Hi all.
I'm SO glad I came across this forum!
My name is Sarah, I'm 26 years old. I live in UK.

I thought I would hare my story (so far) about Idiopathic intracranial hypertension.

So it all began summer 2010 ( I was twenty five years old at the time) when I started getting headaches, to begin wit they the pain in my head was tolerable, I put it down to stress because there was a lot going on in my life at the time. After two weeks of a constant headache I finally went to the doctors, who also put it down to stress and anxiety, not getting enough sleep. He prescribed me something to help me relax, so that I would indeed get some sleep. The medication didn't do anything at all. No pain killers worked. The pain got worse, I had ringing and a "swooshing" sound in my ears. Especially my left ear. The left side of my body felt so much weaker than the right side of my body. It was around 8pm and I couldn't take the pain any longer, so I went to see the doctor on call who prescribed me pain killers and told me to go home and rest. Of course, the pain killers didn't work. Two days later the pain was unbearable so I went to A&E, told them that I had an unbearable headache (I'de never felt pain like it in all my life!) I was vomitting, I felt constantly dizzy, it hurt to move, I felt tired, lathagic and weak not to mention the annoying ringing and "swishing" sound in my ears. The nurse I saw was rather snotty with me and said "This is not a doctor surgery you can not come to A&E with a headache" she didn't look in my eyes or anything. She gave me two co-codamol and sent me home. By this point my vision was blurry, I was seeing double and my left eye was completely out of focus. The pain got worse! It was like no one took me seriously, no one would believe me. A couple of days later (the beginning of October) I went and had my eyes tested. I was in the little room with the optician looking behind my eyes with his machine thing (The light shinning into my eyes really was not helping, he had to stop so I could be sick) and he wrote out some paper work, explained I had pressure behind my eyes and I needed to go to my doctors ASAP (finally someone realised!), so off I went with the paper work had given me to give to my doctor. I was so so scared. I got into my doctors office and I cried, I was in so much pain, he gave me an injection of something (I don't remember much, it's all a bit of a blur. I remember being sick A LOT, I was crying - I just didn't care) and phoned the hospital. He insisted on calling and ambulance but I declined and told him my mum was on her way and would take me to hospital. I was sent into a little room while I waited for my mum, I was vomiting. My friend was with me where I didn't have to wait in A&E thank goodness and I think I was taken to EAU. I was sent right away for a CT scan, given some pain killers, they didn't work, just made me vomit even more. By this time it was around 4pm. I waiting to be seen by a doctor, the nurse was in and out taking my blood pressure (which was low - my blood pressure is always a bit on the low side btw) Also did blood tests. No idea what they were testing for, I can't remember. I was laying on a bed thing with a wet flannel on my head because it's the only thing that kind of helped. I couldn't open my eyes... it hurt SO much. The doctor eventually came and said I could have some morphine for the pain. And boy did that stuff help!!!! The CT results came back all clear. I was then admitted and was waiting for a bed to become available on a ward. About 9pm I was taken up to the ward. I was put on a the bowel ward, my consulatant was a bowel doctor - I know right... What the hell?! I have problems with my head, not my bowel. Anyhow.. I was given Oramorph every 4/5 hours for the pain. They didn't really know what was causing the pain just told me it was probably stress , after around 6 weeks of being told it's either stress, not enough sleep, the sun light, I'm imagining it, you need glasses blah blah blah I had enough of hearing the same thing over and over again!! I was not pleased, I saw a different doctor. They told me I needed to have an MRI scan because I had every symptom of having a brain tumor. So that leads to me panicking. I waited three days for the MRI scan. Anyhow finally get an MRI scan (not a plesant experience when you have the worst pain ever in your head and been vomiting) That went on for about an hour. I waited a day for the results to come back. That all came back fine. Thank goodness. So the next day, they finally diagnosed with Idiopathic intracranial hypertension. So I ask what that is exactly, they explain, tell me a lumber puncture will release the pressure which will stop the pain. So I have an LP. Worst experience of my life. I'm not even going to write about it. Just that it took double the amount of time, the doctor "couldn't find the fluid to drain" Eventually he did and it was over 100! OVER ONE HUNDRED! That is A LOT! He couldn't believe it. I thought finally, people will now know that I am not making this up, I have a diagnoses, something CAN be done. The next day I go home. They give me anti sickness sickness tablets and paracetamol. They said it was probably just a one off and shouldn't happen again. Still got a headache, eye sight is still not good, in fact, it's worse. A few days later.. I wake up and I can not even move! My head feels like it's about to explode, OMG! Can't open my eyes... nothing the pain is just unbearable. Back to hospital I go. I had to wait in A&E but I needed to lay down so they actually let me have a bed in the corridor, where I waited HOURS! It was SO noisey, I was eventually given morphine again to help with pain. I was in and out of sleep... really don't remember much, I think they did blood tests and the doctor noticed my left side was weaker than my right side. I was transferred to EAU again. I had the same nurse as the first time, lol. The doctor thought perhaps I'd had a stroke because of the one side being weaker than the other blah blah blah. It wasn't a stroke by the way, obviously. I was admitted to hospital. Back up to the bowel ward, same bay, same bed, same nurses... same consultant, same doctor. Great am thinking, we're going to get nowhere again. I was in hospital 10 days, they put me on Acetazolamide tablets to help reduce the pressure around my brain. I was back on morphine again. Slowly my eye sight started to come back to 'normal' The tablets were working, I was getting better and better each day, after 11 days I came home. I had a neurologist appt two weeks later where she told me to lose weight (I weighed about 130lbs.. I'm 5'4) because I was "fat" So I do that. Headaches go away, I keep taking the medication. Yes! I am getting better! I have eyes tests, everything looks wonderful! Yay! I was so so happy. Neurologist was pleased I'd lost 10lbs. I'd had no headahces for about 3 months. My eye sight was improving more and more. Neurologist told me she'd leave an open appt for 12 months, if i needed to see her again to contact her. Anyhow had a good xmas and new year.. great 26th birthday.. good Easter. One day two weeks ago (May 2011) almost 6 months after I was diagnosed, I wake up with that dreaded pain in my head. My vision goes a bit blurry sometimes, nothing like last time though. Oh.My.God. I think to myself "Not this not again no no no no no just NO!" So I go for an eye test (thursday) and guess what? There's pressure there behind my eyes. New pressure. More pressure than there should be. He looked in my eyes with that big machine thing that you rest your chin on, and the light shines into your eyes. God, I hate that SO very much. Especially when ya have a headache! And your eyes are sensitive to light. So now I wait 6 weeks for my next appt to see if it drains itself or if I have to have another lumbar puncture. Wonderful. Headaches are mild at the moment. My eyes are so sensitive to light (and apparently it's suppose to be sunny for the next 2 weeks, awesome - Hope you're noting the sarcasm here) ARGHHHHHHHHHHHHHHHHHHHHH!!!!!!!!!!!!!! Thankfully this morning I did not wake up with the dreaded pain in my head. However, it doesn't feel 100% normal My vision is ok at the moment, I am SO grateful for that.

I'm still taking my tablets
(acetazolamide), and I've had to start anti sickness tablets again because I feel sick AGAIN. There's no point in taking pain killers, they do NOTHING. Not even Tramadol. So, Idk. I guess we'll see. I know this though, if the pain gets worse I will not be waiting six weeks, no way! I dread every day because I just do not know what is going to happen. Will I wake up with the headache from hell? Argh! So frustrating.
And there isn't even a cure....

I know one thing, I will not let it take over my life. And yes, I know things could be SO much worse!!!

Sorry this was so long, I C+P it from my blog. This isn't exact btw, I can't remember how long between A&E.. and going to the opticians. My memory is just so bad!

Maybe I've found somewhere that people understand what I am going thru.

Sorry If I posted this in the wrong place, I'm new to forums lol

A very warm to the group, and I'm so glad you found us. Your introduction is as long as you want or need it to be, so please don't apologise for it as we encourage members to introduce themselves not only for other members to get to them, but also because in doing it, it gives you a voice and also because it can be cathartic.

You have certainly been on quite a rollercoaster ride with this haven't you , and you will find that members will be able to fully relate to you. all the things you have experienced are common with IIH, and I know they can be as frightening as they are frustrating, because you imagine allsorts of things. I think it is good you are doing a blog because putting it all in words really helps, I always kept an exercise book and wrote all my thoughts on it in there, especially as I had no one around me who understood and always thought I looked too well to be ill.

I know the side effects from the Acetazolamide are quite hard to tolerate, some people find that they disappear over time, but if it gets too much for you to bear, do talk to your Neurologist about it and maybe he can offer an alternative IIH drug. IT might also be worth talking to him or your GP about suitable pain relief, as for some of us we are on a combination of medication to help with the pain. If you are reluctant to take pain medication you could give the 4Head strips or stick a try, because it does help ease the pain and some of us have found it helpful. There is also something called a Migracap, that has been designed for Migraine sufferers, and as the migraine headache is similar to ours, it might be worth looking into.

We have some guidesheets that you might find helpful that have been created to help you deal with life with IIH, talking to doctors and neurosurgeons and also to help explaining it to family and friends. Here is the link to our section for them. You can download them and also print them off. Useful guides and printouts

If you ever have any questions or need a good rant we are always here for you, and remember you are not alone

Thanks Heidi.
The side affects from the acetazolamide Ive suffered are pins and needles REALLY bad and feeling very sick... what are the other side affects? I've really not been told much about this drug, just to take it and it'll help reduce the pressure... I am going to talk to my GP about pain relief . Thankyou so much for your advice/support

The common side effects of Acetazolomide/Diamox are;

Headache

Thirst

Changes in mood

Fatigue

Decreased appetite

Pins and needles (paraesthesia)

Dizziness

Flushing

Alteration in taste

Increased production of urine (polyuria)

Tinnitus


To read more about this drug here is the link Acetazolamide

Thankyou
I have a headache anyway.. and I always feel tired no matter how much sleep I have, mind you, I've been like that before I had IIH. And I AM more thirsty, never related that to tablets though, didn't really think much of it... It makes sense though. I think I might see about getting the tablets changed. The pins and needles are the worst, the are so painful! Especially in my feet and ankles.
Thanks for your help Heidi.

Let me know how you get on. Here's the link to our list of Medication usually prescribed for IIH

Thankyou. I'll let you know how I get on

Sarah, I hope you get some answers from your tests. I find that weather changes often affect the severity of my headaches. I also seem to have worse problems on my left side, even things like strength and coordination.

Hang in there. Betsy

Thank you for the update Sarah , the weather does seem to make the headaches worse, and they can be just as painful. They're barometric headaches and I think we get affected more because we have IIH. Humidifiers and Ionisers can help with those. Keep positive and keep us updated, we're all here for you.

Thankyou. My left side is deffo weaker than my right side and co ordination is not good at all! It sucks. I think the weather plays a part in it as well.
I will let you know how my next appointment goes.
Thanks betsy and heidi
Sarah xxx

Hi Sarah,

I'm sorry to hear you had such a rough time and continue to have a bad time. It can be scary but try and stay positive as we might have IH but it doesn't rule us. We are all here to help you and to support each other. I would suggest if things start to get really bad again going to A&E again and getting them to do a lumbar puncture. Don't let them fob you off fight for the right treatment.

Firstly thanks for all the comments. I am glad I am not alone but at the same time I feel so bad for all of you that are suffering with IIH :( to all.

My ultrasound results on my eyes came back as normal. And I had the eye doctor look in my eyes again and there doesn't seem to be any new pressure there, looks the same as last time.
HOWEVER, I am still having headaches on and off, most of the time I have a headache, a very mild one that gets worse sometimes and I end up laying down for a few hours and resting then it eases off again. *sigh* It sucks. It isn't as bad as it was when I was first diagnosed though, which is at least something! I'm still on the medication.

I just don't know why am getting headaches... The ultrasound and eye examine shows no new pressure so i don't know WHY the headache is still there ????

I have an appt with the neurologist next month. Not sure she'll do a lumbar puncture or not.

thanks for the support guys.

Sometimes with IH we just still get headaches even if pressure is normal as we're more prone to them. As long as you can cope with the pain then that's the best we can hope for.

I'm glad your eye ultra scan went ok and that your pressure is ok xx

Unfortunately we do still get the headaches even though there is no pressure on the optic nerves or any swelling. Have you noticed if they coincide with the bad weather and/or when you are on your periods or leading up to them? A lot of us notice that we seem to suffer the bad head days around those times. It's normal to have headaches then for most people, but I think because we have IIH we notice and suffer with them more severely than the average person. Keep a diary of your symptoms or use our symptom log, and make a note of when you notice the changes in your headache. Then when you go to see your Neurologist you will be able to show them a pattern or even the regularity of the headache etc.

Heidi

Thanks again for the support guys!
I saw the neurologist today as I have still been having constant headaches. I am booked in for another lumbar puncture in 2weeks time, hopefully this will help and the headaches will subside. Still don't know the reason why I'm suffering, I weigh just under 8 stone so it is not my weight. I am not on contraceptive pill. The neurologist said perhaps it's hormones. Who knows. As much as I dread the lumbar puncture I am really hoping it will help again, even if it's just for a little while.

Still on the medication acetazolamide 250mg x2 twice a day.

My eye sight is not 100% I am getting some double vision at times, I keep seeing black dots, sometimes white dots and I can not handle sun light.

Just wanted to keep you all update And say thankyou all for your support!
xx xx

Hi Sarah, it definitely sounds like you've been through it..sorry you've had such a difficult time! I hope the LP helps.

Since you had such a horrible experience, I would request to have your LP by Fluoroscopy..they take you to x-ray and take pictures as they go so they can see where the needle is. Also, request no students or residents..I always have a better experience when a seasoned professional handles the puncture. I'm not sure how they handle things in the UK, but I've learned these things help me here. I've also found that my LP is worse the higher the pressure, so maybe that will make things a little easier for you this time too. I just breathe and try to remember to keep my muscles relaxed..good luck!!!

I know they try to make issue for overweight women of childbearing years, but I think only like only 14% of suffers fall into that category. I think they are starting to lean toward hormones, but losing weight does help in some cases. You can visit ihrfoundation.org for acurate information.

Take care and keep us posted!
Julie

Thanks Julie.
I have requested there be no students there, this doctor thats doing the LP is very experienced so there shouldn't be no bad experiences this time (although an LP is never a good experience but you know what I mean lol)
I weigh about 120lbs (ish) which is about right for my height. I have lost a few lbs I am already wearing childrens jeans (14 years!). My pressure isn't that high this time and they're allowing my mum stay with me thru the LP (which I think will help me relax)
If you don't mind me asking, how long have you suffered with IIH?

Thankyou so much for your support, it really does mean so much to me!
Sarah xx

No problem Sarah..we all have to stick together! lol. I was actually diagnosed w/ PTC (IIH) in 1999. My diagnosis and treatment process was long and frustrating, so I completely understand. I actually had floaters in my vision initially and they treated w/ meds. It went away and several months later came back w/ a vengeance! After another few rounds of meds that didn't work, I got a LP shunt..that was in 2002. I've had a couple revisions, but the shunt has kept IIH/vision under control since that time.

It sounds like your circumstances are much better for next LP, so I hope it's a better experience!!
Let us know how it goes..good luck

Julie

Will keep you all updated. Next monday is the day I have the LP. I am so anxious, I must remember to relax! Ugh.
It's nice to have people who understand Thanks guys, it means alot.

I had my LP yesterday morning, it went much better than last time. The doctor was really good, it was over with within 10 mins max. There wasn't much pressure there and the consultant doesn't think I will need another LP for a long time (if ever) He said I could always try stronger medication if the headaches come back.
I have been resting as my back feels quite tender, apart from that though everything seems good. VERY slight headache but nothing really bad. Fingers crossed that my headaches subside (hopefully go completely!)
Over all, good news!

Very relieved the LP is over.

Sarah xx

Hope you're taking things easier and drinking plenty of fluids , I'll keep my fingers crossed you don't have a low pressure headache.

Thanks Heidi.

I've been drinking lots of water and resting. The dressing that put on fell off today but the pad underneath thankfully stayed on. The headache is very slight en I stand up. I'll contact my doctor if it gets unbearable.
Thanks for the support and advice


Sarah xx

Glad to hear everything went well Sarah! Take care of yourself and keep us posted.

Julie

Had a headache this morning but managed to sleep it off thank goodness. Not quite sure what that was about, as usual it was on my left side of my head, I feel great now though *touch wood* perhaps it's because I am more prone to headaches? I really do feel great right now though, first time in months!!!!!!!!!!!!!!!!!!

Sarah xxx

I had the LP on 15th August. 11 days ago. I felt good for a few days but now my headache is back in full force. It's not been this bad for a longtime. :(:(

Have you got any of these symptoms intense headaches when you stand or sit up, neck pain and vomiting? If you have it could be a low pressure headache as a result from the LP, try to stay laid flat, have plenty of fluid and some painkillers. If the pain gets worse or continues after 24 hours, get in touch with your doctor so that he can arrange for something more effective. If you have a fever, any swelling or tenderness where you had the lumbar puncture, and any leakage of clear fluid or blood call your doctor out.

Keep us posted on how you get on, and I hope this helps.

My symtoms are
very bad headache, epsecially the left side of my head.
my left arm and left leg are weaker than the right side.
the ringing in my ears (although its more like a "swooshing" noise at the rate of my pulse.
Pins and needles (which I have constantly, headache or no headache)
vomiting
feeling very fatigue/tired
sensitive to any noise and light.

Feels the same as it did when i was first diagnosed with IIH. I am really hoping it goes away soon.
No swelling or anything where I had the LP.
Can a low pressure headache occur 11 days later?

Sarah xxx