It almost seems like I've tried everything to control my migraines. Some people believe that stress plays a large roll in migraines. This indicates that there is a psychological factor to them. That maybe, just maybe we have some control over our migraines.
I have never believed that stress, emotions or psychological factors has played any role in my migraines. This did not stop me from trying to control them with the power of suggestion. One day as the telltale sign floated into my vision I got angry! I'm going to WILL this migraine to stop! This is my body and I should be able to control it. I laid down in my bed, closed my eyes and thought about clear vision. This was not happening, I can make my vision clear. If I can just make myself see without hindrance I can stop this migraine. I calmed myself and just focused on stopping this migraine......
Didn't work.
Saturday, February 7, 2009
WHAT'S GOING ON RIGHT NOW
I haven't written all the posts that I want to about my experience but the following is a summary of where I am right now.
I went to see the endocrinologist, Dr. Jennings, recently. Basically he just took blood and asked me how I was doing. Of course I knew he was going to ask me this so on the very long trip down there I thought about that question. I do have a problem saying to him "I'm feeling much better" since I think saying that was one of my big problems with my last endocrinologist. She would only hear that part, not the part that I was still not feeling 100%. She would just assume that I was on the right path and that she could send me off and see me in 6 or 9 months. Also, the way things go for me I can be feeling pretty good and then suddenly be thrown into another round of migraines and feeling lousy.
So as I thought about it I realized just how much better I feel. I thought about my first visit to him at the beginning of June and how badly I was feeling then. I thought about how I had to have Tom drive me because I knew that I would not be able to do it on my own. I remember that I was very overwhelmed and had that whacked out feeling that I can only try to describe to you. Its sort of like I'm on some sort of drug or something. I can remember leaving that visit and walking out into the streets of Philadelphia and being in a complete fog. At that visit I had been so overwhelmed that I almost passed out when he took my blood - I have that tendency but now have it under control because I know all I have to do is look away and it doesn't bother me a bit (except that day). I thought I was babbling but Tom said I wasn't. My mental functioning was just so far gone that I had just stopped doing anything complicated.
Back then, anything would overwhelm me. I remember I avoided anything upsetting because I knew my body could not physically handle it. I had decided that I wanted to go back to work when Sarah entered high school and realized that I would not be able to handle that in my current state. The thought of a job interview was petrifying. I couldn't even handle a visit to the mall sometimes. When I was visiting my brother in Georgia we went to the zoo. I almost couldn't make it - as we were walking in I started to feel weird and thought I would get a migraine. I went back to the van, let my body calm down and went in anyways.
I was huffing and puffing so much that I couldn't go up the stairs in our house even one time without being out of breath. I remember once I walked up and tried to talk to Sarah at the top and had to wait because I couldn't speak...that's pretty bad. Obviously, physical activity was out of the question.
There are many little things that have gotten better as well. The computer screen has not been flickering for about a month now (only flickered for me...I've asked others "is it flickering"). Another thing: I'm not sure what they are called but when you stare at something for a long time and then look away a rough outline/image seems to linger in your vision. That would happen to me after looking at things for a couple of seconds. At my worst I could visually drag a "ghost" of something away from it. It's is much better but not 100%. Back then I seemed to have so many weird things like that happening to me that I couldn't even tell the doctors all the things without sounding crazy or taking up hours of their time.
November of 2005 was probably the last time I felt normal.
So I decided to tell the doctor how I'm looking at things in the big picture. I've been going to him for about 8 months and over that time I am much better but the progress is slow going. I told him that I'm in the phase where I realize I am better but extremely leery that I could get worse again. I told him back in June I was looking for a magic pill that would make me better in 2 weeks. Now I am realizing that its not just one thing that is making me better. It's all the things I'm doing. its switching to Armour Thyroid, taking the iron and taking the migraine medication. He said, even if you find a magic pill in endocrinology, it takes weeks to work. He did not throw me out into the world and deem me cured. He wants to see me in 4 months which is good. My old doctor would have probably said 9 months. I was constantly calling her to move my appointments up and ended up seeing her every two months - still without ever really getting better.
So as I was leaving he said "it was good to see you". To which I answered "it was good to see YOU". To which he answered "Its good to see you feeling so much better!" I started to feel like we were going back and forth with "I love you"..."I love you more!"...."No, I love YOU more!" HA HA HA!! Seriously, I do really like him. It has taken me awhile to really feel good about him just because I am now so jaded and cynical. He's just such a calming kind of guy. He never acts rushed like he's behind schedule and trying to get on to the next patient. He acts like you are the only patient he needs to see that day. At the end he walks you out and actually makes your next appointment himself. This takes only a minute but you just don't see doctors doing that. Most importantly, he's making me better and he cares about making me better.
So since I am feeling better and better I am able to look at things differently. I've decided to embrace the fact that today I feel pretty good and I'm trying not to worry about how I'll feel tomorrow. Now I sound like an alcoholic on the 12 step program. One Day At A Time. I told the doctor that my plan is to see if I go a couple months without migraines and slowly start to add in physical activity. I will probably start to walk a bit even now. At least that way I won't be starting at zero. I've done a couple physical things - hiking while geocaching and shoveling snow off the lake while ice skating. I did not get a migraine either time so that made me hopeful.
So that is where I am at right now. More hopeful than I've been in a long time. However, I'm still not sure if I will ever be physically back to what I was in 2005. I'm not that hopeful but still emotionally feeling pretty good.
I went to see the endocrinologist, Dr. Jennings, recently. Basically he just took blood and asked me how I was doing. Of course I knew he was going to ask me this so on the very long trip down there I thought about that question. I do have a problem saying to him "I'm feeling much better" since I think saying that was one of my big problems with my last endocrinologist. She would only hear that part, not the part that I was still not feeling 100%. She would just assume that I was on the right path and that she could send me off and see me in 6 or 9 months. Also, the way things go for me I can be feeling pretty good and then suddenly be thrown into another round of migraines and feeling lousy.
So as I thought about it I realized just how much better I feel. I thought about my first visit to him at the beginning of June and how badly I was feeling then. I thought about how I had to have Tom drive me because I knew that I would not be able to do it on my own. I remember that I was very overwhelmed and had that whacked out feeling that I can only try to describe to you. Its sort of like I'm on some sort of drug or something. I can remember leaving that visit and walking out into the streets of Philadelphia and being in a complete fog. At that visit I had been so overwhelmed that I almost passed out when he took my blood - I have that tendency but now have it under control because I know all I have to do is look away and it doesn't bother me a bit (except that day). I thought I was babbling but Tom said I wasn't. My mental functioning was just so far gone that I had just stopped doing anything complicated.
Back then, anything would overwhelm me. I remember I avoided anything upsetting because I knew my body could not physically handle it. I had decided that I wanted to go back to work when Sarah entered high school and realized that I would not be able to handle that in my current state. The thought of a job interview was petrifying. I couldn't even handle a visit to the mall sometimes. When I was visiting my brother in Georgia we went to the zoo. I almost couldn't make it - as we were walking in I started to feel weird and thought I would get a migraine. I went back to the van, let my body calm down and went in anyways.
I was huffing and puffing so much that I couldn't go up the stairs in our house even one time without being out of breath. I remember once I walked up and tried to talk to Sarah at the top and had to wait because I couldn't speak...that's pretty bad. Obviously, physical activity was out of the question.
There are many little things that have gotten better as well. The computer screen has not been flickering for about a month now (only flickered for me...I've asked others "is it flickering"). Another thing: I'm not sure what they are called but when you stare at something for a long time and then look away a rough outline/image seems to linger in your vision. That would happen to me after looking at things for a couple of seconds. At my worst I could visually drag a "ghost" of something away from it. It's is much better but not 100%. Back then I seemed to have so many weird things like that happening to me that I couldn't even tell the doctors all the things without sounding crazy or taking up hours of their time.
November of 2005 was probably the last time I felt normal.
So I decided to tell the doctor how I'm looking at things in the big picture. I've been going to him for about 8 months and over that time I am much better but the progress is slow going. I told him that I'm in the phase where I realize I am better but extremely leery that I could get worse again. I told him back in June I was looking for a magic pill that would make me better in 2 weeks. Now I am realizing that its not just one thing that is making me better. It's all the things I'm doing. its switching to Armour Thyroid, taking the iron and taking the migraine medication. He said, even if you find a magic pill in endocrinology, it takes weeks to work. He did not throw me out into the world and deem me cured. He wants to see me in 4 months which is good. My old doctor would have probably said 9 months. I was constantly calling her to move my appointments up and ended up seeing her every two months - still without ever really getting better.
So as I was leaving he said "it was good to see you". To which I answered "it was good to see YOU". To which he answered "Its good to see you feeling so much better!" I started to feel like we were going back and forth with "I love you"..."I love you more!"...."No, I love YOU more!" HA HA HA!! Seriously, I do really like him. It has taken me awhile to really feel good about him just because I am now so jaded and cynical. He's just such a calming kind of guy. He never acts rushed like he's behind schedule and trying to get on to the next patient. He acts like you are the only patient he needs to see that day. At the end he walks you out and actually makes your next appointment himself. This takes only a minute but you just don't see doctors doing that. Most importantly, he's making me better and he cares about making me better.
So since I am feeling better and better I am able to look at things differently. I've decided to embrace the fact that today I feel pretty good and I'm trying not to worry about how I'll feel tomorrow. Now I sound like an alcoholic on the 12 step program. One Day At A Time. I told the doctor that my plan is to see if I go a couple months without migraines and slowly start to add in physical activity. I will probably start to walk a bit even now. At least that way I won't be starting at zero. I've done a couple physical things - hiking while geocaching and shoveling snow off the lake while ice skating. I did not get a migraine either time so that made me hopeful.
So that is where I am at right now. More hopeful than I've been in a long time. However, I'm still not sure if I will ever be physically back to what I was in 2005. I'm not that hopeful but still emotionally feeling pretty good.
Tuesday, February 3, 2009
MY KIDS GET MIGRAINES
I am sad to say that I have passed on the curse of migraines to all three of my kids. My oldest, Thomas, was the first to get a migraine. I think he was in 4th grade. Its sort of funny because when he told me he had a really bad headache, I suspected right away it was a migraine. He had told me many times before that he had a headache or didn't feel well but that time it was different. I guess maybe the suddenness of it. There was no lead up to it. He just suddenly had a really bad headache. Then I asked him if he had been seeing funny before he got the headache and he told me yes. He had been watching TV and it was hard to see part of the screen.
My youngest, Sarah, was the next to get a migraine. She was in 3rd grade. I went to pick her up from school and she came out complaining that she had suddenly gotten a really bad headache. Again, I just knew. I asked about her vision and she said yes, she had trouble seeing the music in orchestra.
My middle child, Erin, took awhile longer to get a migraine. She was in 8th grade when I got a call from the nurse. Erin knew it was a migraine because she also had the visual aura. She said she had all sorts of "pretty" and colorful lights. Pretty until they were followed by the pain!
I don't know if I would be able to tell if they were migraines if they hadn't gotten the visual aura. Thomas and Sarah will throw up with their migraines. Erin has only gotten two migraines and she felt nauseous with them but did not throw up. So far they only get them infrequently and it helps that we make sure that they get enough rest and eat well.
I feel very bad that I have passed this on to them and I often wonder if they will continue to follow in my footsteps. Will they end up in the same sort of nightmare as me later on in their life? If that happens to any of them, maybe they will be able to learn from my experience and it will help them in dealing with this disease.
My youngest, Sarah, was the next to get a migraine. She was in 3rd grade. I went to pick her up from school and she came out complaining that she had suddenly gotten a really bad headache. Again, I just knew. I asked about her vision and she said yes, she had trouble seeing the music in orchestra.
My middle child, Erin, took awhile longer to get a migraine. She was in 8th grade when I got a call from the nurse. Erin knew it was a migraine because she also had the visual aura. She said she had all sorts of "pretty" and colorful lights. Pretty until they were followed by the pain!
I don't know if I would be able to tell if they were migraines if they hadn't gotten the visual aura. Thomas and Sarah will throw up with their migraines. Erin has only gotten two migraines and she felt nauseous with them but did not throw up. So far they only get them infrequently and it helps that we make sure that they get enough rest and eat well.
I feel very bad that I have passed this on to them and I often wonder if they will continue to follow in my footsteps. Will they end up in the same sort of nightmare as me later on in their life? If that happens to any of them, maybe they will be able to learn from my experience and it will help them in dealing with this disease.
ANATOMY OF MY MIGRAINES
When I first started getting migraines they were very predictable. I would only get them once a year or once every two years. I would start out be having trouble with my vision. It would appear as if there were wavy lines that looked like heat waves in front of my vision. This would last approximately 45 minutes. During this time I would not experience any pain. After my vision cleared, the headache would begin. It would build slowly until it was really painful. I'm not sure if it hurt more on one side than the other because it was so painful I could not tell. Not long after the headache pain peaked I would feel nauseous. Nine times out of ten I would throw up. It was one of those things that I wouldn't want to do because the violence of it would initially make me feel worse but then when I was done I felt just a bit of relief.
I would have an extreme sensitivity to light so as soon as I knew a headache was coming I would get blankets to cover my windows. I would also be sensitive to sound so I would have the family walk on eggshells throughout the house. I swear I could hear every footstep even when they quietly walked across the floor downstairs. My skin also seemed to be sensitive. It would feel as if it had been rubbed raw. I would get into the loosest pajamas I could find. Laying my head on the pillow, it felt as if someone was pushing it down really hard.
I would carefully roll around for awhile trying to find the least painful position. Then I would pray that I would fall asleep. This would usually take at least an hour. I would sleep between two and four hours and wake up with a migraine hangover. You know, like a Mack truck hit you! I would still be happy though. Feeling like that was so much better than that god awful pain.
For me the entire migraine experience is surreal. In recent years as I've gotten more and more migraines the weirdness has just increased. Actually the weirdness has become more of a problem for me than the pain.
In 2006 my migraines started coming every three weeks with the onset of my periods. Since they had been so infrequent before this was alarming to me. I know I wouldn't get much sympathy from people who get migraines every day but for me it was a big problem. Initially they had most of the same characteristics of my previous migraines. The only thing that was different was that the visual aura now was a circular pattern of back and forth lines. It now had colors to it. It would start out really small and slowly expand until it was just a waviness on the edge of my vision. It would be gone in about 20 minutes. Over the next couple of years the rest of the characteristics also changed .
After awhile the migraines did not seem to be totally related to my periods. They would mostly come in bunches where I would have a rough two weeks or so. I've been told by my neurologist that migraines with aura tend to be this way. When I'm have an episode like this, I say I'm in migraine mode. I began to feel weird at all times during my migraine episodes, even on the days that I didn't get a headache. All sorts of weird things began to happen. I began to have funny visual changes. My mental capacity dramatically declined. At the peak of my problems I was in bed for a week with one or two migraines everyday. I was in such a fog that it was as if I had taken some sort of drug and was having a bad trip. Eventually some of these things were happening to me all the time, even when I wasn't in migraine mode. It was depressing to me that this was what my life had become. I was no longer the same person I had always been. It consumed my life.
Eventually, I discovered that most of the time I would not get the horrible pain after my aura. This may seem like a blessing to some but the fact that I had so many other problems that were affecting my everyday functioning it didn't really matter. If I didn't have enough brain to carry on with life, it didn't matter that I wasn't feeling pain.
When it got to this point I realized that my current doctor was not making me well. I decided to switch endocrinologists (I was being treated for under active thyroid and thought the migraines were related to that) and I also went to a headache center and saw a neurologist. It seems as if I am finally on the mend after so many years of getting worse and worse. I am still feeling leery that this is actually a new beginning for me. I live my life feeling as if any moment I could be thrown back under the bus. Am I really getting better? Only time will tell.
I would have an extreme sensitivity to light so as soon as I knew a headache was coming I would get blankets to cover my windows. I would also be sensitive to sound so I would have the family walk on eggshells throughout the house. I swear I could hear every footstep even when they quietly walked across the floor downstairs. My skin also seemed to be sensitive. It would feel as if it had been rubbed raw. I would get into the loosest pajamas I could find. Laying my head on the pillow, it felt as if someone was pushing it down really hard.
I would carefully roll around for awhile trying to find the least painful position. Then I would pray that I would fall asleep. This would usually take at least an hour. I would sleep between two and four hours and wake up with a migraine hangover. You know, like a Mack truck hit you! I would still be happy though. Feeling like that was so much better than that god awful pain.
For me the entire migraine experience is surreal. In recent years as I've gotten more and more migraines the weirdness has just increased. Actually the weirdness has become more of a problem for me than the pain.
In 2006 my migraines started coming every three weeks with the onset of my periods. Since they had been so infrequent before this was alarming to me. I know I wouldn't get much sympathy from people who get migraines every day but for me it was a big problem. Initially they had most of the same characteristics of my previous migraines. The only thing that was different was that the visual aura now was a circular pattern of back and forth lines. It now had colors to it. It would start out really small and slowly expand until it was just a waviness on the edge of my vision. It would be gone in about 20 minutes. Over the next couple of years the rest of the characteristics also changed .
After awhile the migraines did not seem to be totally related to my periods. They would mostly come in bunches where I would have a rough two weeks or so. I've been told by my neurologist that migraines with aura tend to be this way. When I'm have an episode like this, I say I'm in migraine mode. I began to feel weird at all times during my migraine episodes, even on the days that I didn't get a headache. All sorts of weird things began to happen. I began to have funny visual changes. My mental capacity dramatically declined. At the peak of my problems I was in bed for a week with one or two migraines everyday. I was in such a fog that it was as if I had taken some sort of drug and was having a bad trip. Eventually some of these things were happening to me all the time, even when I wasn't in migraine mode. It was depressing to me that this was what my life had become. I was no longer the same person I had always been. It consumed my life.
Eventually, I discovered that most of the time I would not get the horrible pain after my aura. This may seem like a blessing to some but the fact that I had so many other problems that were affecting my everyday functioning it didn't really matter. If I didn't have enough brain to carry on with life, it didn't matter that I wasn't feeling pain.
When it got to this point I realized that my current doctor was not making me well. I decided to switch endocrinologists (I was being treated for under active thyroid and thought the migraines were related to that) and I also went to a headache center and saw a neurologist. It seems as if I am finally on the mend after so many years of getting worse and worse. I am still feeling leery that this is actually a new beginning for me. I live my life feeling as if any moment I could be thrown back under the bus. Am I really getting better? Only time will tell.
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