Idiopathic Intracranial Hypertension - "My Pain"

I was diagnosed with Idiopathic Intracranial Hypertension (Pseudotumor Cerebri) in May 2009 after nearly a year of struggling to find some sort of answer for the terrible symptoms I was having. I hope this video helps convey what it's like to live with this illness. Although it is rare, there are many other people out there who suffer with this every day. We need to find a cure!

UPDATE: In September 2011, I had a programmable VP shunt put in. This is the shunt I should have had 2 years ago! It took a while to find a very good neurosurgeon. In December 2012 I had emergency surgery as the distal end of my VP shunt migrated and coiled 6 times around, all mixed up with scar tissue and a large pocket of CSF. The blocked shunt caused fluid to build up at the back of my head where the valve was. Now things have settled down and hopefully things will be better from here on!

- Aw, man, I just got out of the hospital and I'm back again - Shunt blocked again and I had a VP revision on January 11, 2012. Not the best way to start off the new year, but this illness always seems to find a way to make life challenging. Hopefully the new extra attachments will stop it from migrating and blocking again. I'm tired of living in the hospital!

Thanks to: www.iihsupport.org/index.php? for creating a support forum so we can encourage and comfort others who are going through this

Thanks to: www.ihrfoundation.org for searching endlessly for a cure. Please support them however you can.

Thanks to: Family and friends who have been through the rough times. May there be brighter days ahead.

Thanks to my new doctors who have been excellent in listening, recognizing what's going on, and actually helping to make life better. I wish I had found all of you years ago, but thanks for being there for me now.

And thanks to: www.animoto.com who provided a way to visually create what it's like to suffer with intracranial pressure. In my condition, there's no way I could have made a video like this on my own. Their programing made it easy. Thanks!

Category:

Nonprofits & Activism

Tags:

• idiopathic
• Intracranial
• Hypertension
• Pseudotumor
• Cerebri
• IIH
• BIH
• IH
• LP
• VP
• shunt
• headaches
• pressure
• My
• Pain
• surgery
• photophobia
• animoto
• blocked
• migration
• revision

[petsally]

I was diagnosed with IH in 2001 at the age of 12. Back then, it was still pretty uncommon. I was more or less a guinea pig, and my case is even in some medical books. I still struggle with it, but it's a lot more under control than it used to be. I really feel like you can't understand it unless you have it. When I tell people about it, they're response is "Oh, you have headaches. Me, too." But no, it's not "just headaches." It's a debilitating disease than can take over your whole life.

[jennywaldemaras]

@petsally @petsally Sorry to hear you've been struggling all these years. I totally get you when you say that people say "Oh, you have headaches, Me, too." There is no comparison at all. Migraine times 100 might come close. I hate the feeling that your head is going to explode. My VP shunt has helped a lot, but it's not perfect. And I've suffered brain injury as a result of all the pressure and surgeries. That makes life hard. You must be about 23 now? Has anything made things better?

[petsally]

@jennywaldemaras

I'll be 23 in September. Luckily, I haven't had to get a shunt thus far. I've had more lumbar punctures than I can count, and I've been on Topamax and Diamox since I was diagnosed. The side effects of those are unpleasant, but I'd take them over the excruciating pain any day! I've tried coming off of them a few times, but each time I ended up back in the hospital for a week with a Thorazine drip.

What medicine do you take at the onset of a headache?

[jennywaldemaras]

@petsally Topamaz? Yikes! It works for some, but the side effects I got weren't worth it. Diamox made me so sick - like chemotherapy in a pill. Both LP shunts weren't helpful. The programmable VP shunt really has reduced the headaches. I also have carpal tunnel and other nerve pain, so I always wear a Fentanyl patch to reduce pain. But when the headaches are bad, I try to lay down as soon as I can and wrap very warm heat packs around my head. The heat really helps me. How about you?

[uniqueleanne]

hi i have this illness its very frustrating its like one big circle, im forever in hospital having so many treatments but nothing seems to work. i have a lp shunt and it has taken 60% of my vision away, my doctors have near enough gave up with me ive had so many operations nothing seems to work the pain is unbarable they recently put me on morphine i'd love too go back 2years were i wasn't taking so many tablets a day and was pain free but we can only hope and wish. xx

[jennywaldemaras]

Ah, that feeling that you wish you could just go back in time to when you didn't hurt all the time and life was so much better. I know that feeling. You look at other people carry on with their lives, completely oblivious to how great it is to not be in constant agonizing pain, or to be in a hospital all the time, or worry about what is going to happen next. It's so hard. You said you had an LP shunt. The LP one didn't help. I found a new doctor who put in a VP shunt. Much better!

[jgormo]

I got diagnosed with IH with in September 2011. I am 19 years old. I have had countless emergency room visits and lumbar punctures. I have caught infections through the lps and am on daily loads of medication. I have lost 90% vision in my right eye and my neurologist confirmed yesterday the fluid has now spread and is building up behind my left eye. I am awaiting to hear about having a vp shunt put in x

[patacual1]

Dear all, I've had IIH from 2009-2011. I had the typical symtoms, and had to take Diamox for almost 2 years with very slow progress. And then, I realized that I was biting very strongly during the night and that was making everything much worse. I got a biting mask, and in a month or so I was able to stop Diamox and I've been fine since. I'm not sure how much of my illness was made by myself, worrying and stressing out about everything. Has anybody have this experience?

[Karoger1987]

@jennywaldemaras Yeah I'm doing great with my new heart, it's been nearly two years. doesn't seem that long! :)

[jennywaldemaras]

I don't understand why life has to be so hard and unfair. Have you recovered well from the heart transplant? About the headaches... when you have IIH, you sort of get used to having headaches all the time that it becomes your new "normal". Sometimes I don't realize just how bad my headaches have been until I have a lumbar puncture to remove fluid, or my shunt gets adjusted and you feel great all of a sudden and you realize how wonderful life is for everyone else. Hang in there!