Hi All,

Thought I'd give this a go, considering Im a bit of a techie guy, its kind of odd that this is my first forum I have ever joined. ;)

Well I'm 23, soon to be 24. About 3-4 years ago I began with a headache above my left eye, after seeing the doctors at my GP they had no idea what it was, but the pain went away after about 6 months. From then on I have had the headaches return every 6 months until December 2011, when the headaches have been constant. I was then diagnosed with Vertigo. After the Vertigo medication did nothing to the headache and pain in my ear, I was casually advised to go to my optician, who found nothing in previous years. This time they found a swelling behind my left eye and the entire day became a mess. I got taken to A&E who then after going through loads of tests for diabetes, high blood pressure, needing glasses, I was told I was being admitted in for testing. Scared would not be the correct emotion....horrified may be about right. After 2 hours I got told I was going home (which annoyed and relieved me) and came back a few weeks later for an MRI scan and then a LP.

I have been in quite a dark place about it all for a while, as in the past year I have had a car accident, got diagnosed with Sciatica and now IH, while holding down a full time stressful job and trying to complete a distant learning degree in my spare time. Luckily a trip to Florida has given me a second wind with things and am now in a happier place with everything. I think I'm ready for whatever IH has to throw at me, although of course I am worried about the future and how this will affect me.

I am currently awaiting an appointment with a neuro-optamologist (or however you spell it, lol) and am awaiting to start medication.

Is great to know this kind of site exists and after joining on Twitter, I look forward to getting to know people and getting to grips with IH.

Thanks

Gav :hello:

Hello Gavin!

Welcome to the forums! We're happy to have you and it is my hope that you will find all the information you need, and another support system within the camaraderie here! There are a bunch of us on Facebook that have all added one another, and whenever things get bad, it's really good to know we have one another's backs. This group is the best for making you realize that you're not alone. Admin/Staff keeps everything really updated on information and news as it develops. That being said, I hope you enjoy your stay here and that you have many pain-free days.

<3 hunterofangels/Crissy

Hi Gav and a very warm welcome to our group, I'm so pleased you joined us. I fully understand what you mean about being in a dark place, because you worry about what is is, and how serious, then you find out it's IIH and not life threatening which is a relief, only to be told it's rare has no cure and could possibly blind you. The frustration of waiting to be told what it is and having test after test,it's a rollercoaster of information and emotions that can just all, be far too much at once. Then on top of that you had your car accident so it must have all seemed never ending.

Hopefully when you are put onto medication you may be able to get some relief, although there are side effects from the medications that can be hard to tolerate for some sufferers.

We have lots of information and helpful booklets, and we encourage you to keep a symptom log and medication log, which will benefit you and your doctors because you can better keep them up to speed with what has been happening with them.

Our members are very friendly and supportive and I'm sure will be able to give you lots of helpful suggestions and advice. If there is anything you need help with just let any of the Admin or Moderators know. Keep us updated on your progress and I'm looking forward to getting to know you too.

Heidi

Hi Gavin! Welcome to our group. I'm so glad you have found us. I know you'll find lots of great information and support around here. I sure have!

We're all here for you as you move forward in your treatment of your IIH ... feel free to ask any questions or just come here and vent. There always seem to be ups and downs in my IIH journey, but it's great to know I never have to go it alone now!

P.S. I found you on twitter, too ... @littlemissnonam is me.

Thanks everybody. I havent been able to get on here or on twitter much in recent weeks thanks to uni work. But Im now back on to it all ot have a look round and so on.

So far I have finally been put onto Diamox, which as you have said, has casued some quiet nasty side effects. But it looks like Im battling through that now, I only seem to get the pins and needles now. Of course the headache and pain breaks through sometimes, but still its better than it was.

Well, that said it was up until recently. On friday this week I had some strange feelings in my head, mainly around the back. Which was weird in itself as my normal pains caused pain all along the one side, not just at the back. Anyway It absolutely floored me, I had to spend an entire day in bed. The pain was incredible, I couldnt tollerate light, I was tired, couldnt think straight and it felt like my head was going to explode. I have no idea what it was, but I have got rid of most of the pain, Im left with a feeling of fuzzy/tingling in the back of my head though. Any ideas? :ill

Im still waiting on my neuro-opthamologist appointment. My GP doesnt really know what's happening as it seems like he thinks that as soon as I have finished this one pack of Diamox, that Ill be back to normal...am a little worried about that. Plus I have no idea how to contact my neurlogist and have no other appointment scheduled.....concerning to say the least.

But as BananasMom has said...im on Twitter - @GavH88 . Im glad to be back on both here and twitter, has been tough with my uni work to get on and help alleviate some of my worrries.

I look forward to more. Speak to you all soon.

Gav

PS. unsure if there was a better place to post this....shall be familiarising myself with the site more now

Hi Gavin, I would like to add my

The diamox is usually a long term thing. I had a lp shunt installed Nov.1st and I still am taking Diamox. It sounds like your doc is on the right track, just doesn't know enough about IIH to actually do the long term treatment!

It sounds like the IIH is progressing. It may even now have become low pressure: many of the symptoms overlap but low pressure causes a much worse headache than high pressure does.
Contact your neurologists office and tell them your symptoms have changed. Ask to speak to the doc's PA if he has one, or the nurse, and tell them of what you just described. Ask if you can get seen ASAP. Don't wait until your vision startes to deteriorate. You need to get a lp done and see what your pressure is and be treated accordingly. Really push on this one. The sooner the better.

Thanks for that Wylee,

I have been prescribed 2 tablets per day and the day after my crazy headache, I decided not to take one as I thought it could be a side effect. I never thought it would be the case of low pressure headache. Makes sense that my head improved when I didnt take one though as it wouldnt take the pressure down.

I shall get onto the hospital today. Thanks for that

Hi Gavin, good to see you back! I would have to agree with Linda. The best way of contacting your Neurologist is to phone his secretary and tell her you need to see him and why, she should then be able to pass that on to him and arrange an appointment. Hope that you manage to get to see your Neurologist. when you do see him also talk to him about your medication and explain how your GP thinks it may only be for the short term. Your Neurologist can then write to him and tell him that it is for an indefinite period.

Fingers crossed for you.


Heidi

hi Gavin;
do you snore? do you have trouble sleeping on your back? obstructive sleep apnea significantly increases your risk of having a car accident, due to daytime drowsiness, and it also is related to IIH. I find that if I treat my OSA, that my sciatica goes away. if I stop treating it, the sciatica comes back. my brother had incapacitating vertigo that went away when he started treating his OSA. it is definitely something to ask your docs about, given that you have been diagnosed with IIH. good luck!
Deb

Hello hunny

See you on twitter

only tip i have is eat bananas

Hey Gav, so how are things in your hectic life? Still juggling all your activities? How are you feeling?