I have been diagnosed with IH for many years. My opening LP pressure is generally anywhere from 26 to 35. Some people and some doctors claim that this is an incorrect diagnosis because my optic nerve is not affected. But the IHF agrees with my doctors saying a person with high intracranial CSF pressure suffer from this problem. I do get some visual symptoms but thank heaven have not ever had problems with the optic nerve.
I have been on Diamox for many years now and it doesn't seem to make a difference in my CSF pressure. My new doctor at MHNI has raised the spectre of shunt surgery. I am really at odds about it. It is rather scarey and I am concerned about complications after surgery like draining too much fluid causing low pressure headache or other problems, or having to have the sunt replaced because it gets blocked.
I am obese. I have had LPs when I have lost weight and that didn't make any difference in the pressures. Apparently it is not my weight that causes this....although even when I lost weight I was still morbidly obese. Weight is a constant struggle for me and my insurance will not pay for bariatric surgery unless I prove I have jumped through every hoop available. (I HAVE jumped them but did not keep records to prove them not knowing I might need records for insurance at a later date.) Even then they may or may not approve the surgery. I am wondering if bariatric surgery may be indicated and if the insurance would cover it for this illness.
I am over 50 and have suffered migraines most of my life. I don't have a single day without migraine, just varying degrees. I often get long term migraines lasting a week or two at 4 - 5 on a scale of 5. The worst headache I have ever had lasted 32 days with many of those days in the hospital.
Does anyone else hear have IH and what have they done about it. Do any of you have it without the optic nerve involvement like me? What treatment has worked for you?
We are so glad you've found our site. And yes, there are a few members here who have Idiopathic Intracranial Hypertension (IIH) formerly called Pseudotumor Cerebri. We have information on this condition HERE. Some have papilledema (swelling of the optic nerve) while others don't. Have you had your eyes examined by a neuro-ophthalmologist? If not I would strongly encourage you to do so. As far as the shunt goes, I would do the eye exam first, making sure there is no visial field defects and see what shape your eyes are in. Has your medication been adjusted recently? Maybe diamox isn't working as well anymore and another medication could be used. Methazolamide is a carbonic anhydrase inhibitor similar to diamox you could try. It may be something to discuss with the doctor before trying a shunt. I have IIH and didn't do well on diamox the last time I took it, so the doctor put me on methazolamide. I feel better when my pressure is down around 17. And methazolamide helps with that.
I hope this information helps, let me know if you have more questions. As a fellow IIHer, I'll be happy to help if I can.
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Welcome again,
Nancy Bonk
MyMigraineConnection.com Expert
Hello, and welcome to MyMigraineConnection.com!
Thank you for your response Nancy! I am afraid misery craves company so I guess in some ways I am glad there is someone else out there suffering this condition that I can speak to. On the other hand I wish you didn't have to deal with it.
Thank you for the suggestion regarding Methazolamide. I will indeed ask my doctor about it. I did ask him about Namenda but he won't prescribe it because he says there are no long term studies on what it will do to a person with the dosage required for migraine treatment.
I have seen neuro-opthomologists many times, I see one of them once a year. For a 3 year period I had a visual field loss in one quarter of the oustide upper quadrant of the right eye. It was of unknown etiology and self resolved. Interestingly my sister had the same thing happen to her when she was the same age. Other than that there is no sign of papilledema or visual field loss.
Thans again for the welcome and the reponse.
Ummmmmm, don't they think the "unknown etiology" could be the IIH? Maybe another opinion is order....I don't know. But what I do know is we can't have you walking around with Migraines all the time. There have been some recent studies out suggesting that people with a long history and/or frequent Migraines have an increased risk for silent brain damage. Not to add to your troubles, but take a look at this article when you have a chance: Yes, Migraines Can Cause Brain Damage.
Maybe find a doctor who specialized in IIH? What do you think?
I have another appt with a neuro-opthamologist in a couple of weeks. The one who I saw at University of Chicago is supposed to be one of the best in the country. He wanted to use my sister and I as a study since we both had the same condition in the same eye at the same age and are both migraine sufferers. My sister on the other hand was furious that he told me she had had the problem and threatened to report him for breach of confidence. Hers also self resolved.
The reason I have been told over and over that the eyes are not affected by the IIH is that there is no papilledema. In fact for many years I was told I couldn't have IIH without that but my head pain specialist insisted I could and do have it.
My doctor is at MHNI and they are consider one of the best clinics for head pain. I do have confidence in the clinic. I just saw my new doctor for the first time last week. My doctor moved to PA. The new doctor is talking insertion of a shunt and I am a little leery of that.....I guess I have to decide. I will say that the new doc is very take action and was very upset that he could not do anything to help me the very day I saw him.
I have had so many MRIs and MRAs I should be a magnet. They have not found any brain damage, no plaques, nothing to indicate anything except a very small benign type tumor that they keep a watch on to see if it is growing or affecting anything. I have had that since I was young. My family doctor used to call it a "black spot" in my brain :)
I don't think any of the MHNI docs specialize in IIH but so far they do have my confidence (I have gone there many years now). I just have very intractable headaches and allergies to almost every med they have tried on me.
My doctor wants to admit to their inpatient program but my husband is not very in favor of the idea. I have been inpatient there twice already and once at Mayo and he just doesn't think it is getting us anywhere. I personally don't like going because it is 4 hours from home and I never see family or puppies while there. I feel completely cut off. Plus, work is not very happy when I have to take time off and we don't get sick pay.
I am going to have an outpatient LP and then talk to the doc and we are supposed to take it from there.............
Good to hear about the new neuro-ophthmalogist appointment, another look is helpful. The ONLY definitive way to diagnose pseudotumor cerebri has great information on IIH. You can have IIH without having papilledema that is true.
We think it is best to pick a doctor, rather than a clinic. In general the clinic is good, but the doctor you work with really is important - just an FYI. Like I said before, I would try new meds before a shunt.....but that's just me!
I have an outpatient LP under fluoroscopy set up for May 23rd- the first appointment that was available. The doc wants to follow up on my LP as it has been a few years since my last one. He is sure it is going to show the ICP is up and that I will end up in the hospital. I guess I am just putting off the inevitable but I am concerned about my job and taking time off. I was already off for 2 weeks to have shoulder surgery this year.
I am definitely planning to talk to the doc about a change in med before considering a shunt! That really scares me, the shunt. I don't want anyone messing about in my head and I already have back trouble so neither surgery sounds very appealing to me. Nor does the possible clogging etc that could cause revisions.
Basically I trust the clinic to provide a good doc then after I see the doc I decide whether or not I think he is going to work. I am willing to give this guy a chance as he seems really wanting to help. I just may have to try to get him to tone it down a notch.
Thanks for your interest and help for this newbie to the board!
I desperately want to advise EVERYONE to think carefully about recieving a shunt implantation when diagnosed with Psuedo Tumor Cerebri. A shunt is a very life altering decision.. If I could go back in time, I would of declined the implantation of the Strata II shunt. If it is a life and death situation and they only way to save your life is to have the shunt, I say "go ahead".. But if you are deciding on a shunt to alleviate headaches... You better fight for an alternative method of alleviating the pain or try maybe altering you activity to decrease the triggers that are increasing the pressure. I realize the shunts are implanted to decrease the intercranial pressure, but along with the shunts come multiple revisions, complications, and possible infections. I only thought I knew what a headache was before I recieved my shunt.. LOL I am disabled now due to the complications and infections caused by the procedures of acquiring my shunt
I love this website, I don't feel so alone now since discovering it..