I am the kind of person that needs to know why. This is why I have thought a lot about the cause of my migraines. Part of me wants to know so that I can stop them and part of me wants to know just because!
One of my theories is that initially my thyroid started to fail. Then as a result of that, my periods started to come every three weeks and were a bit heavier. That resulted in my body slowly being depleted of iron. The combination of my body being under stress from the thyroid failing as well as the low iron caused my brain to not function properly and also caused my migraines to increase dramatically.
Once I found out that my iron was low I researched what symptoms were caused by low iron . Some of the symptoms that I experienced were tiredness, being out of breath during slight physical exertion, feeling as if I couldn't get a deep enough breath even while sitting, very obvious vertical lines/ridges in my fingernails, night sweats, not sleeping well, lowered mental functioning and heart palpitations. I've learned that heart palpitations are NOT your heart beating irregularly but it IS a sense that you are feeling your heartbeat more strongly. The problems that I had with physical activity became pretty severe. I like to garden and I eventually started to do things while sitting in a lawn chair. Pretty humorous to shovel dirt while sitting! I've written before that going up one flight of stairs required me to spend a few minutes catching my breath. As indicated by the title of this blog, I also experienced headaches, migraines to be exact.
I've read many times that low iron can cause headaches. I've also read occasionally that low iron can cause migraines. I've also read that iron plays many roles in your body. This includes a role in making your brain function properly. Recently doctors have realized that during migraines the neurons in your brain fire out of control. Obviously a sign that your brain is certainly NOT functioning properly!
One of the interesting things is that my iron was not extremely low. Initially when I was diagnosed with low iron the only number that was out of range was my iron saturation. It was 12% and the acceptable range is 15%-50%. I was not considered anemic although those numbers were on the lower end of the range. The ferritin is the number that the doctor seems to watch. My ferritin was 17 and the acceptable range is 10-232. I've heard of many people with a much lower number. My doctor told me that he would like to see this number between 60 and 80. After starting to take iron, in two months my ferritin went up to 40. I was happy but felt that it would continue to rise. Its been six more months and my ferritin has not gone up, it still hovers around 40.
Although a lot of my symptoms have subsided to some degree I am not 100% back to where I was before all this started. Some of my symptoms are still totally with me like the ridges in my fingernails. I look at them all the time and wonder if they are getting just a bit better. Somehow, they seem to be the thing that I watch as my indication that my body still is not right. I feel that when they are gone I will be better. I would love to see my ferritin increase to at least 60. I think I would feel even better than I do now. Its hard to judge just how good I feel because I felt so poorly for so long that I appreciate these recent improvements immensely. I do not remember how normal felt.
My brain and migraines seem to be slowly getting under control with my medication. I worry about when the doctor will try to wean me off the medication. If my ferritin is still on the low side, will the migraines just come back? Since I am not sure how much my low iron played a role in my migraines, I am not sure what will happen.
NOTE: I purposely try not to sound like an expert, I am NOT an expert. I do not want someone to happen upon this and feel as if anything I've written is undisputable fact. I've researched a lot and I try hard to decide if what I've read is true. I also try to understand my own experience. Understanding is the key to getting well.
Thursday, November 19, 2009
Tuesday, April 28, 2009
PARLODEL AND DOSTINEX/CABERGOLINE
When I first found out I had a pituitary tumor way back in 1991 I was told that I could possibly shrink it by taking the medication, Parlodel. I was told that I would need to slowly work my way up to my full dose. This was so many years ago I can't remember what my full dose was. I do remember that when I first started to take it, I woke up with a horrible headache. The endocrinologist that I was seeing back then had a horrible personality. When I called him, upset that the Parlodel had made me feel so awful, he snapped off a reply to my concerns. "Well, I hope that you are able to tolerate it because its the only medicine that is available for you." That was the extent of his comfort and understanding. My body did eventually become used to it and I was able to take it. At the time I did not realize that the congestion in my nose was a side effect of the Parlodel. It did really well at controlling my prolactin level but it did nothing to shrink my tumor. As a matter of fact I eventually had to have the tumor surgically removed because it was growing slightly.
When I went through my first two pregnancies I went off the Parlodel and back on in between pregnancies. I figured out that going off the prolactin gave me the same headache that going on it did.
At the time that I was taking the Parlodel, I felt that this side effect was quite horrible. Then in the future when I went on Cabergoline (Dostinex) I changed my tune.
Fast forward to the 21st century. In 2006 I had found out that I was hypothyroid, I had a mass near my pituitary that could possibly be a tumor and that my prolactin was slightly elevated. I was having more and more migraines and my endocrinologist seemed to believe that it was due to the elevated prolactin. I had opted to forgo medication because my neurosurgeon did not believe that the mass was a tumor and my prolactin was never above 50. I did not like the side effects of Parlodel and was worried that I would have similar side effects from Dostinex. As my migraines increased I finally relented and let my endocrinologist give me a prescription for generic Dostinex (Cabergoline). I started taking it at the end of November 2007. At first it seemed that it made my migraines worse. I had a rough first week but then things started to get better. I figured that the increase in migraines had been due to my body adjusting to the medication. I began to believe that the Dostinex would actually help me. I did have some nasal congestion and it seemed to bother the circulation in my hands and feet but I figured this was a small price to pay if it helped with my migraines.
In February things suddenly went down hill. I got the first of a series of horrible migraines. I was really out of it and my vision began to get whacky. Many days I was unable to leave my bed. At first I did not associate my new troubles with the Dostinex. After all, I had a month and a half where I felt okay. Then I started to remember how my body had reacted when I initially went on the medication. I was now feeling the same way only worse. I then started thinking how the Dostinex has a long half life and that it takes quite a while before it builds up in your blood enough to do its job of lowering your prolactin level. If it takes that long to build up to work its magic, maybe it takes just as long to build up and wreak havoc.
I decided that I would stop taking the Dostinex. When I called the endocrinologist she did not think that the Dostinex could be causing my new problems but I told her it didn't matter. I had started taking the Dostinex to help alleviate my migraines and it certainly wasn't helping!
When I stopped taking the Dostinex there was not an immediate relief from my symptoms. As I said there is a long half life and it stays in your system for quite awhile. Over the following months I did many more things to try to improve my health so I will never be able to say for sure that the Dostinex caused me to get more migraines and have all the brain wackiness but I do believe that its quite possible that it played a role.
So many things have happened to me over the past three years that I may never know why any of them have been happening to me. Maybe some day I will be able to look back on these times and know what has happened but for now I can only record my experience. It has been a conglomeration of symptoms, diagnoses and medication and its possible that the intertwinings will never be unravelled.
When I went through my first two pregnancies I went off the Parlodel and back on in between pregnancies. I figured out that going off the prolactin gave me the same headache that going on it did.
At the time that I was taking the Parlodel, I felt that this side effect was quite horrible. Then in the future when I went on Cabergoline (Dostinex) I changed my tune.
Fast forward to the 21st century. In 2006 I had found out that I was hypothyroid, I had a mass near my pituitary that could possibly be a tumor and that my prolactin was slightly elevated. I was having more and more migraines and my endocrinologist seemed to believe that it was due to the elevated prolactin. I had opted to forgo medication because my neurosurgeon did not believe that the mass was a tumor and my prolactin was never above 50. I did not like the side effects of Parlodel and was worried that I would have similar side effects from Dostinex. As my migraines increased I finally relented and let my endocrinologist give me a prescription for generic Dostinex (Cabergoline). I started taking it at the end of November 2007. At first it seemed that it made my migraines worse. I had a rough first week but then things started to get better. I figured that the increase in migraines had been due to my body adjusting to the medication. I began to believe that the Dostinex would actually help me. I did have some nasal congestion and it seemed to bother the circulation in my hands and feet but I figured this was a small price to pay if it helped with my migraines.
In February things suddenly went down hill. I got the first of a series of horrible migraines. I was really out of it and my vision began to get whacky. Many days I was unable to leave my bed. At first I did not associate my new troubles with the Dostinex. After all, I had a month and a half where I felt okay. Then I started to remember how my body had reacted when I initially went on the medication. I was now feeling the same way only worse. I then started thinking how the Dostinex has a long half life and that it takes quite a while before it builds up in your blood enough to do its job of lowering your prolactin level. If it takes that long to build up to work its magic, maybe it takes just as long to build up and wreak havoc.
I decided that I would stop taking the Dostinex. When I called the endocrinologist she did not think that the Dostinex could be causing my new problems but I told her it didn't matter. I had started taking the Dostinex to help alleviate my migraines and it certainly wasn't helping!
When I stopped taking the Dostinex there was not an immediate relief from my symptoms. As I said there is a long half life and it stays in your system for quite awhile. Over the following months I did many more things to try to improve my health so I will never be able to say for sure that the Dostinex caused me to get more migraines and have all the brain wackiness but I do believe that its quite possible that it played a role.
So many things have happened to me over the past three years that I may never know why any of them have been happening to me. Maybe some day I will be able to look back on these times and know what has happened but for now I can only record my experience. It has been a conglomeration of symptoms, diagnoses and medication and its possible that the intertwinings will never be unravelled.
Friday, April 17, 2009
VISUAL CHANGES
Last night I had a dream that I had a spot in my vision that was speckled. It was sort of like when someone takes a picture and they do some sort of weird computer altering of it and make it into a piece of artwork. I've had other times where I've dreamed of aura and then gotten a migraine in the next day or two. I can't believe that I've actually caused myself to get a migraine but I do believe that my body may be unconsciously aware that I will soon get one.
For me "visual disturbances" have become very prevalent. These visual disturbances do not just occur during an aura but seem to happen to me at any time. I've mentioned before that I get into a "migraine mode" where the frequency of my migraines increases. These are the periods where these visual disturbances come about.
I've suffered two episodes of all out vertigo. One was followed by a migraine and one was not. I've also had many times where I felt somewhat dizzy and off balance. During these times was when I experienced problems with the windshield in my car. If you look through your windshield, you will notice that where the edge of the windshield curves, it makes things look a bit distorted. The average person can see this (I asked my son) but for me during one of my bad times, it becomes very pronounced. It makes me feel slightly dizzy, not enough to affect my driving, but enough to be maddening! Lately, I haven't noticed the edges of the windshield but I have noticed that in general things look different through the windshield than through a more flat side window.
Along with the dizziness there also comes a problem being in a store or crowded place. Its as if my brain can not handle all the stimulation and my perception of things is off. I can only imagine that this is what would be experienced by someone on a drug. I would not say that I am totally out of it, its just that things feel a bit weird. Its more of a visual experience than a psychological one. My brain is thinking properly but its not controlling my vision properly. I don't think that I could ever fully explain this to make someone understand but if someone has had this experience they would light up and say "I know exactly what you mean!!"
I have many things that happen that seem to be related to my retina not working the way it should. Bright lights don't just affect me during a migraine, they affect me during my migraine modes as well. If someone shines a light into my eyes I get upset with them. They don't understand that it takes my eyes especially long to recover from this. While I'm having spots in front of my eyes I'm worried that they won't go away but instead they will be the start of a migraine. I have to say that I never remember one of these times turning into a migraine - I don't think bright lights are a trigger for me. I've had times where I've looked away or closed my eyes for a picture because I know that the flash is going to drive me crazy. I guess in a related vein is my "shadow" experience. If a normal person stares at a picture on the wall for a long time and then moves their gaze to a blank area, they will see an outline of the picture. I've had times where this effect is so strong that I could literally drag an outline image away from something after only looking at it for a spit second.
The last thing that I can think of is that I had a weird problem looking at the computer screen. You know how sometimes when you see a computer screen on TV and its flickering? Well, I would have this effect while looking at my own computer screen. White backgrounds were the worse. At first I just thought that the computer was actually flickering until I asked my family and they didn't know what I was talking about. For awhile this was happening all they time. If I was about to have a migraine it got worse. Then I started to realize that there were other problems with the computer. Depending on the colors of the writing versus the background it would either bother me or feel okay. White writing on a black background is the worse, I refuse to read anything with that combination. I tried to set up this blog using colors that would be "pleasing to the eye".
I've tried to cover all the visual disturbances that I have or have had but I could be missing something. Its hard because most of them have gotten better. I do not have much problem with the windshield in the car. I credit the fact that my dizziness has gotten better. I rarely feel badly in a store. The computer hasn't flickered for months although certain color combinations still bother me. My sensitivity to light is still quite a problem, as is the shadowing problem, although I can no longer drag an image away from something.
In the late winter early spring of 2008 I was having a particularly bad time. I had an entire week where I got one or sometimes two migraines a day. Surrounding that week was a month and a half of rough times. During this time I had ALL the visual disturbances to an extreme. They were there at all times, during a migraine as well as between migraines. You can imagine how whacked out I felt. I cried out of frustration and fear that this was now my life. I couldn't really function at all. I could not traverse life seeing things through my eyes. My body was failing me and my brain was failing me. This was before I had my appointment at the Jefferson Headache Center. It was during this episode that I called to set up and appointment and had to wait for months to get in. Obviously, there are many people who are suffering as well. It was well worth the wait.
My doctor at the headache center put me on the anti seizure medication Lamictal. I credit this medication with helping my brain better control my vision. Of course it has not been a miracle cure but it has helped immensly. I still get some migraines with aura, I still get some visual problems in between migraines but I've come along way from that bad spell in 2008. My quest for good health is not over but I have to remind myself of my progress.
For me "visual disturbances" have become very prevalent. These visual disturbances do not just occur during an aura but seem to happen to me at any time. I've mentioned before that I get into a "migraine mode" where the frequency of my migraines increases. These are the periods where these visual disturbances come about.
I've suffered two episodes of all out vertigo. One was followed by a migraine and one was not. I've also had many times where I felt somewhat dizzy and off balance. During these times was when I experienced problems with the windshield in my car. If you look through your windshield, you will notice that where the edge of the windshield curves, it makes things look a bit distorted. The average person can see this (I asked my son) but for me during one of my bad times, it becomes very pronounced. It makes me feel slightly dizzy, not enough to affect my driving, but enough to be maddening! Lately, I haven't noticed the edges of the windshield but I have noticed that in general things look different through the windshield than through a more flat side window.
Along with the dizziness there also comes a problem being in a store or crowded place. Its as if my brain can not handle all the stimulation and my perception of things is off. I can only imagine that this is what would be experienced by someone on a drug. I would not say that I am totally out of it, its just that things feel a bit weird. Its more of a visual experience than a psychological one. My brain is thinking properly but its not controlling my vision properly. I don't think that I could ever fully explain this to make someone understand but if someone has had this experience they would light up and say "I know exactly what you mean!!"
I have many things that happen that seem to be related to my retina not working the way it should. Bright lights don't just affect me during a migraine, they affect me during my migraine modes as well. If someone shines a light into my eyes I get upset with them. They don't understand that it takes my eyes especially long to recover from this. While I'm having spots in front of my eyes I'm worried that they won't go away but instead they will be the start of a migraine. I have to say that I never remember one of these times turning into a migraine - I don't think bright lights are a trigger for me. I've had times where I've looked away or closed my eyes for a picture because I know that the flash is going to drive me crazy. I guess in a related vein is my "shadow" experience. If a normal person stares at a picture on the wall for a long time and then moves their gaze to a blank area, they will see an outline of the picture. I've had times where this effect is so strong that I could literally drag an outline image away from something after only looking at it for a spit second.
The last thing that I can think of is that I had a weird problem looking at the computer screen. You know how sometimes when you see a computer screen on TV and its flickering? Well, I would have this effect while looking at my own computer screen. White backgrounds were the worse. At first I just thought that the computer was actually flickering until I asked my family and they didn't know what I was talking about. For awhile this was happening all they time. If I was about to have a migraine it got worse. Then I started to realize that there were other problems with the computer. Depending on the colors of the writing versus the background it would either bother me or feel okay. White writing on a black background is the worse, I refuse to read anything with that combination. I tried to set up this blog using colors that would be "pleasing to the eye".
I've tried to cover all the visual disturbances that I have or have had but I could be missing something. Its hard because most of them have gotten better. I do not have much problem with the windshield in the car. I credit the fact that my dizziness has gotten better. I rarely feel badly in a store. The computer hasn't flickered for months although certain color combinations still bother me. My sensitivity to light is still quite a problem, as is the shadowing problem, although I can no longer drag an image away from something.
In the late winter early spring of 2008 I was having a particularly bad time. I had an entire week where I got one or sometimes two migraines a day. Surrounding that week was a month and a half of rough times. During this time I had ALL the visual disturbances to an extreme. They were there at all times, during a migraine as well as between migraines. You can imagine how whacked out I felt. I cried out of frustration and fear that this was now my life. I couldn't really function at all. I could not traverse life seeing things through my eyes. My body was failing me and my brain was failing me. This was before I had my appointment at the Jefferson Headache Center. It was during this episode that I called to set up and appointment and had to wait for months to get in. Obviously, there are many people who are suffering as well. It was well worth the wait.
My doctor at the headache center put me on the anti seizure medication Lamictal. I credit this medication with helping my brain better control my vision. Of course it has not been a miracle cure but it has helped immensly. I still get some migraines with aura, I still get some visual problems in between migraines but I've come along way from that bad spell in 2008. My quest for good health is not over but I have to remind myself of my progress.
Saturday, March 28, 2009
EMOTIONAL SUPPORT FROM OTHERS
Anyone who has a chronic or long term illness eventually discovers that over time friends and family lose their sympathy and compassion. They find it hard to understand how one person can feel badly for so long. I myself have been in situations where it has become tedious and draining to deal with someone who has continuous health problems. I try to remember this when I find that people sometimes say hurtful and uncaring things to me.
I find more and more I am sharing less and less with other people. I think one of the worse feelings for me is when I feel judged. By judged, I mean when people seem to think that in some way I've either caused my problems or made them worse. If only..... If only I would do such and such I would feel better. If only I would eat such and such my body would be healthier. If only I had talked to the doctor in a different way, asked better questions. Then I would get better.
It has become apparent to me that some people think that I have become too preoccupied with my health. On the contrary, I feel as if I am becoming very good at ignoring my issues. Somewhere along the way I decided that its quite possible that I will never truly feel well. Even if I do eventual feel better it will probably be a long time coming. I've already had three years of feeling lousy much of the time. Regardless of the outcome I've decided that I must do the best that I can in living my life to the fullest. Now the only time I hold back in my activities is when I feel that doing too much is going to make things worse in the long run.
My family spent this past Thanksgiving at my sister-in-law's house with my husband's family. On the way there I got a migraine. I took one of my migraine pills, closed my eyes and waited for my aura to pass. As we pulled up to her house they came out to greet us. As I got out of the van I could see but my peripheral vision was still flickering a bit. I was still in that foggy period where my perception of everything is off. Since I've had so many problems my sister-in-law's immediate question was "how have you been feeling". I think my answer was something like "eh, not so great". I decided not to mention the fact that I was currently totally whacked out and so foggy that I couldn't think straight. I'm pretty sure that she could tell that I was not feeling right. I am fortunate that the Treximet that I take relieves the pain that I experience but it still leaves me with the brain fog. It took a while, but once I pulled myself together I sat and played cards with my bored 16 year old son. I chose not to tell the family about my migraine so I wouldn't be the focus of attention. Towards the end of the day I had a private conversation with my other sister-in-law who was concerned about me and I eventually told her that I had been dealing with a migraine.
In some ways I do understand how people could get sick of my health problems....I'M sick of my problems! Then on the other hand, there are days that I desperately need the support. It's usually on those days when I've suddenly gotten another migraine after thinking that I'm finally getting better. Those are my most depressing days. Yesterday was one of those days. As I was writing this post, I got a migraine. I had finally gotten my migraines down to about once a month and this last one had been followed by one that I got a week ago. So much for once a month! I should have known it was coming, I haven't felt right for quite awhile now. It was quite depressing. I'm still not feeling right so I'm expecting that I will probably get more. Sigh.
How did this post get to be about my latest troubles. It was supposed to be about emotional support. I guess its all related because I didn't talk much about this last migraine. I didn't tell anyone the day I had it, not even my husband. It's not that I am trying to keep a secret, its just that it was so upsetting that I didn't even want to talk about it. At least I know that he would support me emotionally. Some people don't even have a spouse that's understanding.
So my wish for everyone is that they get the emotional support that they need.
I find more and more I am sharing less and less with other people. I think one of the worse feelings for me is when I feel judged. By judged, I mean when people seem to think that in some way I've either caused my problems or made them worse. If only..... If only I would do such and such I would feel better. If only I would eat such and such my body would be healthier. If only I had talked to the doctor in a different way, asked better questions. Then I would get better.
It has become apparent to me that some people think that I have become too preoccupied with my health. On the contrary, I feel as if I am becoming very good at ignoring my issues. Somewhere along the way I decided that its quite possible that I will never truly feel well. Even if I do eventual feel better it will probably be a long time coming. I've already had three years of feeling lousy much of the time. Regardless of the outcome I've decided that I must do the best that I can in living my life to the fullest. Now the only time I hold back in my activities is when I feel that doing too much is going to make things worse in the long run.
My family spent this past Thanksgiving at my sister-in-law's house with my husband's family. On the way there I got a migraine. I took one of my migraine pills, closed my eyes and waited for my aura to pass. As we pulled up to her house they came out to greet us. As I got out of the van I could see but my peripheral vision was still flickering a bit. I was still in that foggy period where my perception of everything is off. Since I've had so many problems my sister-in-law's immediate question was "how have you been feeling". I think my answer was something like "eh, not so great". I decided not to mention the fact that I was currently totally whacked out and so foggy that I couldn't think straight. I'm pretty sure that she could tell that I was not feeling right. I am fortunate that the Treximet that I take relieves the pain that I experience but it still leaves me with the brain fog. It took a while, but once I pulled myself together I sat and played cards with my bored 16 year old son. I chose not to tell the family about my migraine so I wouldn't be the focus of attention. Towards the end of the day I had a private conversation with my other sister-in-law who was concerned about me and I eventually told her that I had been dealing with a migraine.
In some ways I do understand how people could get sick of my health problems....I'M sick of my problems! Then on the other hand, there are days that I desperately need the support. It's usually on those days when I've suddenly gotten another migraine after thinking that I'm finally getting better. Those are my most depressing days. Yesterday was one of those days. As I was writing this post, I got a migraine. I had finally gotten my migraines down to about once a month and this last one had been followed by one that I got a week ago. So much for once a month! I should have known it was coming, I haven't felt right for quite awhile now. It was quite depressing. I'm still not feeling right so I'm expecting that I will probably get more. Sigh.
How did this post get to be about my latest troubles. It was supposed to be about emotional support. I guess its all related because I didn't talk much about this last migraine. I didn't tell anyone the day I had it, not even my husband. It's not that I am trying to keep a secret, its just that it was so upsetting that I didn't even want to talk about it. At least I know that he would support me emotionally. Some people don't even have a spouse that's understanding.
So my wish for everyone is that they get the emotional support that they need.
Saturday, February 7, 2009
YOU CANNOT CONVINCE YOUR BODY TO ABORT A MIGRAINE
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.
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.
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.
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