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

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Mon, September 21, 2009

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LP was normal, CDH's and migraines continue

Well, I've been trying everything I can think of and am in the process of setting up a Lumbar Puncture to see if I have Idiopathic Intracranial Hypertension (IIH). I had botox injections and did not get any change in my pain. I have a headache every waking minute of every day, at about a 6, which no pain med has helped with. My rescue med helps if I get a worse migraine but these daily headaches are getting very hard to live with.

Topamax has helped with the migraines that I get a few days a week, sometimes less but it hasn't helped with the Chronic Daily headaches. I'm up to 450 mg of Topamax, my doctor really thinks I have the IIH and told me that we should start upping it to see if it would start to help but it hasn't started to help yet. I'm going to the Thomas Jefferson Headache Center in Philadelphia.

I needed to get a job so I looked for one that would be relatively quiet and not too stressful and I found one which I started last week. It is working out ok, but it's hard because I'm working every day with a pretty bad headache. People can't tell but it's there.

I've had MRI's and nothing has shown. The weather patterns are my biggest trigger. I just don't know what to do.

I was reading Nancy Bonk's post and saw that she had a fall that started her problems, I do remember I had a nasty fall on ice back around the time that my headaches began - back 7 years ago - I've not had a day/minute without a headache since then. But I'm not really sure if I didn't have the headaches before the fall.

Any one out there know much about IIH and it's treatments?? Living with it??

I turn 50 in a few weeks and really don't want to continue living this way, it's wearing me down. I've tried probably 40-50 medications and nothing has given me relief from the daily headaches. I tried the 3 days of infusions at Jefferson and it too did not work.

Any ideas??

Thanks. Patty

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headachelady

9/22/09 6:25pm

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

PinkPatty

9/23/09 7:27am

I am going to do it with a neurologist and I think they said it would be with me laying down. She does them a lot and they are well known in the field of headaches and have done lots of research. I am hopful they really know what they are doing. She did mention Diamox and diuretics as treatments along with High levels of topamax and weight loss. I have a condition called Neurocardiogenic syncope which causes me to get dizzy easily and I can pass out easily which can cause the treatment with diuretics to be a possible problem but I'll give it a try if I end up having this problem. I guess this would explain the never ending pressure in my head. I havn't heard back from them about the date for the LP yet. It needs to be prequalified with my insurance but should be soon.

I did go to an opthamologist about 3 yrs ago and they said everything is fine with my eyes. My vision is worse than it was and getting worse every year but that happens with age also so it is hard to know if that's all it is or if there could be more to it.

Thanks for your info.

Patty

headachelady

9/23/09 10:08am

Patty - Hi! If your vision is getting worse I would INSIST on a referral to a neuro-ophthamologist. One of the most telling signs of IIH is the presence of papilledema (sp?) which is swelling of your optic nerves. This can cause permanent vision loss. If you do have IIH, you will need to be followed closely by the eye people to be monitored for this as this is the biggest complication. Make sure you let your neurologist know about your vision. I don't want to alarm you, but this is so important and can be a serious complication from IIH. Let me know how everything goes - Kayleen

PinkPatty

9/24/09 8:24pm

I was curious about the drinking lots of fluids and caffeine for the LP. How does this affect it? I had never been told this before and am curious about it.

The doctors office called today and we are trying to come to a date where my husband can drive me to it, I can get off work for it, and the doctor is free for it. Probably will be in late October. I will let you know.

Thanks. Patty

Rhiannon

2/18/10 1:11am

I'm just curious about the pressures you mention for the LP. I had an LP in April 2007. I've always been confused about this and can't find anyone that can clarify. Nor can I find a website that speaks in plain enough English for me to understand (and I understand quite a bit about medical things).

My LP report says that my opening pressure was 100, then it says 110. I know one of these must be a typo. But you're talking really low numbers and yet my opening pressure is triple digits? I was on my side and my stomach for this procedure.

I just can't seem to figure out what numbers are normal for pressure, and I can't seem to find anyone that's ever had a reading of numbers in the hundreds. Everyone's always talking about two figure levels.

Of course, I can't get a doctor to listen to me when I talk about what my head feels like, so that doesn't help. If you could give me any sort of insight into this dilemma I have, I would greatly appreciate it. Thanks for the help.

Rhi

PinkPatty

2/18/10 8:21am

Hi Rhiannon.

When I had my LP, they were looking for a pressure between 10-20. Mine was at 15 so I was fine from that standpoint and IIH isn't my cause for headaches. I was on my side the entire time, I don't know if positioning changes the numbers but I wouldn't think so. Maybe your test was something different? I'd ask, I think 100 or more would have been really high. If your doctor doesn't listen, ask for a copy of your records, including this test result - and find another doctor. Bring them these records and have them take a look at the test result.

I'm just telling you that is what I'd do.

Good luck, I've gotta go to work.

PinkPatty

Teri Robert

2/18/10 9:13am

Doctors use different scales. 100 on one scale is the same as 10 on the other.

Teri Robert

9/23/09 11:01am

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

PinkPatty

9/24/09 8:24am

My doctor at Jefferson is Dr. Nahas, I believe she is newer and she seems very thorough and up on IIH. She told me immediately that she thought this might be my problem. I will discuss the vision thing with her on my next visit. I don't usually need my glasses, my vision isn't very bad, I actually just started working at an optomotrist's office 2 weeks ago which is a bit ironic. I noticed though that my vision is worse some days than others - there are days where I really have hard time focusing. I had great vision years ago and then it started to change and I will have to talk with her about it - I do know that my prescription is not very strong compared to others and I can function without correction pretty well.

I was wondering if the Diamox is something you take instead of Topamax? Dr. Nahas mentioned upping Topamax possibly as high as 800 mg if I have IIH and we did not discuss Diamox. I am thinking I will discuss this with her. I am up to 450 mg and have no differnce at this point but am very tired. I know she won't want to treat IIH until she does the LP. I was curious about how effective treatment of IIH was or if you still have daily pain even with treatment. What the future holds if the diagnosis is IIH.

Thanks for the info.

Patty

Teri Robert

9/24/09 10:00am

Diamox is one of the medications most often used for IIH. So, yes, I gues you could say I take it instead of Topamax. I flat refuse to try Topamax again because I tried it before for Migraine prevention, and the side effects were intolerable.

Please keep us posted?

Teri

Eileen Gray

9/25/09 1:27pm

I do not have IIH but I take Diamox as a preventive. My specialist felt it would help with weather triggered Migraines. It has, but I think it is konking out or needs some tweaking.

I just had my LP last month - the actual test went so wonderful.

Good luck to you! I wish you all the best! Let us know how you make out!

PinkPatty

9/25/09 4:48pm

Does diamox have the side effect of possible weight loss like topamax? or is it one that has the weight gain problem?? I was wondering.

When I went on topamax I lost weight - about 20 lbs but it's not done that ever since. I tolerate it ok but it makes me very tired and it doesn't really do anything about the chronic daily headaches or the headaches that are due to the constant weather fronts - which I am extremely sensitive to - I know when weather is coming better than the guys on TV. I've been that way all my life. I am curious why the doctors never mentioned Diamox to me before. I will have to ask them.

I do have this thing called Neurocardiogenic syncope which makes me more susceptible to feeling dizzy often and meds that can cause dizzyness (which most meds say they can cause) can be a problem. Topamax seems to help me with this a bit or at least leaves me less able to notice the dizzyness.

But Diamox could do the same - it could be the anti seizure components that work differently on me or something. I would be interested to see though.

Do you know if the extreme sensitivity to the Barametric pressure and the weather conditions is common for people with IIH?

Thanks for your insight and help.

Patty

conradplan

9/27/09 1:25am

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!

Nancy Harris Bonk

9/29/09 8:36pm

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?

PinkPatty

9/30/09 7:32pm

Hi Nancy. Thanks so much for the response.

I saw Dr. Nahas today. I discussed the LP and medications and my options today. We are having trouble getting the LP scheduled because she doesn't have much availability to do it within the next month and at this point I'm looking at late November or later. I am going to get the referral they need and they are going to book it for the first available date.

In the meantime she agreed that I had gone high enough to know that topamax isn't helping me much anymore and she agreed to have me switch over and try Diamox. I'm tapering off of the topamax and am going to start the Diamox and see how I am doing. She has been trying to get me to consider admitting myself for a 5 day stay in the hospital for infusions and they would do the LP during that time. I had done the 3 day outpatient infusions in June but it didn't touch the headaches. I feel that if the LP shows that I have IIH, I shouldn't need the inpatient stay - she agreed. So for now I am not planning on a hospital stay.

I also am trying a muscle relaxant which I can take for a week or two and then as needed to see if it helps at all. I have some issues in my neck that can be aggravating my headaches and this could help although I've tried other similar meds in the past and they've not worked but I'm open to trying whatever will help.

She also gave me a prescription for the new imitrex injectible. The imitrex pills that I tried a few years ago did nothing for me but she feels this may work. The pharmacist needs to order this and the price before insurance is around $1300 for 8 doses (pretty hefty). I'll be interested to see if it works. I was using relpax which works occasionally, not always.

My only option for getting he LP sooner was to have an intern do it at the hospital and I'm not really comfortable with that. She says they do know what they are doing but I know it's a touchy procedure and I'm not sure whether to trust doing that or not. Does anyone here know anything about Jefferson's interns??

Thanks.

Pinkpatty

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

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