New diagnoses,
Posted , 8 users are following.
Hi all,
I'm 25 year old female from the UK who last week was told I have Idiopathic Intracranial Hypertension. I'd been suffering headaches for over a year assuming they were sinus related or due to tiredness. However 3 months ago I started to lose vision in my left eye for 3-10 seconds at a time randomly throughout the day.
I visited the optician last Saturday, who sent me to the eye hospital who then admitted me to hospital for a CT head and Lumber puncture.
The results showed that i had more pressure than i should which has caused damage to my optical nerves.
I'm now waiting for an out patients appointment. I have suffered lots of head pain and small visual problems since the Lumbar
I feel a little in limbo as I was given no medication and no clear explanation as what to expect. I'm just waiting to see a specialist as an out patient.
I was just wondering what other people experiences are, and what they went through. What treatments they have and how it has affected them in every day life, ie work etc.
0 likes, 8 replies
Ginny_Weasley gingerbex
Posted
As a fellow IIH sufferer, you are absolutely correct the headaches and eye sight are most likely caused by the increased pressure. Do you know why your opening pressure was? I've heard a wide range on here, but extremely high or even just elevated above normal can cause these symptoms.
The first line of treatment is normally a drug called Diamox (generic Acetazolamide) it is a diuretic and a carbonic anhydrase inhibitor. The latter inhibitive part is supposed to reduce the amount of CSF your body makes. Headaches are typically treated like migraine, depending on severity. There are other drugs that also have the same inhibitive properties that can be used as migraine preventatives and are sometimes used in conjunction with Diamox. Diamox side effects can be fatigue, tingling/numbness of hands and feet, odd taste especially with carbonated beverages, to name a few. I suggest if you are put on this medication you ask for the extended release formula, which is available in increments of 500 mg. The XR helped reduce my side effects, especially the fatigue and grogginess. Initially I was on the tablets without XR and was taking medication AM and PM, I could barely function at work after taking it, so I asked for the XR. It still wasn't perfect but was better than without XR. Be prepared for carbonated beverages to taste horrid. Tingling/numbness felt as like I sat on my foot and it fell asleep and tried to walk on it, pins and needles. I experienced it most of the time in my hands and feet, to a point where I stopped wearing heels for a while because I couldn't feel my foot placement well enough to feel like I wasn't going to fall. After about a year it lessened. I still felt it occasionally throughout the day, just not as severe, and not as frequent. I used to even feel it in my face and lips. I've been on the medication two years now.
I believe my condition went undiagnosed for about 5 years. In the US it seems no one is really aware of it or looking for it. I had begun to see stars most of the time, and went to the eye doctor to see if something was wrong with my eyes. That is when swelling of my optic nerves was found. The eye doctor wrote a letter to my neurologist as here optometrist don't refer for a lumbar puncture. The LP showed elevated pressure and they removed fluid to normalize my pressure. After my LP I felt great for about 12-24 hours, then I developed a low pressure headache due to a CSF leak from the procedure. I had done everything they told me to, drink caffeine, lay flat for 24 hours after, take it easy.
If you are experiencing a more severe headache and any dizziness especially when you stand up then you may be experiencing a low pressure headache, caused by a CSF leak due to the LP. Call your doctor or the hospital and let them know what you are feeling, be sure you are not running a fever. Many CSF leaks spontaneously resolve on their own, and they may ask you to lay flat and wait. Stay in bed, don't even use a pillow. Keep in touch with them so they know if you are not better. Hopefully your issue will resolve on its own. I waited 9 days and then received an epidural blood patch. The doctor that did it said most CSF leaks stop on their own it just may take up to 20 days, but I had already missed a week of work when it was supposed to be only one day. So the procedure sounds kinda scary but it will help you if yours doesn't fix itself, they just draw some blood from your arm and inject it in the space where the LP was done. It is similar to the first LP but instead of taking out, they put in. The blood will clot and seal the hole, and though you will be sore, your head will feel better. Ice is key for a few days after.
Your vision and visual field testing will determine your treatment besides the Diamox. How far away is your office visit? It sounds like the hospital did not think your vision was in immediate danger if they did not prescribe any medication. Overall this is your vision, if you are concerned phone the hospital or the optometrist who referred you regarding a possible prescription. My vision returned to normal after the medication, and my bi-annual visual field tests are good.
My main symptom is headache, and it is the most debilitating for me. I can tell the next morning if I have forgotten to take my diamox, the headaches are worse. Headaches impact my work, and overall health the most. Best of luck to you.
Jenn
gingerbex Ginny_Weasley
Posted
I re visited the eye hospital yesterday, due to more vision problems, who have given me the tablets, acetazolamide. A small dose to start to see if they have an affect.
It's more the missing work in worried about,
I'm learning I'll have good and bad days.
Still a hard thing to get used to.
Thank you for your reply.
Nami81 Ginny_Weasley
Posted
My experience is very similar to yours. I didn't need a blood patch as my headache resolved after 4 days.
I suffered for about two years with a GP who only prescribed antibiotics, anti inflammatory stuff, motion sickness stuff, nausea meds and migraine meds.
My vision syptoms seemed to be getting worse so I went to an optometrist who referred me to an eye specialist, who discovered swollen optic nerves and referred me to a neurologist.
The neurologist said my symptoms weren't that severe so he wasn't going to book me in for a LP yet. But after listening to my symptoms he immediately suspected IIH.
Two weeks ago I had a severe migraine attack that lasted 3 full days. I went to the emergency ward on the 2nd day because I thought something in my brain exploded. The pressure was unbearable. And light sensitivity.
My neurologist booked me in for a MRI and LP after he was sure it was clean. The pressure wasn't very high, as the LP only took place 7 days after this migraine, but it was high enough to confirm IIH.
I've been on diamox for about a week, mornings and evenings. I'm experiencing creepy pins and needles in my hands and feet. Other than that, no side effects yet. Although it felt like a thick worm was crawling up in my spine all night last night.
I have constant vertigo, and its not getting any better. I'm back at work with no idea how I'm going to cope with all of this. I have a demanding job and the sick days I took probably cost me a lot thus far. My supervisor says things like 'I really just cant count on you wrt this project as you might suddenly have a sick day when you're needed'. This cost me four projects and I've been kind of demoted to handle lesser projects. I also have two boys, 3yo and 1yo and a good caring husbund. We need both our incomes, and I cant afford not having a job.
I need to have 0 sick days. I hope that is achievable with this medication.
stinker05976 Nami81
Posted
kim30269 gingerbex
Posted
Ginger, my name is Kim, I live in the US. I was diagnosed 3 yrs ago, my symptoms were pretty severe and still severe. I had the headaches that would keep me from doing anything for days, missing tons of work. I suffer from memory loss, headaches, ringing in my ears, dizziness, depression,vision loss. I hope that you respond well to the medication I think there are 2 different ones, I cant take either and they didn't work on me. I am about 20 years older than you so maybe that is good you were diagnosed early. Keep track of your symptoms any new ones, worsening of the ones you know. It will be up to you to know your body and be as prepared for bad days as you can. My doctors didn't give me much information at all, not for any problems that could come up, my insurance company gave me an awesome website it had the most information and so much support and new research. Do as much searching as you can I was the one to give my Doctors information from this website it has been a big help. I printed off information for my Dr's, and my friends and family. http://ihrfoundation.org/ look at it before you see your specialist you will be more prepared. I don't want to worry you more or add to your in limbo feeling, every one is different, keep your family and friends up to date, it's really good to have support. I am wishing you good luck, let me know how it goes. Kim
gingerbex kim30269
Posted
Hi Kim, thanks for your reply.
It's been a few months since this post and I'm in a more positive place. I struggled for 6 weeks with headaches after my lumbar puncture but then one day they just disappeared. I've had lots of check ups with a consultant on my eyes and unfortually my pressure is increasing again and my left eye nerves is still swollen but my consultant believes this could still be reversable.
I still have vision problems, I'm unable to bend down as I lose vision when I come back up, and I have sinus and tinnitus pain. However I'm learning to know my own body and I'm still working full time and resting when I need to.
I've got another appointment soon to check my optical nerves and I'll just take each day as it comes until then.
:-) having people to talk to is a huge help and thank you again for your reply.
stinker05976 gingerbex
Posted
you might be a little confused, the lumbar procedure should have brought you instant relief to all symtoms. If you don't know your own body then you probably won't get proper treatment. try to reaccess yourself.
corbin28 gingerbex
Posted
Have you found out what was causing the pressure? please have you house tested for mould and your body tested for lyme