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Discussion:
Hello Everyone!
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Hi! My name is Nancy. I am 47 y/o with a long standing history of headaches/depression for years. In January '11 I had too much stress and developed severe neck pain and a continuous h-ache along w/dizziness, lightheadedness and fatigue. At that time I also gained almost 20 lbs to an already size 14 body. By early April I started to have smell hallucinations of burnt smoke several times a day(still have it!) and got a head MRI. It showed possible IH with flattened discs and an empty sella.The nuero opth says I have no papiledema with good pulsations and my visual fields are ok. I have since had a spinal tap with opening pressure of 26 and am on Topamax 50 mg twice daily for what the headache specialist calls migraines. I have also had DHEA injections without success/relief. The nuero wants to put me on diamox but I have severe sulfa allergy so that's a no. I am trying to lose those 20 lbs but I feel terrible and exercise seems to be such a chore. Headaches w/neck pain every single day. Now ear pain. I get dizzy just walking up stairs. I get fatigued just puttering out in my garden. I'm getting numbness and tingling in my fingers and right foot. I am tired all the time. I just am not myself!
So, Has anyone had smell hallucinations?(they have ruled out seizures etc with 24 hour EEG). Has losing weight really helped anyone? Any other drugs out there that work as well as the Diamox? Like lasix? or others? Is there any other test out there? I just feel so helpless! I don't like this But am really thankful to all of you who are out there....thinking of going to Columbus in Aug for the convention. Anyone up for a roomie and /or driver?Nancy from Buffalo
Posted on 07/09/11, 10:31 pm
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Reply #1 - 07/09/11  11:06pm
" Hi Nancy and welcome.
Losing weight does seem to help some people. Their are varying schools of thought on this. I say that it makes you feel better to some degree so why not anyway . I have lost 35 lbs since diagnosis and I feel better , Papilledema is gone. One thing you should do is go to www.IHRFoundation.org and look around. Call them and become part of their confidential registry. It is a very helpful foundation. You can email or call them with questions and for referrals to docs who treat this.

I never thought I had smell "hallucinations" but now that you mention it , I am always smelling things others can't. I am way ahead of anyone if there is a gas leak. I can smell cigarettes a mile away.I have always had a much more sensitive sniffer than others. Any small scent variation I can detect. I feel like I am part canine !
Others will be along shortly and I am glad your vision is not affected.
Faye "
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Reply #2 - 07/10/11  8:21am
" Thank you Faye for responding. Your sniffer seems to be an asset whereas mine is quite bothersome. It interferes with my daily activities and is really just scary. You know like you KNOW you shouldn't be smelling this! I hate it! They even sent me to an ENT doc who scoped me and did the whole 9 yards to no avail.
It was nice meeting you and I'm sure we'll tlk some more.
Nancy "
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Reply #3 - 07/10/11  6:02pm
" Hi Nancy,
Weight loss is tricky with IIH. I actually spoke to my doctor about it a couple days ago, and while some of my doctors believe it is the “cure”, others will tell you you need to be careful with the exercise part. I find that any impact leaves my headaches worse. They recommended swimming and ellipticals. The Topomax also suppresses my appetite to the point where I barely eat during the day.

From what I’ve been told. Diamox seems to be the strongest drug, but also the hardest to tolerate. I personally didn’t do well on Diamox, and I take Topomax now. I’m not having too much success with the Topomax, but I also don’t feel as sick as I did on the Diamox.

Feeling helpless is COMPLETELY normal. We all do. "

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