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 I swear this disease makes me feel as if I am going bonkers!!!!

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beautifulb

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PostSubject: I swear this disease makes me feel as if I am going bonkers!!!!   Wed Aug 08, 2012 10:11 pm

Hello everyone....it's been an interesting day. Woke up with severe neck pain only on the right side. Unable to turn my head to the right and a feeling of vise like pressure to my skull. After waking up this way I developed a few sharp shooting pains down the front of my chest, right back and back of both upper arms. FUN!!!! After this I tried to eat lunch without panicking and developed a funny burning prickly sensation to my inner left leg. I skipped my diamox today just in case even though I know I need it, lol... My words are coming slow at times and sound slurred at times. Each day I wake up it's different. Oh yeah, when I bend over I see golden sparkles, lol..... I am just a mess. I keep praying to God that if it's my time to go please don't let my sweet children find me. I am so scared bc I like to be in control and with this disease I feel out of control. One minute I feel ok and then the next I feel as if I am going to die. Sorry to rant but necessary evil with this. Love and hugs to all my fellow sufferers!!! :cry:
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Heidi
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Wed Aug 08, 2012 10:38 pm

I understand how you feel hug it's hard at first to accept that your body and your brain, want to do seperate things rather then work in sync. You can turn it around though but it takes time, and making some adaptations to the things you did before. It sounds like your pressure could be high so I would contact your Neurologist, so that he can do the necessary tests etc, and if needed lower your pressure with an LP. hug
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Wylee
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Wed Aug 08, 2012 10:41 pm

No need to apologize. Feel free to say how you are feeling. We really do understand.

Have you been doing a daily symptom log. I think you may find that very helpful, especially if you write down things like what you have eaten and done that day. You may find some triggers.

I so hope you are able to gain control over your symptoms, and soon, too. Sometimes the meds take time to build up in your system. ;)
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beautifulb

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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Thu Aug 09, 2012 5:50 pm

Thank you Wylee and Heidi:). I really appreciate your support. I haven't started a log but I will do that today. I think I just want to fix this so bad I cannot stand it, you know? I have been sick for so long and now that they know why I want to investigate shunt options bc diamox seems to be hard on my system and I just cannot accept that I will have to get LP's every month for the rest of my life. I am only 34 and it is a painful procedure that only provides temporary relief for me at least. It lasts about 6 hours for me and I have to be on bedrest for 24 afterwards bc of the amount of fluid they take off. I typically stay anwhere from 30 to 40 in my pressure readings even on the diuretics. Today I am feeling tired and my vision is a little blurry. I do not have the whooshing in my ears but I am taking zofran for nausea and I have bad neck/back pain that is only on the right side. These are symptoms that never really go away. I feel so fortunate to have all of you to talk to; it can be very lonely at times with this problem bc it seems after awhile you just don't want to complain anymore bc your loved ones have heard it all before. I have been on short term disability through my job since June and have not returned to work due to dizziness and intermittent blacking out. It runs out in a couple of weeks so the pressure is on. I just fedexed my info to John's Hopkins hoping they will accept me in their CSF clinic for eval of a shunt. I also feel like my neurologist here in Atlanta has not effectively ruled out any other underlying cause. I am told I have degenerative joint disease with displacement of my C5-C7 discs as well. I am scared of surgery but if it works with a few revisions in my lifetime I am willing to take the risk as opposed to constant LP's and pills still feeling rough. Thank you for listening. Love and hugs to all of you and I hope a cure can be found soon!! I also advocate that the medical profession become more sensitive to those of us that have this instead of taking such a light view of our problem. It is very serious and causes terrible side effects. I would like to join a group that advocates here in Georgia so we can do some fundraisers for the cause. I know a lot of people in the medical community and I think I could get us some much needed support Smile
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medmisfit
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Thu Aug 09, 2012 8:56 pm

I'm so glad you're staying positive and continuing to advocate, eventhough you're obviously suffering..you're an inspiration to us all!!! It really is nice to be able to come here and interact w/ people who understand. I read your initial post and thought "wow". That is totally how I felt in the beginning. I don't remember or even know if we figured out whether the symptoms I was having was from IIH or the Diamox, but I did end up w/ a lumbar shunt. I have had three revisions, but was able to return to work. I realize I'm probably one of the lucky ones, but I mention it b/c I think it's important to know it is possible to function w/ IIH once you find the right treatment. Initial diagnosis and treatment can be a very dark/lonely time, so hope is essential! I think if you follow Heidi and Linda's advice you'll find a little relief and have all the info you need to advocate for that shunt. Thanks for reaching out and sharing your story.

Take care,
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Julie
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beautifulb

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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Thu Aug 09, 2012 9:25 pm

I appreciate that Julie and I know this time is a very frustrating one for me bc I haven't found the right treatment yet. I am hopeful that is just around the bend. In the meantime it is vital to me to have a place to come and share with others who can identify with me and what it is like to have this. I find it inspirational to read your story and know that there is hope to continue on and go back to work once the symptoms are better controlled. I hope I am one that can tolerate a shunt. In the meantime I am going to advocate for further research and more media coverage regarding this illness so that the public and medical community can be made aware that there are numerous sufferers who deal with this every day and the symptoms mimic a brain tumor with ugly side effects. This disease should be looked at more seriously in every state. This support group is a vital in allowing others to vent and providing support and knowledge to those living with IH and I am thankful to be a part of it!
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VDubs
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Fri Aug 24, 2012 1:06 pm

i was told for years my problems was pcos and mental health. i think they thort i just went to the doctors for something to do as my body would do funny things then when i got there it wouldnt. then finally when i got my eyes tested they noticed and next thing im being poked in hospital. i feel like since ive had all these drugs and stuff i dont know what is iih and what is sideaffects

massive hugs


Dyslexic & Special
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pennyroyal
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Fri Aug 24, 2012 5:04 pm

Hello beautifulb,

Its so damn hard some days isn't it? Some days it hurts so much I swear I'll end up with brain damage. If you ever need someone to rant at feel free to message me. I feel bad sometimes keep telling my family - I know they have heard it all before and I am sure that no-one but you lovely people will ever truly understand.

Hoping tomorrow is a better day for you xxx
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ElysianFields7x7
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Sat Aug 25, 2012 3:36 pm

Hello Beaurifulb - I am new to this condition and to this forum. You have not idea how incredibly moved to tears I am to actually finally find this Forum. I have been to all of the really long places for the past two weeks trying to find some information and support. I am so sorry you are experiences the ravages of this condition too. I know exactly how you feel. My version of this condition leaves my with paralysis and tingling in both arms, massive headaches and, the worst part, horrible seizures. I can only sleep about an hour or two at a time because the CSF builds up while I am laying down and my entire head, neck, upper body start to quake uncontrollably. I feel like my brain is actually rocking back and forth in my head. I also have moderate shading and double vision. :ill The worst part is I am so alone in all of this. I only have one person who tries to support and comfort me. Because I am still unemployed I have no healthcare nor any money so I am not receiving any treatment at all. I went to the Emergency Department in July where I was diagnosed and received a Lumbar Puncture.The anti-seizure medication costs $138.00 that I just do not have.My heart just breaks for you because you have children. I am so sorry you must endure this agony. :( Please stay in touch.
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Wylee
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Sun Aug 26, 2012 2:47 am

Oh my, EF, your story is just dreadful!! But, may I Welcome3 you to the forum. Yes, this site is truely a Godsend!! Although we are not medical folk, or, at least most of us anyway, we can only offer advice as to what has worked for us, and perhaps something will work for you too.
I wonder what country do you live in? Is there any medical care available for those with limited resources? Possibly a "charity care" offered by your local hospital? Meds can often be obtained directly from the manufacturer, so I would contact them for your anti-seizure meds. I am concerned that you are not getting the care you need and you may end up in very serious circumstances. Would you like us to help you figure out that part with you??
As far as sleeping, it is not uncommon to need to sleep at roughly a 45 degree angle. If you do not have lots of pillows to boost you up, I would recommend sleeping on the couch with the pillows piled up, or even make a surface with a sheet of plywood that will angle you up. I know that if I start sleeping off my pillow I wake myself up with a mild headache that will go away as soon as I get back onto my stack of three pillows.
I hope that you are able to find the help that you need. In the meantime, we are here if you just want to chat, or rant and rave.
hugs 2
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Sophiasmom
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PostSubject: Re: I swear this disease makes me feel as if I am going bonkers!!!!   Sun Aug 26, 2012 4:22 am

hello EF. sleeping at an angle will also reduce the pull of gravity on your tongue to reduce sleep apnea. I have recently learned that the gold standard for determining how important ICP spikes are in terms of deciding on surgical treatment, as used by the neurosurgeons, is looking for ICP spikes during sleep. obstructive sleep apnea has been shown to increase ICP, so it seems clear to me that ALL people with ICP probably have sleep apnea. if you get worse when you sleep, it definitely implies this. you should never sleep on your back. your story is heartbreaking and I know how expensive it is to get evaluated and treated for sleep apnea. the least expensive option is a tongue retaining device called the aveoTSD which you can get prescribed through a dentist. it is only 140.00. by contrast a CPAP machine is almost 1000.00. and a BiPAP machine which I think is the only reasonable option for those of us with IIH is about 4000.00.
you can read about IIH and OSA at:
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and this is an excellent site to learn about OSA.
I don't know if it would help you but recently I seem to be doing better if I sleep with a cervical collar on. they are only 10 bucks at the drugstore. I think this stabilizes my head/neck posture in sleep to reduce compression of the jugular vein which would prevent proper CSF drainage.

welcome to the forum. I hope that you get some good information that will help you. we are always here to help. hang in there, we all know what you are going through.
Deb
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