Tuesday, May 3, 2011

My story.

My name is Anna-Maria, and I started suffering with migraines when I was 13. They were so incredibly painful I had to be in a dark room and it HAD to be quite, they would get so bad I would throw up from the pain. I saw a doctor and he prescribed me a medication that helped but did not make them go away all the way. They eventually went away all together, and I was pain free for many years, then when I was 23 I started getting them again but this time they were even more painful. I would black out, I started missing more and more work. Eventually getting fired. I lost my apt and had to move in with my boyfriend at the time. After many doctor visits with my primary, she referred me to a neurologist she did several spinal taps, and my cerebrospinal fluid was too high. She tried all kinds of different medication(diomox, topamax)etc..The topamax made me hear voices that was the scariest thing ever! Nothing ever worked, so I gave up and stopped going just dealing with the headaches.


Then after having my daughter in 2006, things got worse. Migraines, blacking out became too much. I started talking to my primary and she thought I should see another neurologist. I was not happy with that idea since in the past nothing had worked. So I did nothing. When my daughter was 1 1/2 I started having seizures, and that was the second scariest thing, blacking out with my daughter in the room.  I often fell and hit my head, or some other part of my body. I never knew how long I had been out or what my daughter had been doing while I was out. I became very scared, not for me but for my child. So I went to my primary and asked her to refer me to another neurologist, because I no longer liked or trusted the previous one. In 2008 I began seeing my new neurologist, and he was awesome. Asked me questions that had never been asked, ran tests that hadn't been run in the past. The only thing I hated was the spinal taps, I believe I had 8 in a 10 month period of time. My spinal fluid was always very high, so he diagnosed me with intracranial hypertension/pseudo tumor cerebri. And put me on a dozen or more medications. I think I took 13 or more pills every night and 5 more in the morning.


They worked for a while, then the pain got worse. More and more seizures, I went through many changes of different doses of medication. Nothing ever worked except the medication for my seizures. I kept telling my neurologist that I was still in pain and would suffer from migraines for sometimes months at a time, and when you have a child it doesn't matter if you need to lay in bed and not move it's just not going to happen. I am thankful I have a VERY understanding boyfriend and mother, they would take care of my daughter allot. Now I am going to fast forward to 2010/2011, I am now not taking so many pills and I am still in pain. My neurologist, has now diagnosed me with Arnold chiari malformation. And I have to see a neurosurgeon. The pain is getting worse, I have a hard time swallowing, moving my neck every symptom that comes along with Chiari I have. I am making this blog as a way to vent, and hopefully help someone else vent.

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