HomeLatest imagesRegisterLog inFollow us on facebookFollow us on twitterFollow us on youtubeFollow us on LinkedinFollow us on PintrestContact usFeedback


Share  | 
 

 Why don't they understand this condition?

View previous topic View next topic Go down 
AuthorMessage
IdaSerafiina
Member
Member
IdaSerafiina


Why don't they understand this condition? Empty
PostSubject: Why don't they understand this condition?   Why don't they understand this condition? I_icon_minitimeSat Jan 15, 2011 2:44 pm

I'm having a hard time in getting a diagnos (or to even be examined) - and for what I have read, so has many others too. Especially if you don't show high pressure signs from your eyes (I don't).

It is not normal, that a young (otherwise) healthy woman starts getting constant pulse-synchronous tinnitus, vibrating eye sight, shaking seizures, twitching joints (face and neck - pretty much anywhere really); I got all these new symptoms from a blood patch (3rd one), and I litterally felt the pressure raised in my head. This is in theory a known side-effect from a blood patch, but as it only happens so rarely (even world-wide), the doctor's can't believe it.

I'm still fighting for getting an LP, maybe within two months I will get one. Although I'm not looking forward to another low pressure headache, I can't live like this anymore.

I hope you are all well xx fingers crossed

Tanja


Back to top Go down
Heidi
Admin1
Admin1
Heidi


Why don't they understand this condition? Empty
PostSubject: Re: Why don't they understand this condition?   Why don't they understand this condition? I_icon_minitimeSat Jan 15, 2011 3:02 pm

It has been well documented that IIH can still be present even if there is no pressure visible in your eyes. Unfortunately the only sure fire way for them to make a diagnosis is through doing a Lumbar Puncture. You are right to continue to fight for the right for an LP to confirm high pressure. Is there anything like a Patient Representative at your hospital who could mediate for you? If there is they could be very helpful in pushing things forward for you.

I will try to find some information about this being a side effect from blood patches that maybe you could print off an present to your doctor to prove that this does happen.
Back to top Go down
http://www.ihaveiih.com
Heidi
Admin1
Admin1
Heidi


Why don't they understand this condition? Empty
PostSubject: Re: Why don't they understand this condition?   Why don't they understand this condition? I_icon_minitimeSat Jan 15, 2011 3:35 pm

headaches after blood patches


I have managed top find several medical articles that you might find of interest about headaches after blood patches etc. I hope they are helpful fingers crossed

Article 1

Article 2

Article 3

Article 4

Article 5

Article 6


Last edited by Heidi on Fri Feb 10, 2012 3:32 pm; edited 1 time in total
Back to top Go down
http://www.ihaveiih.com
IdaSerafiina
Member
Member
IdaSerafiina


Why don't they understand this condition? Empty
PostSubject: Re: Why don't they understand this condition?   Why don't they understand this condition? I_icon_minitimeSat Jan 15, 2011 4:05 pm

Thanks so much, Heidi!! bhug

Tanja
Back to top Go down
Sponsored content




Why don't they understand this condition? Empty
PostSubject: Re: Why don't they understand this condition?   Why don't they understand this condition? I_icon_minitime

Back to top Go down
 

Why don't they understand this condition?

View previous topic View next topic Back to top 

 Similar topics

+
Page 1 of 1

Permissions in this forum:You cannot reply to topics in this forum
www.ihaveiih.com :: Living with IIH ::   :: Group Huddle-
Jump to:  
DISCLAIMER This group is not managed by anyone in the medical profession, but by people who are either affected by, or are closely connected to IIH. Information provided on this site is meant to complement & not replace any advice or information from a health professional, users and members are reminded that medical professionals should always be consulted in all aspects of health needs.
Protected by Copyscape Web Copyright Protection Software
Top Disability Websites
Free forum | ©phpBB | Free forum support | Report an abuse | Forumotion.com