Hi Soccergirl,

I'm so sorry your going through this. It really sounds like your pressure is up in my opinion. You described just the way I feel when my is at its worst. You said you're already had and LP, but when was your last LP if you don't mind me asking?

Good luck and I hope you find some answers!!

Becky

I was able to see my doc. today. He has me scheduled for a CT in the morning and another LP tomorrow as well. my last LP was four months ago. I had 13 of them and this isn't getting better. I just saw my eye doctor and my eyes are not getting better but they are slowing declining. I've lost weight like they have asked me to. I've never been terribly over weight but even with the weight loss and an the diet change I still have flare up that make me so very sick.

Hi soccergirl78,

I'm so sorry you are not feeling well, I hope you feel better soon!

Have you tried taking Diamox (Acetazolamide) for IIH treatment?

-Amethyst

Sorry you are feeling so crappy. Maybe a med change is in order? Perhaps something else will work better for you. Not sure what the point of another LP is...? Hang in there, hope you find something that works for you soon!

My nuero will not prescribe diamox Bc I've broken
Out in a rash to sulfa antibiotics.

Do you have a shunt or has the topic came up? How close are your LPs being done, or what time frame have the 13 been done in? LPs can be used for therapeutic reasons but, so many LPs can be hazardous also, possibly leading to acquired Arnold Chiari Malformation where the cerebral tonsils start descending from the base of the skull leading to other neurological issues. I can't remember the name but there are other drugs that can be tried as well that are not sulfa drugs. One of them is Lasix, that I know of. I know there is someone else on here that is allergic to sulfa drugs, maybe they can give you other suggestions. Best of luck to you. Hopefully they will come up with something to help you. Ask your neuro for a shot, but you will need someone with you, to help calm the headache down. They can also give you ax for prednisone that may help also.

Hope

That's right, I remember your stubborn neuro! Would certainly be nice if he'd reconsider trying you on it before you have to consider possible surgical options, his information is just outdated. Maybe you could sign a release? If you are getting the virus everyone else has that could be affecting your PTC too - not necessarily one or the other. I can't remember if you have any clues as to what might have triggered or be contributing to your PTC? Just wondering if there are any other factors you can try to address in order to get your symptoms under control. Really hope you find some relief soon!

So on my release papers from having my LP... It says I'm allergic to sulfa drugs Bc they can not rule out which true allergy I have. I was taking tamiflu, cipro, batrium and they all over laped one another. The only drug I took all the way is tamiflu. Cipro and batrium I took for like 5 day and felt weird and stopped. I took the 5 days worth of tamiflu and was in a complete right after the other drugs and broke out in rash. So the doctors said all the meds were in my system at one time

HHugel- my neuro wants to do monthly Lps on me. I refuse Bc I think that's just to close. It's been 4 months since my last LP. It's like my PTC flares up. Sometime I can go 2 months w/out having an LP and the longest I've been is like 6.5mons but usually on average it's every 3 or 4 months. He has talked about starting me on lax is but hasn't.

When I went to see my othomalogist I took my parent with me. That doctor suggested diamox or a shunt Bc my eyes where worsing.

When I saw my neuro for the horrible headache the other day they were like oh you saw the othomalogist. I was like yes I did. But I can't recall everything for you at the moment Bc it's not a good day my head is splitting. The doc is like I don't believe you... You can remember some. I said yes you are correct but not everything your asking. Grrrrrrr

At the hospital my blood work came back all good- thankful for that.
But the doc doing the LP said I had to lay there a bit longer and be extra patient Bc my neuro order more labs. To be drawn from my spinal fluid so he had to draw more off of me so I would not have to come back for a second one for a while. Wondering what they're testing for.

I would absolutely shop around for another neuro. He is not keeping up to date on best practice standards for IIH, in regards to the LPs or his mistaken avoidance of Diamox. Since the other meds aren't working for you it is more important that you get to try it as a standard treatment. If there is a neuro-ophthamologist you like they could make for a good replacement too. This is your brain and vision as well as your quality of life! There are better docs out there for you (in my humble opinion, of course). :)

RN, I've considered changing docs or looking for another one several times... But all the Neuro docs work in the same facility. My worse fear is that they would talk about why I change to one another if I did. I had my LP Friday an my headache got so much better but it has slowly come back. Tonight it is back. It is in my shoulder blades, neck, back of my head and ringing on my ears. Sometimes I'm nausea.

Thks is all so crazy, this medical field needs to get their act together, when I self treat and go to PT for this Gosh awful Thoracic Outlet Syndrome and winged scapula I feel wonderful!
My daughter has TOS as well, they have found her compressions in brain, neck, arm. Everyone here that exeperiences pain describes what we go through. I believe the TOS came first, im all good now on the IH front. My daughter does not, nor never has had IH, only pit tumors. They are not the same thing, but there is a connection. The lymph, glymph, and blood not flowing correctly with my kiddo and myself.
I remembered the one young man that used to come here, his dad is a Dr., he has compression of blood flow at c1. Lost lots of weight amd he felt relief, he was not fat at all.
I really don't have a point other than maybe getting MRV? Lookkng for obvious compressions and blockages. Because when I was symptomatic with ih I was suffering with hindbrain herniation that the NS's argued was ACM1, but I had previous imaging that proved otherwise, and was told several times if I had a hindbrain herniation I would be dead because people don't survivie that.
Now that IH is not an issue my cerebral tonsils have retracted back into skull. Hmmmmm, they have no explanation for that other than oh oh the measurememts were wrong in the first place, then I always asked on all previous mri's are you telling me several radiologist to include 2 of thos hospital's are wrong????? See Drs are wrong many times. When I discuss this stuff with the vascular surgeon whom claims to be the top TOS specialist in the US, no understanding how IH amd TOS are related. Sad really.

I agree with RN4408 you need to find a neuro doc that at least know the standard of practice. LP's are not the standard anymore. here is an article for you to show meds and dosages: http://emedicine.medscape.com/article/1214410-treatment#aw2aab6b6b2

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1849872/
By the way, many people with TOS have all IH symptoms, how do we know they dont have paps, or aren't on the road to develop it? I think these Drs are all wrong about what both are, how they develop, and how to treat it. I dont know about anyone else here but my body has been used and abused, I was a cheerleader, softball player, played ruff tackle football with men, and fighting when young, I was always messing myself up. This article is old bit talk about the symptoms with TOS, just use your find ln page feature to look for "vision" issues.

Thank y'all so much for y'all's input. I'm gonna read this and probably ask questions.. Cuz my mom and I are at a loss but difiantly know something has to change.