I feel this post may be one of the most important posts I write. Usually I write mostly for myself without hoping too much that someone will read it but even if I could help one or two people that just happened upon this post I would be very happy. It has been seven years since I last posted and much of that time has been discovering food triggers for my migraines.
I would like to start by saying I was one of those people who kind of poo pooed the thought of food triggers. I go to a headache center and I was told my doctor's philosophy was that food triggers are too difficult to narrow down so he didn't even try to get patients to find them. I think my attitude is important because it has made it more difficult to find them because there is whole thought process involved. It had started with a lot of denial and doubting and has ended with knowing for sure that certain foods trigger migraines for me. This journey has been long and I would say arduous, with a lot of emotional ups and downs. You may wonder how it could be emotional. It is emotional because I find it sad and somewhat depressing to know that I cannot eat certain foods that I love for the rest of my life without risking a migraine. People who know me will try to be comforting and tell me that at least I know about them and can be happy that if I don't eat them I will get less migraines. Yes, I am happy about that but that doesn't make it easier to give them up. It wouldn't be so bad if it was only a couple of things but it is many things and each new food that I discover brings with it the denial, sadness and then begrudging acceptance.
I suppose the journey began even earlier when I figured out that chocolate was giving me diarrhea. This discovery was even before I began to have increased migraines. My sister in law had given me the biggest bag of M&Ms I have ever seen. It was mostly for my three kids but that summer I probably had a small handful of them every day. I am not one to binge on any one food item so there wasn't an immediate thought that it was causing me a problem. I just knew that summer I had a lot of diarrhea. Haha. At the end of the summer I had finally had the thought that there might be a connection but only after the diarrhea had miraculously subsided. So I started to experiment and figured it out. Again, this had nothing to do with migraines since I was still only getting one a year or maybe every two years. I did figure out that I couldn't necessarily eat things without consequence.
Over these years of having an increased frequency of migraines I can have entire years that are bad and entire years that are good. Bad for me is up to four migraines a month and good is going months without a migraine. I think the most I went was five months. I would like to point out, as a reminder, that I am on Dostinex (Lamictal) as well as butterburr extract every day to prevent them. I have tried unsuccessfully three times to wean myself off the Dostinex by lowering my dose. I did have one particularly bad year and my doctor added Topamax in addition to the Dostinex. It worked wonders and completely eradicated the migraines but it is nicknamed "Dopamax" for a reason. I am slow to figure things out so I was on it for a year and was napping every afternoon before figuring out the connection. I suffered from other side effects that didn't subside with time so I successfully weaned myself off. Even though I now get some migraines I will not go back to Topamax unless things get really bad. I mention the medicine because I am about to write that I have had extreme success from avoiding food triggers but it has not allowed me to go off my medication but it still has helped a lot.
I first began to realize I had food triggers in a very slow way since I had that level of denial that they could exist. First I began to have this generalized feeling that certain foods were best to be avoided. Swedish Fish was among them. Again, I seem to eat more candy in the summer and had been having a few of them most days when I realized that summer I had more migraines. This was only one food so I figured it wouldn't hurt to stop eating them without doing a lot of research. I thought a bit about how red dyes are a supposed trigger for people. Then one evening I was super thirsty and right before going to bed I had a huge glass of Hawaiian Punch. I woke up at 2:00 am with a raging migraine and the next day thought "Aha!" I began avoiding all red dye which was kind of depressing because apparently I love brightly colored candy! At this point I was only avoiding things that were red and not reading labels so it still wasn't too bad.
A weird thing had started to happen to me that I have never heard from anyone else and have never read anywhere. I started to get an unstoppable heartburn when there was a looming migraine. It was not something that I wondered about, it is a definite connection. It did make me realize that certain foods must be a trigger.
Subsequently I have learned that most dyes cause me a problem. Other foods I avoid are certain spices, soda, tea and still chocolate. I use the word avoid because some things I am not 100% sure about and somethings I can get away with occasionally. Currently I am in the process of accepting the fact that beer and probably alcohol in general is a trigger.
I learned about tea because occasionally I would drink that huge ole cup of McDonald's sweet tea and eventually I realized and accepted that it could cause me a migraine. I looked up the ingredients since sometimes things have dyes that you wouldn't expect. Tea and sugar were the only ingredients. I was 100% sure it was giving me migraines so I resorted to googling "why does McDonald's sweet tea give me migraines." That is when I found out that the tannin found in teas can trigger migraines in some people. Since then I have learned a lot about tannin and which foods have the most but that would be a separate post for a later time.
For now I want to end with the thought that even people like me can find and accept that we have food triggers. If you have a suspicion but don't want to accept it, I would encourage you to consider and investigate because it can indeed help you to lower your migraine frequency.
Saturday, January 7, 2017
STRESS
As I mentioned in the previous post I have recently been under incredible stress. I wanted to post about whether I have a migraine/stress connection because often times people think there is a connection. I do not think I have a connection. I should correct myself, most types of stress do not increase the frequency of my migraines but the fight or flight kind that causes adrenaline to flow definitely gives me a migraine. That situation has to be pretty extreme for it to cause a migraine though - I'm talking hands shaking from adrenaline level.
The other kind of long term stress where I'm having trouble dealing with life does not seem to increase the frequency of my migraines. I did indeed have increased migraines during this last stressful phase of my life but it coincided with having low iron again. Since past experience shows I have a migraine/low iron connection and not a migraine/stress connection I can only blame it on the iron.
I am not sure if this post would help anyone but I thought I would write about it because sometimes it is frustrating for others to assume there is a connection.
The other kind of long term stress where I'm having trouble dealing with life does not seem to increase the frequency of my migraines. I did indeed have increased migraines during this last stressful phase of my life but it coincided with having low iron again. Since past experience shows I have a migraine/low iron connection and not a migraine/stress connection I can only blame it on the iron.
I am not sure if this post would help anyone but I thought I would write about it because sometimes it is frustrating for others to assume there is a connection.
IT HAS BEEN A LONG TIME SINCE I POSTED!
When I see how long it has been since I posted it is amazing that it has been so long. I actually have been through such a journey since then! First I will talk about the migraine/iron connection since that was my last post. Recently my iron did get low again and I was having more migraines so that just strengthens my theory (again, remember it is only a theory since I am not a doctor). This time I did not go to the doctor to have my iron level checked because I was almost 100% sure it was low and first I wanted to try to raise it and see if the symptoms went away. That's NOT an idea I advocate for anyone else but the fact is, that is what I did. I am not a doctor and not even close to an expert. I am just a person trying to feel better.
Here is how the events unfolded. At the end of April I was going through an incredibly stressful time, probably the worst of my life. I thought I was completely exhausted from it and then my heart started to skip a lot of beats. It was always worse at night and would sometimes skip every third beat. I am NOT advocating avoiding going to a doctor for something so serious but I did not go at that time. I think the stress I was under had a lot to do with that. I was also having a lot of trouble with my fingernails breaking and I even had some night sweats like before when my iron got low but incredibly I still just thought it was stress. I would say it took a good two or maybe even three months for it to occur to me that it could be that my iron was low. I had not felt out of breath but I think that was because I was not doing anything physical. I had absolutely no motivation to do anything. My life had become an endless hamster wheel of going to work, coming home and maybe making dinner or maybe not and then plopping down on the couch in front of the television. My brain function was affected and I eventually noticed but it took awhile since I was pretty distracted from dealing with the stress.
Once it occurred to me that it might be my iron I increased my iron intake and after a couple of months my heart started to beat normally and my finger nails were not perfect but they weren't breaking as much. I have not felt as exhausted but I'm also not under as much stress. I still occasionally get night sweats and my brain function is definitely taking longer to get back to normal which is kind of a bummer. I have been getting less migraines but I have some other things that I have been doing which makes me believe there are a lot of factors effecting the frequency. I will have separate posts for those things as well as one about whether I have a stress/migraine connection.
Out of this recent situation I have learned that palpitations CAN be your heart actually skipping beats. I am not sure why I thought it did not mean that since I found the true definition everywhere I read. Also, I'm sure others sometimes have doubts about whether their symptoms are really associated with something or not but this situation did confirm which of my symptoms are definitely associated with low iron. It still amazes me that low iron can have such significant effects on a person's body!
Here is how the events unfolded. At the end of April I was going through an incredibly stressful time, probably the worst of my life. I thought I was completely exhausted from it and then my heart started to skip a lot of beats. It was always worse at night and would sometimes skip every third beat. I am NOT advocating avoiding going to a doctor for something so serious but I did not go at that time. I think the stress I was under had a lot to do with that. I was also having a lot of trouble with my fingernails breaking and I even had some night sweats like before when my iron got low but incredibly I still just thought it was stress. I would say it took a good two or maybe even three months for it to occur to me that it could be that my iron was low. I had not felt out of breath but I think that was because I was not doing anything physical. I had absolutely no motivation to do anything. My life had become an endless hamster wheel of going to work, coming home and maybe making dinner or maybe not and then plopping down on the couch in front of the television. My brain function was affected and I eventually noticed but it took awhile since I was pretty distracted from dealing with the stress.
Once it occurred to me that it might be my iron I increased my iron intake and after a couple of months my heart started to beat normally and my finger nails were not perfect but they weren't breaking as much. I have not felt as exhausted but I'm also not under as much stress. I still occasionally get night sweats and my brain function is definitely taking longer to get back to normal which is kind of a bummer. I have been getting less migraines but I have some other things that I have been doing which makes me believe there are a lot of factors effecting the frequency. I will have separate posts for those things as well as one about whether I have a stress/migraine connection.
Out of this recent situation I have learned that palpitations CAN be your heart actually skipping beats. I am not sure why I thought it did not mean that since I found the true definition everywhere I read. Also, I'm sure others sometimes have doubts about whether their symptoms are really associated with something or not but this situation did confirm which of my symptoms are definitely associated with low iron. It still amazes me that low iron can have such significant effects on a person's body!
Thursday, November 19, 2009
THYROID/LOW IRON/MIGRAINE CONNECTION
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.
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.
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.
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