Hi, Leanne,

I can't remember, do you have a neurologist? You must.

One question to ask is who will handle the following, your PCP or neurologist?
- pain meds (should be neurologist)
- side effects of meds (my internal med dr/pcp handles metabolic acidosis, stomach problems, etc. from meds)
- emergency infusions (some pcp offices can do them)

Another question is whether he will be periodically talking to your neurologist to stay up on what he is thinking, and the course of care. (This is important in case you need one doctor to advocate for you with the other. If they've never spoken before this would be tougher.)

Another question - how the IH meds and/or procedures might have an ongoing affect for any care you are getting from him, if any, and how he thinks the coordination of that could best happen between him and your neurologist. An example is if you are trying to get pregnant or have PCOS, which both may have issues with your meds and/or IH.

In his opinion how often should you be checking in with him to review status and troubleshoot any issues? An appointment every 2 months? Only when you think you need one?

What you give your doc as far as info depends on what you know of your doc. Some appreciate it, some are offended. Hard to tell which category somebody is in. They should read it anyway because they rarely know anything much about IH, whether they say they do or not. A short list of websites and research studies couldn't be too offensive, in my opinion. He can toss it if he wants, look into them if he wants. The IHRF site is a must for the list. Can't think of important advanced articles right now. Somebody else chime in?

Oh! Reread your post. You don't have a neurologist!

First question and most important question - can you refer me to a good neurologist who specializes in headaches, or a neuro opthamologist? It is a rare disease, only 1 in 100,000 have this it, so someone at a major teaching hospital or regional neurology center would be best, but anyone who is good would be welcome. If you don't know of someone right now would you be willing to ask around? Can I call in after a few days and see what you were able to dig up?

Second question - if I can't get in to see the neurologist within a few weeks, would you be willing to make a call to see if it helps get me in quicker? (insert reason this is important here, like severity of symptoms and dangers to vision)

All the rest of the questions come later.

What should you insist upon?
- The referral to a headache neurologist or a neuro opthamologist
- Refills of the meds the ER gave you until you get in to see the neurologist. (did the ER give you Diamox, pain meds?)
- Pain management is a must.

Short term bring in a one-page fact sheet and the link to the IHRF site, noting it has resources for professionals. Also bring in any chart notes from the hospital, if you have them, or call and get your PCP's nurse to get them faxed to her stat.

Things that may be useful
http://www.ihrfoundation.org/intracranial/hypertension/info/C70
http://www.ncbi.nlm.nih.gov/pubmed/2679506


P.S. If all else fails in finding a neurologist call the IHRF and see if there is a doctor in your area who is in the registry as treating IH.

Yes. My substitute PCP if u will blew it off like i dont have IH only migraines. He is going to try to get me set up with a new neuro buthe have me a script for nuerotin. He. Didnt listen to anything i said. Ugh!

Neurontin and that's it? That's a migraine preventative. Lots of people have migraines along with IH but that's not the point here. You need your IH treated.

Do you know what your opening pressure was? Are you having problems with vision?

I went to AN ER near by and the stupid quack said he didnt know what was causing my headaches. Even though i told him. So this sub. PCP (my actual PCP is on vacation) is going from what that ER said not from what my nuero.said. my opening pressure was about 21 i think. But my headaches tyen are no where near what they are now. And yes. I am having terrible vision probs that ive.never had before. Blurriness. Double vision. Shades of grey and ofcourse the floaters. The rimging and whooshing and beating in my ears. This is becoming dibilitating! Today is the first day all week i have.been able to do anything

Hi and welcome leaannjoh.
I am with Sea about the neuro, you must see one soon!
You need to have a plan of action to deal with all your symptoms.
Have you seen a Ophthalmologist yet?
You need to find out if you paps, papilloedema, swelling of the optic nerves. Losing our sight is the single greatest threat to us.

Can I ask what position were you in for your lp?
And, your opening pressure was 21?
I m a bit surprised that they diagnosed IIh with this number, not that I don't think its high enough, but so many of us have higher readings and cant pin the drs down for a diagnosis of IIH.
Any thing we can do help.just let us know, ok? Cath.

Leanne,

Your vision issues worry me. If you can't see a neuro opthamologist, see a regular opthamologist very soon. Tell him what you were diagnosed with and your vision problems. They'll test your eyes for paps and a whole lot more.

Your eyesight is precious.

My optho is the one who found this believe it or not. I was 18 and he noticed paps and sent me to my nuero. I have AN appointment with him on the sixth. Both er docs say my optic nerves look fine. I only notice this when i am having headaches. I can say this now because for the first time all week today had been a relativly pain free day. I was actually able to get out of bed and function like a healthy person. When are starting with a regular office check up and going from there bc of my insurance dillema. But this doc i seen today left me in tears. I was so upset. I am tired of people who are not familiar with me and my case not listening to me! Ugh!!!

Yes. My opening was 21 . But now i am experiencing more.pain. more frequently was well. I am noticeing more probs with my vision than before. When i was first diagnosed i had seen floaters and feel blackspots. And sometimes its hard to see straight and it gets blurry sometimes. The pain sometimes is that of a post puncture migraine. Which is a beast all of its own. There are.times when i can not stand upright with out holding on to something. I get dizzy my knees give out and down i go. I can even be laying in bed and get dizzy there. I get nauseous which i never did before. This time everything is much worse. I think the fluid pressure is higher. I am working on getting to see a neuro again. If my PCP wont do anything i can find a new one but i know my optho will help me out. He. Found me my first neuro. I cant stand how people can just rule it out was just a headache because they cant see anything else without a LP or MRI. I cant stand how doctors think u.know nothing because you never went to med school. Ugh! But yes on the sixth i am going to see my optho. At least he knows my history and can refer me to someone good

Leanne, in the mean time, can you ask your local dr for Cerc? Its is brilliant to help you with the dizy spells.
I also take Stemitol with it as my stomach reacts badly to all this.
It gets me thru the hard days.
Its a easy drug to get , its not addictive nor all that dangerous. Cath