I originally wrote this as a comment to someone in the migraine community who asked for snippets demonstrating the impact of migraine on daily life. It got way too long, so I'm posting it here. I left in the comments to the original poster. Maybe they'll be helpful to anyone else struggling with uncontrolled migraines as well.
It is indeed possible to have uncontrolled migraines which means you can have pain much of the time which feels like one continuous migraine. There are huge chunks of the last five years that I don't remember for this very reason.
I'll share a few samples of writing from this time period, but I also want to emphasize that for me migraine is much more than a headache. It is a full-blown neurological disorder. It affects my emotions (which impacts my communications), my perception of spatial relationships, my balance (and because of this my ability to walk), and my hearing. Untreated, it has caused damage to certain areas of my brain that is irreversible. I am still able to work now; but I am not able to do the things I should be able to do at my age. I am 33, but my mind works like I am 50. I am not old enough to have "age-related" memory problems; but I do have them. I've lost friendships because I was too sick to go out or too irrational emotionally to interpret things correctly, didn't remember that they had called so didn't return the calls and thus seemed uninterested in maintaining the friendship, etc.
Fortunately, I've found meds that I hope will prevent even further decline. It took a very long time to find the right meds--I've had migraines and seizures since I was a teenager. It's very important that people understand what it's like to live with this stuff because sometimes the best doctors do get stumped. It's equally important to keep on searching for an answer because this is not a way anyone wants to live, and eventually answers often can be found. Hopefully the snippets I'm sharing here will give a bit of a glimpse into what it's like to keep searching and deal with the impact of the lack of answers.
This one is from an email dated October 7, 2000. This was when I first started realizing that migraines were amplifying emotions associated with anything else I was feeling at the time.
I feel like a little speck in a big big sea.... I'm glad no one's here. But at the same time I wish someone was. ... I had a dream a few nights ago.... It was an upsetting dream to begin with, but it was also one of those dreams that was as real as yesterday. I've actually had to remind myself over the days since that it was a dream.
Well, now I'm not going to say any more but I'm just going to bury my face and cry. Imagine me asking you, have you ever felt so sad that you just had no strength? I'm grieving, but I think it's more the loss of years of life than the vision. I'm not sure what happened, what made me have that dream, but that's when a part of me woke up, and now I get to grieve the things that part of me wanted and never had....
... Well, my good moment is done and I'm on my way back to bed to have another pity party. I feel like I'm being tortured by my emotions and I have the migraine on top of it. Part of my migraine involves seeing bright lights that don't go away, and they are literally painful to the point that I hide my face under pillows which of course doesn't work. So I'm just going to go sleep ...
October is typically my bad migraine month living here in Indiana. My emails to this person show it. Reading on down through the saved email file, I see that I had another migraine on October 14. On October 21, I was starting Elavil. This is the first email I wrote after taking it the night before.
Well, I stayed at Mom's and Im crashed out. This new med is doing a number on me. I don't know if I'll make choir tomorrow ornot. I'm by myself right now because they went to Indy with somebody. What did you say about down time or soemthing??? I'm getting pletny of it. If you can afford it please call me I'm scared of this. Iknow it's just hte meds and it will stop in a few days but it's scaring me and making me feel like weird or something. I have a feeling I won't do choir tomorrow and the makes me mad. Anyway the number here is xxx-xxx-xxxx and I made sure there were no typos in it. If you can't it's ok you just know that I ma in bed with the kitty and that's why Im not writing mail. Now you know why I dont have mint juleps. Hehehehehe! I think I aam ok just really doped up. And it s just a little bitty pill would you believe! The inside f my brain is workign like a charm. The outside part that makes me type and talk isn't. So dont worry your little sister is stlil the same just having a bad head day not a bad hair day.
Ok back to bed now. With Dori and Inca. I don't even know where Elli is I think shei s sleeping in the other room. Anyway dont wory if you can't call because it si really not that bad I just could use a reality check. I love you hugs.
A few hours later, I wrote a more coherent letter:
Well, I'm up for another brief period. Going to try to do something for dinner. I have no apetite and no energy, but I'm the only one home and probably that won't change until much later. And I know I need to keep eating even though I don't want to. I'm a little concerned about work on Tuesday morning, but I'll worry about that Monday. <G>
Don't worry about the call. It was a good step for me to ask and perhaps I'll learn not to be afraid of that. Anyway, I'm off to see what I can drum up for dinner in a place where dinner really doesn't exist. <G> This is hard really hard.
I changed to a lower dosage, and the side effects did simmer down to a dull roar with time except for the weight gain, and I stayed on Elavil for about eight months before discontinuing due to excessive weight gain.
This is from another email, dated June 25, 2001.
This morning when I was getting ready for church, I noticed that my outfit was tight. This is one that was sort of loose the last time I wore it, and I realized that was probably before the surgery. It upset me a lot, but I was also thinking a lot. I attribute most of this weight gain to a little bitty pill I've been taking at night for about eight months now. It's a wonder drug in terms of migraine control, but it's a bugger in terms of side effects. The worst is the appetite. I've been trying really hard to limit what I'm eating, but I'm not doing very well and the truth about how I'm doing is not something I'm proud of. A Cracker Barrel meal is likely to fill me up, but that's because I get what my dad calls "the starch plate". <g> At most meals I could eat two or three plates, and that is embarrassing. Then I'll be hungry again not too much later--like a couple of hours--and that is ridiculous. I've heard this is common for people on this med, and it makes me thankful that I'm not on the regular dose. I'm on the miniature dose because the starting one made me a zombie. I remember I slept for 22 hours!
Anyway, I thought things would level out like they did with the Depakote. They haven't, and I'm getting a little bit scared. My mom is worried about other medical things I'm at risk for, and I know she has every right to be. But I don't know how I'm going to take much off between the meds and the fact that I can't do a lot in the way of serious exercise because of my asthma. And that's worse because of the weight thing, too.
The way I see it, I have two options, and neither of them looks real good. I can talk to the doctor and see if there is any option he can give me that's better than devouring ten heads of lettuce a week, or I can ask him to wean me off the Elavil and look into alternative means of migraine control, which would probably mean losing the control I have for a while. If I can remember to keep track of my symptoms, I can probably avoid the headache phase, but there's no way to get rid of the flashing lights or the emotional stuff that goes before them. So I'm trying to decide what it's worth for me to lose more than a few.
I was never overjoyed with my appearance, but in the past I wasn't disappointed or ashamed of it. I could dress up nice, fix my hair, etc. and feel like I looked ok. I don't anymore, no matter what I do, and that's been going on since a long time ago--oh, about seven years or so. The sad thing is that I was a lot lighter then, and the thing that started it out was something meant as a compliment but spoken by someone obsessed with me and sex (in the same sentence). That's the short version, but I think that was sort of the beginning of my total disregard for my appearance, which grew without my knowing into shame. Within the last few months, I've become embarrassed because it's like my body needs to eat so often, and now I understand the whole stigma of being overweight. Only I don't want to change the stigma and have people accept me. I want to change Me--I need to change me. I'm embarrassed to see people who have known me for a long time, especially if they haven't seen me, because I know the difference between now and then is so obvious.
I don't want to do anything stupid just to lose weight, but I need to do something. I know it's going to be a long road without a lot of motivators. I am relatively sure that I am deficient in a fair number of vitamins and that addressing those deficiencies would have some good results in addition to weight loss. I'm just not sure about where to start, and that's why I want to do some research. I already know that foods are primary migraine triggers for me, and maybe that's a good place to start. I'm thinking of ordering a cookbook I saw online with recipes that eliminate migraine triggers, and maybe I can start using it after I get home from Des Moines. I doubt that the week before is a good time to start trying to change anything. I'll just blow it in Des Moines and be upset with myself. So better to allow myself to blow it and fix it later. Besides, I need planning time.
There are other triggers which I haven't defined yet and am less sure how to control for. But I'm leaning toward thinking that taking the step backward in migraine control is probably preferable to adding more meds or other options medically available. <shudder>
The doctor put me on Depakote and Prozac and eventually added Covera. My migrain frequency was down to about three or four a month, and I requested accommodations with my employer: excused absence due to migraines. I had a good attendance record otherwise, and she was very understanding; but eventually I determined that the job was too stressful.
I moved to Florida in 2002 and lost my insurance coverage. This led to me experimenting with nutritional supplements and aromatherapy. The following email is dated April 19, 2003.
I first read up on magnesium a few years ago when I thought I was having seizures. On the epilepsy list someone mentioned that she took magnesium taurine, and l-tyrosine and had stopped having seizures and gotten off meds. I tried the combination for a while, and it worked wonders. I've decided to try it again since I can spend about $25 and get two months' worth of vitamins. So I'm reading up on vitamins again--and finding some interesting things.
There's an article on migraine and magnesium at http://www.mothernature.com/Library/bookshelf/Books/10/85.cfm which goes into great detail about some studies linking migraine to magnesium deficiency. Migraines are commonly believed to be caused by changes in blood flow in the brain; but these changes have a cause, and that cause is the real cause of migraine. Changes in blood flow can be caused by changes in the balance of chemicals in the brain. "Too much serotonin can cause blood flow to slow; too little can cause blood to move through too rapidly, explains Dr. Altura." This interested me because the most effective migraine treatment for me has involved the use of medications that regulate the amount of serotonin in the brain (Depakote and Prozac). Serotonin imbalance is widely known to be responsible for depression. I didn't realize that it is also responsible for pain. Besides regulating blood flow, serotonin also affects the release of other chemicals which tell the brain that the body is experiencing pain. "Without enough magnesium, serotonin flows unchecked, constricting blood vessels and releasing other pain-producing chemicals such as substance P and prostaglandins, he says. Normal magnesium levels not only prevent the release of these pain-producing substances but also stop their effects, says Dr. Altura." I've established that my brain's pain signals involve perception of light which is really not there, and at times I can tell what part of my body is developing pain based on the color, brightness, and nature of the lights I see. However, lately I always see lights whether I am in pain or not. Could a magnesium deficiency also be behind the general problem I am having with "lights on" in my head all the time? It's unpleasant to think of myself as having a nutritional deficiency problem. The word fanatic comes to mind very quickly. But the evidence is too prominent to ignore. The article goes on to say that things like caffeine, some medications, and stress can cause magnesium loss. For what it's worth, according to http://www.mgwater.com/asthma.shtml magnesium deficiency is also associated with asthma. I think I may have found that asthma/migraine link I've been looking for. Other articles on the same site show a link to arthritis and other pain disorders. Seeing a pattern yet?
In 2004, my migraine severity and frequency was so bad that nothing was helping. I began experiencing severe vertigo, and I also experienced a decrease in my hearing. I became concerned that I would not be able to live independently.
July 20, 2004
This morning I was having extreme confusion, weakness, and dizziness, and it was really scaring me because I had three episodes in three days. My heart rate was jumping up 30 to 35 beats when I went from sitting to standing. Amy got very insistent that I should get checked out, so I went to the emergency room.
The people at the hospital were very very nice to me, except the doctor wanted to look in my eyes more than she wanted to find out what was wrong with me. They told me what they were doing and even read my chart to me when I asked. There was a nice lady named Vicki who was a volunteer, and she came and covered me up with a warm blanket and then helped me when I was ready to go. There was also something neat. The nurse button had a braille n on it! Pretty cool! They gave me some good medicine to make me feel better for a little while and I got some to bring home with me. When they were finished I called Amy to come pick me up. I got Vicki to take some of my quarters and buy me a Hershey bar from the gift shop while I was waiting for her, Amy took me home with her and fed me chicken and dumplings and I got to see Amber and Cassie, her little girls, and spend some time with Amy.
Amy (my roommate) was probably right, but it would be nice if the doctors would be thorough and keep searching and not give me pat answers. The doctors at the emergency room can't do that, though, so what I got out of the trip was a good med for the dizziness that I'm hoping to use very sparingly until I can see a doctor--I'm looking for a new one--and start getting to the bottom of this. I have some ideas, but the new doctor hunt could prove to be a challenge. The ER people said sometimes this is caused by a virus. I doubt it.
The heart rate thing could be a clue... Someone on the nonepileptic list has a condition that causes that. I have no idea how it is treated. My other vitals, bloodwork, and EKG were all fine. So now they're just calling if vertigo which is just a fancy name for dizziness. So I know nothing except that watching Amber and Cassie run around the room makes me very dizzy. Bleh!
July 21, 2004
What happened yesterday made me angry enough that I realized I need to take up for myself medically and get to the bottom of whatever this is. At one time last year, I thought it was basilar migraine. I read last night that dizziness was associated with basilar migraine. If that's what this is, then I have some educating to do and I need to be able to do that. If it's something else, then I need to know so that I can ride it out and not hit the panic button every time I forget something significant or need assistance that isn't normal for me. I need to know how to determine what's important enough to go to the ER and how to make the staff do their real jobs. And if there are meds that can help me without serious side effects, I need to be open to taking them, maybe in addition to the vitamin stuff.
July 21, 2004
I just need to get this out. I went in the kitchen and fixed myself some lunch. It was a major ordeal. I have been planning to do some baking for a trip I'm taking tomorrow, and I still might. It's so overwhelming, though, and I am finding myself thinking about things and having a lot of fears. I don't want to have to be taken care of for the rest of my life. That just scares me. For me it would mean giving up more things I dream about. I don't want to go there in my mind, but I don't know how not to when fixing a bowl of leftovers is a big deal. I've kept hoping that someday I would still be able to have a family. But if I can't take care of me, how will I take care of them...? And what doctor is even going to listen to me?
July 21, 2004
I managed to make something for dinner--and I'll have leftovers for breakfast and lunch tomorrow. I'm feeling quite a bit better now--I think I had another episode, but the meds have worn off and that means I can think fairly clearly. I'm having a lot of thoughts, and I think I need to ramble about them in a bit.
July 21, 2004
I'm having trouble focusing. So many thoughts and feelings! It seems like truly clear-headed moments are so rare for me now, and usually they preceed a migraine. My thinking was clear when I was taking Depakote, but that's not a place I want to go again. I had too much weight gain and too many illnesses that stopped when I quit taking it. But does that mean I'm just refusing treatment? That's what my doctors think.
Why do I go to the doctor? I don't want things just medicated away. I want answers. I want a confirmation of what I feel in my heart is the answer. Would it mean anything? Probably not to most people, even most doctors. But it matters to me because it has to do with how my body works and what I can expect. I seem to be getting worse. But am I really? Or am I just obsessing and enjoying my illness as someone used to put it? And what would I do with a correct diagnosis? Would I take meds then? Or would I resist meds because of potential side effects? I want to think clearly again. But not at the expense of the rest of my health. But if I refuse treatment, then do I have the right to say anything about the experience of living with this? Or should I just shut up and deal with it because I made the choice to refuse treatment? That's how I feel: that I can't really win, that I'm just trading one illness for another.
Then there is the issue of how the migraines themselves affect me. Doctors and nurses don't think I'm confused because I can follow simple directions: "Squeeze both hands, raise your arms up." They wouldn't think I was "with it" if they saw me on a good day and compared it to what they saw yesterday. I could hold their hands but I had no strength. Amy even said when she picked me up that she felt like she was losing me because I had no grip. Why can other people tell that something is wrong but doctors can't? Is it all in my head? Am I just a good actress looking for attention? No, I don't need attention. If I did, I'd use a better technique to get it: something like asking for it. That's nothing I haven't done before. Then how do I explain the fact that I was able to push hard and cook supper? Did I just have some good moments? Did I rise to the occasion because I needed to, because what needed to be done wasn't something my roommates could do for me? Or was I exaggerating all day? Could I have gotten up and around more if I had just chosen to?
But if the answer is that sometimes I am going to have those disabled days or moments, what does that mean for the rest of my life? Who would want to come home after work and take care of a wife like a child because she can hardly do very basic things? And let's just nix the child idea. How can I be a decent mom when I can't stand up long enough to brush my teeth? What kind of life am I going to have? I know these episodes pass, but I also know that they are totally unpredictable and I'm afraid.
August 22, 2004
Migraines seem to greatly intensify whatever negative emotions I have lurking in the shadows. I know this, of course, but knowing it and experiencing it are two very different things. Experiencing it is like being in hell. Knowing it helps me to get out of hell and do my best to pick up the pieces from what I've done while I was in hell. I've said all this before, but sometimes the experience is so deep and so enduring that I lose sight of the fact that there is a physiological cause. This dizziness and the changes in heart rate when I go from resting to standing are some kind of new thing, and I haven't yet figured out the relationship of those to the pain phase of the migraine yet except that I'm starting to suspect that they point to a real humdinger! That's what seems to have happened this time.
I've been in bed for three days straight with the exception of dinner on Thursday night, and the emotions went wild. Part of that was the impact of the migraine on my brain. That's not something I can observe, and I'm having a very hard time giving credence to things that can't be observed physically. I've been accused one too many times of being lazy or "stressed." I either need to just get a grip or go to counseling, and everything will be fine. But it isn't fine, and part of the negative emotions has to do with acknowledging that I'm not fine and may never be fine. That sounds so gloomy and pessimistic. But it isn't pessimism any more than saying that I'm a good writer is arrogant. It's an acknowledgement of reality, and this particular reality is something I don't have any interest in facing. If it was possible, I would just go on and live normally in spite of it, like I live normally in spite of blindness. I just find ways to do the same things differently. But this is something that tears apart normalcy. I can't find any ways to do the same things differently that are reasonably safe. It doesn't seem wise to put myself in physical positions that keep my pulse over 120 for long periods of time. That's why I didn't sit up and go to church. I probably could have managed with a whole lot of effort to tolerate the dizziness, but that's four hours of my heart working as if I'm doing aerobics. I had thought of things like putting a chair at the kitchen counter so I could fix myself something to eat without standing because I needed my hands to hold on to things and keep from falling. But that's still an upright position and brings the pulse up.
So all of this set me thinking about what my future is going to be like because my symptoms are becoming more severe and more frequent, and that set off negative emotions that got very magnified. I couldn't see it because they were also somewhat legitimate. How will this additional disability affect my relationships with friends and family, ability to support myself, etc?
What really threw me for a loop, though, was my attitude last night about my spiritual life compared with my post-migraine attitude. I may as well have been a different person. Last night I couldn't grasp the reality of God or any sense of His love at all. I had to take it on faith, and faith is a weak area of my spiritual life right now. I tried to put music on, and besides the fact that it was physically painful for me to hear anything, it all just seemed abstract and fake to me. In contrast, tonight when the pain phase was finally over, I had music on and was very intensely thoughtful and "connected" with the spiritual part of myself.
October 18, 2004
I experienced severe vertigo associated with other migraine symptoms during the summer. The vertigo has become more frequent and more severe since then. This is something I'm having a lot of difficulty with because it's limiting and people don't understand it. They can't see that something is wrong, so they walk on at normal speed through open space and it's very hard for me to keep up. I'm ok on some days, but on other days I do a lot of staying in bed and holding on to things for stability. I wish I could just forget it and go on--pretend it isn't there. But it's pretty hard to pretend when you take a dive anytime you move.
I'm also experiencing a lot of memory and concentration problems. I'm keeping a lot of to-do lists, leaving files open on the computer because I forget the name of the file, etc. In between migraines I'm trying hard to develop a better organization scheme. That's something I've never chosen to do even though I know why it's helpful. "Organized clutter" has always been my motto, but I'm not doing well with organized clutter anymor. I don't like any of this stuff I'm writing about... It terrifies me. How can I maintain my "adultness" when I'm losing some key abilities? I had talked about this with Christy while I was living in Florida, and we had talked about having someone come in to do some of the physical things I was having difficulty with under supervision or just be available to fill in gaps I couldn't do. For instance, I've thought that I can do some cooking tasks sitting down, but if it's a day when I'm not thinking clearly I don't feel that it's a good idea for me to be chopping veggies regardless of whether I'm sitting down or standing up. But it's very important to me to be able to do as much of my own meal preparation as I can reasonably do. It's something I *need* to do both because making my own food is one of my methods of migraine control but also because cooking is something I enjoy and take pride in. But my main point here is that I still want to live fully. I want to be a wife and a mother, and I want to teach Bible study groups and do my writing... How can I do these things--and especially how can I do them if these limitations keep getting worse?
I've managed to come to terms in most ways with the issue of work. I'm willing to accept low income life. It's not what I want, but I'm willing to tolerate it most of the time. But I have a huge amount of student loans that I'd like to pay off, not just pay token payments on to keep myself out of legal trouble. The only alternative is having a doctor sign off that I am permanently disabled by migraines. I am terrified of that. It means having him answer no when asked if I can ever do any type of work. In some ways, I feel like that means there's an unwritten stigma/prognosis there. "This person must spend the rest of her life having everything done for her and is completely unable to handle any type of responsibility." What would that mean for my dream of having a family...? Just writing it makes me want to scream and cry.
I am now on Topamax and have had only three migrains in six months. Part of that is because I live in a good climate. But having gotten through the fall without going through a constant migraine month is a very new experience for me. If your doctor doesn't believe you, find a new doctor who does and who will work with you to continue to find the right treatment plan. Staying home is a good temporary solution that may be necessary for a while longer; but it's no way to live the rest of your life. I thought there was no hope for me; but I am going on with life now, gradually increasing my activity and rebuilding my friendships and working on building a source of income. Maybe that family will come about someday as well.