Hello.....My name is Verity. I'm 23 and have been diagnosed with IIH. I have had near enough a constant headache since October 2010, been in and out of hospital trying to get some pain relief but nothing they give is helping.

My Dr's and Specialists seem to be dragging their heels with getting things sorted. I have been on diamox for about 6 months and still getting the headaches where they knock me off my feet and I'm pretty much useless till it gets back to a state which I can bare.

I have had MRI's scans CT scans blood tests done and still waiting for results. Is it normal for this to take so long?
My neurologist hasn't put me in for a LP yet as he doesn't want to put me through the pain but surely thats the main way of knowing? Other than the swollen nerves and things behind my eye.

I also work within the NHS and have access to people who have medical knowledge and they also think that I should be tested for lupus as I have some symptoms which falls under that.....Cold numb hands and toes, chest pains, sore eyes, kidney pains, rash, joint pains, always being tired and slight hair loss. Has anyone else experienced this?

Another episode which I experienced recently was where I woke up and was texting in bed but then seemed to freeze, I couldn't move, It was like I was asleep with my eyes open, I was like this for about half an hour. My hands and feet then started to twitch as I came out of the episode. Has anyone else experienced this?

Sorry for so many questions, I live by myself and don't really have anyone to speak to about it, I've been trying to look on the internet for answers but don't seem to get anywhere and my Dr's seem to be fed up of hearing from me.

Thank you for taking your time and reading

Hello Verity a warm welcome to the group. You are right to ask questions and to have concerns. Some of the side effects are consistent with the Diamox and here is some information about Lupus which I hope it helps you.

The reason it takes so long to get the results is because they have to be reported on the system, and then an appointment has to be made for you on that clinic with your Neurology.

The episode you had the other night I think you need to go and phone or see your Doctor about, so that they can checkyou over properly to see why that happened. Is that the first time something like that has happened? Make a detailed note of what happened, when it happened and what you were doing at the time. This will help your Doctor and give him an insight into what is going on with you.

Have you not had an LP at all? An LP is usually how they definitely diagnose IIH, so I'm surprised that your Doctor has chosen not to do one, or to bring your pressure down. You really need to phone your Neurologists secretary on Monday and tell her what is going on, and ask to speak to your Doctor about seeing him as soon as you can. He is the best source of information and you can ask him all the relevant questions. If you are not happy or cann't get an appointment, you can contact your hospitals PALS and they can help mediate for you and resolve some of these issues.

I used to work for the NHS myself and sometimes it can be a case of who you know, I remember getting one of the Doctors on my Department to contact my Neurologist when I was having problems and needed to see him. I did get an appointment straightaway because at the time I was in a lot of pain. I don't know if that is something you could do or would be able to do, but it might be worth a try.

Let me know how you get on.

Heidi

Hi Verity, welcome to the group! I'm sorry you've been struggling for so long & don't seem any closer to answers. I would guess that your physicians are waiting for test results to confirm diagnosis. It sounds like you're having symptoms that aren't necessarily related to IIH, but it can also be secondary to other conditions. If they're leaning toward IIH, then I would think LP would be scheduled soon..it is the only way to verify IIH, but tends to be used as a last resort because it's so intrusive. I would definitely keep a symptom log including medications & how you responded..it will only help doctors narrow down possibilities. If you're looking for more information regarding IIH, then you might try ihrfoundation.org.

I hope you find answers soon..let us know if you have any further questions or concerns & we'll do our best to help you through it!

Take care,
Julie

Thank you for your replies.

I have had my appointments through a while, and to start with we went private as my first appointment was meant to be in february this year after being refered in october last year, so we thought it was better to get a shift on with things because at first they weren't saying anything, it was until I saw him privately that we were told that it was a stroke or brain tumor but this IIH.

I have another opthamology appointment this week and neurology on a week on monday, I feel like they are just doing a lot of looking and not getting on and doing anything. I think my neurologist has seen this quite a lot, he seems to know what he is on about but doesn't seem to want to do anything quickly.

I know a few of my sypmtoms I mentioned have been shown in the side affects but these are symptoms which I've either had for a couple of years and have worsened with the headaches or have started in the last month or so, so my GP believes it shouldn't be a reaction to the Diamox as I've been on it a while already.

I have been doing a lot of research on it, as I think It's best to go armed with as much as possible. My neurologist hasn't yet done a LP but he said he is 99% sure that its IIH, I believe that this time we may discuss a LP but he didn't want me to have it done at my local hospital so would also mean travelling for it. I just want it sorted now, I feel it is ruining my life and stopping me from doing simple tasks such as going to get a pint of milk.

Can it be registered as a disibility? I have recently gone back to work after having 5 months off and my union rep advised me to find out whether it can as then work has to be more helpful in my situation.

Verity it is possible to receive DLA although it would only be a low amount because it does depend on lots of factors. Visit direct.gov.uk and you are also entitled to help from Access to Work Also check out this site Benefits and Work

This is the information that you would need to provide them with.Information You Need to Give an Employer and Others When you Have IIH I used this information myself when I claimed for DLA and also for my Incapacity Benefit.

They write to your Consultant too as well as your GP, and it will depend a lot on what they say and the medical you have for the DLA.

Hope this helps you.

Hi Verity! Welcome to the group. I'm glad you have found us, and I hope that you will find a lot of the information Heidi has pointed you to helpful in your search for answers.

It does seem to me that your doctor should want to do an LP. So far I've never really heard of a case where IIH was suspected and LP was NOT done. I agree you are right to continue discussing it with your doctor!

I hope that you will find answers and relief for your symptoms very soon. *hugs*

Hello Verity, Welcome! This group has been a wonderful resource and place to share or just vent. I have done my share as you will see.

I may be having and LP this week. I've had many of them. I am sure my pressure has dropped since adding lasix to the diamox but I feel awful!!! I have no strength. I am dizzy and lightheaded. I am nauseous all of most of the time as well. I just overall feel bad.

Two weeks ago the pain in my head was so severe that I could hardly stand it. I feel like my options are to deal with the severe pain or deal with all of the the other debilitating symptoms that are caused by a combo of IIH and the treatment.

My job is looking to terminate my position since I am unable to perform my duties at work. I am applying for disability benefits and retirement from my company. I am so stressed over my health and not feeling well plus my job really being on my case since I am unable to return.

Good luck!!!
Relli