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 Recently diagnosed

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laurentooth97

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PostSubject: Recently diagnosed    Fri Jan 19, 2018 7:35 pm

Hi,
My names Lauren and I'm 20 years of age i have recently been diagnosed with IIH (Nov 30th 2017). I was suffering with headaches for approx 2./3weeks, i saw an our of hrs Dr (on a Saturday)who said it as viral & to see my GP if not better on the Monday, Monday came & i was still the same (bad headaches, couldn't look up/have lights on etc) i saw my GP who said it was also viral & said to rest come back next week if no better. Wednesday came & it was getting worse(back/neck ache) so i went back to GP who told me it as an ear infection and sent me away with antibiotics & told me to come back in 4-6 weeks while all of this as ongoing i was training in a new job working on a computer all day so i thought i may just need to go to the opticians and star wearing glasses whilst taking pregnacare as was trying to conceive so i stopped those also. The Friday came and was still getting worse so i had a paramedic come out to me he also informed me it was viral by this point i had gave up and thought maybe it is just viral and i should rest as also recently moved home & take some time off work which i did. When Monday came around it as so painful, my sight as blurry, i had double vision i as starting to worry so yet another trip to my GP ho told me there was never a sign of ear infection, it as not viral & it as all don to stress! By the point you can imagine i had had enough, i took the week off work and rested. Now Wednesday comes along, i had really had enough so my partner and i went to the local eye infirmary as i was more concerned about my sight that my headaches. I was in there approx 40 minutes after having various tests to be told he as admitting me to hospital & i should attend immediately. I was now very scared & upset as he told me it could be a brain tumour, as IIH outdent fit as it is usually in women 40+ & overweight. I then spent the next week in hospital, i had a LP my pressure was opening at 38 and as told it as supposed to be 14. When the consultant neurologist came to see me she told me i was very lucky as they were going to operate straight away & was glad i did not wait to come back in 4/6 weeks as the chances are i would have gone completely blind and that would have been irreversible. 
I am now taking 500mg acetazolamide a day & waiting for a follow up appointment down in the royal free. 

Sorry for the long winded story but i have just found this site & would really appreciate some comments, i am scared for the future as i really have no clue. Will my whole life be affected if i have to have the shunt? Me and my partner have been trying for a baby for over a year ( i have PCOS) and have no been told that i should not concieve on this medication, has anyone fallen pregnant on this medication etc?

All replies/messages will be highly appreciated.
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Sophiasmom
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PostSubject: Re: Recently diagnosed    Sun Jan 21, 2018 3:13 am

I'm so sorry for that awful experience.  I would go back and ask every single doctor you saw before you were finally diagnosed why they did not look in the back of your eye to see the swelling when your chief complaint was headache.  I am a doc and that is what we are supposed to do.  they all screwed up and let you down.

I would slow down and just try to get back to baseline before you keep trying to have a baby.  you have plenty of time to figure this out before making such a big change in your life.  you do NOT want to have a baby to take care of if you are ill with this.  also, pregnancy can make IIH worse.  you have to get yourself stabilized.  I would not rush into shunt surgery either unless they think your vision is imminently a problem.  there is also ONSF surgery to spare your eyes, which does not involve a foreign body in your brain.  try to see if the Diamox helps first.  The other thing that concerns me is that from my research, I know that the majority of women with PCOS also have obstructive sleep apnea.  and OSA can be a secondary cause of IIH.  if I were you I would ask for a sleep study.  if you can treat the OSA and get better, why have a shunt?

Deb
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laurentooth97

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PostSubject: Re: Recently diagnosed    Sun Jan 21, 2018 9:07 pm

Hi, thanks so much for your reply. Each time I saw a doctor before going to hospital they all looked into my eyes with some sort of light? My consultant asked me the same question how did they not see the swelling on my optical nerves especially when i had not just seen 1 doctor but 5.. with the whole trying to conceive I think we are just going to put that on hold for now but I was just curious to see others expierences/choices etc. What is ONSF surgery ? I would prefer not to have any type of surgery at all if I’m honest but I guess no one really wants it hey. I have been on the medication for a while now so hoping it is doing the correct job, I am expecting to have a few more LPs but hope there is an end to this, guess I am just worried with questions is this going to effect me for life.. I will 100% bring it up with the doctors about the sleep apnea and PCOS 


Thanks again
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Sophiasmom
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PostSubject: Re: Recently diagnosed    Mon Jan 22, 2018 2:49 am

ONSF is optic nerve sheath fenestration.  it doesn't leave a foreign body in you.
if you can have someone watch you while you sleep, to note if you are snoring or if you stop breathing, they are going to ask those questions.  most docs don't realize that OSA symptoms can be subtle, and will want to hear that you have snoring and witnessed apnea.
I assume they did a brain MRI?  make sure you also get a brain MRV and a neck MRV also.  ask them to look at the caliber of your airway on the brain MRI.  the radiologists never notice this but it's pretty telling.  were you taking any medications before you got sick?
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laurentooth97

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PostSubject: Re: Recently diagnosed    Mon Jan 22, 2018 5:30 am

I know I snore, asked my partner about sleep apnea he says highly unlikely? But will deffo bring up with doctors . Yes I had a MRI & CT & when having the scan they put some type of dye in me? 
No before getting unwell I was pretty healthy never any major issues
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Sophiasmom
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PostSubject: Re: Recently diagnosed    Tue Jan 23, 2018 3:26 am

snoring is sleep apnea although the docs don't understand this.  I recommend taking a look at doctorstevenpark.com and read about UARS.
my OSA was so mild that the sleep studies in my city could not detect it.  I had to go to Stanford to be diagnosed.  I then had jaw surgery and that is what put me into remission from the IIH.  so don't be fooled if they tell you that you don't have it, or even if your sleep study is "negative".  if you snore, you are creating a valsalva in your sleep, which is enough to raise ICP.
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PostSubject: Re: Recently diagnosed    Fri Feb 02, 2018 7:36 pm

Hi Lauren! I'm sorry I am late to the discussion, but welcome to the forum. I'm sorry that you've had such an ordeal. There are a lot of contributing factors to increased intracranial pressure, so I agree with Deb and would wait on shunt surgery unless your in danger of permanent vision loss. There are different medications and less intrusive procedures they can try.

If you haven't already done so, I would look at the Useful Guides and Printouts link in the Living with IIH section (http://www.ihaveiih.com/f44-useful-guides-and-printouts). It includes informational guides about IIH, how to speak with your physician, and other useful tools. You may also want to take a look at the General Information section because it includes information regarding tests, medications, surgeries, etc.

Let us know if you have any further questions and keep us posted!

Take care,
Julie
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