It is a quiet day today. We got rain last night - I didn't hear a thing! I guess that is one of the benefits (?) of my meds. I take them before bed and usually sleep quite soundly - even with the fur balls sharing the bed.
I received a private comment from my niece. She has a daughter with health issues and she felt that she could understand my comments and feeling about wanting to be normal again. For her daughter there has never been any other way to be - for me there was. Maybe that is part of my anger, grief and frustration at having to live with the brain injury and the meds that control the seizures.....but don't get me wrong - Thank God that they do control them!
I continue to hear and read of all the new techniques and studies being done on/for the brain injuries suffered by our soldiers during, or as a result of, battle. I find myself feeling a little bit jealous of them. I can't tell you how grateful I am that these injuries are now being looked for, let alone recognised as real. Hopefully diagnosis and treatment comes before the soldiers have to experience siezures to get such a diagnosis. I was just injured before this realization and technology was available.....but does that mean I can not benefit from it or contribute to the knowledge of what living with it is like? I sure hope not!
Medicine has advanced so far in the past few years that I still have trouble believing that what I have (my current medications) is all there is out there for me. Maybe the neuro was right when he said that if I wasn't willing to risk losing my driver's license to see if there is a different medication that would work for me - then I had what I needed. I would have to take the risk but it would mean I risk losing my ability to continue my job. Financially I sure can't afford that yet.
I guess that really isn't my greatest concern anymore. I am more concerned with the long term effects of being on the same medication for 40 years. I know I have lost most of my teeth (Dilantin side effect) but I've been living with a denture for almost 20 years now - and kept most of my own teeth for 25 years longer then my dentist even thought was possible. What else is this medication doing to my body, my bones, my organs? No one seems to be talking about that - in fact no one but me seems to be concerned about that.
If I truely have nothing to be concerned about......would somebody PLEASE tell me and tell me why! Remember I am pretty big on the why part of things. Don't tell me something just to make me feel better if you don't know it to be fact. If you don't know - be honest enough to say so.
Are there any studies being conducted on long term use? If so - would I be of value to the study by being a member of it? I sure don't have to be but I am 40 years in to this with most of them seizure free (one break through in '83 because short on meds). Can my body, my bones, what is left of my teeth, my eyes, my organs tell you anything that you don't already know?
If there are no studies - why not? The Boomers are hitting retirement, Social Security and Medicare age. Wouldn't someone like to know what to expect cost wise, needs wise and even if there is the ability to cover it or keep up with it? Age does it's own thing to the brain's ability to function amd if you piggy back that with brain injury - are there still reliable treatments and drugs that will work? Will some drugs add to the problems of the ageing brain?
Yes, I am asking lots of questions! I am not finding any answers for the ones I have asked in the past. I am not in the medical profession so I don't know where to look for any answers that may be being found now. I know I can't be alone in my concern or with such questions. Are any research facilities looking in to this? Are there any support groups on the internet for my age group with brain injuries?
Somebody Please talk to me!!!!!!!!!!!!!!
Sunday, July 29, 2012
Wednesday, July 18, 2012
Do things smarter - Focus Focus Focus
Life goes on....but I am paying more attention. Focusing seems to help with some of the activities I have always done, but were a little uncertain about after my fall in October. As my daughter says "Do things smarter". I am trying!!!
The more I do and the more often that I do them the more comfortable I get again. My motorcycle is still sitting there looking at me and asking "when are we going out together?". That may be getting closer but I am not going to rush it - I need to get some work done to it while I am in this holding pattern with it - but I just can't afford it. We are still trying to get caught up from the "behind" that we got fixing Jeff's bike. We still had full time jobs then but 2008 happened before we got all the work paid for.
Stress in life makes living with my Brain Storms even more maddening. Every time I have to fill a perscription I think of what else I could use that money for. I guess that has been going on in my mind for a long time before now. Why does it cost so much (even the generics cost money) to stay healthy - even when I feel fit and healthy? Grocery costs do it to us too!!!
No, this isn't a depression day. I think it could be an angry day though. My moods and emotions are something that I can't explain to my family in a way that they will understand - but they are the ones who feel the brunt of whatever mood, emotion, feeling or reaction that I have. It is unfair to them and I can't explain it or even warn them what might be coming. It just comes. I often wonder how much of it is medication related.....or is just me?
I used to love beer - and in the beginning I took my meds while regularly abusing alcohol and recreational drugs. I am now approaching my 30th clean and sober birthday (in 2013) and I find that having to take drugs everyday pisses me off. I would like so much to be rid of them all. Alas, I am getting older and the reality is that no matter how well I take care of myself - I will probably have to take medications for the rest of my life. That sucks!
I am reminded of myself (as an abuser) every day as I take the medications that keep me seizure free. They say that we never really get over addictions - we just replace them. I guess if I replaced my addictions with drugs to keep me seizure free I just need to consciencly think of it that way. I know that I have replaced my beer with soda - sometimes as pop and sometimes as soda water - both 0 caleries! That is an improvement - I think.
I also quit smoking 10 or 12 years ago. It cost me too much money and I wasn't smoking them anyway - they just burned up in the ash tray. Computer time has kind of replaced them. Don't know if that is a good thing or not some days.
My life has changed. I have changed. My wants and needs have changed - but I remain pissed off that I have this brain injury that still directs and hangs over all of my life. I didn't used to be mature enough to think about it that way - I just ran away from it in my addictions. Growing up makes you think more and differently. Now I feel more overcome by it then when I would hide from it.
I have to think of it before I can even take a vitamin. I have to think of it (and so does the Doc) if I have to have any other kind of medication. I have to think of it seriously every two years when I have to have a complete physical and med workup to get my driver's license renewed. I also think of it every time I get behind the wheel or on a motorcycle, mower or operate any equipment. At those times I think of how grateful I am that I can still do those things!
That driver's license thing is not because of the seizure history as much as the medication itself - Dilantin in particular - even in the generic form. If I could get rid of that (or replace it with something else that worked as well) I could get a license like normal people! Okay - I am lucky that I can even get and have one - but it is one more reminder that I am different and have to be treated differently. Why can't I just be normal again?
I sure would like to talk to some of you out there with the same (or similar) issues in your life and how you are coping with them. It gets awfully lonely in my world sometimes. It's not fair to expect my friends and family to fully understand. They aren't living this and they have their own lives and issues. I do wonder what living with me is like - sometimes I don't even like myself!
Feel free to leave comments! Please.............Thanks!
The more I do and the more often that I do them the more comfortable I get again. My motorcycle is still sitting there looking at me and asking "when are we going out together?". That may be getting closer but I am not going to rush it - I need to get some work done to it while I am in this holding pattern with it - but I just can't afford it. We are still trying to get caught up from the "behind" that we got fixing Jeff's bike. We still had full time jobs then but 2008 happened before we got all the work paid for.
Stress in life makes living with my Brain Storms even more maddening. Every time I have to fill a perscription I think of what else I could use that money for. I guess that has been going on in my mind for a long time before now. Why does it cost so much (even the generics cost money) to stay healthy - even when I feel fit and healthy? Grocery costs do it to us too!!!
No, this isn't a depression day. I think it could be an angry day though. My moods and emotions are something that I can't explain to my family in a way that they will understand - but they are the ones who feel the brunt of whatever mood, emotion, feeling or reaction that I have. It is unfair to them and I can't explain it or even warn them what might be coming. It just comes. I often wonder how much of it is medication related.....or is just me?
I used to love beer - and in the beginning I took my meds while regularly abusing alcohol and recreational drugs. I am now approaching my 30th clean and sober birthday (in 2013) and I find that having to take drugs everyday pisses me off. I would like so much to be rid of them all. Alas, I am getting older and the reality is that no matter how well I take care of myself - I will probably have to take medications for the rest of my life. That sucks!
I am reminded of myself (as an abuser) every day as I take the medications that keep me seizure free. They say that we never really get over addictions - we just replace them. I guess if I replaced my addictions with drugs to keep me seizure free I just need to consciencly think of it that way. I know that I have replaced my beer with soda - sometimes as pop and sometimes as soda water - both 0 caleries! That is an improvement - I think.
I also quit smoking 10 or 12 years ago. It cost me too much money and I wasn't smoking them anyway - they just burned up in the ash tray. Computer time has kind of replaced them. Don't know if that is a good thing or not some days.
My life has changed. I have changed. My wants and needs have changed - but I remain pissed off that I have this brain injury that still directs and hangs over all of my life. I didn't used to be mature enough to think about it that way - I just ran away from it in my addictions. Growing up makes you think more and differently. Now I feel more overcome by it then when I would hide from it.
I have to think of it before I can even take a vitamin. I have to think of it (and so does the Doc) if I have to have any other kind of medication. I have to think of it seriously every two years when I have to have a complete physical and med workup to get my driver's license renewed. I also think of it every time I get behind the wheel or on a motorcycle, mower or operate any equipment. At those times I think of how grateful I am that I can still do those things!
That driver's license thing is not because of the seizure history as much as the medication itself - Dilantin in particular - even in the generic form. If I could get rid of that (or replace it with something else that worked as well) I could get a license like normal people! Okay - I am lucky that I can even get and have one - but it is one more reminder that I am different and have to be treated differently. Why can't I just be normal again?
I sure would like to talk to some of you out there with the same (or similar) issues in your life and how you are coping with them. It gets awfully lonely in my world sometimes. It's not fair to expect my friends and family to fully understand. They aren't living this and they have their own lives and issues. I do wonder what living with me is like - sometimes I don't even like myself!
Feel free to leave comments! Please.............Thanks!
Wednesday, June 27, 2012
New fears
Well I haven't been her for a while. Life has been busy and the weather too good to spend it sitting in front of a computer. Still I have need to share thoughts and fears of daily life with epilepsy, because it seems to be on my mind more now.
Did I tell you that I fell last fall? If so - Please bear with the repeat because it has brought up a lot of issues I thought I had put to bed or have avoided for years. I fell from a ladder while doing some winterising on our old beater camper. It was a step ladder and I fell about 5 of 6 feet.
No - I did not hit my head......but I landed flat on my back and it totally knocked the wind out of me. This is not a fun thing - I don't recomment anyone trying it. I had never experienced anything like this. It was scary but I somehow felt calm through it.
I was aware that I was laying on the ground and could feel my glasses cockeyed on my face and my mind was wondering what I needed to do about it because I could not breath and I could see layers of black with light in between. I didn't like that so I knew I had to do something so my glasses could wait - I knew they were there. In the seconds that it took for me to realise all of this I also realised that there were people around me but they were not doing anything.
I reached up - somehow knowing there was something for me to grab hold of to roll on my side so I could breathe again...............Relief!!!!!!
Just getting my breath back cleared my head and the darkness went away and the light came through. I sat up slowly and the folks that were there told me what had happened. I asked them if I hit my head and they all said "No". They said I had landed on the right side of my back and my head remained off the ground, until I reached up. They said I hit nothing on the way down. Okay - that made me feel better.
I relaxed and just rested there for a while. I checked my own head and put my glasses on straight and thought about how I felt while I was laying there after the fall....I had been conscience of myself and where I was and what perdiciment I was in. I thought about being that aware and also being calm enough to think about what I needed to do to help myself and then be able to do it. It was all a bit unreal at the time - and now.
I got up and did not feel dizzy or unstable so I went back to working on closing up the camper - but I stayed on the ground. I worked slowly and carefully paying attention to how I was feeling and performing. All was fine for a few hours, then I began to feel a little sick to my stomach - okay - I figured shock is setting in. I left for home while I was still confident that I could drive safely.
Later that night my right sholder hurt so badly, and the upset stomach was more sever, so I asked my husband to take me to the hospital. X-rays reveiled 2 fractures in my right shoulder but they did not go clear across the bone. The bone Doc put me in a sling and gave me a pain control schedule (using over the counter medication). I choose not to take perscription pain medication.
After a couple weeks in the sling (and sleeping in the recliner) the Doc started me on physical therapy. I worked hard on my therapy and I have regained full use of my arm and shoulder and had no need for surgery..........but that fall certainly got my attention!
I have told you how active I am. I drive, I ride a motorcycle, I operate tractors and mowers as well as power tools like chain saws and weed trimmers. I eat well and keep my bones strong with diet and suppliments - but being so aware of everything after that fall really has shaken me more then I realized.
I have slowed down some and tried to work smarter. What bothers me is the hit my self-esteem and self confidence has taken. I actually find myself afraid to do things I never thought twice about before! Well - I am thinking twice about them now and looking for the smarter way to do things instead of the fastest way or easiest way....but the fear remains.
I am not afraid of getting on any of the training motorcycles that I have to use to teach the classes that I teach....but I am afraid of getting on my own motorcycle. I am not afraid to run my mowers but I am not so sure about the tractor anymore. The chainsaws and trimmers are still okay. It isn't new things that scare me - it is the things I have been doing for years and have made a living doing...it is simple everyday things - not big major projects.
When will this fear go away - or at least ease up? It reminds me very much of where I was and what I felt 40 years ago. It took a while of having my seizures under control to regain that lost confidence and self-esteem and get rid of the fear of those.
I am doing things differently and thinking things through before I do them so that I can do them smarter. Do I have to learn to trust myself again?
I hate living this way again because it makes me doubt myself and fear that my seizures will begin to reoccur....I think that is the greatest fear of all. Any ideas out there? Anybody gone through something similar?
Life is too good to stop living based on fear or "what if" when there has been no indication that anything is any different today then it was last fall. Is this all emotion? Could sure use some input.........Thanks!
Did I tell you that I fell last fall? If so - Please bear with the repeat because it has brought up a lot of issues I thought I had put to bed or have avoided for years. I fell from a ladder while doing some winterising on our old beater camper. It was a step ladder and I fell about 5 of 6 feet.
No - I did not hit my head......but I landed flat on my back and it totally knocked the wind out of me. This is not a fun thing - I don't recomment anyone trying it. I had never experienced anything like this. It was scary but I somehow felt calm through it.
I was aware that I was laying on the ground and could feel my glasses cockeyed on my face and my mind was wondering what I needed to do about it because I could not breath and I could see layers of black with light in between. I didn't like that so I knew I had to do something so my glasses could wait - I knew they were there. In the seconds that it took for me to realise all of this I also realised that there were people around me but they were not doing anything.
I reached up - somehow knowing there was something for me to grab hold of to roll on my side so I could breathe again...............Relief!!!!!!
Just getting my breath back cleared my head and the darkness went away and the light came through. I sat up slowly and the folks that were there told me what had happened. I asked them if I hit my head and they all said "No". They said I had landed on the right side of my back and my head remained off the ground, until I reached up. They said I hit nothing on the way down. Okay - that made me feel better.
I relaxed and just rested there for a while. I checked my own head and put my glasses on straight and thought about how I felt while I was laying there after the fall....I had been conscience of myself and where I was and what perdiciment I was in. I thought about being that aware and also being calm enough to think about what I needed to do to help myself and then be able to do it. It was all a bit unreal at the time - and now.
I got up and did not feel dizzy or unstable so I went back to working on closing up the camper - but I stayed on the ground. I worked slowly and carefully paying attention to how I was feeling and performing. All was fine for a few hours, then I began to feel a little sick to my stomach - okay - I figured shock is setting in. I left for home while I was still confident that I could drive safely.
Later that night my right sholder hurt so badly, and the upset stomach was more sever, so I asked my husband to take me to the hospital. X-rays reveiled 2 fractures in my right shoulder but they did not go clear across the bone. The bone Doc put me in a sling and gave me a pain control schedule (using over the counter medication). I choose not to take perscription pain medication.
After a couple weeks in the sling (and sleeping in the recliner) the Doc started me on physical therapy. I worked hard on my therapy and I have regained full use of my arm and shoulder and had no need for surgery..........but that fall certainly got my attention!
I have told you how active I am. I drive, I ride a motorcycle, I operate tractors and mowers as well as power tools like chain saws and weed trimmers. I eat well and keep my bones strong with diet and suppliments - but being so aware of everything after that fall really has shaken me more then I realized.
I have slowed down some and tried to work smarter. What bothers me is the hit my self-esteem and self confidence has taken. I actually find myself afraid to do things I never thought twice about before! Well - I am thinking twice about them now and looking for the smarter way to do things instead of the fastest way or easiest way....but the fear remains.
I am not afraid of getting on any of the training motorcycles that I have to use to teach the classes that I teach....but I am afraid of getting on my own motorcycle. I am not afraid to run my mowers but I am not so sure about the tractor anymore. The chainsaws and trimmers are still okay. It isn't new things that scare me - it is the things I have been doing for years and have made a living doing...it is simple everyday things - not big major projects.
When will this fear go away - or at least ease up? It reminds me very much of where I was and what I felt 40 years ago. It took a while of having my seizures under control to regain that lost confidence and self-esteem and get rid of the fear of those.
I am doing things differently and thinking things through before I do them so that I can do them smarter. Do I have to learn to trust myself again?
I hate living this way again because it makes me doubt myself and fear that my seizures will begin to reoccur....I think that is the greatest fear of all. Any ideas out there? Anybody gone through something similar?
Life is too good to stop living based on fear or "what if" when there has been no indication that anything is any different today then it was last fall. Is this all emotion? Could sure use some input.........Thanks!
Thursday, April 19, 2012
Heard the news? Brain injury is being noticed....DAH...
I have heard so many news reports lately on new studies being done and new recognition being given to brain injury to soldiers, in sports and as a secondary injury in a crash. Why now? Why has it taken so long? Some of us have been here for years but nobody wanted to do anything about it but control the symptoms (the seizures), pat us on the head and send us back home. There is so much more to it then that....
Okay I started this blog with a brief overview - now I will go back and add some detail. I did something stupid - it was my fault and I will own that. It resulted in a concussion, a bleeding injury to my scalp and a fractured skull (which went undiagnosed). There was also an undected blood clot that formed at the location of the fracture in the temple area (a bone joint of the skull that overlapped on another bone). I was hospitalized a couple of days for the concussion and the scalp injury on the back of my head and then sent home.
It was a full year later that I began to suffer brief blackout spells. I was accused of not paying attention or of day dreaming. I was totally unaware of what was happening to me at that point. As time passed I began to become aware of the blank spaces in time. I seemed to often miss entire conversations and events - even though I know I was there. Since I was a drinker (I liked beer and sometimes abused it) I often attributed the blackout spells to that - which may have been accurate or not.
In the third year out I began to experience the grand mall type seizure. These were followed by excessive exhaustion and a need to sleep. I still had no awareness of what was happening to me - I had to rely on the reports from others as to what I did. I was agitated following one of these and apparently quite abusive to anyone around me, until I had time to sleep. This was when my children became afraid to be left alone with me. They witnessed the seizures and the aftermath. To this day they don't like to talk about that time in our lives and family.
My family doctor had been trying to help me figure things out and find a solution but when I began to wake up in places I didn't remember going to, with wet pants (losing bladder control) - he said it was past time for a specialist. So off I went for the series of appointments and tests at the university hospital in our state. Those tests and appointments dominated the next year of my life.
The Neurologists had no problem diagnosing a condition of Epilepsy and beginning me on a course of meds to control the seizures. The problem they had was telling me why. That did not seem to be important to them but it was of primary importance to me. That pissed me off then and it still pisses me off. "Why" should be the primary question and may even help lead to more effective control of the seizures.
I argued and struggled with the doctors on this issue - even after we seemed to have found a good balance of medications to control the seizures. Finally, in about the 5th year out, there was an intern who took particular interest in my question. He asked permission to simulate a mild seizure and have me explain what I felt and saw. Remember - until now I had no idea what I did or what led up to them - all I can remember is being exhausted and a bit of a bitch until I had some sleep.
Now that someone was really listening to me and was willing to help me try to find out "why" I felt safe enough to trust him. The intern placed a drop of ice water behind my ear drum.......the room was spinning and my muscles were so tense I couldn't move and I was scared to death. The feeling passed fairly quickly and I told him as much as I was able to be aware of. He did not induce a seizure but you could have fooled me. If that was what I could have been feeling (if I had been aware of what was going on) I think I would rather have been dead....and I told him so.
He thought he could see something in the x-rays that warranted a closer look and might answer my questions. I was scared but getting an answer was that important to me. Fiber optics were fairly new back then and not used as often as today but he thought that would give us more information. The fiber optic camera was inserted through my ear and in to my skull. Sure enough there was the fracture - clear as day. In the temple area one bone of my skull had slid up over another bone and a large blood clot had formed on my brain in that temple area.
He had thought that on the X-ray the bone joint in that area had looked too wide to be normal and the overlap was why - but because it was at a bone joint of the skull it was not easy to see unless being looked for. The camera also showed that the blood clot had deteriorated and it was his suspicion that the tissue there was now non-functioning scar tissue. His thoughts were that when the blood clot began to deteriorate was when I began to experience the seizures and that they increased in intensity and frequency the more that it deteriorated leaving non-functioning or scar tissue in it's place.
Like it or not and totally accurate or not .............It was an answer I could understand. It was a "why" that made sense. I could live with that. I asked him "what next?". He suggested that I stay on the course of treatment I was on and to contact the hospital right away if anything changed. I had never linked the seizures back to my earlier injuries - and neither had the other doctors. The time in between the two had been so long. The intern tied them together and found the answer to what had changed my life so dramatically.
I loved that man and I will be forever grateful to him for hearing me, listening to me and then helping to seek an answer that I could accept and live with. That changed my life far more then the meds have done. Knowing you aren't crazy is more important then all the medications, anti-depressants and psychiatry in the world......
That was in 1975. I remain on the same medications (generic versions) in 2012. When I revisited that same university hospital in 2005 and sought a re-evaluation to see if there was still a need for these meds or if there were other meds that were better - they asked me if these worked. When I said yes the neurologist asked me why I was there. He said he could run all kinds of tests and try all kinds of meds but it would cost me a lot of money and he would not do it in a clinical setting so that any adverse effects along the way would not lead to the loss of things like my Driver's License - which is necessary for my income.
So here I am today - still taking Primidone and generic Dilantin........and not having any seizures. Don't have a whole lot of my own teeth left (side effect of Dilantin they don't tell you about) but not having seizures and still able to work.......and wondering how long they will keep working as I age. Is anyone looking at us "long term" brain injuries - or just the new ones?
We can save them a lot of time if they were to listen to our stories and see the time pattern.
May today be a good day for us all.......
Okay I started this blog with a brief overview - now I will go back and add some detail. I did something stupid - it was my fault and I will own that. It resulted in a concussion, a bleeding injury to my scalp and a fractured skull (which went undiagnosed). There was also an undected blood clot that formed at the location of the fracture in the temple area (a bone joint of the skull that overlapped on another bone). I was hospitalized a couple of days for the concussion and the scalp injury on the back of my head and then sent home.
It was a full year later that I began to suffer brief blackout spells. I was accused of not paying attention or of day dreaming. I was totally unaware of what was happening to me at that point. As time passed I began to become aware of the blank spaces in time. I seemed to often miss entire conversations and events - even though I know I was there. Since I was a drinker (I liked beer and sometimes abused it) I often attributed the blackout spells to that - which may have been accurate or not.
In the third year out I began to experience the grand mall type seizure. These were followed by excessive exhaustion and a need to sleep. I still had no awareness of what was happening to me - I had to rely on the reports from others as to what I did. I was agitated following one of these and apparently quite abusive to anyone around me, until I had time to sleep. This was when my children became afraid to be left alone with me. They witnessed the seizures and the aftermath. To this day they don't like to talk about that time in our lives and family.
My family doctor had been trying to help me figure things out and find a solution but when I began to wake up in places I didn't remember going to, with wet pants (losing bladder control) - he said it was past time for a specialist. So off I went for the series of appointments and tests at the university hospital in our state. Those tests and appointments dominated the next year of my life.
The Neurologists had no problem diagnosing a condition of Epilepsy and beginning me on a course of meds to control the seizures. The problem they had was telling me why. That did not seem to be important to them but it was of primary importance to me. That pissed me off then and it still pisses me off. "Why" should be the primary question and may even help lead to more effective control of the seizures.
I argued and struggled with the doctors on this issue - even after we seemed to have found a good balance of medications to control the seizures. Finally, in about the 5th year out, there was an intern who took particular interest in my question. He asked permission to simulate a mild seizure and have me explain what I felt and saw. Remember - until now I had no idea what I did or what led up to them - all I can remember is being exhausted and a bit of a bitch until I had some sleep.
Now that someone was really listening to me and was willing to help me try to find out "why" I felt safe enough to trust him. The intern placed a drop of ice water behind my ear drum.......the room was spinning and my muscles were so tense I couldn't move and I was scared to death. The feeling passed fairly quickly and I told him as much as I was able to be aware of. He did not induce a seizure but you could have fooled me. If that was what I could have been feeling (if I had been aware of what was going on) I think I would rather have been dead....and I told him so.
He thought he could see something in the x-rays that warranted a closer look and might answer my questions. I was scared but getting an answer was that important to me. Fiber optics were fairly new back then and not used as often as today but he thought that would give us more information. The fiber optic camera was inserted through my ear and in to my skull. Sure enough there was the fracture - clear as day. In the temple area one bone of my skull had slid up over another bone and a large blood clot had formed on my brain in that temple area.
He had thought that on the X-ray the bone joint in that area had looked too wide to be normal and the overlap was why - but because it was at a bone joint of the skull it was not easy to see unless being looked for. The camera also showed that the blood clot had deteriorated and it was his suspicion that the tissue there was now non-functioning scar tissue. His thoughts were that when the blood clot began to deteriorate was when I began to experience the seizures and that they increased in intensity and frequency the more that it deteriorated leaving non-functioning or scar tissue in it's place.
Like it or not and totally accurate or not .............It was an answer I could understand. It was a "why" that made sense. I could live with that. I asked him "what next?". He suggested that I stay on the course of treatment I was on and to contact the hospital right away if anything changed. I had never linked the seizures back to my earlier injuries - and neither had the other doctors. The time in between the two had been so long. The intern tied them together and found the answer to what had changed my life so dramatically.
I loved that man and I will be forever grateful to him for hearing me, listening to me and then helping to seek an answer that I could accept and live with. That changed my life far more then the meds have done. Knowing you aren't crazy is more important then all the medications, anti-depressants and psychiatry in the world......
That was in 1975. I remain on the same medications (generic versions) in 2012. When I revisited that same university hospital in 2005 and sought a re-evaluation to see if there was still a need for these meds or if there were other meds that were better - they asked me if these worked. When I said yes the neurologist asked me why I was there. He said he could run all kinds of tests and try all kinds of meds but it would cost me a lot of money and he would not do it in a clinical setting so that any adverse effects along the way would not lead to the loss of things like my Driver's License - which is necessary for my income.
So here I am today - still taking Primidone and generic Dilantin........and not having any seizures. Don't have a whole lot of my own teeth left (side effect of Dilantin they don't tell you about) but not having seizures and still able to work.......and wondering how long they will keep working as I age. Is anyone looking at us "long term" brain injuries - or just the new ones?
We can save them a lot of time if they were to listen to our stories and see the time pattern.
May today be a good day for us all.......
Thursday, April 12, 2012
In the beginning.....
Just getting started on this blog. Epilepsy is another part of my life that I have to live with every day but that few people know about or understand. I have been living with epilepsy since 1973 - after having seizures of one sort or another since 1971 when I received a head injury and skull fracture (the fracture went undiagnosed).
Yeah, I am mad - but they didn't have all the diagnostic tools and tests back then that they have today.....A concussion was a big bump on the head and they watched you to make sure you didn't have anything more serious but I don't think anybody really understood what was happening inside the head. Brain injury just wasn't considered an injury of great magnitude - unless you were bleeding a whole lot or had brain matter exposed. We know better today!
I slipped through a lot of cracks until my seizures became noticeable to others and more frequent and eventually more intense. I had no idea what was happening - I wasn't aware during the events to know that they even happened. Others had to tell me. Talk about thinking you are going crazy..........
I began to ask a lot of questions and didn't settle for the answers I was receiving. All I wanted to know was WHY........why was I having weird stuff happening to me that had never happened before? What was it all about? Why did I miss whole segments of a conversation when I was sitting right there? People accused me of not paying attention - but I thought I was. Later came the times when I would think I was waking up from a day-dream and my pants were wet because I peed myself.....how did that happen? I was still sitting there and hadn't moved - how could I not know I had to go to the bathroom? I was at work - what do I do now? As the seizures progressed over time my own children became afraid to be left alone with me.....what was this all about????????
My own family doctor could not help me find the solutions or reason so he advised me to seek a specialist. He referred me to the training hospital at the university. Even with his referral getting in there was tough. I also lived a 4 hour drive away and they always wanted me there first thing in the morning (like 7 AM), which meant my husband and I had to drive down the night before. Grandma got bonus time with the kids!
We got caught sleeping in the back of the car in the parking ramp - apparently that was a no-no even if you are clothed and married. We also got caught sleeping in the car in one of the parks close to the hospital - but the cops were a lot more understanding but a bit confused. What were we doing toward the back of the park in the dark if we were married? When we explained everything they advised us to move to a safer location near the lights.....so we got a tarp to cover our heads with so we could sleep.
To make this long story short (for this entry anyway) I received my head injury in 1971; I was not diagnosed until 1973 and then I didn't get the seizures under control and the answer to my WHY question until 1975. It is now 2012.
Thank God that I have only had one breakthrough seizure since then (a holiday weekend - ran out of meds) and I am still on those same meds (generic versions now). The dosage changes from time to time because my current family doctor listens to me and we listen to my body. When I start feeling weird, for no apparent reason, we run a blood test. I have to keep my med level on the low side of therapeutic to keep from triggering pedit mall or Deju Vue type of incidents.
Hey - this is just the beginning. I am here to testify to the fact that you can live with epilepsy......maybe it isn't always on our terms but it could be worse............I am wondering what to expect from here and what ageing and long term med use and life has in store for me.......
Feedback and insight is invited....................
Yeah, I am mad - but they didn't have all the diagnostic tools and tests back then that they have today.....A concussion was a big bump on the head and they watched you to make sure you didn't have anything more serious but I don't think anybody really understood what was happening inside the head. Brain injury just wasn't considered an injury of great magnitude - unless you were bleeding a whole lot or had brain matter exposed. We know better today!
I slipped through a lot of cracks until my seizures became noticeable to others and more frequent and eventually more intense. I had no idea what was happening - I wasn't aware during the events to know that they even happened. Others had to tell me. Talk about thinking you are going crazy..........
I began to ask a lot of questions and didn't settle for the answers I was receiving. All I wanted to know was WHY........why was I having weird stuff happening to me that had never happened before? What was it all about? Why did I miss whole segments of a conversation when I was sitting right there? People accused me of not paying attention - but I thought I was. Later came the times when I would think I was waking up from a day-dream and my pants were wet because I peed myself.....how did that happen? I was still sitting there and hadn't moved - how could I not know I had to go to the bathroom? I was at work - what do I do now? As the seizures progressed over time my own children became afraid to be left alone with me.....what was this all about????????
My own family doctor could not help me find the solutions or reason so he advised me to seek a specialist. He referred me to the training hospital at the university. Even with his referral getting in there was tough. I also lived a 4 hour drive away and they always wanted me there first thing in the morning (like 7 AM), which meant my husband and I had to drive down the night before. Grandma got bonus time with the kids!
We got caught sleeping in the back of the car in the parking ramp - apparently that was a no-no even if you are clothed and married. We also got caught sleeping in the car in one of the parks close to the hospital - but the cops were a lot more understanding but a bit confused. What were we doing toward the back of the park in the dark if we were married? When we explained everything they advised us to move to a safer location near the lights.....so we got a tarp to cover our heads with so we could sleep.
To make this long story short (for this entry anyway) I received my head injury in 1971; I was not diagnosed until 1973 and then I didn't get the seizures under control and the answer to my WHY question until 1975. It is now 2012.
Thank God that I have only had one breakthrough seizure since then (a holiday weekend - ran out of meds) and I am still on those same meds (generic versions now). The dosage changes from time to time because my current family doctor listens to me and we listen to my body. When I start feeling weird, for no apparent reason, we run a blood test. I have to keep my med level on the low side of therapeutic to keep from triggering pedit mall or Deju Vue type of incidents.
Hey - this is just the beginning. I am here to testify to the fact that you can live with epilepsy......maybe it isn't always on our terms but it could be worse............I am wondering what to expect from here and what ageing and long term med use and life has in store for me.......
Feedback and insight is invited....................
I am an Epileptic and I am living with it - some days better then others....
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| This is what I use to see on the inside of my eyelids |
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