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 New here and feel completely lost.....

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k3math
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PostSubject: New here and feel completely lost.....   Thu Oct 25, 2012 5:54 pm

Has anyone on here had a blood patch done?

I had a spinal tap done last week and have been experiencing ongoing headaches (similar to what I had prior to the spinal tap - squeezing sensation, non stop) and buzzing in my ears, some dizziness and by the end of the day I want to scratch my own eyes out because they hurt so bad. I nearly passed out the day after the spinal tap and had to go the the ER. I have to turn the lights off in my office to even get any work done. My doctor doesn't have my spinal tap results back yet but he's already ordered a blood patch to be done next week. He hasn't physically seen me, because he's too booked!!! I've only talked to his nurse. I feel like I'm getting the run around and not getting any answers and I'm lost in the system. I was just diagnosed with IIH last month. I've had daily headaches for as long as I can remember but then started having vision problems in July.. temporary vision loss, dizziness and seeing spots. Then started losing feeling on the right side of my body on several occasions - very scary feeling. They originally diagnosed me with complicated migraines and gave me Topamax. Now I'm on both Topamax and Diamox with no relief. (shouldn't they have done the spinal tap without me being on Topamax or Diamox??? - opening pressure of 20)


Most of the information that I have about IIH, I have gathered on my own from researching on the internet. My doctor hasn't taken the time to fully explain it to me about what I should or should not be eating/drinking, etc. (for instance.....I always take Advil for headaches ALWAYS... and I didn't know that I was actually making my head hurt worse! UGH) I am so frustrated and tired of being sick..... I try to be strong and and brave and all I really want to do is cry...



Sorry for the book.... Just feel like I'm getting NO answers and a little scared about another procedure... :(
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Wylee
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PostSubject: Re: New here and feel completely lost.....   Thu Oct 25, 2012 10:46 pm

Hello k3math and Welcome

The blood patch is used when a leak is suspected. Since having your lp, do you feel better when you are laying flat? If so, this could be a sign of low pressure. But to assume that you have a leak is rather odd. Sounds like your doc isn't planning on trying to find the leak, just assuming it is where you had the spinal tap and do a "blind" patch. I don't understand why you and your or don't know what your opening pressure of this most recent lp is, or is that the 20? If the headaches feel the same as before the lp, I would not have the patch done. Did they actually draw off any fluid during the lp? Maybe add fluid to see if that made you feel better?? Lots to consider before having a blind patch. They are not as comfortable as a regular lp is.

I hope you get to feeling better soon. Maybe your meds need to be adjusted??
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acerousme
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PostSubject: Re: New here and feel completely lost.....   Thu Oct 25, 2012 11:30 pm

Hi there! welcome! Sounds like I was writing that! lol.

It really does sound like your meds need to be readjusted. I was on Topamax..Thats not a fun drug. I felt worse on it.

But it sounds to me like you need a giant hug, and a reassuring smile. I too have not recieved many answers...this forum is super handy for that. I've received more info on here than from my oh so comforting hemorrhoid of a neurologist. ( did I at least make ya laugh a bit?)


**BIG HUGS**

Im here for ya Smile


The children almost broken by the world become the adults most likely to change it
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medmisfit
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PostSubject: Re: New here and feel completely lost.....   Fri Oct 26, 2012 9:09 pm

I'm sorry they've left you completely in the dark..no wonder your frustrated and scared! They use LP to measure pressure, but people w/ IIH usually find some temporary relief once CSF is drained off. It is only temporary, so you could just be experiencing the high pressure headaches again..if they feel exactly the same. Linda's right, a low pressure headache can happen after a spinal tap if fluid continues to leak, so they do a blood patch to seal the leak. If you do get relief when laying down, then it's probably a leak. Your doctor may have ordered the blood patch based solely on your symptoms because it's a typical procedure, but someone should evaluate you prior to the procedure. I assume the person doing the blood patch will do it, but I would definitely ask questions before you let them poke you.

In the meantime, try drinking caffeinated beverages, cold packs for swelling, and lay down as much as possible..the flatter the better! Your high pressure headache can get worse if you push through pain, but low pressure headaches will also get worse because you leak more when upright. Sometimes, they suggest laying flat as many as 7 to 10 days, so try not to worry.

It sounds like you've been on Toprimax for awhile, but if it's new it can also make headaches worse. Unfortunately, everyone responds differently to meds so it's all trial and error. You might try keeping a symptom log..there are examples in the Useful Guides and Print Outs section.

I hope you find some relief soon..hang in there!!!
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