My brain is being squashed by csf...

a depiction of how my headache feels

Today the weather was rainy and cold. When ever the weather changes my intracranial pressure increases and I am instantly in a ton of pain. On a scale of 1-10 i am currently at about 8/9. My pain tolerance is pretty high now due to the fact I function normally at about a 5/6 daily. I have tried everything  to help relieve the pressure but nothing works so now I'm just venting trying hard to focus my attention on something other than my head pain. I am hopeful that the pain will subside soon otherwise I will be forced to take medications which won't relieve the pain but will help me sleep a little tonight. If you're out there reading this thanks and let me know how you deal with your headaches.

The Spoon Theory by Christine Miserandino

I recently read The Spoon Theory by Christine Miserandino. It's a great story she used to describe what it's like living with an chronic illness. Living with a chronic illness is especially difficult when you look normal on the outside. People have a hard time accepting that your sick because you don't look the part. I know that for my family this is especially difficult. It has also been very hard for me to describe to anyone what I'm going through living with an illness that I can't control.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

What is IIH...

Idiopathic Intracranial Hypertension (IIH) is a neurological condition of the brain. It is also more commonly known as Pseudotumor Cerebri which means false brain tumor. The brains perceives incorrectly that there is a problem within your brain producing cerebral spinal fluid (csf) to protect itself. Eventually the brain produces too much csf and it begins to compress the brain causing severe headaches, papillodema of the eyes which could lead to blindness if left untreated and a host of other symptoms. I have started a running list of my symptoms which I will include here:

Numbness and tingling on right side of head

Pulsing tinnitus in both ears, really loud in the right ear

Pressure behind the eyes

Black spots in both eyes, sometimes resemble oil slicks

Pulsing headaches in the back of my head. Worse when lying down.

Sometimes awoken in the middle of the night due to head pain.

Left knee pain that comes and goes

Left wrist pain that comes and goes

Lower left back pain

Pulsing pain up and down spinal column

Nausea

Dizziness

Fatigue

Light Sensitivity

High pitch noise sensitivity

 Okay I know that's a lot but it's what I deal with on a daily basis and it absolutely sucks.  The Intracranial Hypertension Research Foundation (IHRF) is an excellent resource if you are trying to lean more about IIH. IHRF is the only foundation in the world dedicated to finding a cure for this illness. I highly encourage everyone to support this organization. Also feel free to tell me about your symptoms or ask me any questions you want related to IIH.

If shunting is in your future ask these questions...

Recently I was told that it's time to consult with a Neurosurgeon about putting a shunt in my brain to relieve the extra fluid. Even though I know this is probably my best option at the moment I am still having a hard time with the fact that having this illness could mean brain surgery. I put together a list of questions for my doctors. I'm sure they won't all get answered and if your reading this and your getting a shunt soon pick the ones that are most important to you and have your doctor answer those for you. Also if you have any questions to add feel free to do so.

Questions for the Neuro. Surgeon:

1. What is the estimated life span for either a VP or LP shunt?

2. How do you determine what shunt procedure is best for me?

3. What are the distinct differences between VP and LP shunt?

4. Would I qualify for a VP shunt due certain medical specifications?

5. Will I be receiving a either programmable (adjustable) shunt?  If not an adjustable shunt why?

6. What will happen to a programmable shunt if I need to travel for vacations etc?

7. Are they easily affected by airport scanners?

8. What are the chances for a shunt malfunction?

9. How long will my case be followed after I receive the surgery? How will I physically know if the shunt is malfunctioning?

10. Can the VP or LP shunt be removed at anytime for any reason after it has been placed into the body?

11. After placement what is the estimated recovery time?

12. How long will I have to be in the hospital?

13. Will it relieve my headaches?

14.  How quickly will my papillodema go away?

15. How long after can I resume normal activity? Will I be able to drive?

16. How many shunt procedures have you performed?

17. What are the tests performed in the hospital to determine if the shunt is malfunctioning?

18. What are the chances of over draining with either shunt?

19. What are the risks involved with having  shunt installed.

20. Will I be able to apply for temporary disability during my recovery phase of the operation?

21. How long is the surgery to install the shunt?

Welcome...

I was diagnosed with IH almost two years ago. Currently I'm struggling with the facts of my condition and the possibility that a surgery is in my near future either a VP or LP shunt. It turns out that I have a severe sulfa allergy that prevents me from taking Diamox, Lasix, topamax etc. These drugs are normally used to treat IH. Surgery looks to be the only option left. I'm currently working with several neurologists who will help me determine if having a shunt installed is the right option. 

I wanted to start this blog because this illness gets so little attention. My fellow sufferers out there know what I'm talking about. If you come across this blog and wanna know more about IH. Please go to this website:

http://www.ihrfoundation.org/

I have learned so much about my illness from this foundation and if you have just been diagnosed this is a great resource. I am also a member of an online support group at dailystrength.org.

My life has completely changed due to this illness and honestly I feel quite lost most of the time now. Some of my dreams have been deferred indefinitely until I can get a clear understanding of how i am going to live my life now with a chronic illness. My goals are rapidly changing now and I need an outlet to voice my concerns, fears, sadness, and anxiety. So hopefully you will follow me on my journey into the unknown and give me some advice.

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