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 Clacena diagnosed in 2007

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Cena
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PostSubject: Clacena diagnosed in 2007   Wed Jul 31, 2013 5:42 am

Hi, i'm Clacena, I was diagnosed with Benign Intecrainal Hypertension now known as IIH in 2007 shortly after i turned 18. i was having headaches and thought that i needed new glasses, the optometrist didnt tell me anything just that i needed to drive to the city as we lived in a small town several hours away to go to the eye hospital to get further tests.

I had no idea that anything was wrong so made an appointment about a week later. at the eye hospital they ran some tests and said that there was something wrong with my eyes and gave me a referal to see a neurologist. i didnt really understand and became worried but my family was great and supported me the whole time, my mum came to all of the appointments with me.

We got in to the neurologist fairly quickly, after looking at the eye hospital results he booked me in for an MRI that day. we came back a few days later and he explained that he suspected i had IIH and that we needed to do a lumar puncture to confirm, i hate needles so was pretty scared but had one that afternoon. he had the results later that day and said that i had IIH and my presuure was 31, normal presure is between 7-15. they removed some CSF to try and bring it down.

I had 2 more LP's to try and reduce the pressure but it never went down from the 30's by this stage i had severe bruising around my eyes, it looked like i had been punched and was getting headaches daily, i was terrified.

Dr Andrews said that we needed to put in a lumbar peritoneal shunt otherwise i would be irriversibly blind within a few weeks. he stated that because it was considered brain sugery i would not be able to drive for at least 4 weeks. he then said that i may not be able to sit up for several weeks depending on how i coped with the surgery we could only wait and see how it went. from the time i saw my optomitirist until i had the surgery it was roughly 4-6 weeks.

Since my shunt has been in i have no sign of papilledema, but i have migraines daily. after suffering for 12 months i went back to Dr. Andrews begging him to do something as i couldnt cope and i couldnt continue to take painkillers every day. We tried Botox, epilum, D.H.E, Maxalat im sure there were more i just cant remeber what else it took 2 years before trying Topamax, inderal and endep which has reduced my migraines from daily and severe to dull daily and only the severe ones once a fortnight.

I have recently gotten married, my husband and i are going to be trying for a family in the very near future...so i have to come off some of Inderal, so far it hasent been good.

im completly off of the inderal now and am having horrible pressure in my head and severe migraines,it feels like im underwater and sinking quickly, im struggling to accept and cope with the pain. the mersyndol doesnt work effectivley anymore...but im scared to take the endone daily which ive had to do the last week. im about to go see a natropath to see if a change in diet will help, mediatation and accupunture. i have also been refered to a pain management clinc but the wait list is about 12 months.

 does anyone have any other suggestions for what i could try i dont want to have to take painkillers everyday 🇳🇴
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PostSubject: Re: Clacena diagnosed in 2007   Fri Aug 02, 2013 3:22 am

I went and saw the neurologist yesterday as im not coping with the migraines. he said that we have tried everything and that he cannot help me. he also doesnt think that the migraines are related to my IIH because i have no signs of papilledema so my shunt works i dont have IIH anymore... i then asked what we could do for the pain as i didnt want to have to take painkilers daily like i have had to and he said that if i continue to do that i will become a drug addict... never felt so alone and discouraged i dont know if i can do this anymore.

does anyone have an LP shunt and get constant daily migraines? i dont know what to do...
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PostSubject: Re: Clacena diagnosed in 2007   Fri Aug 02, 2013 4:24 am

Hello Clacena and Welcome 

Have you had another lumbar puncture since having the shunt installed?  Do you feel better when you are laying flat?  Does drinking caffeinated beverages help?  I wonder, especially if you don't have an adjustable valve on your shunt, if you are having LOW pressure headaches??
I am glad to hear that your vision is better, now we just need to help you get that headache under control.


Last edited by Wylee on Wed Aug 14, 2013 6:44 pm; edited 1 time in total
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PostSubject: Re: Clacena diagnosed in 2007   Fri Aug 02, 2013 6:10 am

that was exactly my thought.  do we know what your ICP is with that shunt?  why does he assume it is migraine????  if Inderal was helping, you should probably go back on it.  you can't get pregnant in that state.
FYI I never had papilledema and I have IIH.  my ICP was 220 and 230 on my taps.   but I felt so deep underwater for so long I didn't think I could go on either.  your neuro is missing something, maybe you need to get a new one.
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PostSubject: Re: Clacena diagnosed in 2007   Fri Aug 02, 2013 10:50 pm

Firstly, welcome to the group forums and thank you for joining us.

LP shunts are notorious for over draining, it might be worth you asking for it to be checked to see if that is what is happening. You don't have to have papilledema to have IIH, so although the LP shunt could have decreased the swelling it could still be over draining. He needs to check your pressure to see if it is low and to also send you for scans.
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PostSubject: Re: Clacena diagnosed in 2007   Mon Aug 05, 2013 12:10 am

Thanks everyone i was having a bit of a melt down but am feeling better now, i have found a different neuro and am seeing him on thursday, i will ask him to check my shunt and the pressure etc. i havent noticed it being any better if im lying down but hopefully they can test my ICP pressure and figure out if the shunt is working properly.

i'm not planning to try for a baby until next year but i dont want to go back on inderal as i cant take it when i do get pregnant i want to try other things and see if they work because i cant use the inderal whilst pregnant and i would like to try and find an alternative. i cant put of having a life forever because of this.
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PostSubject: Re: Clacena diagnosed in 2007   Mon Aug 05, 2013 9:16 pm

I'm a little late, but also wanted to welcome you to the group. I have had a LP shunt for over 10 years and still suffer with headaches from time to time. I did have an issue with overdraining for a few years, so they tried every migraine med, botox injection, and treatment they could find..nothing worked. I finally was sent to pain management clinic and he's the one that said my shunt was overdraining. He sent me to a new neurosurgeon that agreed and scheduled me for revision. He said spinal taps aren't accurate for overdraining, so they go more by symptoms. I would keep a symptom log to help track info for the doctors..I also include medications and caffeine because they affect headaches. There are examples in Useful Guides and Print Outs section.

You can check Alternative Therapy section for alternatives to medication. Some people have found relief lying between 45-60 degree angle, using hot/cold packs over eyes & back of head..it's different for everyone, so I'm afraid it's all trial and error.

Good luck, and definitely keep us posted!

Take care,
Julie
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