Welcome to the club nobody wants to belong to.
If the measurenent you speak of is grading, you most likely have Papilledema. It optic nerve and disc swelling, the highest grade is a five, lowest goes .01, then no swelling. Let em do the LP, its purely diagnostic.
See here
http://webeye.ophth.uiowa.edu/eyeforum/cases/papilledema-grading.htm

I could overwhelm you with information but we will let you just ask anything you want and need. The best part of our group is a fellow member/sufferer is a highly intelligent Dr.
plus, many to include myself have and do manage this quite successfully with lifestyle, diet, and discovering the cause which we will help you do.

Ask away,
welcome again
Mary

Thank you Mary. And for the link.

Welcome, and sorry to hear about all you've been through! And I love your Dory pic. :)

As Mary said, the numbers likely refer to the severity of your papilledema. At those numbers your papilledema is pretty significant - but it could be worse.

So...did the LPs you've had in the past show an elevated opening pressure?! I'm a bit puzzled how they put you through so many LPs without any answers sooner!

There is some mixed data on whether Diamox needs to be avoided with a history of sulfa allergy. I have had an allergic (hives) reaction to sulfa in the past but tolerated Diamox just fine. Might be something to ask more about, since Diamox really is the first line of treatment for PTC.

Good luck with the LP! You've probably had an MRI along the way as well?

Yes, I've had elevated opening pressure before by an ER doctor. He had to go change his scrub top is what my mom told me. They admitted me but the hospitalist and the nuero could not agree between the findings back then between the opening pressure and CT of my brain if it was PTC or just a complex migraine. They gave me they routine 3 day treatment for migraine headache and released and about 3 months later I was back horribly sick again... to the same hospital. Repeated the same test. No answers. So when I got released. My director from my college internship program kicked me out so I moved back home with my parents and I finally found a great doctor here.

I think everybody covered everything, I just want to say WELCOME!

hi SG:
1) I am allergic to sulfa and tolerated Diamox just fine in terms of allergy. made me too sedated though and I couldn't take it.

2) I've never had papilledema so listen to Mary on the grading system as I am not familiar with it. papilledema is swelling of the optic nerves, which is what is causing your visual problems. however, visual problems can occur in IIH in the absence of observed papilledema. you can go to ihrfoundation.org for more info.

3) did you have orthodontia in the past and if so did you have teeth removed? I'm wondering if you fit a theory I have which I'll explain later.

4) those docs who dropped the ball on your elevated opening pressure, I would consider complaining to the hospital administration, the medical board, and maybe even suing them if you end up with permanent vision loss. if he had to change his scrub top then your ICP was very high. get your records and find out the exact numbers. I'll look at them for you if you want/don't understand them. here's a question for you: if you were a MAN, do you think your diagnosis would have been delayed? there are only a handful of men on this board but I haven't heard one story of delayed diagnosis from them. my diagnosis was delayed for ELEVEN years and many other women here have been treated the same way. I had to ask for my own LP. 11 yrs prior I brought notes to my doc that laid out the symptoms of IIH and she didn't bite. I'm a pediatrician so that's my excuse for not being familiar myself with the symptom complex. there is just not enough awareness in medicine of our illness. my mother has the same illness/symptoms I do, and she is 72 and never been diagnosed, has been ill since she was 17.

5) trust yourself. keep asking questions and don't accept their answers if they don't seem right to you.

6) do you snore or have trouble sleeping? do your symptoms seem to be worse when you wake up?

fyi this is my story:
http://www.ihaveiih.com/t1168-i-m-doing-much-better-now

I to want to welcome you to the group no one wants to be a member of. These ladies have been a wealth of info and support. They have gotten me asking the right questions and to where I can predict the next move my doctors are going to make before he makes it. It takes a lot if fear out off having PTC or IIH. It also helps avoid a lot of pain and unnecessary treatments and procedures. The girls have covered the basics for now, but feel free to ask anything. I have found diet has been key and experimenting with what works for you. I first started experimenting with what some of the folks on here do and kept modifying until I found what works for me. That is no caffeine and no vitamine A. For a while exercise was a lifesaver now things have changed and exercise is a trigger. Your body will tell you what works and what doesn't, keep experimenting and keep learning and eventually you will find the right balance of meds, diet, exercise, and the right doctor and you will stabalize.

Sophiasmom, quick question, what is the new theory on orthodontia and tooth extractions? I fall on that category. Four permenanet premolars removed due to crowding as a preteen. You have me curious as usual.

Sophia,

Yes, I've had to have wisdom teeth removed.

I do not snore at night. my parents say that I somewhat talk in my sleep. I woke my self up from what I consider a gasping sound then I quickly go back to sleep.

hey, it's my theory alone. I haven't seen anyone else connect these dots.
the dirty little secret that modern orthodontia is in denial about and may never admit, is that it causes sleep apnea. which shortens people's lives by 20 years. the human airway is tenuous at best. one of the biggest causes of OSA is tongue collapse in sleep. if you remove teeth to straighten them, you make the space for the tongue smaller. the tongue has nowhere to go but back into the airway. pushing upper teeth back with headgear as I had done, makes the lower jaw go back also, and the tongue is attached to the lower jaw. as the airway narrows, the neck and head position changes. you get a slightly tilted, forward head posture. this can lead to Cspine degeneration over time, as it takes a lot of work to hold the head upright on the neck and especially in the altered position we adopt to keep the airway open, which is always going to be first priority for the organism. (it will also alter spine position all the way down and when you see people who are all hunched over with their heads forwards, this is directly caused by the narrow airway. I don't know any docs who get this. but there are studies that show direct correlation of the degree of forward head posture to the severity of OSA) if you do this while awake, you know that in sleep all collapses and we are paralyzed in REM sleep. this causes sleep apnea. sleep apnea itself causes IIH. it increases ICP. but what does narrowing that space in the neck when you pull the tongue back onto the jugular veins do to CSF drainage? it has to decrease it as jugular venous resistance increases. I hope you are following me. I think that in some of us with predisposing anatomy, modern orthodontia may trigger IIH to come on or be declared. I got a lot better when I had jaw surgery to move my mandible forwards. funny thing is I still have sleep apnea. I still drop my oxygen to 91%. so I really think it was the jaw position and effect on my jugular veins that has been the primary problem.

re: exercise. are you OK if you just make sure to not hold your breath or grunt? it might be the valsalva making things worse. what if you just walk a mile, is that a problem? I find it clears my brain fog. but before my jaw surgery I couldn't do anything without feeling lightheaded. I think walking was OK though, but I wasn't well enough to notice if it was helping. now I am so much better that if I'm a little off I can pull it up to normal.

Thanks for the welcomes Sea lham.

see reply #10 above.
if anyone reads this and thinks that dental extractions with orthodontia may have been a pre-existing trigger for their IIH, there is only one orthodontist I know of who truly understands the consequences of extractions on the human airway and has had the courage to do something about it. he can open your extraction spaces to expand your dental arches, putting in implants to restore your mouth the way it should have been done in the first place.
http://www.facefocused.com/ReOpen.html
Dr. William Hang is a genius. he is the one who encouraged me to have the jaw surgery which saved my life. people travel from all over the world to see him.

I think I follow you. I have an appointment this next week for a LP. And from talking to all of you and just searching this site it has given me more questions to ask. I just need prayers not to be nervous about the LP.

Hey sophiasmom, I am totally tracking with what you were saying. I am going to try to print this post and show it to my neuro at my next appt in the 27th as there is much that applies and we have yet to have the OSA convo. As far as the exercise, walking is better but will still trigger headaches now, just not as severe. Lifting, more strenuous cardio, and anything that has positional head changes are out of the picture now as that will cause dizziness during with a mild band type headache during but about an hour latter and into the next day full pressure headache. Walking a mile to two miles at moderate pace equals dizzy after and mild to moderate time limited pressure headache for an hour to two hours after.

make sure to never hold your breath while you are walking. if your blood pressure goes up this can trigger an increase in ICP. I take beta blockers religiously to keep my BP from spiking as I've noticed that's a big factor. I try to keep it under 120/80. get a cuff for home and follow it, see if it seems to be spiking and affecting you, if so ask the neuro about that. I've had a discussion with another member where we concluded that perhaps these BP meds can decrease central venous pressure and therefore reduce the pressure in the internal jugular vein which will allow better CSF drainage to keep ICP lower. this is actually the area of the problem in IIH; it's in CSF drainage into the venous system in the skull. this cannot occur if the pressure in the venous system in the skull is too high. there must be a gradient for the pressure to drain from CSF to skull veins to jugular vein in the neck. if you reduce central venous pressure this helps keep that gradient functional. if there is damage to the blood brain barrier then BP spikes can directly increase ICP. I think this has to be part of IIH. there is evidence of damage to the BBB in OSA.

SG make sure they do the LP under fluoroscopy.