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 My IIH Story

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PostSubject: My IIH Story   Wed Apr 26, 2017 1:53 am

Erica’s IIH Story
I was 38 when I was diagnosed with Idiopathic Intracranial Hypertension (IIH), also known as Pseudotumor Cerebri. It was August 31, 2016.
I had been working for the past 11½ years as a paralegal for a well-known personal injury law firm. 
Sure, I had headaches all the time, and the occasional migraine, but I popped Excedrin and went on with my life.  No big deal. 
Every now and then I thought I had water trapped in my ears, but when my Primary Physician confirmed there wasn’t any in there, I let it go.  There was no pain, just some water noises occasionally.  No big deal. 
The time came for a standard vision test.  I had let two years pass since my last one.  No big deal.  My Optometrist saw that my left optic nerve was swollen, and immediately sent me for a second opinion with an Ophthalmologist.  Once confirmed, the brain MRI was next, then the neurologist.  Then the Neuro-Ophthalmologist.  Then the spinal tap, and then…BOOM!  Here we are on August 31, 2016 and it’s IIH, an incurable brain disease.
And now, here come the meds!  Along with meds, come tons of side effects!  Dizziness, forgetfulness, fatigue, weight loss, Unfortunately, one of the main medications used to treat IIH had zero effect on me.  It is used to reduce the amount of cerebral fluid (CSF) in the head, but it didn’t work.
On September 9, 2016, I had to stop working.
My peripheral vision was the first to go.  Slowly on the left, and then more rapidly on the right, and then all around.  By the end of October 2016, I was barely seeing through tunnel vision, and what I did see was horribly distorted and blurry.  On November 9, 2016, I had my first brain surgery.  A ventriculoperitoneal (VP) shunt was installed. The night before I headed to the hospital, I shaved my head with my family.  It was a lot better than having hospital staff do it.
The surgery made the whooshing noise in my ears stop, and restored my vision.  The headaches and migraines continue.  The horrible drug side effects continue.  My short-term memory is gone, but I can remember things that happened over 20 years ago.  I forget my friends’ kids’ names.  I sometimes rely on GPS to get home.  I can’t do anything with numbers or money.  I depend on a list on a daily basis, and panic when I misplace it.
Recently the shunt tube, which was originally coiled up and tacked into place above my liver, has come untacked, uncoiled, and is floating around poking into and wrapping itself around organs.  It’s not especially pleasant….at all.  As a matter of fact, I can barely walk.
This disease effects the entire family.  My husband is the only one working, and much of his paycheck goes to my health insurance and outrageous medical bills.  Our daughter was a junior in high school, but is now studying for her G.E.D. and will be finishing school a year early, which is allowing her to spend a lot of time helping care for me during the week.  I have maintained my notary license and try to officiate weddings when I can, but that income is very minimal, and depends upon my health on a day-to-day basis.
I’ve lost tons of friends who just didn’t understand the disease or were too scared to ask. Even family members have shied away.  My life consists of home, church, and online IIH support groups. But through everything, my smile always stays in place and I will gladly tell anyone who asks all about IIH.  Awareness is the key. 

  ~ ES
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PostSubject: Re: My IIH Story   Wed Apr 26, 2017 5:08 am

hi Erica;
thank you for sharing.  I'm so sorry for what IIH has done to you.  I don't understand why you still have headaches or need the medication.  why can't they set the pressure to the right spot, it sounds like your pressure is still high but it's just low enough for your vision to be OK.  I have IIHWOP, and my ICP was measured at 23.  My son's also is 23.  we don't have vision problems.  The docs don't know what to make of us, since they think that it has to be 25 for it to be IIH.  but probably the ICP has to be 15 or lower to be OK.  I got better after jaw surgery for my sleep apnea.  sleep apnea gets worse by around age 40, so maybe there's more you can do.  if you have any sleep issues, it's worth getting that checked out because apnea increases ICP.  I think we have all lost friends to this disease.  you are very fortunate to have a supportive family.  My husband freaked out and became abusive and then left.  I had a 2 and 3 year old when I got sick.  it will be another 5 years before my daughter could take care of me if I relapsed, so I'm so grateful for my remission.  
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PostSubject: Re: My IIH Story   Wed Apr 26, 2017 4:02 pm

Welcome to the group! I'm sorry to hear you're still struggling, but I agree with Deb..it seems to be things your surgeon could address. I had a LP shunt for 15 years and switched to VP a couple years ago. We've had to do some magnet adjustments, but I'm functioning pretty well at 150 now. Have they tried any adjustments to the setting? That would be the first place I'd start.

I also had my catheter come loose at one point, so it coiled up into a ball in my side and stopped draining. They just did a quick out-patient surgery and tacked it back down, so not sure why they're taking chances by letting yours free..it could be causing headaches if it's not draining properly, so I'd mention it to your surgeon. If your current surgeon isn't being responsive, then I'd look for a second opinion. No one know your body better than you, so don't let them deter you..keeping talking until someone hears you and does something about it!

I wasn't able to work for several years in the beginning, but I'm working full time and have an active social life now..you may want to look into other causes. Have they evaluated you for stents, sleep apnea, or other types of headaches? It is possible to have multiple conditions, so you may want to try a symptom log (here's an example..http://www.ihaveiih.com/t59-i-have-iih-symptom-log). The headaches could also be a side effect of your current medication, so I would add your medications into the symptom log and see if you notice any changes before or after meds. Food, caffeine, position, sleep, activity, strain, environment, weather and so many other things can affect our symptoms, so it can be helpful in identifying any triggers.

I have unfortunately also lost friends and family with this disease, but would give them all up again for the support system I've created. It's taken a long time and I'm very selective about who I let into my circle, but I've found I'm much happier without all the negativity and judgment from those people that didn't understand or even better the "fair weather friends" that made me feel broken. It's difficult because we don't generally "look sick" and a lot of people need something tangible. Honestly, one of the reasons they changed the name was because pseudo-tumor implied nothing was really there. I suggest holding onto the people that are supportive and focusing on things you can do to make your life better. It's a difficult disease to diagnose and treat, but I'm living proof that it can get better!

Let us know if you have any questions or concerns as you look through the forum. We'll do our best to help you through this!

Take care,
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