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.
Tuesday, April 28, 2009
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.
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