Mild iih

Treatment is next. Usually a diuretic such as diamox with weight loss if you're overweight. 

I was diagnosed with IIH 3 weeks ago. For me treatment involves taking Acetazolamide /Diamox twice per day, weight loss, and I quickly was invited to an eye clinic to have more photos of my eye and optic nerve taken (to determine any change of swelling) and do a visual field test (to determine any peripheral loss of vision).

The side effects of the medication involve extreme fatigue, very reduced appetite, and metallic taste in mouth. The symptoms sound bad, but the alternative of constant headaches and potential for permanent loss of vision is far worse. The side effects do start to wear off though.

For me, monitoring will involve paying attention to IIH symptoms, and taking photos of my eyes in three months at my next check-up/

Hi Amanda. I’m fairly new to this too. Mild IIH sounds like your symptoms perhaps weren’t considered severe enough by your specialist - you’ll find out more after your lumbar puncture and you’ll know the exact pressure level of your cerebral spinal fluid. Eg mine was 30 pre puncture and they drained it to a more acceptable level of 18. I think normal is around <15, mild is 15-25, anything higher is considered high. The next step from the lumbar puncture is almost always to be put on medication. I just started on diamox a few days ago. It’s made me feel pins and needley in hands and feet at times and tired and a little dizzy sometimes. But I’m noticing my body is getting used to it. But literally everyone is different and as the other person said the benefits of these medications (keeping your excess fluid and therefore excess pressure at bay so you hopefully don’t experience those horrible headaches or ear pain or any symptoms you have before they drain you) truly will outweigh the side effects of the med. If you do find the side effects are unbearable you can always go back to your specialist and they can put you on another diuretic. There are plenty out there and hopefully there will be one that works better. But that’s jumping the gun as who’s to say you won’t be fine

Call around to other places that do it and see if you can get in quicker. It’s really important you do it asap because you want to know how much pressure you do have. Was it Idiopathic Intracranial Hypertension you had? I have that and have been told that it’s really just s**t luck who gets it... it’s an acute chronic condition so by nature that means it could be life long coming and going as it damn well pleases.. but I have also read many success stories of people who make some major life style changes lose weight and it never reoccurs for them.. it really is such a cheeky bugger of a disorder - not the same for anyone!.. after your LP talk to your doctor and I would say the most common thing is medication after to maintain the new healthy pressure. A lot of the time just the LP alone isn’t enough and the high pressure returns naturally especially if you haven’t eliminated what’s “caused” this condition in the first place ie weight gain, particular medications etc. But. You never know. You may be lucky! Just don’t take any chances on your health and do nothing thinking you’ll be sweet.  It’s imporant to have a doctor you trust and you to be confident in their advice. All the best with your lumbar puncture! P.S.- Make sure you lie down flat as long as possible after to avoid the nasty headache side effects! You’ll do great