Hello,

My name is Jo and I am 32, the typical age for this condition so I hear. I was diagnosed with IIH in August 2009 after visiting an optician due to headaches, whooshing in the ears and really peculiar vision. The optician sent me straight to hospital where I was diagnosed and had a lumber puncture with a pressure of 54. Unfortunately I had a terrible time with this procedure as too much fluid was taken out, down to a 2 I believe and I was hospitalised for longer as I could not walk, stand, sit-up and had incredible pain across my neck and shoulders which I was told was due to not having enough fluid to support the brain well enough, so it sinks to the back of your head. I had never felt so ill in my entire life and had numerous puncture wounds where the needle was inserted into different places in the spine and this alone caused terrible back pain. I had to drink plenty of coffee and coke etc as the caffeine is said to help raise the pressure. After some time, I became a little more mobile and returned home to recover fully.

Since this I was prescribed 2 Acetazolomide a day, which worked great. I had regular visionary filed testing and appointments with my neurologist to keep this condition in check. Everything was going so well that the neurologist decided to bring me down to 1 Acetazolomide a day. I carried on with life and had no problems at all for 2 and a half years, but just 3 weeks ago it reared it's ugly head once more. I had many consultations with my Doctor who has now put me on the maximum dose of 4 Acetazolomide a day, but it has not helped at all. In fact my symptoms are worse now then ever before. I wish I could just rip my head off, it's so bad, uncomfortable, painful and more than anything else, I'm petrified of the effect this could have on my eye-sight as it's much worse.

Tomorrow morning I return to hospital and I am so as I cannot bear the thought of another Lumber puncture after the last one went so terribly. I have to visit the eye clinic first and then take it from there I guess.

Wish me luck!
Jo x

Hi Jo, and welcome to you! I am sorry I missed your post. I hope that your appointment went well.

I am continued to be amazed at the difference between how things are done. I am in the US. My Docs us a blood patch if there happens to be a leak after having a lp done, to help to raise the pressure back up. It is unusual to get low pressure symptoms here because the Docs have you lay flat for one hour (even when I had an epidural for back pain they had me lay flat for 45 minutes). My Doc has patients using 3 to 4 GRAMS of acetazolimide (Diamox) a day without a problem. Close monitoring of kidney function is required (I get mine checked every three months). I am taking the Diamox Extended Release (ER's) which are 500 mg each. I am currently taking 2 in the morning and 3 at night. That's 2.5 grams/day. The tingling is annoying, but we are trying to get my fluid production back down again.

If having a lp followed IMMEDIATELY with Diamox does not relieve your symptoms, there are other meds to try, or surgery. Don't give up yet. There are still lots of things to try. We'll help you to get you better!

Hi Wylee,

Thank-you for your reply. It is interesting to hear the differences in treatment in the US. When I had my first LP, I had a trainee/ new Doctor and once he had finished I asked if I could go outside and get some air. He said yes, but as I got outside my blood pressure just dropped and I nearly fainted. Then I sat bent over with my head to my knees trying to recover before being taken to the ward. No-one told me to lie down for an hour and I think this could have been one of the reasons I had complications.

My appointment went quite well at the hospital and after all the regular eye exams/checks I was told that although my optic disks are fuzzy my sight was not affected. I was so pleased to hear this and I was told that my optic disks have been fuzzy for 3 years and nothing had got any worse since my previous tests. The hospital will have me back for more regular sight tests while my pressure is high just to monitor me, but if the pressure doesn't come down with the Acetazolomide then I will have to have another LP.

I have good days and bad days but just keep pushing on and refuse to let this beat me or determine how I will live my life. I have quite a stressful job too which probably doesn't help.

Do you or anyone reading this know anything of the triggers can increase your symptoms? For me I think it's hormonal as I find my pressure creeps up at that lovely time of the month. It gives me even more reason to hate it now! Also I think I may have just had a virus and I believe this may be the reason for my latest episode?

My Mother has regular acupuncture as she injured her back in a car accident and she used to suffer terribly with migraine. Since having acupuncture she has never had another migraine and feels it works well for her. She spoke with her acupuncturist and he thinks he can help me and said our channels get blocked sometimes, but is convinced he can reduce my symptoms. I will be going for my first appointment next week and will let everyone know if it does help at all, but I though anything is worth a try, It will work or it won't I guess.

I hope to speak again soon and also hope you manage to get your fluid production under control and start to feel better.

Best regards,
Jo

Jo, there does indeed seem to be a tie to hormonal changes. IIH most commonly affects women of child bearing age.

I don't know about the acupuncture, but it does help with other types of pain, so why not! Let us know how it goes!

So much of what we learn about this disease is through trial and error and sharing with each other.
Thank you for your well wishes, and actually, increasing the Diamox back up has allowed me to start to feel better without the low pressure symptoms! I think I may be on the right track. Hope you will be soon, too!

Hi Jo!

I am so sorry to hear what you have been through!

I live in the UK too and my first lumbar puncture last year was something of a to-do, the doctor was a trainee and they couldn't find the correct space so a procedure that is supposed to last 5 - 10 minutes ended up lasting 45 minutes. Safe to say the next time I requested a fully qualified doctor with experience and I ended up having lumbar punctures under fluoroscopy. This is where they use x-rays to guide them and in my experience is not painful at all.

I am also perplexed about why the doctor didn't make you lie down for an hour after your lumbar puncture, and I know that feeling myself so I feel your pain honey it's not nice

I have found that my symptoms increase when I have another illness like sinusitis or a virus, and around my time of the month also. I too would be interested to find out how common this is! My symptoms are generally worse when I have been up and about for long periods of time, I find myself having to lie down and have a rest every now and again. I do have a valve shunt, as diamox made me feel worse. :(

Other triggers I have included alcohol, which I gave up about 14 months ago because the pain when drinking was just too much for me. Also bright colours and lots of noise make me feel terrible so I have a pair of sunglasses and a pack of earplugs at the ready for any occasion! :lol:

I would be really interested to hear how your acupuncture goes as I am looking into it myself :Good Luck

I hope you feel well and have a great day, hope to hear from you soon! :hello:

And Wylee it is lovely to hear the Diamox is helping you :well done

:flower:

Welcome to the group Jo, my trigger has been confirmed as hormonal, although the weather and stress also play their parts too. I do have a VP shunt and 2 subtemporarl decompressions, but still suffer during the time of the month and bad weather. If you look at our A-Z of headaches commonly experienced with IIH, you'll see that the IIH community often experience those headaches, maybe you already have too. I like Melissa also notice the difference when I have sinusitis ,virus or cold etc.

As for alcohol, I do have the odd white wine sprizter occasionally, but I do limit my intake. I learnt by trial and error what was the right amount for me. Earplugs, sleep masks and sunglasses are also a big help when you are having a bad day, and we do recommend them in our Recommendations for you section.

Medmisfit has been having acupuncture and you can find her posts on it in the Alternative Medicine section which I'm sure you'll find helpful. I hope that we can help and support you with our excperiences and knowledge.

Best wishes

Heidi

Hello,

Thanks Wylee, Melissa and Heidi for your comments. It's all helping me understand this a bit more. I went for my first Acupuncture appointment today and The acupuncturist said to start he was going to concentrate on my flow, circulation, kidneys etc as he thinks I retain fluid generally and not just in my head! It was totally painless and I had needles in my ankles, below my knees and below my elbows. Not sure where they will be on my next visit though if different. I also asked if he could help with my energy levels as I have noticed since my increased dose of Acetazolamide that I feel as if I have been run over. All i want to do is sleep and my muscles really ache all the time. As soon as I came out of the appointment I felt really peculiar and had to lie down this afternoon, but he did say I may feel like that. I also had to visit the loo quite frequently today which my Mother said she always finds and thinks it's the toxins flushing out of your system. I said to my friends that even if I get some kind of placebo effect from it then I would still be happy as long as it helps.

The fluoroscopy sounds much better and If I do need another LP soon I will definitely ask about it.

Thank-you all again for your well wishes and advice.

Hope to keep in -touch, best wishes,
Jo xx