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 So confused!

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Samanthag
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PostSubject: So confused!   Thu Jul 28, 2016 8:11 pm

Hello everyone I am Samantha.
Now I haven't been I guess officially diagnosed with IIH but the term has been thrown around though. Along with MS,aneurysms,lupus?!? 

So here's how I got to all this confusion. For about 8 months Ive been having terrible headaches, sometimes they wake me up in the middle of the night or other times I just wake up with a headache. They all range in severeity also some days are better than others but EVERYDAY i have some sort of pain. So 3 months ago I quit drinking and smoking cigarettes(was heavy into both) thinking this was the cause to the headaches and always thought the headache was a form of hangover. Well they never went away once I quit. So I went to the eye doctor thinking okay I've never needed glasses before but I am getting older maybe im straining my vision. Well I did need glasses but the doctor also found papilledema and referred me to an opthamologist. From there I had an MRI which came back normal, just got a LP done last week ( which was horrible! had the worst spinal headache for 3 dayss ended up having a blood patch done) the opening pressure was 18.5 and the Dr. who did it said thats normal pressure.My neuro is a headache specialist and I had some nerve and trigger blocks done Tuesday and it has done nothing but cause so much more pain. My neuro and Opth are the ones who think its IIH, is it only because of the papilledema ? or can you have IIH with "normal" CSF pressure. 


Im so lost im sorry if I've confused anyone.
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Sophiasmom
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PostSubject: Re: So confused!   Fri Jul 29, 2016 4:37 am

hi Samantha;
I also live in Las Vegas, for a few more weeks anyway.  you can have papilledema from IIH at what most docs consider "normal" ICPs.  there are others on these boards who've had it.  one interesting thing is that sleep apnea can cause papilledema due to ICP spikes that occur only while sleeping.  then while awake the ICP is "normal".  so I'm a bit suspicious about the sleep aspect since you wake in the middle of the night with the headaches.  I'm glad your neuro is on your side with this, who is your neuro?  I have seen Dr. Veerappan here in town and he is a co-author on my case report I just published.  he knows more about the relationship of sleep apnea to IIH through me, so it might be worth getting a second opinion from him.  who did your LP and was it done on your side or laying on your stomach?  if you were on your stomach then they need to add the length of the needle, so that depending on that your ICP could actually have been 6 or more cm more than 18.5 which would definitely be elevated.
btw there is no sleep center in Vegas that I recommend; 3 of them missed OSA that was present and required treatment in myself and my son.
Lupus can present with IIH so if you have other indicators then you should have a full blood workup for that.  
so sorry for what you've been through!
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Samanthag
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PostSubject: Re: So confused!   Fri Jul 29, 2016 5:02 am

Thanks for getting back to me ! I had the LP done at steinberg and my neuro is Dr Valencia. I will look into your doctor ! I'm not sure on the needle length I know it was a 20gauge.  I'll look into it. I was laying on my stomach when punctured  and after a few mins moves to my side. As far as the lupus I have papers to go to quest and get blood work done,  just haven't gotten around to it -__- just seems like appointment after appointment lately!
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PostSubject: Re: So confused!   Fri Jul 29, 2016 7:18 am

re: appointments oh boy get used to it.  sounds like they measured your pressure in the lateral position so would not have to add the needle length.

did you take any medications right before your headaches started?  what do your doctors think was the IIH trigger?
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Samanthag
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PostSubject: Re: So confused!   Fri Jul 29, 2016 2:12 pm

No medication before. I've had headaches since I was a kid but nothing consistent like this. I take topamax, diamox, cambia and maxalt now. The diamox I just got taken off of because it was making my migraines worse. (Idk why) topamax just makes me sleepy and makes me very slow the next day. And maxalt and cambia can only be used on the onset of migraines and they give me a little relief nothing ever seems to just make me feel normal. And the appointments, I've been pretty use to constant appointments just not for myself my oldest son has hydrocephalus so he sees 3 different doctors regularly.  But between his appointments, mines and work there is no time.
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Sophiasmom
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PostSubject: Re: So confused!   Fri Jul 29, 2016 5:31 pm

that is interesting that your son has hydrocephalus.  makes you wonder if there is something congenital impeding CSF flow.  have you had an MRV of your brain?  maybe a stent could help you if there is a venous stenosis.

btw most people post in "group huddle" or in "women with IIH".  for your next topic.
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Samanthag
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PostSubject: Re: So confused!   Sat Jul 30, 2016 1:23 am

It's weird. My aunt died at 2 from hydrocephalus. Of course this was back in the 60s and hers was very severe. When I brought this up to my primary he said it's not hereditary so I don't know. Yeah lol I don't even know how I got to this area of the forums must have been clicking around. Thanks for the heads up. Haven't had the mrv yet. Valencia was supposed to get prior authorization for it and I have yet to see it on my insurance.  She told me this almost 3 weeks ago it never takes that long for my insurance to approve any of that stuff at the most I've waited was 5 days and that was for the puncture. Thanks for helping me out ! I'm completely lost and I guess a little impatient and want more answers then what I've been getting from doctors.
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PostSubject: Re: So confused!   Sat Jul 30, 2016 3:36 am

well you will find that the docs don't have all the answers even if they think they do.  there's a lot about IIH that no one gets.  and most docs seem to have the attitude that we already know all there is to know, so they will dismiss a questioning attitude.  the biggest problem in IIH is their insistence that 25 is the cut off for when ICP is elevated and requires treatment.  my son and I have had ICPs of 23 and IMO my son has been medically neglected for 4 years since he was diagnosed.  he is always better after an LP, but the neuros ignore this little detail.  a paper you may want to read is one by Higgins on intracranial hypertension in chronic fatigue syndrome.  just search that on Pubmed and it will pop up.  he showed that patients with CFS felt better after their ICP was reduced at LP even if their ICPs did not qualify as IIH.  he pointed out that they came up with the "normal range" by doing LPs on patients with neurological problems who were presumed to not have ICP problems.  not true normal patients.

another question: do you have worse pain and symptoms triggered by a valsalva maneuver?  this would be any type of "bearing down" like sneezing, coughing, shouting, blowing up a balloon, grunting, etc.  I think this is fairly universal in us and an indicator that ICP is involved in the headache.  before I went into remission I could hardly speak without getting dizzy.
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Samanthag
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PostSubject: Re: So confused!   Sat Jul 30, 2016 3:58 am

Yes I have seen this in doctors. Sorry to hear about your son being medically neglected,  that's not fair!  I will look that up tonight.  

As far as the "bearing down" my head feels like it's going to explode when I sneeze or cough I'm dizzy and see spots . Using the restroom as well sorry if that's tmi.
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