Chronic Daily Headaches/Migraines getting worse - Possibly IIH??

Hi!  I was diagnosed with IIH in March when I was hospitalized in Pittsburgh.  The opening pressure of the LP was 32 or 33.  I was started on Acetazolamide (Diamox).  Of course I was followed closely by the ophthamologists.  They said there was some swelling of my optic nerves, but I had no vision loss.  At the end of March I had another LP after having been on the Diamox for a month.  The pressure was still like 31. They wanted to increase the meds but the insurance wouldn't pay for it.  Even while on the meds my headaches didn't get any better.  So they put me on Zonegran and Lasix.  From what they told me, Zonegran has Diamox in it???  I saw a neuro-ophthamologist in July and he said that he didn't think that I had IIH because he said that my optic nerves weren't swollen - something about they are very dense and that can be mistaken for swelling. 

I changed HA docs in the middle of August.  I saw a new doc at the Cleveland Clinic.  She was doubting the dx of IIH as well.  When they did the original LP they did them at the bedside.  They have you curl up in a ball and you have to strain to try and stay in that position.  She said that by straining you can get a false reading.  She sent me to a neurosurgeon at the Cleveland Clinic who specializes in IIH.  I had a LP just this past Friday.  They did it in radiology.  I was laying on my stomach.  They used x-ray to see exactly where they were putting the needle in.  My opening pressure was 26.  I am not sure if they will classify that as me having IIH or not.  I hope not.  I am supposed to hear from the neurosurgeon tomorrow (hopefully). Good luck with your LP.  Remember to lay flat, drkink A LOT of fluids and caffeine and you should do well.  Let me know how everything goes - Kayleen

Hi, Patty,

Dr. Young at the Jefferson did my LP and diagnosed IIH. When he did the LP, he drrew off enough fluid to put my pressure into the normal range. Diamox has kept it controlled since then. Dr. Young's being so astute and catching the IIH diagnosis was a true turning point for me. Until then, I could only identify my triggers about half the time, and I was averaging five days a week in bed with the Migraine from hell. After the LP, the Migraines that I couldn't identify the triggers for stopped, and my Migraine frequency dropped dramatically. After that, we were able to find effective preventives.

What kind of vision problems are you having? Do you realize that Topamax can cause vision problems? You can find more information about that in Potential Vision Problems with Topamax.

There's something else that I share with anyone who has Migraines and mentions any kind of vision problems. Really, this is something every Migraineur should know. There's an unusual form of glaucoma that is much more prevalent among Migraineurs than those who don't have Migraine disease. It's called "low-tension" or "low-pressure" glaucoma. It's glaucoma that occurs even though the intraocular pressure (IOP) is NOT above the normal range. That means that the normal glaucoma test does NOT detect it. It's usually discovered by a visual fields test.

I have this form of glaucoma. Luckily, it was discovered early due to a tiny blind spot showing up on my visual fields test. Despite early diagnosis and treatment, it progressed to the point of my having to have last-resort surgical intervention. Even then, I have lost 50% of the vision in my right eye.

The surgeon/researcher I saw at the Ohio State University told me that even though the prevalence of Migraine is only 12% in the general population, it's around 40% in their patients with this form of glaucoma. Our IOP is increased during a Migraine, and they theorize that the years of bad Migraines I had before good treatments were available actually caused the glaucoma.

So, although I'm not qualified to give medical advice, my personal suggestion to Migraineurs is to see an ophthalmologist once a year, if possible, and request the visual fields test.

Please let us know how everything goes and if there's anything we can do for you?

with a gentle hug,

Teri

So sorry to hear of your ordeal.  I'm 56, and I've had transformed chronic daily headpain/migraines since July of 1994.  Just like you, every day, the whole time I'm awake.  I've tried dozens of treatments, meds, you name it; if it has been suggested as possibly helpful, I've tried it.  If a food is often a trigger, all of them are triggers for me.  Medicated, my average pain level if around 6. 

I take Lortab (7.5/500), Anacin (1/2 pill with each Lortab), Neurontin (900 mg) and Flexeril, round the clock.  Then Treximet, Relpax and Phenergan when I sense a migraine getting out of control.  I know I live with headache rebound given the meds I take everyday, but it at least enables me to function, even though the pain is always present.  At least I avoid vomiting, and being bed-ridden when I didn't have these meds to help.  Phenergan and triptans have probably been the most helpful to keep me away from the ER, with a runaway migraine that won't respond to my usual pain meds, especially Phenergan.

Yes, it does get old.  I try not to think that it could last another 20 to 30 years.  Then again, my sister, who also had migraines all her life, suddenly they stopped when she got to her early 60s.  So that's my hope.

Some of us belong to the 2% of the migraine population that don't respond well to any treatments.  I've had a good deal of talk therapy to help me accept that I live with this disease, and to change my vocabulary about it.  I used to say that I suffer from migraines.  Now I say I live with migraines.  It may be a small victory, but for now, it has been one of the most valuable, other than the Phenergan I mentioned earlier.

I do wish you well in your quest.  You are not alone!

First, please accept my apologies for not welcoming you sooner. Hello, and welcome to MyMigraineConnection.com!

I'm curious why the doctor doesn't  just do an LP and get an answer for you on IIH? Would that be better than just guessing about dosing medications such as topamax? Topamax is one medication I personally wouldn't want to just keep upping to see if my Migraines get better. In fact, a doctor tried to tell me the same thing once  - "just keep upping the topamax til the Migraines go away." I don't think so. An interesting article you may want to share with your doctor is: The ONLY definitive way to diagnose pseudotumor cerebri. I see you've read our other information on IIH, so I won't give you the link again.

I've been told that medication alone isn't enough to initially treat IIH. An lp draws the CSF (cerebrospinal fluid) into normal range first, then medications are added to help keep it within normal range. Sometimes this works for people, other times shunts or stents have to be used for drainage. Diamox, methazolimide, lasix, and my personal favortive - weight loss (because no thin people have IIH -wrong!) along with some other medications are currently used to treat IIH. It can go into "remission" or be tricky to manage. Have you been over to the IIH research foundation? They seem to have lots of good information on IIH.   

If someone has vision issues, and may have IIH, then topamax would not be my first choice medication. Between the problems with this medication and IIH and optic nerves, it seems a bit to risky, in my opinion.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

PS - Please keep us posted on you are making out, and let me know if I can help you further, ok?