I kept blacking out. Real quick type episodes. They were so quick that I would have one and continue what ever I was doing.
These went on about 6 years. They were so random that sure I could go see the doc about it however, I had to try and predict when it would happen. That was not happening.
My husband (at that time) Told his mother and she and he started to really push for me to get some help with it. I called the HMO I was going to and they started with everything to try and figure it out.
I had EEG, MRI's, blood work, mental work up too. The Neurologist said the he thought I was having atypical seizures and that they were deep in the brain and thats why they didn't show up on the tests. He prescribed Depokote for me.
It is at that time I became a complete zombie. I could not function at all and finally on the third week I suddenly started losing my hair and I was gaining weight too fast. Almost 3 lbs a week without changing my diet.
My husband was really concerned but has zero clue what to do to help me. He caved into himself and just put me on the couch to watch TV while he gamed in the other room.
I remembered my job and was missing it so much. I then got a card from my group/team and it made me cry. I wanted my life back. While the doctors were deciding what to do to help me they found a growth/moles on my back that needed attending. I didn't think anything of this because Skin Cancer to me was nothing really serious. I even got a call from my son who was stationed in Kuwait at this time and didn't even tell him.
I got on the Internet and looking up skin cancer because I was wondering why they needed to do a biopsy. I then found out why. Malignant melanoma. I was shocked and scared. Finally two days after finding this out they called me in. They took out huge chunks of my back in two spots because it had come back that the cells were changing into melanoma it and they needed to them out.
My husband would barley help me. I finally decided that after all this all I wanted to do was be back at my job and since the medication was hurting me more then helping me I was going to stop it and go back to work. I called the doc office an told them that the cure was way more hurtful then the cause. I got my note to go back to work.
Once year later I am about to be promoted to supervisor at a local call center (worked for a bank) and suddenly I had three of those "blacking out" in one day. After a seizure I can't function too well. I hear your question "are you ok?" but I can't answer correctly. I will want to say " yes I am" however, what comes out is something like "mickey is a great cake". Makes no sense. I know what I am going to say too and I just then can't talk. I get really sick to my stomach and my head feels like I got hit with a baseball bat. (yes I do know how that feels)
I was so scared. Three in one day. I finally called the doc office and they can get me in but not for 2 months for the neurologist. I wait the two months with having only one seizure. I finally get in but not with my normal doc. He comes in and says to me that after looking at my chart he does not think I am having seizures he thinks I am fainting and wanted to put me on some medication. In addition to this he just told me that it could effect my heart. He also said we could put you on Topamax but didn't want to do that until we tried this other one.
Now this is said about the heart and I will digress for a second. My brother just had open heart surgery, my mother in the year before this had a heart attack and my father had a pace maker and had had two heart attacks. I told him this. He also said could drop my heart rate to a point that I would get dizzy and if so just do deep knee bends and left the room. This visit was maybe 16 minutes. I asked him how in the heck after seeing the other neurologist, my PCP for over a year and a half and they all say I am having seizers and he only meets me for 15 minutes and wants me to take a medication that could effect my heart. I asked him Who the heck was he to change what everyone else had already diagnosed. He said he was the one who I was seeing that day.
I just started crying. I wanted to get back to work I didn't want to play games with medications.
one more digress. I grew up in a very substance abuse household for both my parents. Alcohol was the main drug of choice, especially for my father, for my mom it was alcohol and any pill she could get her hands on. I spent my whole life staying away from all of them. Even aspirin I would not take. When I had major surgery I woke up with 72 staple in my stomach and the nurses were begging me to take something for the pain. I would not. I was terrified to take medications.
I didn't want to become addicted like my mom and dad and brother and uncles on my mom side etc..
I stayed away from it all and suddenly now this doc wanted me to take this.
I got home and called my PCP (primary care physician)
I told her what he had said and what was going on. She read the notes on the electronic chart they keep and said well he said he would put you on Topamax instead to stop the seizures. Since your bout with the Depakote lets try you on this. Let me check dosage and I will call it in for you.
That night I got my first pill. I was never warned about the side effects.
Please stop reading this right now and look up Topamax and their side effects. Please especially read the warnings about eye pain.
after taking the topamax I had to go so (I'm starting to tear up here) Every single one of those side effects started effecting me. I started shaking and I could not talk and I could not function and my husband withdrew deep inside of himself because he just is not the type of person that can take care of the ill. I was so alone. I could not hold anything in my hands. But no one had told me about these so I was still trying to work. At work one day ( I think it was the fourth day) I was trying to do a check over the phone for a customer. I kept writing in what I thought was a 10.00 payment. But in effect and it did literally take me 5 minutes to do this. I was trying to do the check for 10000.00. My brain was not working. I had to leave. That scare the crud out of me. I was driving too at this time. (that was sooooo not a good thing) but I had no one to help me.
I got home and that night something started happening to my eyes. I could not move them without feeling like they had been dipped in sands and put back in. The pain got worse and worse and suddenly I could not stand light and everyone had to put blankets up on the windows. No one could turn a light on without telling me.
The pain because intolerant and I kept calling the doc office. Problem was I could not articulate very well and the nurse was a foreign person and she could not tell me very well what was going on. I tried for four days to get help. She would take the message and was supposed to talk to a doc and call me back. I told her about the eye pain I told her about the inability to function.. I was dying. I knew it. It was as clear to me as white on the walls. I was going to die and no one was going to help me.
Finally on the 6th day I told her if she didn't get me help I was going to come down that and kick her butt. I am not that type of person by far. she called me back (finally) told me my PCP was on vacation and that the doc in charge told her that depression was part of the medication and to give me the hot line for depression. She gave me the number I wrote it down without really thinkings.
I was shocked. I tried to talk to my husband but he was so unresponsive to me. He just tried to ignore me. Our roommates were there too. One in particular was the one my husband told to take me to all my doc appointments and if we needed groceries I was still to do the shopping and since I had had a car accident I needed this roommate to take me.
He could see what was happening to me. I told him I had this plan to kill myself. (I was not depressed I was in so much pain with my eyes and I was shaking so bad. I was losing motor skills and even fell flat on my forehead and knocked myself out one day.
I did keep calling my docs office ( I called because no one was there to take me to the hospital and I was too out of it to know what to do.)
When all this was said and done I finally called the number that doc office gave to the mental health office. I called the number and it was the darn fax number. I was so lost. I called and I called and I called. Finally I was told by another nurse that my main doc was on vacation and I was supposed to take the full dosage until she returned.
If you did read the topamax warnings and side effects you will see what happened to me. My eye some how got damaged. The problem is they don't have a clue how it happened because well people are usually taken off it immediately.
I am now going on year 5 with this pain. I am on 6 medications because of my eyes. I have to keep them dilated. I have to wear these dark classes that look like swimming goggles at all times.
Most of this post was typed with my eyes shut because of the white background.
I had to go to pain classes to learn how to live in pain. I had to sign a darn paper saying I was going to be an addict. My psychologist and I have discussed having my eyes removed because I just can't stand this pain.
I have zero friends that I can go out and do things with. I am shut in my apartment without any outside contact with people. I mean I don't go out. We might go out to dinner three times a month and that would be my contact with other humans.
I used to be a full time gamer. I love on line games. I even had two of my maps published back in 1996 on an expansion. Since this happen I can't do what I used to do. All I can do is try and do the crafting part of those games to feel like I am productive at something. I never have the energy to take showers or clean or anything. My eyes hurt to move them. As if you were reading something. They can't move back and forth or look up or down. If I do its the same feeling as if you stubbed your toe. Only this is in my head. My eye balls feel like they are being crushed almost at times.
I have to fight get to social security. My pain is not tangible. its subjective.. /spits.
Subjective my arse.. Do you know my son even had my first grand baby I can't even go see him. He is almost 9 months old. /crys.
With my pain I wish for death. Not because I want to die darn it. But when that pain hits I just want a bullet I want something to stop it. I HATE HATE HATE all these pills I have to take because of all of this.
my only consoling is that through this I have found some faith in the lord and through that faith I've allowed myself to be loved by another. Though I will tell you. I wonder just what the heck is so lovable about someone in pain all the time.
He loves me so much and helping me heal emotionally from trauma in the past.
I just wished I knew what I could give him back.
So with this I close. By far this is not the whole story. Though to some of you I would think you would think so. Its just part of the life of a person with pain. We talked about a morphine pump but that scares the heck out of me.
About the seizures. I still have them. After the topamax they gave me dilantin and I had problems with my gums and liver so they stopped all types of those medications because my body appears to not like those types.
Now down the road I just was given another anti epileptic drug but this one helps block the pain in some people. Those that have neuropathy or who have had shingles and the pain is lingering to long. I can tell you I have tried to search this medication through and through so far so good. Its seems to ease some of the pain but in a weird way. Like I'm not really here. I wonder if thats ok.
I mean how do you not move your eyes.
Thanks for the patients for reading this. I really mean that..
Debbie Morgan
Oh I got rid of that husband that didn't support me and three years later through prayer I found my soulmate to help me along this journey.
