IIH Support Forum

Re: Away from home and no help.

Fri, 24 May 2013 05:42:19 GMT

I am sorry you are so upset. Could you call your branch manager and explain as a matter of urgency? If you feel you have been unfairly treated you could ask to speak to the CO or you can raise a service complaint.

IIH is not life threatening, but can be life changing. A couple of medically approved leaflets from the IIH UK website explain the condition well - http://www.iih.org.uk/images/site/pages/IIH%20FRIENDS%20AND%20FAMILY%20LEAFLET%20.pdf http://www.iih.org.uk/images/WHAT%20IS%20IIH%2...

Re: Away from home and no help.

Fri, 24 May 2013 03:29:59 GMT

He is now back in hospital and having a rountine LP review. He has involved NPFS but they have said that as we are not married and this is not a life threatening surgery I will not be landed. His parents are coming all the way down from Wales (under duress) to take him back to Wales (once the op is done) whilst he recovers. I only found out he was going into hospital at 1740 yeaterday (Thursday) even though my ship got a call from NPFS at 1630. I am due to go home today (Friday) if the sh...

Re: C-Section or not with an LP Shunt and IIH?

Thu, 23 May 2013 16:43:02 GMT

Hey Karen

Im in the same boat now with regards to decisions being made, but my situation is slightly different as you know! I have a 10cm cyst in the abdomen that is not ovarian so has bamboozled drs, the decision making for me is if I have this giant cyst out the same time as a planned section. I too am told one minute its a section and then next time I get the 'be prepared incase you have a section' speech and have to remind them that I was advised ages ago that it would be planned ...

Fed Up No further with treatment

Thu, 23 May 2013 16:08:11 GMT

So diagnosed March 2013. Discharged home on 15th March after blood tests, ct scan and lumbar puncture, told i have Idiopathic Intercranial Hypertension and given Acetazolamide 250mg per day and review by Neurologist. 17th March head pain came back 100 times worse, felt tired but couldnt sleep, felt sick, and generally felt very poorly. After speaking to GP, told this is normal following lumbar puncture and while my body gets used to medication. I continue to take the pills and still felli...

Re: What Happens Next?

Thu, 23 May 2013 14:48:09 GMT

Paps can be very different - we were told not to expect changes in our girls paps for a long time - and then we saw improvement in under a week (we got pics done of them).

You dr is obviously concerned about your sight. However you do not have to go ahead and have a shunt if you don't want to . You do have a choice here.

I suggest that you do research shunts so that you know what is involved - ask your dr which shunt he is considering - VP or LP and whether it will have a programmable valve ...

Re: Acetazolamide (DIAMOX) - awful side effects

Thu, 23 May 2013 13:48:23 GMT

I was told by my Nureo to stagger my diamox when I was on for a day to counter act side effects instead of taking two in the morning and two at night take one morn
ing dinner tea and night it helped a bit.

Re: Extreme Fatigue - Anyone Else Have This?

Wed, 22 May 2013 23:46:47 GMT

I had a full blood panel done just a couple of weeks before I was diagnosed, then had my B and D tested about 10 days after diagnosed. My D was a bit low, so she wanted me to take 2000-3000 iu instead of 1000, but my B12 is normal levels. Boo. I was hoping there would be an answer, but I really think it's just the diamox. My doc doubled my dosage last week and adjusting to the side effects the 2nd time around has definitely been WORSE - exhaustion, joint pain, cold hands & feet, tinnitus....

What Happens Next?

Wed, 22 May 2013 22:58:18 GMT

I was diagnosed 4/17 with IIH, opening pressure 35. Docs put me on 1000 mg/diamox and told me to lose weight. I've been seeing the neuro-opthamologist every 7-10 days since then. Weight loss has been hard, took me 3.5-4 weeks to adjust to the meds and I am exhausted all the time. Once I finally started to feel like I might be able to exercise, last Monday (5/13) I went in for my appt and he told me that he is not seeing as much improvement in my paps as he'd like and that he thinks there'...

Anyone use chiropractor/osteopath to help with neck shoulder pain in London?

Wed, 22 May 2013 21:06:47 GMT

Can anyone recommend a really good chiropractor or osteopath?

I need help with neck and shoulder pain, has anyone found they help with other symptoms due to iih and vpshunt?

Any advise is welcome!

Re: Acetazolamide (DIAMOX) - awful side effects

Tue, 21 May 2013 15:24:42 GMT

I went about a year being unable to drink anything fizzy. But after that i noticed i was able to drink them again. Also i make sure to get plenty of potassium. Ask your dr about regular blood tests to make sure it stays at a decent level.