In July of 2008 I was a happy, healthy, active 29 year old wife,CFO and mom to a beautiful 2 and a half year old little girl.
By July of 2009 I was an unhappy, unhealthy, debilitated 30 year old woman with a shunt in her spine who couldn't even pick up her beautiful 3 and a half year old little girl.
Let me introduce myself-My name is April and I am a 30 year old female who was diagnosed with Intracranial Hypertension in 2009. Intracranial Hypertension (IH) is a neurological disorder in which cerebrospinal fluid (CSF) pressure within the skull is too high. "Intracranial" means "within the skull." "Hypertension" means "high fluid pressure." IH has three common sypmtoms-severe headache that does not go away even with some of the most potent pain killers, visual changes due to swollen optic nerves (known as papilledema) and a whosshing noise in one or both ears. This does not mean you have to have all three to have IH. One of the most serious consequences of IH is vision loss which can lead to blindness. It is most often a life-long illness with enourmous physical, financial and emotional repercussions. Without the support, love, compassion and understanding I received from my family, friends, boss and co-workers I would be among many of the people today who are jobless and homeless.
My journey started out in December of 2008 with what I thought were intermittent headaches. They became more frequent, more severe and more unbearable. They came and went in the beginning. Over time it was a constant pain-every day, every minute, every breath became painful. I went to see a local neurologist who did an MRI and a brain scan. He told me it was nothing but severe migraines. He gave me some pain pills and said come back in 4 weeks if the pain does not go away.
I went home and suffered in pure agony. The pain pills did nothing for me. I could not focus. I could not function, those around me told me I was gray and I wasn't myself. How many times do you want to hear that? I felt like I wasn't even living life. It hurt to hear my daughter laugh. I could not play with her anymore. I work with numbers for a living and can do math in my head and I was at a point where I could not even do a simple multiplication problem. I wanted to curl in to the deepest, darkest hole I could find and be left alone. It hurt to talk, to listen, to breathe. I felt like my life was slowly slipping away from me. About 2 weeks in to my 4 weeks I decided I needed another opinion because this was no migraine.
I pursued this feeling of not right with one of the top brain surgeons in the country. When I described my symptoms to him he told me it was either lymes disease or Intracranial Hypertension. He said I would need a lumbar puncture to confirm this. I went for my lumbar puncture on a Wednesday-the day before my daughter's third birthday.
I was told the lumbar puncture was a common practice procedure and the odds of problems after it were slim to none. The worst would be a spinal headache for a few hours (heck after the pains I had been dealing with what was a little more pain to find relief?) If it was IH they could do a therapeutic draw (drain some of the excess fluid around my brain) and that could help alleviate if not take away my pain. The lumbar puncture confirmed in fact my pressure levels were elevated and I had IH so they did a therapeutic draw.
I went home and was flat on my back for 24 hours afterwards as directed. I only got up to go to the bathroom. It is extremely hard to tell your 3 year old you can't pick her up, you can't play with her and that she can't lay on your tummy-they just don't understand. The hardest part was hearing-"Mommy don't you love me anymore?" Those words tore my heart right out of my chest.
I decided to go to work on Friday. On my way to work I felt absolutely horrid. My head hurt worse than it ever had and I felt like I was going to pass out. Once I arrived at work I felt like I needed to just lie down. I laid down on the floor and that is where I stayed for most of the day (I am lucky enough to have an extremely supportive, loving and undertsanding boss). I drove home after work and by the time I got to my daughter's daycare I was ready to throw up. I barely made it in her home and to the bathroom before it happened. When I was done I asked her if I could lie on her couch for a moment. I had been informed by the doctor who did the lumbar puncture to beware of throwing up and to call if it happened. I called the number and they directed me to go to my local ER immediately. I knew I could never make it there on my own. My daycare was willing to keep my daughter for me and drive me to the hospital. I called my Father-In-Law and told him I need you to come get me-I think I am dying. My husband was working in Manhattan at the time and was not going to be in the area for another hour or better. My in-laws came and picked me up and drove me to the ER.
Once there I explained that there had been a lumbar puncture done on Wednesday. They took me in and said-you have become dehydrated. They gave me three IV bags of fluid and a shot of morphine and sent me home. I again decided I would lie flat for a day so I did nothing Saturday. On Sunday I moved around a little in the afternoon and by Monday morning I was worse than ever. I was throwing up by the time I got to work. When my boss got in to the office she again found me lying on the floor curled up in a ball. She told me this is not right-you look like you died. She made me call my husband to come pick me up. My husband drove me out to the ER of where the lumbar puncture had been done. It turns out the hole from the Lumbar puncture did not close after the procedure so I was leaking spinal fluid. Leaking cerebrospinal fluid could cause the brain to sag which could lead to life threatening complications if not death. They had to do a blood patch to fix the hole. Once that took effect I was feeling pretty good....for about 2 months.
Around Easter of 2009 my head started screaming again but now I was having vision issues. I would get a curtain effect or "dim-outs" and blurred vision. "Dim-outs" are episodes where vision is momentarily lost in one or both eyes anywhere from 30 seconds to a couple of minutes. I had a hard time focusing and my concentration was non-existent. The pain and the vision problems were beyond excruciating torture for me. I went back to my neurosurgeon who sent me to a neuro-opthalmologist to check for papilledema.
The neuro-opthalmologist said that there was no damage done to my optic nerve from the increased pressures but we needed to get the levels down.She put me on Diamoxx. This medication is used to try and reduce the fluid levels. The side effects were horrible for me. Tingly toes, nausea, dizziness and drowsiness. How could I function like this? I have a toddler at home, a career, a family. I spoke with my neurosurgeon who told me the only other option was a shunt to help keep the fluid levels down to try and prevent pressure build up in the brain. There are three kinds of shunts-a Lumboperitoneal shunt (LP Shunt) which goes in the spine, a Ventriculoperitoneal shunt (VP Shunt) which goes in the brain and a Cisterna magnum shunt which goes from the back of the head and is generally used when the LP & VP shunts are not possible. With any shunt there is no guarantee it will work. It can clog causing the levels to go up, it can become kinked or stop working again resulting in increased pressures. They can also lead to infections.
I had my lumbar shunt placed in July of 2009. I was told it would probably be about a week out of work. I ended up out of work for more than 6 weeks. It took a long time for the shunt to work properly and I suffered severe headaches for weeks after placement. Again I am lucky to have a boss who cares. It has helped but I still have bad days (have even had to have co-workers leave early to drive me home) and always worry that I may end up blind because the shunt will fail and the pressures will increase. There is no known cause or cure for this disease. I never in a million years thought that I would be celebrating my 30th birthday lying in bed after having a shunt put in my spine. This is where they started me. Some people go through shunt after shunt. A large majority of IH sufferers end up permanently disabled. I pray daily that my shunt will not fail. I strive to live a full life and be able to watch my daughter grow up. I want to be able to always SEE her smile, SEE her eyes light up with happiness,SEE her get married, SEE my grandchildren. I live with the fear that unless a cure is found I could lose my sight and miss out on so much of her life.
In the hopes of raising awareness as well as funds for IH, I am doing a local fundraiser, I have set up this page & plan to pursue other avenues for change. My goal is to change my status from IHave to IHad for everyone who suffers from this disease. No one should ever have to suffer this way. It is not known if this is hereditary or not and I do not want to watch my daughter or other IH sufferers loved ones go through the pain,the suffering and the fears that we all have. I want everyone to be happy and healthy and not worry about this crippling and life altering disease. Someday with hope and determination-the cause will be found and a cure will be an actuality and not a dream.
PLEASE PLEASE if you are suffering from severe headaches, vision issues, noise in your ears and the doctor tells you it is just migraines pursue it further. IH is often misdiagnosed as mere migraines when it is so much more. If even one person is correctly diagnosed because of my story, than sharing my pain riddled journey is worth it.
"Moving Forward with the support & love of my husband, daughter, family & friends"
"IHope to change IHave to IHad"
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Thank You from my Heart!