Migraine Headaches Support Group
Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on one or both sides of the head and are often accompanied by photophobia (hypersensitivity to light), phonophobia (hypersensitivity to sound) and nausea.
Hi all - this turned out to be a story rather than just a recommendation, so for those with shorter attention spans, the quick version is that botox treatments for migraine are working for me when nothing else has.
I have been experiencing common migraines, without a true aura and in most cases without an actual headache, since adolescence (I'm 46). My migraines are somewhat uncommon in that my primary symptoms were emotional and abdominal rather than headache for many of those years. I didn't recognize them as migraines until I started getting the accompanying headache, nearly always on the left, after taking lithium for the emotional BS in my early 40s. I discontinued the lithium two years ago, but the headaches increased in regularity, frequency, and intensity, until this past summer when I was getting 2-3 per week, not always completely debilitating but often so.
The nausea and emotional variability have been the worst, and I have said many times that I would put up with a lot of physical pain to get rid of those.
Well, I have had to put my money where my mouth is. Four months ago I made the decision to go to Stanford Medical, about 5 hrs from my house, to finally get an MRI to make sure I didn't have a tumor. This is after 2 years of various triptans and other drugs prescribed by my GP. I have been seen at the headache clinic in the Neurology dept. as well as the epilepsy clinic and a few others now. These people are TOTAL pros and I can't say enough good about them.
We are still in the dark about a cause, although my doc now thinks it could well be related to gastroparesis and possibly allergies, so I'm going to the digestive health clinic this week as well as the allergy/immunology clinic. Basically the 50,000-mile checkup!
After going over the treatments I have tried, they recommended botox injections. I was extremely skeptical, but they explained the process and my psych also spoke very highly of it, so I decided to give it a try. It is 31 individual shallow cranial injections at specific points to turn off various cranial muscles, the theory being that this increases blood flow and disrupts the migraine feedback loop. It has to be redone quarterly as one's body processes the botox and you get the muscles back.
I won't lie - the injections hurt, and relief is not immediate. For three months I thought I was just someone's guinea pig for their dissertation. But then, about a week and a half ago, I realized that I had a migraine for the first time in over two months, complete with paranoia and the other emotional baggage, bad nausea that I didn't miss, headache on the left side, fatigue, sensitivity to light & sound, and all the rest.
In any case, I just drove in for my 2nd treatment. If the migraines go away again, I think we have a winner.
Note that this doesn't necessarily work for ALL migraines. I have done a ton of research on them (yes, I'm a geek) and it seems that even though they are a complex behavior, there can still be a number of disparate causes, from stress to diet to physiological condition to the weather. I don't know whether botox is appropriate for all of the causes and I would be doubtful of thinking of it as a cure-all. But I'm happy to report that I think it is working for me.
Thanks for reading, and I hope this helps someone
Elwood
I have been experiencing common migraines, without a true aura and in most cases without an actual headache, since adolescence (I'm 46). My migraines are somewhat uncommon in that my primary symptoms were emotional and abdominal rather than headache for many of those years. I didn't recognize them as migraines until I started getting the accompanying headache, nearly always on the left, after taking lithium for the emotional BS in my early 40s. I discontinued the lithium two years ago, but the headaches increased in regularity, frequency, and intensity, until this past summer when I was getting 2-3 per week, not always completely debilitating but often so.
The nausea and emotional variability have been the worst, and I have said many times that I would put up with a lot of physical pain to get rid of those.
Well, I have had to put my money where my mouth is. Four months ago I made the decision to go to Stanford Medical, about 5 hrs from my house, to finally get an MRI to make sure I didn't have a tumor. This is after 2 years of various triptans and other drugs prescribed by my GP. I have been seen at the headache clinic in the Neurology dept. as well as the epilepsy clinic and a few others now. These people are TOTAL pros and I can't say enough good about them.
We are still in the dark about a cause, although my doc now thinks it could well be related to gastroparesis and possibly allergies, so I'm going to the digestive health clinic this week as well as the allergy/immunology clinic. Basically the 50,000-mile checkup!
After going over the treatments I have tried, they recommended botox injections. I was extremely skeptical, but they explained the process and my psych also spoke very highly of it, so I decided to give it a try. It is 31 individual shallow cranial injections at specific points to turn off various cranial muscles, the theory being that this increases blood flow and disrupts the migraine feedback loop. It has to be redone quarterly as one's body processes the botox and you get the muscles back.
I won't lie - the injections hurt, and relief is not immediate. For three months I thought I was just someone's guinea pig for their dissertation. But then, about a week and a half ago, I realized that I had a migraine for the first time in over two months, complete with paranoia and the other emotional baggage, bad nausea that I didn't miss, headache on the left side, fatigue, sensitivity to light & sound, and all the rest.
In any case, I just drove in for my 2nd treatment. If the migraines go away again, I think we have a winner.
Note that this doesn't necessarily work for ALL migraines. I have done a ton of research on them (yes, I'm a geek) and it seems that even though they are a complex behavior, there can still be a number of disparate causes, from stress to diet to physiological condition to the weather. I don't know whether botox is appropriate for all of the causes and I would be doubtful of thinking of it as a cure-all. But I'm happy to report that I think it is working for me.
Thanks for reading, and I hope this helps someone
Elwood
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Hi... I was just looking for support groups and came across this site. I was just diagnosed with NHL specifically Folicular Lymphoma (Large B-Cell type) and I guess it would just be nice to talk to people who have been through this. I'm 28 F and I'm a new mom, my life has changed drastically in the last two years and now this diagnosis has really gotten me down...I had a CT scan done last week...
YvetteK I hope you find something that works for you!
Yvette, I like your attitude; keep fighting, you will find something that works for you.