Hey guys

Found this forum while reading up on IIH. BIH. Whatever it's called....So confusing...lol.

I have been suffering with headaches for many years and was diagnosed with IIH just a few months ago. Had some trouble with the Acetazolamide, stopped taking it, didn't know much about it. Now that the headaches are back because I wasn't treating them, I did some research and quickly dug the meds out the cupboard and have been taking them since last Friday.....Sheesh!

I'm 24, married and have a 5 year old son. I hope to (and already have) gained a lot of knowledge from this forum and I am glad that I am able to communicate with others who are in the same boat, people who actually get it. When I say my head hurts, you guys will know what I mean ;) 

Looking forward to being a part of this group! :well done

Welcome to the group! I'm glad that you had medication available, but hope someone is monitoring your progress..especially your vision! If not, I would recommend scheduling an appt with the physician that prescribed the Acetazolamide and requesting a referral to neuro-ophthalmologist..losing your vision is the greatest threat with IIH, so need to make sure you're being monitored.

Sounds like you've already looked around the site..let us know if you have any questions and we'll do our best to help you find the answers.
 
Take care,
Julie

It's actually quite complicated because I had my last LP in June. Dr told me 'I'm getting better so don't need another one and I should come back for a check up in September. I went in September and everything was still fine, (no LP) and they set another appointment for end November. The last 3 weeks I have been struggling tremendously, hence the decision to start taking the meds I've had laying in my cupboard forever. I called the hospital today to try and go and have an LP next week, but they fully booked until next year so I just have to wait until November. Its also an issue with work because due to the IIH I've exhausted all my sick leave and in order for them to give me 'additional leave' that they give to people with serious conditions, they need more info from the doctor. Which I can now only get end November. 

I had 7 LPS at the hospital and they only diagnosed me recently...It's been a struggle. 

With regards to vision, A couple months back I noticed these black floaty things in my right eye. At one of my LPS I did mention this to the Dr and she said it's because of the high pressures and it will go away after the LP. That was a few months ago and it hasn't gone away. Should I be worried?

some people have floaters that don't go away with decreased ICP.  IIH can really mess up your eyes and vision, and you don't have to have papilledema for that to happen.

sounds like you should call your doc and see if they can write you a note to get you thru til your appt.  I wonder if you can go to an urgent care to check in and get a doctor's note.

I hope you can get a reasonable solution for your discomfort.  a lot of people hate Diamox.  so sorry you had to join us in this miserable illness.  but welcome!

Deb

Hi Deb

I wasn't even 100% sure that the floaters were related to the IIH, but it seems I'm just learning as I go along  

Had a meeting today to discuss my issue at work and all they need is more info from the dr. All I can do is wait for my app next month. If I do need to see someone before then I will arrange it, but for now I seem to be doing okay. The meds are quite something to get used to hey, sheesh. 

Thanks for the welcome!

Hello Mel and welcome to the forum.
Do you recall what your opening pressures were for the 7 lp's that you have had?  I wonder if your numbers have been "borderline" which could have confused your docs.  Usually, the best way to determine if you have IIH is to have spinal fluid drawn off during a lp and seeing if that improves symptoms.  If it does, and your MRI's are "clear" than IIH is usually the diagnosis.
I think you have learned a valuable lesson about self doctoring.  Stopping Diamox when you feel better is often even prescribed by the docs!  They figure that you must be "cured" since you feel normal again and stop the Diamox (Acetazolamide) only to have the symptoms come roaring back!  Unfortunately, you may find that until you have another lp to get the spinal fluid pressure lowered that the Diamox will not appear to be working as well as it did before.  That is normal.  Your pressure has probably gone back up which would be why the floaters have not gone away.

Please take the time to have a good look around the site (BTW, your post is in the section used by partners of those who have IIH, so you may not get as much traffic as you may have had under the introductions section).  There is a lot of really great info here, probably more than you would learn from your docs!  But, most importantly, you are no longer alone on this journey.  Feel free to ask questions, rant and rave, or just chat anytime.  Chances are someone will be around to respond.

I remember it always being late twenties....28, 27, around there. where does that factor on the scale? 

Lol! Sorry for posting in the wrong place! I swear, I am very internet savvy, but at the moment I'm not quite myself. I spent about about 10 min earlier trying to figure out how to reply to a post...realised after a while u have to be signed in. lol. Man....i really don't like that my post is in the wrong place (*_*)

Not to worry, Mel.  Common mistake.  
Many of us find that when our pressure is up we have more difficulty thinking clearly.  

As I said, the numbers are merely "guidelines".  The medical literature is pretty much in agreement that anything over 25 is considered elevated intracranial pressure.  They just need to make sure there is no other possible cause for the symptoms.  Keeping fingers crossed on that front!!

Besides not being able to think clearly I have a serious case of CRS (I saw this on another forum - Can't remember s**t. Lol.

I was telling my husband last night that here in SA they are not very clued up on IIH at all. Where as all the stories I read are from overseas people who got the help they needed - and some. SA's government health facilities are really not the greatest. I looked into going private a few days ago and just laughed when I got replies to how much the consultation fees were for private neurologists. Oh well, life goes on....All. I need is a refill of meds before 13 Nov, and i'll be okay until my app.

I'm sure you could get a note for work from doctor that's treating you until you can meet with them, then get all the info for employer at next visit. Talk about not thinking clearly..what's SA stand for? LOL..FMLA will protect you if you've worked so many hours and live in the states. Some physicians charge to complete paperwork, but I haven't had that issue yet.

I would get your vision tested. Some of the changes are due to high pressure, but some can cause permanent damage including blindness..it's important that someone is monitoring it! If you don't already see an ophthalmologist or neuro-ophthalmologist, you can request referral from optician, GP, or physician prescribing Diamox.  

Hope that helps.
Take care,
Julie

Hey Julie

Thanks for the advice.

I'm in South Africa. I got a note from the dr to confirm my condition and confirm I see them every 3 months. My employer wants more info in order for them to give me 'special leave'.

They check my eyes at every app...there's always swelling in the right disc, but clearly nothing serious as they haven't taken any action. i've managed to get an app just for more meds....so that's a good thing!

Have an awesome weekend  

don't assume it's not significant just because they didn't do anything more.  we see a lot of clueless docs who don't act when they should.  if you have any significant changes in your vision make sure you don't get blown off.