Hi,

I have been having headaches, nausea and joint/muscle pain for about 6 weeks now. Last weedend my headache became severe and my left eye had some visual defects. Over the years some strange symptoms have come and gone. Anyway, my headache and nausea became severe last weekend and I went to the Emergency Deptartment and testing was done, the only abnormal finding was a spinal pressure of 29 (290?) and they said they were sure I had Benign Intracranial Hypertension. I saw two neurologists yesterday (one was a [email=#@%$]#@%$[/email]) and one that I feel is going to help me find out what is going on. I felt immediately better after the spinal and ALL of my symptoms completely went away for two days but in the ED they did not see any pappillary edema so the thought is I don't have IH. I am going to the eye doctor today and will get dilated to see if there is anything they can see.

I was so grateful to find this site and the foundation where I could get information that I feel is accurate. I am in the Heathcare field and can't believe the misconceptions I have heard already. Like I can't have IH beause I am not overwieight, the ED docs don't know what they are doing, you can't have IH without papillary edema, ect. All I can say is I cried when I read about IH and I knew I'd found the answer to my crazy seeming unrelated syptoms. I felt immediatley better after the draining of the excess fluid and it lasted two days but sad to report my headace is back today.

Thank you all for sharing your stories. I have loving and supportive friends and family but I felt comfort by hearing your stories and don't feel so alone, I'm sure you all understand. Anyway hello and thanks for being here.

I will let you know if by some miracle I don't have IH and "only have migranes" BWT that's my humor lol

Nancy

Hi Nancy, welcome to the group! I'm sorry to hear it's been such a long and frustrating journey, and yes, unfortunately it is pretty typical. IIH is rare and not lethal, so I think they just touch on the basics..overweight women of child bearing years presents w/ these symptoms it's probably IIH tell her to lose weight and refer her to neurologist..if they don't fit in the box, then it's a migraine..lol. If they knew anything about IIH, they would realize how random this disease really is. It affects people of all ages, genders, and sizes. It affects everyone differently and everyone responds differently to treatment. That's part of the reason it is so difficult to diagnose and treat. It's my understanding that they basically use the results of spinal taps to diagnose IIH at this point..if your symptoms go away once fluid is removed then it seems like a no brainer to me, but doctors still get caught up in the numbers. Everyone's normal is different and they need to treat us as individuals. I think a lot of times the medical community is looking for the easy fix, and this just isn't it. I'm sure you know better than most w/ your background in healthcare.

I'm glad they're at least doing the tests and moving you forward..hopefully the eye doctor will have more insight! You may want to keep a symptom log to chart your progress and changes..that may help them determine the IIH. Look through the Useful Guides and Print Outs section for more information.

Keep us posted!

Julie

hi Nancy;
don't let those idiot docs try to tell you you don't have IIH; YOU DO. and how do they expect to find the papilledema now that they have brought your pressure down with the tap?? that exam will not be conclusive if it's negative. they are completely missing the boat on the weight thing also. sure, obesity will make it worse, for many reasons. but I was STICK THIN when I was at my sickest with this. weight may be a factor but it is not always. if a doc tells you you can't have IIH, then ask them for a referral for a doc who knows more about IIH than they do. because there is such a thing as IIHWOP (IIH without papilledema, look it up on pubmed) and I have it. the headache pattern in migraine can be indistinguishable from IIHWOP. also, I have found papers that suggest that ICP is up in migraine. so what is migraine, anyway??? please know that you have discovered the cause. 29 is HIGH. now you have to struggle like the rest of us to get your docs and the people around you to understand this and accomodate you; it's a bear. I'm a doc and I think it's the only reason I've gotten any attention. my docs can't argue with me because I am always bringing them scientific papers on things they never heard of! do your research and get in their faces!
(it's 29 cm of water, and 290 mm of water, just depends how you express the pressure measurement)

also, FYI, if they are as clueless as my docs, they may not get the right studies. it seems clear to me now that a full eval looking for underlying causes includes a brain MRI, MRV, and if negative, a neck MRV.

good luck!
Deb

Hello Nancy, and

How well I can relate to your story. It can be so darn frustrating!!! Why can't these docs just admit they don't know and send you on to someone who does, or at least might know about IIH.
Deb is absolutely correct. Many of us have elevated intracranial pressure (which is what you have) and do not have papilledema. Also, pressures between 20 and 25 cm of water are considered borderline (my pressures have been between 22 and 24) but anything over 25 is considered high pressure. Of course, there are exceptions, but I think you get the picture. And getting temporary relief from a lp is classic. The trick is to get started on meds to keep the pressure down right away ASAP after the lp. That seems to help keep the pressure lower longer.

Let us know if tree is anything we can do to help you get onto a better path. BTW, my doc is willing to talk to any other docs out there about IIH and her findings (she is a Neuroradiologist). She is the best!!

Thanks to all for the replies. I had a horrible day yesterday and saw the eye doc during the headache- no papilledema. He was very encouraging and ordered a peripheral vision test. I called the neuro and will start on meds-hopefully tomorrow, he has ordered a MRA and MRV so it looks like I am on th right track. Great suggestion on the diary and PubMed, I have browsed some but will look more. I too feel I was able to communicate better due to the fact I am in medicine but it sure wasn't easy.

Thanks again

Nancy

Hi all,
Picture here is a picture of my daughter right before becoming very ill with IIH. So much for obesity as cause..... She has never weighed more than 110 lbs.

The initial thing that got the doctor on the right path was when she told him how GOOD she felt after the lp. (No pressure reading had been done!) She had been having severe headaches for over a year. They looked at her like she was crazy, then a light bulb went on.... She was sent to a neurologist. Another lp was done with opening pressure 35. Hmmm. IIH anyone? First neurologist said, "I don't believe the reading. It was just a mistake.... AND there is absolutely nothing wrong with you." (Crazy making, anyone?) Second neurologist said IIH and started meds. A lot of ignorance out there. Glad this site exists.

Sarah's Mom