About two weeks ago I had a final TEE and TTE with the cardiologist. We were all shocked to learn that my PFO closed over the past year. I still have bubbles showing, however, so the doctors suspect a small Pulmonary Arteriovenous Malformation. Will I do further testing for the PAVM? Likely not. Why? Well, if it is small, there is no chance of embolizing it. I'm very tired, and I don't want to go through all of the rigamarole of testing and surgery again.
I am glad that the action we took on the issue finally supplied me with some closure. I am very grateful to Bray for her unwavering energy and help in getting closure to this situation. A patient should never have to go through so many hoops in order to get answers from a doctor, and that was the most disappointing part of this entire journey. I wanted to know my PFO was closed, on the chance that it could help my migraines. Well, surprsingly it's been closed, and I have continued to have severe migraines, so we know that the PFO has not been a contributing factor. But the important thing is that I KNOW now. I have no more questions. I can move on to different treatments.
My depression has worsened, because now I am faced with a future full of struggles. It's been very difficult to get out of bed and face the day; I've had to force myself. There will likely be no children in my future, though I do hope to be able to get back into classes slowly. I increased the dosage of my Zoloft, so I hope that it will help me be better able to deal with reality.
Right now I am focusing on day-to-day treatment of my migraines. I am not focusing on long-term treatment because right now I am too tired to deal with it. I have every intention of dealing with it in the near-future, but for the time being I have to deal with my days as they come. Thankfully my days come without the added worry or stress of a heart condition that, for some people, contribute to the daily hell of migraines.
Tuesday, June 30, 2009
Monday, May 25, 2009
Migraine Art
I've been working on this piece of art when I am feeling like it. Tonight I have a menstrual migraine that just won't die (I'm blaming our storms on top of it), and my husband is not at home, so after I have my shower I'll be working on it some more. Husbands are terribly distracting. Especially the smart, cute ones. The top skull has flames coming out of the top, and blind spots in a socket. The bottom skull has holes in the cranium and the scintillating scotoma in a socket.
Please enjoy the images, and remember, these images are copyright by me, and may not be reproduced or used in any fashion without permission. I'll post the finished project when I am able to!
Sunday, May 24, 2009
Challenging the FDA: Stop the Pain
Things haven't been going very well for me. My menstrual migraines continue to be a source of major stress, anxiety, and severe pain, along with my "normal" migraines (not that migraines are normal, but we all know and get used to what our headpain is signatured). I have had no pain free days in a month. Before that, I went through a few days of freedom that had been preceded by more than 6 weeks without a break in pain. Prior to this period by a few weeks, I went through a string of severe migraines for 7 days, ranging from a 7 on the pain scale to 10.
My migraine specialist put me on Dexamethasone to break the cycle of pain; it calmed things down for the time that I was on it, making the migraines easier to get rid of. Unfortunately they were back with a vengeance after the pack was stopped. In case the Verapamil I am now on failed (it has) to address the permanent aura and the migraines, my doc is to recommend me for long-term steroids, long-term narcotics, and pain management. I can't tell you how angering it is to feel like your doctor has given up on you. It broke my heart to hear him say that those things were even options for me, or for any sufferer, for that matter. I realize that in 3 years my migraines haven't responded to treatments, but the fact of the matter is I still believe the majority of my migraines are related to my heart problem. If closed, perhaps the reduction in migraines would help my medications work better for me, if I even needed them at all anymore.
Migraines are such a personal hell that anyone without them would never understand the freedom that comes from never having one ever again. Having a day free of migraine is a tantalizing preview of what life could be like. Life without restrictions, life without medications or endless copays. Life without worrying about what the insurance companies will or won't pay for (remind me sometime to tell you about how I needed acute IV treatment while in Status Migrainous) and how my insurance company refused to pay for any of it). Life without the misunderstanding and mistreatment of others who think you can simply "get over it" with an aspirin. You know what? We are protected by laws in this country and migraine as a disabling condition falls within the parameter of the Americans with Disabilities Act. Isn't that somewhat surprising for a "headache" that we should just "get over"? If you live with migraine, or with someone who has migraine, it shouldn't be. Migraine takes away life when it is allowed to run rampant over the sufferer.
In concluding this post, I would like to address a project that a friend and I have been working on, which is the ultimate goal of tonight's ramblings. I cannot take the credit; she has done the work. I have merely contributed my story in the hopes that someone may benefit from the effort to change the way the FDA regulates PFO closure, and to also gain closure from the poorly executed and failed ESCAPE trial, in which my investigational cardiologist will not return my phone calls or answer any inquiries into the state of my failed device placing. This article is copyright its author, please do not reprint or use without permission of this blog owner or the article author. Feel free to direct any inquiries to this post, or email me.
Continue reading "Two Women to Challenge the FDA": Stop the Pain
My migraine specialist put me on Dexamethasone to break the cycle of pain; it calmed things down for the time that I was on it, making the migraines easier to get rid of. Unfortunately they were back with a vengeance after the pack was stopped. In case the Verapamil I am now on failed (it has) to address the permanent aura and the migraines, my doc is to recommend me for long-term steroids, long-term narcotics, and pain management. I can't tell you how angering it is to feel like your doctor has given up on you. It broke my heart to hear him say that those things were even options for me, or for any sufferer, for that matter. I realize that in 3 years my migraines haven't responded to treatments, but the fact of the matter is I still believe the majority of my migraines are related to my heart problem. If closed, perhaps the reduction in migraines would help my medications work better for me, if I even needed them at all anymore.
Migraines are such a personal hell that anyone without them would never understand the freedom that comes from never having one ever again. Having a day free of migraine is a tantalizing preview of what life could be like. Life without restrictions, life without medications or endless copays. Life without worrying about what the insurance companies will or won't pay for (remind me sometime to tell you about how I needed acute IV treatment while in Status Migrainous) and how my insurance company refused to pay for any of it). Life without the misunderstanding and mistreatment of others who think you can simply "get over it" with an aspirin. You know what? We are protected by laws in this country and migraine as a disabling condition falls within the parameter of the Americans with Disabilities Act. Isn't that somewhat surprising for a "headache" that we should just "get over"? If you live with migraine, or with someone who has migraine, it shouldn't be. Migraine takes away life when it is allowed to run rampant over the sufferer.
In concluding this post, I would like to address a project that a friend and I have been working on, which is the ultimate goal of tonight's ramblings. I cannot take the credit; she has done the work. I have merely contributed my story in the hopes that someone may benefit from the effort to change the way the FDA regulates PFO closure, and to also gain closure from the poorly executed and failed ESCAPE trial, in which my investigational cardiologist will not return my phone calls or answer any inquiries into the state of my failed device placing. This article is copyright its author, please do not reprint or use without permission of this blog owner or the article author. Feel free to direct any inquiries to this post, or email me.
Continue reading "Two Women to Challenge the FDA": Stop the Pain
Thursday, April 9, 2009
Facebook and Other Changes; Sleep Part II
Hello all,
I've moved from my MySpace account to my Facebook account in order to stay connected with the migraine team from MMC. I still check MySpace so don't be afraid to send a message if you need to, just keep in mind that I it may take me some time to get back to you there. Facebook is an excellent alternative to keeping in touch with people you enjoy networking with, and while MySpace is easier to personalize, Facebook is more streamlined and also gives one options to express herself.
Things haven't been great around here lately. I have been banned from all electronic media before bedtime, since the Seroquel has given me the worst restless legs. Typically I sit up and wait for the stuff to kick in, not anymore. My doc had a fit when he heard that I was crashing out to the internet or TV before bedtime.
This week has been full of changes for myself and my sleep habits. Since I am restricted to artwork or reading before bed, that's what I am sticking to in order to get my brain ready for sleep, along with taking my night meds. It seems like we definitely don't pay much attention to the sleep needs out bodies have before bedtime, especially in America, but in just a few days I have noticed a change. I am no longer agitated before I do lay down, and I am trying very hard not to nap and to get up before 11 AM. My brain tends to get stimulated by all the reading I do on the internet since I'm a devout link-clicker, so in a way I tend to get all fired up and then it's difficult for me to get to sleep or stay asleep. I also tend to drink the majority of my liquids in the evening before bed, and that should be a no-no for anyone with sleep issues. My body is more used to getting up to eliminate in the middle of the night than anything else. It's been most difficult to cut down on the drinks since my medications tend to parch me in an extreme way.
Today at Bed, Bath, and Beyond I found a nice microwaveble eye mask. It can also be put into the freezer. I've fought a migraine for most of the day, and when I came home I tried the heatable mask. It's nice and size-adjustable so I don't have to worry about it slipping around on my head. It is also scented with lavendar and chamomile, which can be important stress-relieving scents for individuals with migraine or sleeping problems. It was comfortable to wear for me and the heat lasted a long time. I also purchased a sleeping mask for my eyes during the day when I can't stand the light during a migraine and need to lay down. I bought some good light-blocking curtains at WalMart recently but with cats in the house who enjoy laying down on the window seat sometimes you can't keep them closed. My cats are a necessary part of my migraine therapy so I don't deny them the bedroom when they want to be with me. Ever try locking a cat out of a room? If you're trying to rest, sometimes keeping them out is the absolute worst thing you can do.
For more information on sleep issues and migraine, keep tabs here at MMC: Transformed Migraine Related to Sleep Problems
Reconciling sleep issues with your daily habits and body's needs can be terribly hard to get through. I know, I've been doing it for 16 years now. But the important thing is to get yourself set up before bedtime with things you might need, like the sleep mask, heating/cool pad, a good book, your medications, and anything else you think you'll need to help you. These things aren't crutches, but they do take time, and making time for sleep is one of the most important things you can do for yourself. No one is better off if you're not sleeping. It can affect everyone in the household, including your children, especially if you're not functioning up to par. I urge everyone to re-asses the habits they are indulging in before bedtime and question what those habits are specifically doing for you if not preparing your highly-strung, sensitive brain for sleep. Specific sleep-preparing habits isn't just for you, either, it needs to be for everyone in the household. I know my husband is doing his best to make sure he sets a good example! And as for kids, well, I think that no matter what, children in today's world will best benefit from a good sleep-preparation schedule more than anyone else.
I've moved from my MySpace account to my Facebook account in order to stay connected with the migraine team from MMC. I still check MySpace so don't be afraid to send a message if you need to, just keep in mind that I it may take me some time to get back to you there. Facebook is an excellent alternative to keeping in touch with people you enjoy networking with, and while MySpace is easier to personalize, Facebook is more streamlined and also gives one options to express herself.
Things haven't been great around here lately. I have been banned from all electronic media before bedtime, since the Seroquel has given me the worst restless legs. Typically I sit up and wait for the stuff to kick in, not anymore. My doc had a fit when he heard that I was crashing out to the internet or TV before bedtime.
This week has been full of changes for myself and my sleep habits. Since I am restricted to artwork or reading before bed, that's what I am sticking to in order to get my brain ready for sleep, along with taking my night meds. It seems like we definitely don't pay much attention to the sleep needs out bodies have before bedtime, especially in America, but in just a few days I have noticed a change. I am no longer agitated before I do lay down, and I am trying very hard not to nap and to get up before 11 AM. My brain tends to get stimulated by all the reading I do on the internet since I'm a devout link-clicker, so in a way I tend to get all fired up and then it's difficult for me to get to sleep or stay asleep. I also tend to drink the majority of my liquids in the evening before bed, and that should be a no-no for anyone with sleep issues. My body is more used to getting up to eliminate in the middle of the night than anything else. It's been most difficult to cut down on the drinks since my medications tend to parch me in an extreme way.
Today at Bed, Bath, and Beyond I found a nice microwaveble eye mask. It can also be put into the freezer. I've fought a migraine for most of the day, and when I came home I tried the heatable mask. It's nice and size-adjustable so I don't have to worry about it slipping around on my head. It is also scented with lavendar and chamomile, which can be important stress-relieving scents for individuals with migraine or sleeping problems. It was comfortable to wear for me and the heat lasted a long time. I also purchased a sleeping mask for my eyes during the day when I can't stand the light during a migraine and need to lay down. I bought some good light-blocking curtains at WalMart recently but with cats in the house who enjoy laying down on the window seat sometimes you can't keep them closed. My cats are a necessary part of my migraine therapy so I don't deny them the bedroom when they want to be with me. Ever try locking a cat out of a room? If you're trying to rest, sometimes keeping them out is the absolute worst thing you can do.
For more information on sleep issues and migraine, keep tabs here at MMC: Transformed Migraine Related to Sleep Problems
Reconciling sleep issues with your daily habits and body's needs can be terribly hard to get through. I know, I've been doing it for 16 years now. But the important thing is to get yourself set up before bedtime with things you might need, like the sleep mask, heating/cool pad, a good book, your medications, and anything else you think you'll need to help you. These things aren't crutches, but they do take time, and making time for sleep is one of the most important things you can do for yourself. No one is better off if you're not sleeping. It can affect everyone in the household, including your children, especially if you're not functioning up to par. I urge everyone to re-asses the habits they are indulging in before bedtime and question what those habits are specifically doing for you if not preparing your highly-strung, sensitive brain for sleep. Specific sleep-preparing habits isn't just for you, either, it needs to be for everyone in the household. I know my husband is doing his best to make sure he sets a good example! And as for kids, well, I think that no matter what, children in today's world will best benefit from a good sleep-preparation schedule more than anyone else.
Tuesday, March 10, 2009
Migraine and PFO: Is there a link?
I've been going through the migraine/PFO drama for a couple of years now. In January of 2007, a TCD revealed a large hole in my heart, 4 on resting, 5+ on Valsalva. After my PFO closure procedure, the device failed and I was left with a hole perhaps, just slightly, a teensy bit smaller. A 3 on rest and a 5 on Valsalva.
A patent foramen ovale is a hole in the heart between the upper chambers. It's necessary before birth to allow circulation through the mother and fetus, as a fetus does not yet need his lungs to filter out the junk we all accumulate as our circulatory system works. After birth, upon first breaths, this hole should seal shut, allowing the blood to pass into appropriate chambers, freshly filtered from the lungs.
One in four adults, roughly 25% of the population, will have a heart that still has an open PFO. The PFO may or may not be large, and may or may not cause symptoms for its bearer over time.
The prevalence of PFO in migraineurs is slightly higher than in non-migraineurs. Many studies have shown that a larger PFO may be suspected in the role of migraine etimiology, particularly in sufferers who have pre-migraine pain warning symptoms such as aura.
There are many theories revolving around the PFO:
1. A PFO allows unfiltered and unoxygenated blood through to the brain, making the brain more susceptible to its migraine triggers;
2. A PFO is not a CAUSE of migraine, but may be implicted in perpetuating the migraine cycle in individuals whose migraines are not easily controllable by medications;
3. A PFO may cause a migraineur to be more susceptible to stroke (by allowing clots through to the brain). Divers with the bends, and other stroke patients, all with PFO, were among the first to discover that by closing the hole, their headache symtpoms disappeared.
These theories aren't met without hard questions however. During MIST I, a UK study generating the first-line results of the PFO/migraine debate, it was discovered that up to 37% of migraineurs with closure were migraine-free or suffering less frequently or intensely. Unfortunately the variables used during the study such as stroke victims, couldn't rule out the function of PFO and migraine exclusively. Its participants had already had focal neurological damage and would have been candidates for closure anyway. MIST II shut down shortly thereafter, claiming a cutoff of funding and perhaps controversy over examination findings and whether or not one of the lead investigators was truly qualified enough to BE an investigator. The MIST studies can be found through Heartwire, a cardiology journal. Beware, as most research articles go, you'll pay for the article if you want to see it. Here's a substitute article: MIST: Migraine Intervention with STARflex Technology Trials
The ESCAPE study, in which I have participated, was recently shut down for several reasons. On one hand, there has been positive anecdotal stories about successful closure. At my site, there were supposed to be around 500 study subjects; unfortunately about 50 is what we got. Out of those 50, 2 of us had incomplete closures (yours truly). The PREMERE device was pulled from study due to its ineffectiveness at closing ASDs and new study subjects were turned away. The device has been called too flimsy to work for PFO closure. There's an article for this failure, too: Just a 2% Overlap for PFO and migraine
There is always a double standard to research studies. Firstly, doctors want to know what works for any disease. And when you suffer from something that takes over your happy life, you know you're up for just about anything when it comes to getting a cure. That's where your research participation comes in. Secondly, there is always a medical institution that wants to make money by getting its device/medication out there for chronic use in treatments or surgeries, and by word of mouth for being the best option. My study device failed due to design failure and too little surface area to effectively shut my large PFO.
Recently, in Italy, a new study confirmed that yes, PFO closure works for migraine: Fixing a Hole in the Heart May be the Cure for Migraine Sufferers
However, why is it that Italy's study seems to have avoided controversy along with suggesting more than a casual link between PFO and migraine? It might have to do with the fact that they narrowed their criteria down to individuals with aura and large PFOs, rather than just anyone with a PFO of any size or any type of migraine.
So what does all of this mean, exactly? Well, we can't know for sure. What's known for sure is that many of us that experience migraine with aura have a PFO, but others do not. That makes it even more confusing. In my case, I experience migraine on a daily basis, with persistent aura. When I went in for closure, and the device was still seated correctly, I had no aura for months. However, I did still experience almost daily migraine attacks, but that was to be expected. Cessation of migraine attacks in individuals with PFO closure sometimes doesn't occur until the 4th month after closure, at the earliest. 6 months after PFO closure, my migraines got worse and my aura became permanent. 6 months after that, I discovered my PFO had been randomized into the test arm, but that the device failed.
What this means, for now, is that PFO closure is likely a future treatement for those with the most severe and debilitating attacks following aura. What we do know now, is that women who undergo migraine attacks with aura may be more susceptible to heart disease and stroke than those without aura: Migraine with Aura Linked to Cardiovascular Disease in Women
What I am hoping for is that this information will eventually come together in a way that most benefits the individuals who suffer with migraine. Personally, I think it's all linked, in one way or another, for many of us. For others, it likely won't be. But just the fact that these are new discoveries under investigation makes the future of migraine treatment look promising.
A patent foramen ovale is a hole in the heart between the upper chambers. It's necessary before birth to allow circulation through the mother and fetus, as a fetus does not yet need his lungs to filter out the junk we all accumulate as our circulatory system works. After birth, upon first breaths, this hole should seal shut, allowing the blood to pass into appropriate chambers, freshly filtered from the lungs.
One in four adults, roughly 25% of the population, will have a heart that still has an open PFO. The PFO may or may not be large, and may or may not cause symptoms for its bearer over time.
The prevalence of PFO in migraineurs is slightly higher than in non-migraineurs. Many studies have shown that a larger PFO may be suspected in the role of migraine etimiology, particularly in sufferers who have pre-migraine pain warning symptoms such as aura.
There are many theories revolving around the PFO:
1. A PFO allows unfiltered and unoxygenated blood through to the brain, making the brain more susceptible to its migraine triggers;
2. A PFO is not a CAUSE of migraine, but may be implicted in perpetuating the migraine cycle in individuals whose migraines are not easily controllable by medications;
3. A PFO may cause a migraineur to be more susceptible to stroke (by allowing clots through to the brain). Divers with the bends, and other stroke patients, all with PFO, were among the first to discover that by closing the hole, their headache symtpoms disappeared.
These theories aren't met without hard questions however. During MIST I, a UK study generating the first-line results of the PFO/migraine debate, it was discovered that up to 37% of migraineurs with closure were migraine-free or suffering less frequently or intensely. Unfortunately the variables used during the study such as stroke victims, couldn't rule out the function of PFO and migraine exclusively. Its participants had already had focal neurological damage and would have been candidates for closure anyway. MIST II shut down shortly thereafter, claiming a cutoff of funding and perhaps controversy over examination findings and whether or not one of the lead investigators was truly qualified enough to BE an investigator. The MIST studies can be found through Heartwire, a cardiology journal. Beware, as most research articles go, you'll pay for the article if you want to see it. Here's a substitute article: MIST: Migraine Intervention with STARflex Technology Trials
The ESCAPE study, in which I have participated, was recently shut down for several reasons. On one hand, there has been positive anecdotal stories about successful closure. At my site, there were supposed to be around 500 study subjects; unfortunately about 50 is what we got. Out of those 50, 2 of us had incomplete closures (yours truly). The PREMERE device was pulled from study due to its ineffectiveness at closing ASDs and new study subjects were turned away. The device has been called too flimsy to work for PFO closure. There's an article for this failure, too: Just a 2% Overlap for PFO and migraine
There is always a double standard to research studies. Firstly, doctors want to know what works for any disease. And when you suffer from something that takes over your happy life, you know you're up for just about anything when it comes to getting a cure. That's where your research participation comes in. Secondly, there is always a medical institution that wants to make money by getting its device/medication out there for chronic use in treatments or surgeries, and by word of mouth for being the best option. My study device failed due to design failure and too little surface area to effectively shut my large PFO.
Recently, in Italy, a new study confirmed that yes, PFO closure works for migraine: Fixing a Hole in the Heart May be the Cure for Migraine Sufferers
However, why is it that Italy's study seems to have avoided controversy along with suggesting more than a casual link between PFO and migraine? It might have to do with the fact that they narrowed their criteria down to individuals with aura and large PFOs, rather than just anyone with a PFO of any size or any type of migraine.
So what does all of this mean, exactly? Well, we can't know for sure. What's known for sure is that many of us that experience migraine with aura have a PFO, but others do not. That makes it even more confusing. In my case, I experience migraine on a daily basis, with persistent aura. When I went in for closure, and the device was still seated correctly, I had no aura for months. However, I did still experience almost daily migraine attacks, but that was to be expected. Cessation of migraine attacks in individuals with PFO closure sometimes doesn't occur until the 4th month after closure, at the earliest. 6 months after PFO closure, my migraines got worse and my aura became permanent. 6 months after that, I discovered my PFO had been randomized into the test arm, but that the device failed.
What this means, for now, is that PFO closure is likely a future treatement for those with the most severe and debilitating attacks following aura. What we do know now, is that women who undergo migraine attacks with aura may be more susceptible to heart disease and stroke than those without aura: Migraine with Aura Linked to Cardiovascular Disease in Women
What I am hoping for is that this information will eventually come together in a way that most benefits the individuals who suffer with migraine. Personally, I think it's all linked, in one way or another, for many of us. For others, it likely won't be. But just the fact that these are new discoveries under investigation makes the future of migraine treatment look promising.
Tuesday, February 17, 2009
Sleep and Migraine, Part 1
Sleep is normally regarded as an essential part of life. Its mysteries have yet to be fully unlocked, but as a Migraineur I know that sleep is my best friend, and it can also be my worst enemy.
Sleep can be a Migraine trigger for many individuals. Too little, or too much, can overwork the brain into a frenzy. Unrefreshing sleep may also wake an individual with a severe Migraine.
Sleep and I have a love/hate relationship. My sleep issues are compounded by my CEBV and depression. Sometimes it seems like an endless chicken/egg cycle. I almost always wake up with full blown aura activity or a headache. My headaches aren't always Migrainous in nature, but left untreated these headaches have generally turned into a full-blown Migraine. It can be confusing - you need sleep but you know it's going to hurt when you get up.
Generally if I trigger from sleep alone, it's going to be because I had 4 hours of sleep the night before and came home from work to nap for another 3-4 hours. Because of the CEBV, some days I sleep 10+ hours, and I'm in trouble when I wake up (like right now). I went to bed last night around 1 AM (which is typical for me, that's my schedule), and today I finally got up about 1:30 PM. My Migraine specialist has me on Seroquel and melatonin both to help boost my anti-depressant and keep me asleep through the night. The Seroquel really puts me down, and the melatonin keeps me out. Generally I will wake up in the night anywhere from once to 3 times. Sometimes I will be unable to sleep after waking up so many times. Every once in a while I can attribute my insomnia to Migraine euphoria; other times I have only my napping to blame.
Poor quality of sleep can be attributed to many causes. Bad mattresses, pillows, napping for too long in the afternoons, depression or anxiety, and any number of illnesses or disorders. These things all perpetuate the Migraine cycles. I'm sorry to say I haven't found the key to adjusting my sleep outside of avoiding long naps. It seems no matter what I wake up unrefreshed and heading into a Migraine. The good thing though, is that talking to my specialist helps me to look for answers that may help me. But just like finding the right medication or regimen to help ease the number of Migraines one is having, finding the answer to good quality sleep can take a while too. I am happy that I am sleeping throughout the night for the first time in almost 5 years, but it still worries me that I sleep so much and I'm dependent on coffee first thing upon waking.
So where is the answer? For me, there is no solid answer since CEBV relies heavily on rest when the body has been pushed a little further than it's able to cope with, and Migraines in and of themselves can be fatiguing and push you into bed as a coping mechanism too.
For others, however, understanding your schedule of sleep and looking back on your Migraine diary may give you a clue as to whether or not sleep is a trigger for you. When you can see a sleep/Migraine pattern emerge, it may be time to pay more attention to what is going on in the evenings before you sleep...
Sleep can be a Migraine trigger for many individuals. Too little, or too much, can overwork the brain into a frenzy. Unrefreshing sleep may also wake an individual with a severe Migraine.
Sleep and I have a love/hate relationship. My sleep issues are compounded by my CEBV and depression. Sometimes it seems like an endless chicken/egg cycle. I almost always wake up with full blown aura activity or a headache. My headaches aren't always Migrainous in nature, but left untreated these headaches have generally turned into a full-blown Migraine. It can be confusing - you need sleep but you know it's going to hurt when you get up.
Generally if I trigger from sleep alone, it's going to be because I had 4 hours of sleep the night before and came home from work to nap for another 3-4 hours. Because of the CEBV, some days I sleep 10+ hours, and I'm in trouble when I wake up (like right now). I went to bed last night around 1 AM (which is typical for me, that's my schedule), and today I finally got up about 1:30 PM. My Migraine specialist has me on Seroquel and melatonin both to help boost my anti-depressant and keep me asleep through the night. The Seroquel really puts me down, and the melatonin keeps me out. Generally I will wake up in the night anywhere from once to 3 times. Sometimes I will be unable to sleep after waking up so many times. Every once in a while I can attribute my insomnia to Migraine euphoria; other times I have only my napping to blame.
Poor quality of sleep can be attributed to many causes. Bad mattresses, pillows, napping for too long in the afternoons, depression or anxiety, and any number of illnesses or disorders. These things all perpetuate the Migraine cycles. I'm sorry to say I haven't found the key to adjusting my sleep outside of avoiding long naps. It seems no matter what I wake up unrefreshed and heading into a Migraine. The good thing though, is that talking to my specialist helps me to look for answers that may help me. But just like finding the right medication or regimen to help ease the number of Migraines one is having, finding the answer to good quality sleep can take a while too. I am happy that I am sleeping throughout the night for the first time in almost 5 years, but it still worries me that I sleep so much and I'm dependent on coffee first thing upon waking.
So where is the answer? For me, there is no solid answer since CEBV relies heavily on rest when the body has been pushed a little further than it's able to cope with, and Migraines in and of themselves can be fatiguing and push you into bed as a coping mechanism too.
For others, however, understanding your schedule of sleep and looking back on your Migraine diary may give you a clue as to whether or not sleep is a trigger for you. When you can see a sleep/Migraine pattern emerge, it may be time to pay more attention to what is going on in the evenings before you sleep...
Friday, February 13, 2009
The Migraine Book (of Doom)
Hi all...I'm back. I hope to maintain my resolve to keep this blog going.
Still no word from my cardiac surgeon. Oh well. At this moment in time, I am not sweating it.
I did see a Neuro-opthamalogist this past week, however. He diagnosed me with vasospastic arteries, and put me on Verapamil to control the disorder and hopefully help my persistent aura.
I have also seen my migraine specialist since then, and we are going to try Seroquel again, to give my Zoloft a boost and help the neurotransmitters in my brain to level out. Hopefully, the Verapamil and Seroquel together will calm everything down.
I am still taking my DHE cocktail as well, and have added Migranal in too.
So, there are my updates. However, I want to write about my migraine book. It seems that with migraine being as stubborn of a disorder as it is, it's sometimes necessary for chronic sufferers to put together a binder of important information in case of an emergency. In my case, my constant migraines are a stroke risk, coupled with the vasospastic arteries and the incidence of my PFO. You cannot be too careful when it comes to logging your medications and health issues.
First off, I bought a binder with kittens on it. You can buy whatever kind of binder you want, of course, it doesn't matter. I chose kittens because I love cats, and babies are always a happy thing. You need some cheer in the hospital, right? Next, I filled it with folders. I labeled these folders for migraine articles, personal health info, and consent/information about the ESCAPE PFO trial. Also, I have plastic sleeves that I keep the pharmacy drug handouts in for easy access. My migraine diary is also in this binder too, as well as the TCD dopplar readouts from my PFO testing. Anytime there is new information to add, it goes into the book or is written down in the workbooks. You shouldn't be restricted by anyone's methods, either, unless your doctor has a need to access that information too. So whatever manner of information gathering works for you, get to it! You never know when you'll need that info. As an aside, I have begun decorating my binder with goofy stickers. Now my doctors all know I am a dork, proudly proclaimed on the inside of my binder!
Sometimes the migraine patient can be confused about what she has or hasn't tried yet. These workbooks, provided by Teri Robert at http://www.healthcentral.com/migraine/tools-192843-5_2.html can help you keep track of what's going on. With managing migraines, the last thing you need is to doubt what you've done in the past.
Also, ER forms for your migraine doc and you to fill out are also handy. Found here, http://www.healthcentral.com/migraine/tools-195672-5.html , these forms help the ER staff to treat you more effectively by understanding that you are, indeed, a migraine patient under the care of a neuro or specialiized doctor who may need different medications that are generally given to migraine patients. The migraine complaint is among the first when drug seekers go into the ER looking for pain medication, so these forms can also help you avoid being labeled as a drug seeker.
Last but not least, a medical ID bracelet is a good idea as well, especially if you are taking several medications. In an emergency, if you cannot speak for yourself, the bracelet can, and the ID company's dispatchers have access to your medications list so that responders know what they can and cannot give to you while you are under their care. Your physicians' information is also stored so that they can be reached if there is a question about your health. In my case, I have a PFO occluder device and a cardiac anyeurism, along with a PFO that was not sealed with the occluder, so my cardiologist's number is a primary contact. Of course, we all hope that we'll never have to use the bracelet for any emergency situation. But it's worth paying the money to make sure your family and emergency care doctors don't have to scramble to make guesses about your medications or conditions. Plus, donations to the ID companies go to help other patients with their needs as well. It's a win-win situation for everyone.
Still no word from my cardiac surgeon. Oh well. At this moment in time, I am not sweating it.
I did see a Neuro-opthamalogist this past week, however. He diagnosed me with vasospastic arteries, and put me on Verapamil to control the disorder and hopefully help my persistent aura.
I have also seen my migraine specialist since then, and we are going to try Seroquel again, to give my Zoloft a boost and help the neurotransmitters in my brain to level out. Hopefully, the Verapamil and Seroquel together will calm everything down.
I am still taking my DHE cocktail as well, and have added Migranal in too.
So, there are my updates. However, I want to write about my migraine book. It seems that with migraine being as stubborn of a disorder as it is, it's sometimes necessary for chronic sufferers to put together a binder of important information in case of an emergency. In my case, my constant migraines are a stroke risk, coupled with the vasospastic arteries and the incidence of my PFO. You cannot be too careful when it comes to logging your medications and health issues.
First off, I bought a binder with kittens on it. You can buy whatever kind of binder you want, of course, it doesn't matter. I chose kittens because I love cats, and babies are always a happy thing. You need some cheer in the hospital, right? Next, I filled it with folders. I labeled these folders for migraine articles, personal health info, and consent/information about the ESCAPE PFO trial. Also, I have plastic sleeves that I keep the pharmacy drug handouts in for easy access. My migraine diary is also in this binder too, as well as the TCD dopplar readouts from my PFO testing. Anytime there is new information to add, it goes into the book or is written down in the workbooks. You shouldn't be restricted by anyone's methods, either, unless your doctor has a need to access that information too. So whatever manner of information gathering works for you, get to it! You never know when you'll need that info. As an aside, I have begun decorating my binder with goofy stickers. Now my doctors all know I am a dork, proudly proclaimed on the inside of my binder!
Sometimes the migraine patient can be confused about what she has or hasn't tried yet. These workbooks, provided by Teri Robert at http://www.healthcentral.com/migraine/tools-192843-5_2.html can help you keep track of what's going on. With managing migraines, the last thing you need is to doubt what you've done in the past.
Also, ER forms for your migraine doc and you to fill out are also handy. Found here, http://www.healthcentral.com/migraine/tools-195672-5.html , these forms help the ER staff to treat you more effectively by understanding that you are, indeed, a migraine patient under the care of a neuro or specialiized doctor who may need different medications that are generally given to migraine patients. The migraine complaint is among the first when drug seekers go into the ER looking for pain medication, so these forms can also help you avoid being labeled as a drug seeker.
Last but not least, a medical ID bracelet is a good idea as well, especially if you are taking several medications. In an emergency, if you cannot speak for yourself, the bracelet can, and the ID company's dispatchers have access to your medications list so that responders know what they can and cannot give to you while you are under their care. Your physicians' information is also stored so that they can be reached if there is a question about your health. In my case, I have a PFO occluder device and a cardiac anyeurism, along with a PFO that was not sealed with the occluder, so my cardiologist's number is a primary contact. Of course, we all hope that we'll never have to use the bracelet for any emergency situation. But it's worth paying the money to make sure your family and emergency care doctors don't have to scramble to make guesses about your medications or conditions. Plus, donations to the ID companies go to help other patients with their needs as well. It's a win-win situation for everyone.
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