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 Sammy - Pregnant with IIH - diagnosed 2009

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sammishjo
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PostSubject: Sammy - Pregnant with IIH - diagnosed 2009   Wed Aug 25, 2010 3:06 am

Hi everyone I signed up a couple of months ago and have yet to post anything. I have only had IH since Aug 09 but it has been a crazy year. I was hit with the "headache" Aug 11th and started to loss some of my vision so I was sent to the ER. I spent 9 days in the hospital trying every medicine the doctors could think of, even though they had no idea what was causing my pain. I went home with no answers and became a shut in only leaving my bedroom to go to drs apts and the er. Finally in December I had a lumbar puncture down in the er with an opening pressure of 30. So with that my doctor finally figured it out and we tried all of the meds for iih which we found out the hard way I am allergic to. In March we started looking for a neurosurgeon to place a lp shunt. A week before my surgical appt in April I discovered I am pregnant. So the shunt is on hold and I am just stuck waiting and hoping that my son arrives safe and sound. Right now I am just having to stay on pretty constant pain meds, which I am trying to ween off of before my 8th month, and monthly lps. Unfortunately I just had a tap done last week which took 5 tries after which they were not able to drain much fluid and then I got the worst spinal headache ever, I have had 3 now. So lumbar punctures may now also be off limits. Before I got pregnant they were having to do them under xray because I have a very tight space. Does anyone have any advice for surviving IIH while pregnant?
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Heidi
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PostSubject: Re: Sammy - Pregnant with IIH - diagnosed 2009   Wed Aug 25, 2010 5:16 pm

Hi Sammy hug and don't worry about just posting, we're happy for you to post when you want to, as, as we say "we're always here when you need us". I personally started with IIH during pregnancy, and so had to rely on the pain medication I was given for the headaches, and I went on to have an unproblematic labour.

As long as your doctor and Neurologist monitor your pressure, and pain medication, you should still be able to have an enjoyable pregnancy. They will do everything to help make your pregnancy as comfortable as they can I'm sure, and make sure your pressure doesn't get too high to cause you problems. I would think if it does get too high, they may do a lumbar puncture if it is necessary, they may do it in a different area of your spine.

Going through my pregnancy with IIH, I used cold wash cloths on my head. eyes and neck when it was uncomfortable and got myself into what ever position made it more comfortable. There is also something called a Migracap, which is used by migraine sufferers which is also quite effective, and might be worth investing in to use through and perhaps after your pregnancy, which would be a good way of drug free pain relief, as it is designed to to ease all the areas of a migraine, which are very similar to a high pressure headache.

Here is the link: Migracap

I hope this has been some help to you, and I do know others who have had successful pregnancies with IIH, and had their pain and pregnancy closely managed by their Neurologist and their midwives, and were able to have a relatively good pregnancy and birth,
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lizb1989
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PostSubject: Re: Sammy - Pregnant with IIH - diagnosed 2009   Sat Oct 16, 2010 4:50 am


I am posting this blog because I have found very little information on pregnancy and Idiopathic Intracranial Hypertension also known as I.I.H. I am hoping (fingers crossed) that there are others dealing with the same issues I am because at this point I am feeling quite isolated in relating this to others who are tangible.

---> A bit about myself; my I.I.H and Pregnancy:

I am 21 years old, 19 weeks pregnant and was diagnosed last year in September of 2009. It was through a routine eye check up that they noticed my nerves were quite swollen after dialating my pupils. I was than sent to a specialist within the building who was very concerned and said I would need to have an MRI, CT Scan and lumbar puncture in order to figure out what was going on. Mind you at the time I was freaking out only coming in that day thinking I needed a better prescription for my glasses. He than referred me to an Opthamologist who diagnosed me with I.I.H and immediatly started me on "Acetazolamide", I was than scheduled to see him every week to monitor the pressure.

The lumbar puncture results came back and my pressure was double what it should be but on the scans they found no tumour but a "venous thrombosis". The lumbar puncture didn't heal correctly and I had to have a blood patch done. (horrific head pain might I add) A venous thrombosis is a long name for a blot clot within a vein, specifically mine was located on the left side of my brain in a central vein. The vein is in a tube shape and has not fully re-canalized yet but they said the blood had managed to dig its way through the clot and create a small opening. This not only creates MORE PRESSURE backing up blood flow. The only solution to date is to have surgery and have them insert a tube where the clot is I have been warned by my current Neurologist that it is a VERY risky procedure of course being pregnant now I cannot have the surgery nor do I think I will consider when the baby is born.

After months of getting the pressure under control seeing the Opthamologist I still had headaches, dizziness sensitivity to light, and sound etc. I was then referred to my current neurologist who could not pin point why this was happening and had no direct solution. I was just being told to keep losing weight (note I was only 40 lbs over weight from when I was healthy with no symptoms). At the time I saw my neurologist I was on "Tri cyclen" for birth control which I was immediatly taken off of and she was surprised no other doctor had taken me off of it as it was known to cause blood clots and one was found in my scan. A Few months later I began randomley collapsing many times after I would feel my body build up too much pressure. I was taken to the emergency room and they had no clue what was the cause and loaded me up with pain medication. NOT HELPFUL!?!?! That day we found out I was 1 month and a few weeks pregnant. SURPRISE! In the time between finding a new birth control that was ok for me to take between my regular doctor and neurologist I become pregnant in early June 2010.

As soon as I had found out I had to change my medication for I.I.H from "Acetazolamide" to "Topiramate" (also known as "Topimax") because it would not hurt the baby as "Acetazolamide" was known to be a much riskier medication. My neurologist prescribes "Topimax" to her patients mainly for epilepsy to control seizures but she has used this for I.I.H as well.

To date I am basically am a "Stay-at-home Mom to be", we are in the process of moving to a bigger place. I find the I.I.H to be debilitating many a days and find it hard to explain to others what I am going through. They either cannot empathize or it's incomprehensible, I find they forget to make room for exception as this is a tiring on-going medical condition.
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Heidi
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PostSubject: Re: Sammy - Pregnant with IIH - diagnosed 2009   Sat Oct 16, 2010 6:47 pm

Oh Liz hug, what a terrible time you've been having and I totally sympathise. I went through my pregnancy with IIH, although it wasn't diagnosed until 8 months after the birth of my daughter, so I know how it makes pregnancy all the more difficult. Topamax is often prescribed now as much as Diamox, one of the things that occurs with Topamax is weightloss.

Here is a link from our Informational Links section about IIH and pregnancy that I hope you find helpful.


I know how hard it is for others to understand what you're going through, and how it affects your daily life. You could ask them if they have had a very bad headache or migraine, and if they say yes, ask them to imagine having it all day everyday with no relief from it. You can also tell them that having IIH, gives you similar symptoms to someone with a brain tumour, which is why it was called Pseudotumour cerebri, which basically means false tumour. I would also either recommend they go to the IH Research Foundation website, where there is lots of information about IIH, or print them some off and give it to them to read, or even recommend they join our group, where we can help make them more aware of what you're going through.

I had the same problem with friends,colleagues and family, and it wasn't until I had to have a shunt that they finally understood, but back then there wasn't the information on the internet that there is now, infact there was no internet. Hopefully the more information they get, they will start to understand how difficult it is for you, and that they too have to adapt to you doing things differently.

I know in time when they have all the information, and finally begin to understand it is the kind of illness, that gives you bad and good days, that they will give you the thought and support you need for you
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