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Intracranial Hypertension
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janwholoveslife posted:
I was recently told by a neurologist that I have IH, intracranial hypertension. It has made quite an impact on my life this past year and I was wondering if there was anyone else out there that had this disorder. thanks, Janet
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Sammi8265 responded:
Hi Janet, I was told that i "had" Intracranial hypertension about a year ago. But it was ruled out. So i don't/didn't have it. But i have read alot on the topic and there are some great people that can answer your questions. Its called " Intracranial Hypertension Research Foundation" If you google it, there is a website. They will mail you information, and stuff. They even called me and I asked them questions via telephone.

I had a headache for 15 days straight, accompinied w/ a swooshing sound in my ears. Like a pulsating sound, similar to a heartbeat. So I had a spinal tap, and all of the headache and noises went away, along with the eye pain I was having too. My opening pressure was 19/ or 190. So they considered me borderline. What was your OP? Good luck
 
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retrieverbeliever responded:
Hi Jan-

After doing some research on IH, I think I might have it, too-I have the swooshing that coincides with my pulse, but from time to time, I also have the sensation that the lights are turning on and off, also coinciding with the swooshing and pulse-I asked my neurologist about this, and she told me to see a cardiologist-I had a cervical fusion C3/4 in 2007, and I have another disc that's bulging now C6/7-I think this might be a factor, but I'm not a Doctor-I had a heart catherization before the surgery in '07, and was told I had no problems, heart wise-I'll be contacting him again tomorrow, along with maybe another neurologist-Did you have the lights on and off thing? It's disturbing to me, because I never know how long these things will last, or if it will progress to something else-Any ideas? Thanks Jan-
 
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janwholoveslife responded:
Sorry to be late in answering back...my opening pressure was 280..normal is 180-200. I have had the "swooshing" sound in my right ear for about 20 months now, the headaches have been on and off, but I did have a steady headache last year for 4 months, sometimes very painful other times dull. My eyes get sore, my optic nerves are swollen in both eyes, I get a "fuzzy" picture with my left eye at times. I have not only headaches which at times can be severe but I get pain in the back of my head at my neck, my shoulders, down my spine, and it affects my bladder as well. My family doctor and neurologist both agree that these are all pointing to intracranial hypertension. I am on Diamox now, which makes me tired...my dosage will increase after 30 days. I am also trying to lose more weight because that can help as well. Thank you for the info I will look it up and see what they can tell me.
 
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ashleyreyne responded:
Hello Janet! I also have IH. and I am finding it very hard to find a lot of information about it. I have had the whooshing sound in my ears for a longtime. But the begging of 2009 I started waking up and not being able to see out of my right eye EVERYTHING went black. IT would only last for about 30 seconds then go away. I made an appointment to an eye dr at a local Wal-Mart because i needed new contacts anyway. Right away he noticed the swelling of the nerves in my eye. Then he sent me to a Ophthalmologist who confirmed i have IH. Then sent me to a Neurologist who had me have a CAT scan and spinal tap. They said they took 3 times the amount of fluid out then the normal person. So now I am on the Diamox & Topamx and going to both the Ophthalmologist and neurologist every 3 months to check on it. To be honest i found the most info out by research online and not by my doctors. I almost feel like i know more about it then they do. And I don't know where you are now in treatment but i feel like i am left out hanging to see if the swelling goes down. Also they said that I should loose weight, i lost 20 lbs and my head hurts more now then ever. If you have time i would love to talk about this more. I have so many questions and no place to get them! thanks Ashley !
 
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janwholoveslife responded:
Sound like you have done the right things going to your ophthalmologist and seeing a neurologist. So you are on both Diamox and Topamox? Wow! I am on Diamox only and he started me taking it 2 times a day, then wants me to increase to 3 times, then to 4 times so he can put me on the time-release capsule. My cerebral spinal pressure was 280, what was yours? There really is not a whole lot of information on IH but I did find that there is an institute in Vancouver, WA it is the Intracranial Hypertension Institute and you can find them on the web. I signed up for free newsletters and hopefully I will get more info from them. I do know that IH is kind of a new thing, at least it is for doctors so not too many of them really know what it all entails. I do know that keeping yourself healthy, trying to reduce stress (I know this is hard for me too), and just relax and learn to live with this disorder. I take OTC ibuprophen to help some with headaches but I find that if I just stop and relax for a moment it does ease up some. Since I have been on Diamox my headaches are lessoning but I feel tired a lot and that could be because right now I am anemic on top of this. I told my primary doctor about having some bladder and bowel issues (sometimes it is difficult to get to the bathroom on time) and he said that IH can play a factor in this problem. Great, just what I needed to hear. I go back to see my neurologist next month and hopefully I can find out what else he is able to do for me or do we just continue to go along with what I am doing now. As for the weight thing, not all IH people have weight issues and also just because you may be overweight is not the absolute reason that you have it. I have been eating more healthy and I too am trying to lose some weight but I am not going to stress over it either. I believe I got this from a virus that settled in my head (left front side) about 18 months ago. I then got the "swooshing" in my right ear, the headaches on the left side of my head and also in my neck and down my spine. My left eye at times gets "foggy" but it doesn't last long. The opthamologist that I saw has not even asked me to come back to check anything. I guess I go if my eye(s) get worse. The headaches got worse this year, and I kept getting them more and more frequently. I think it was aggrivated by stress, the not knowing what was wrong. Now that I know I feel better about things even though there are not many answers at least I know there has to be more research being done. I hope this helps you and if you have any questions I will try to answer them for you. Good luck to you and God Bless. Janet
 
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ashleyreyne responded:
Oh my goodness taking Diamox 3 or 4 times a day would be hard for me. I'm not the best at remembering to take my pills but I'm getting better! I'm not sure what my cerebral spinal pressure was in fact I dont think they told me. I think today I'm going to call my doctor and ask.

I did want to ask do you get heart burn with the Diamox? I get the worst heart burn and back pain when I take my meds. So now I have been taking a heartburn pill also, and they put me on a potassium pill since my potisum is low due to the Diamox.

And its funny you said something about stress, I notcied when i was stressed my head stared to hurt and it feelslike the pressure really builds. And I didnt know if it was me or it really could get worse from stress.
 
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mycoda responded:
My daughter has this disease and has been dealing with it since January 09. After being in the hospital 3 times and treated for intratable migraines a lumbar puncture was done and her opening pressure was 43 or 430 ( the normal is below 20or 200). We had a difficult time finding a doctor that knew much about idiopathic intracranial hypertension or another name pseudotumor cerebri and her local neurologist really didn't know what else to do after one vp shunt surgery and still headaches. I called the Intracranial Hypertension Foundation in Vancouver and the founder, Dr Emanuel Tanne returned my call and referred us to the Lifebridge Adult Hydrocephalus Center in Baltimore, Md.(this is the closest place to us with expertise in this area). The Foundation would be a good place to start to get the help you need. We are still battling this disease but feel like we are in the best place with doctors that know as much as there is to know about this. My daughter has only slight problems at times with her eyes thank goodness but this is a big problem for many people and can cause blindness, it is not something to be ignored. I wish you luck in dealing with this.
 
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janwholoveslife responded:
Thanks for the advice. I am so sorry to hear about your daughter and what she has been going through. It is a parent's nightmare to see their child hurting so much. I will check in with the Lifebridge Adult Hydrocephalus Center and see what information I can get from them. Prayers for your daughter and for you and your family. ~Janet~
 
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janwholoveslife responded:
Heartburn, yes I think I have had some of that but I wasn't sure if it was diet or meds. I will see my neurologist on Friday and I will ask him that one. I tried to do the Diamox 3 times a day...no can do. I stayed tired, feeling horrible and I could barely function at work. I am only taking it 2 times a day and I can tolerate that. I hope that my neurologist doesn't get upset over this but hey it is the best I can do. I do not take potassium I try to eat bananas and oranges and other potassium rich foods to help. I think it has helped me on that one. My headaches are not as bad right now and I credit maybe the meds and trying to relax more. If you fight the pain it sometimes gets worse so I found that if I just go with it and relax it lessens. It works for me but it may not work for others. Wouldn't hurt to try though. I hope that this helps...just remember you are not alone in this. Many blessings, Janet
 
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sieck123 responded:
I was diagnosed in 2008 . I was wondering how you are today or are you in remission?


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