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11/03/2009 09:03 AM

Dealing with chronic headaches and tinnitus

Posts: 965
Group Leader
I'm an Advocate

Hi, so far I'm the lone poster here, and I hope that means that not many people are dealing with this serious neurological condition.

I deal with daily pressure headaches, as well as several forms of tinnitus; ringing, thumping, clicking, pulsing, whooshing and my hearing fades in and out.

The pain of a pressure headache is nearly impossible to get rid of, it only goes away when the pressure goes down.

Cererbro spinal fluid can fluctuate up and down during the day, so I literally don't know from one moment to the next how I'm going to feel, which makes it hard to plan things as simple as going to the grocery store.

The tinnitus is more noticeable at night, so I recenlty purchased a white noise machine, which seems to help.

If there are other IHers out there, please, jump in to the discussion, or start your own. It helps to know you are not alone.


08/03/2010 01:46 PM
Posts: 10
New Member

Hi! I've had IIH for 7 yrs now and I've been on diamox for the entire time! I still get some headaches but I still have ringing,pulsing, and a whooshing sound in my rt. ear. My hearing feels muffled and recently they found fluid in my rt mastoid which they might have to remove due to the possibility of brain or blood infection. I have extreme difficulty getting to sleep at night and often need to nap during the day. Are you on diamox? From what I know, if my diamox stops working then I will need a shunt which has a high failure rate. Right now, I am under my spouses insurance but next august I will be taken off due to his retirment at which time I don't know what I'll do because the diamox costs $300 a month!I priced health insurance and let me tell you about that so-called high risk pool of Obama's. I will be charged $300 per month for health coverage which will not cover anything until I've spent $7,200 of my own money. Then there are deductibles and co-pays. That's a total of $10,800!!!What am I supposed to live on when my disability payments are $1100 a month? I don't care if I get sent to jail for not buying the so-called required health insurance. I figure I'll be better off! I'll get my 3 square meals daily and medical care!Sad

08/03/2010 04:57 PM
Posts: 965
Group Leader
I'm an Advocate

If you are on disability, do you qualify for medicare? The supplement insurance is cheaper than what you have stated above, at least mine is. It also qualifies me for Humana prescription coverage, and my diamox is just $4.00. Not sure if this is helpful information or not.

Have they considered that the fluid may be CSF building up? Are you on a diuretic as well? I also take furosemide (lasix) along with my Diamox. I also take generic Diamox, made by a company called TAR, and it is the only brand that works for me. I've been on others and they don't work as well, and make me feel strange.

I don't sleep well at night either, but the white noise machine helps some, and I'm also taking seroquel 25 mg. It may be my age, having just turned 50.

Is your vision still stable? The only time I would consider a shunt is if my vision begins to fail. Like you, I am concerned about the failure rate and complications that people seem to experience with them.

Such a miserable condition to deal with, and I so know what you are feeling! There is a new drug study being done with octreotide, but it is very expensive, and from what I've read, not a lot of insurance companies will pay for it. If you are on facebook, google that drug and you will find a wealth of information about it, as well as others that have this condition.

Message me if I can be of any help, and I'll do the same!

Post edited by: DBS, at: 08/03/2010 04:58 PM


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