts constantly, my feet and hands cramp, light has become my enemy, I see floaters when I go outside, I also can sit on my front porch and look at the neighbors garage door and it appears to be opening (however it is not) :?:
I have NO balance and a lot of trouble walking on some days. I have partial nueropathy (spelling?) in my legs. In a way I am glad to have a name to put to what is going on - and the reality that I am NOT crazy. So many doctors in the past made me feel as if I was just this "crazy fat chick who was just fine". My neurologist wants me to make an appt with an eye dr. asap so I will be doing that tomorrow and then he gave me the names of doctors to help me "loos weight" as if I have not tried everything under the sun already! I have a VERY hard time loosing weight. I have been on every eating plan known to man and the only think that really "worked" was weight watchers and after 4 months of that and hitting the gym 5 days a week I lost a grand total of 5lbs!! WOOOOWHOO :roll:

Anyway, I have started to do some research on IIH and managed to scare myself silly and then I found this place. I am so glad there is a place out there to support people with IIH and I am so glad I found it!! [/size][/size]

Hi Jessica and a warm welcome to the group. I'm so sorry that you have had such a terrible esperience and that it took so long to get a diagnosis. Your symptoms are so typical of IIH, and it is unfortunate that so many doctors are lacking in their experience of recognising them, which as an organisation we hope to eventually change.

Our members are all very friendly and will give you some great support and advice. We like to give you your IIH voice here so if you ever feel the need to rant and vent please do so, that's why we have the group huddle, so that you can do just that and also ask questions and share experiences.

We encourage you to keep a symptom log and medication log, which will help not only you but your doctors too, and keep them up to speed what is happening with your IIH and any side effects you have with your medication. We also have lots of helpful booklets that have been written based on our experience with IIH, and our Partner Organisations also provide helpful booklets on a variety of things helpful with a neurological condition,

We know there is no concrete evidence that weight is the main cause of IIH, as there are so many other medical conditions and medications that can trigger it, but we do know that losing weight can help and lead to a remission. It is hard trying to lose weight when the exertion, nausea and the other symptoms interfere with exercise. So even if you have the healthiest diet in the world not being able to exercise can still cause weight gain.

I myself have the same problem weight wise and not being able to lose it, so after having a good chat with my doctor about struggling to get it down, he referred me to weighahead, where I see not only a dietician but a physiotherapist as well, because I have mobility problems. They are very helpful and understanding about the IIH, and the fact that my weight is from steroids and hard to lose designed a plan to help me. Maybe you could perhaps ask your GP about being referred to them, as once there you can explain your difficulties and they will help work out a plan based on them for you. It's worth a try.

You're not alone and we are here to help and support you, and most of all, to listen to you.

Heidi

Thanks Heidi!

Its so nice to know I am not alone and that there are people who understand. It also helps to know that I am not crazy and this is a medical condition. I used to say oh well "Its all in my head" come to find out it is LOL!! Sorry that might have been in bad taste but humor is my weapon of choice : :lol3

where do I find the logs and pamphlets you were talking about?

Again thanks so much for the warm welcome!

Hi Jessica! Wecome to our group! In the midst of all the scary and upsetting stuff that you were finding online about IIH, I'm so glad that you also found us ... I'm sure that, like I have, you will find lots of great information and a great community of support here. There really IS hope for those of us with IIH to have a better life.

If you scroll down on the main page, you will find near the bottom of the forums a heading called "Recommendations for You" and under that, a section of "Useful Guides and Printouts." That's where you'll find some of those helpful logs and printouts that Heidi was talking about.

We look forward to getting to know you! *hugs*

Jessica to the group,

I know all the information about IIH can be scary when first diagnosed but every one's body is different and their treatment is different so what has happened to others might not necessarily happen to you.

Welcome to our forum and I'm glad you found us!

Thanks everyone! I will be sure to check out the "Recommendations for you" ! :flower:

Jessica

hi Jessica;
welcome. I am new to the group also, recently diagnosed. I am also allergic to Sulfa, but found many references suggesting that it is reasonable to try Diamox in someone with sulfa allergy. I have taken it several times and am trying to find a dose that doesn't sedate me. but I have not had any allergic symptoms and you should ask your doctor about using it. go to an allergist for clearance if you need to.
so much for never wanting to see a doctor again!! what a nightmare. I go to at least one doctor appt per week. I have found that sleep apnea is a huge trigger for my intracranial hypertension. and since I haven't tolerated the medicine yet, treating the sleep apnea is the main thing I am able to do, to be functional. without treating that, I am nonfunctional. certainly being overweight, you may be at risk for this. however, I have a theory you will like. I have worked out a plausible biochemical pathway that suggests to me that sleep apnea causes obesity first, not the other way around! so don't blame yourself or let anyone blame you. it is what it is. but getting a sleep study might be a good idea.
-Dr. Deb

Thanks Deb!

I just got home from a sleep study

I thought I was never going to fall asleep! He wanted me to sleep on my back and I am not a back sleeper because I stop breathing ( thats of course what they want for a sleep study) so about 2 hours after I finally got to sleep he came in the room and said "Okay missy, I want to put you on a CPAP" . It took a little while for me to fall asleep but after that I slept like a baby and I feel so much better this morning, no headache and I can actually function!!!! WOOOWHOOO!!!! :well done

I have an appt with my Neurologist on the 14th for the results but am pretty sure I will need a machine - or at least after the sleep I got last night I sure hope so.

I will talk to my Neuro about at least trying Diamox, he was the one that said I couldn't take it because of my sulfa allergy but it has been at least 12 years sense I have had sulfa... so I don't know what it will do but the Lasixs doesnt seem to be working.

Thanks so much for the support Deb!! I hope you have a great day!

Jessica it was so wonderful to read your positive post and it sounds like your finally heading in a good direction treatment wise. I'll keep my fingers crossed for your Neurology appointment and hopefully from here on in, it will be onwards and upwards for you.

Hope you're having a great weekend!

Heidi

hi Jessica;
wow! I just found your post about the sleep study. how exciting to have found this and a solution that works! it was such an amazing thing for me when I started treating my sleep apnea and my head cleared for the first time in over a year. with how well you did with CPAP just the first night this is so auspicious for you! sleep apnea may be a big trigger for your intracranial pressure also. I do suspect that the higher the CPAP pressure goes, that it can actually increase the intracranial pressure, and I have found a reference that supports this. but it doesn't elevate my pressure as much as sleep apnea does so it is still much better to use it. I am finding that if I take a very low dose of Diamox on top of the CPAP, then I have minimal sedation, am tolerating that dose fine (62.5mg twice a day!), and it is helping. I should have gotten very sick today, menstrual cycle day 2, but I did not. the fact that the low dose is working may be also related to the fact that I have chemical sensitivity and very low doses of meds work for me and normal doses give me big time side effects. and the fact that treating the sleep apnea lowers my intracranial pressure enough that I probably don't need to turn down the CSF production more than just a little.
I always try to sleep on my back for the studies because it does bring out more apnea and you can make sure they pick up the problem. I had to go to Stanford to get diagnosed because the sleep labs in Vegas couldn't pick it up. Don't let them drag out the whole process of getting a CPAP machine; I've seen it take months for some people. be persistent and make sure to tell them you need it to keep your brain from being squished!
Deb

PS: check out my guest blog at: http://doctorstevenpark.com/obstructive-sleep-apnea-and-intracranial-pressure
Dr. Park's site is the best site on the web for info on sleep apnea, in my opinion.
-Deb