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 I'm sick of being told....

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mcleod80
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PostSubject: I'm sick of being told....   Tue Mar 05, 2013 11:27 am

So I ended up back at my GP's on thursday with terrible dizziness and the pain in my head was something else. She sent me down to the AAU department where I waited 14 hours......yes 14 HOURS, for a Doctor to see me. I wasn't given a bed as I was told there weren't any so I sat in a chair. I wasn't offered any food until 11pm that night and no drinks were offered, just told the location of the water fountain........but anyway, I digress.
What has really annoyed me is the fact that that the Doc in the AAU department told me my pressure couldn't possibly be up again as I only had a LP on the 12th of feb. I told him that the pressure is up again within days of the LP and he told me that was IMPOSSIBLE, It takes a lot longer than a few days. He then referred back to my notes and AGAIN told me that he suspected this was a migraine. All because one stupid Doctor wrote in my notes months ago that he suspected I had "migranous tendencies", now they all just read this and say exactly the same thing.
I told him I needed another LP and he looked at me suspiciously and asked "why would you WANT one of those?" he refused to admit me and discharged me at 5AM!!
How do I stop getting caught in this "migraine" trap?
How do I get the help I need, why won't they believe me? It's there in black and white that I've been diagnosed with IIH!
Why won't they accept that the pressure can rise so fast?
I don't see Dr Ahmed till the 19th and I'm soooooo fed up!

RANT OVER!!!! [You must be registered and logged in to see this image.]
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Heidi
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PostSubject: Re: I'm sick of being told....   Tue Mar 05, 2013 7:10 pm

I have to admit this left me totally speechless before uttering lots of [You must be registered and logged in to see this image.] words!Did he suggest even a low pressure headache, which I'm sure you know the symptoms of yourself, but DID HE even explore it?
My advice to you is to contact [You must be registered and logged in to see this link.] as they will be able to help you with this. You can't go through this everytime you are experiencing high pressure and symptoms. Please keep us updated on how you get on, and if we can do anymore to help we will.
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mcleod80
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PostSubject: Re: I'm sick of being told....   Tue Mar 05, 2013 8:38 pm

HI!
NOTHING to do with IIH was explored, apart from the usual eye tests which showed the usual swollen optic discs. The ONLY thing mentioned was migraine, as per usual.......
I know I should say something there and then, point out the gaps in their knowledge, but I'm so worried of offending them and making them angry. They're the shiny Gods that hold the key to the help and treatment I need, so I just sit there and obediently go home when they discharge me with "migraine" written on my notes.
Can I get this "migraine" off my notes as it's leading the Doctors down the totally wrong path?
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Sophiasmom
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 12:30 am

if they documented you had papilledema at the time, then you should complain to the hospital administrator and file a complaint with the medical board about the incompetence of that doctor. since when is it just a migraine if there is evidence of ICP on your eye exam??? he did you harm by not managing a serious neurological condition and that is malpractice. I have a paper that has language suggesting that migraine itself is actually associated with ICP. PM me with your email address if you want it. I think there are big pieces of the puzzle that are missing here.
Deb
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Heidi
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 12:34 am

You have [You must be registered and logged in to see this link.] to expect a decent quality of duty of care from the Doctors. Getting Migraine removed from your notes is something you can ask PALS to sort out for you. The days have gone where we just accept what we are told by Doctors, as we now have information available to us, and things have moved on. Never be afraid to question Doctors especially when it comes to having treatment for high pressure etc.
One of the things I'd advise you do is have PALS, when dealing with these issues, put in place with your Neuro a process that enables you to contact your Neuro when you are experiencing high pressure and symptoms. Then you can deal with him directly, without having to go through this kind of thing again. I had to do that myself many years ago. It made things a lot easier and a lot less stressful.
This is one of the things we hope to change in the future, how we are dealt with in situations like this.
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Wylee
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 12:53 am

According to the article by Michael Wall entitles Idiopathic Intracranial Hypertension, the spinal fluid pressure can go back to pre lp levels in as little as 82 minutes:

Lumbar Puncture

Use of repeated lumbar punctures is controversial. Lumbar puncture has only a short-lived effect on CSF pressure60 with a return of pressure to pre-tap level after only 82 minutes.(60) Lumbar puncture measures CSF pressure at only one point in time. Since CSF pressure fluctuates, this information has only limited clinical use for modifying treatment plans. However, since transverse sinus collapse (smooth walled venous stenoses) can resolve immediately with lowering pressure,(61) CSF circulatory dynamics may be restored with this procedure and may give temporary relief until the sinus recollapses, usually within weeks.

I would make a few copies of his article and bring it with you the next time you need to go to the doctors or hospital. It spells out everything they need to know.
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mcleod80
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 9:58 am

Do you know something? you lot are absolutely, bloody amazing!! Thank you so much for your support. I'm contacting PALS as we speak.
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pennyroyal
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 6:49 pm

If you don't get anywhere with PALS then complain. In writing. I would suspect it won't get that far as PALS are usually great. I got a written apology from the hospital and a promise they would review their practice for IIH patients.
Nobody should have to go through what you have been through. Its so hard when you know your condition so well to question someone so well trained. I have learned to be polite but firm. I know when my pressure is raised and will now be very firm in saying so. It has taken a very long time to develop the confidence and the language to be able to do it without losing my temper and screaming at them that they don't have a clue.
My neurology department now has a new procedure for IIH patients so I don't have to go through this anymore - they have an LP clinic once a week now for IIH patients and an on call neuro nurse for emergeny LP's. If only all hospitals worked like this.
The very best of luck. I hope you get some relief from your symptoms soon. Keep us updated and if you need any help give me a shout. I am an expert at this complaining lark.
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medmisfit
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PostSubject: Re: I'm sick of being told....   Wed Mar 06, 2013 9:41 pm

And please know you are not alone! I've had IIH for over 13yrs..every time I've gone to ER it's ended up in shunt revision and they still try to convince me it's a migraine. Like Penny said, you just have to be polite but firm. Sounds like Linda and Deb are onto something with those articles too. Stay informed and continue to advocate for yourself..no one knows your body better!!!

Good luck,
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Julie
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