Familial Hemiplegic Migraine (FHM)
Interesting title. Yes, that's what I thought too, when I went to my Neurologist appointment on Wednesday. I figure it was going to be a normal appointment. I was going to tell him. I am still having 12-18 migraines a month, (13 last month) and that the medicine he has me on is just making me gain weight which I do NOT like at all. Well, that wasn't the case at all. He asked me about the severity of my migraines. Just like in the past, I mentioned when I have a severe migraine, my right arm becomes weak during the migraine and then lasts for days on end. This made him start typing rapidly on his computer. He's not much of a people person, which drives me crazy, but he is a great doctor. Anyway, let me tell you what happened prior to this appointment. Warning, it may be a long post.
Well, I have been warned NOT to fast, due to migraine health issue, but as a member of The Church of Jesus Christ of Latter-day Saints, I have the opportunity to do so on the first Sunday of each month. Well, our family decided to fast for a family in our neighborhood, who is not of our faith and invite them to a fireside on November
18th about a Humanitarian project our ward is doing at our ward Christmas party on December 1st. The fireside will talk about the Humanitarian efforts the church does and what our ward will be doing at the ward Christmas party and how it will help many people. Well, just so you know, we did invite this family on November 11th to the fireside and the ward Christmas party, so I guess we will see if they will attend both events. Anyway, in my personal prayer, I ask my Father-in-Heaven that none of us would suffer any side effects from fasting, ie migraines. Well, I was the only that did. I ended up being in bed for 2 days with a severe migraine and then my right arm was so weak for nearly 4 days following that I could hardly use it. I even tried taking Advil in high amounts and nothing would relieve the pain. My mother suggested trying heat. So, I used a heating pad when I could and that helped eased the pain somewhat. When I went to the doctor almost a week after the migraine had ended my arm was still a little weak and he could tell when he had tested me.
Now, he is having me have a repeated MRI on Tuesday. This one will include my head, neck and spine. I am NOT looking forward this as I am EXTREMELY claustrophobic. It's a good thing he gave me a prescription for Xanax. Also, I had my blood drawn that same day. They only took 23, (yes, 23) viles of blood to do a coagulation profile. Basically to see if my blood clots. Also, he is sending me to a Cardiologist, because he wants to put me on a heart medicine, but he wants to make sure I don't have an AV Block. I don't even know what that means. The last thing he wants me to do is get genetic testing done to see if I have Familial Hemiplegic Migraine. It is only a $3000 test that my insurance will NOT cover, but rest assured I talked to the company and if I paid 20% up front ($600) they would go up to bat for me with my insurance company. So, if any of you have an extra $600 laying around, I could put it to great use. :)
All of you who are reading this are saying, what is the Familial Hemiplegic Migraine. Well, I will try my best to explain it to you, but if I don't do it justice, you are welcome to google it. FHM is a rare form of Migraine disease. People who have FHM usually have an aura prior to their migraine which can last days or weeks and they have paralysis on one side of their body. (Hemplegia) When this onset comes on, it can simulate a stroke. People with this disease also have severe difficulty with sound and light with their migraines. The one thing I absolutely didn't like learning about this disease is that I couldn't take my Maxalt anymore. That was the one medicine I could count on to help me feel better in a few hours after a migraine hit. If I do have this disease, they better find some other migraine drug that is strong enough to knock my headaches away, so that I can live a somewhat normal life, because the current one I am on now will not cut it and I will revert back to Maxalt and I know that could eventually shorten my life. The reason they say that Maxalt isn't allowed with patients who are FHM, is because Maxalt constricts the vessels and in turn could cause a stroke. Also, people with FHM, should wear a medical alert bracelet, which I am not one who likes to wear bracelets.
So, after all this is said and done for this week, I had a wise friend say to me. That I needed to suffer that 2 day migraine and then weak arm for 6 days, so that my doctor could finally figure out what was wrong with me. She also said that it took my faith in fasting for others needs that the Lord was willing to answer one of my prayers. I have been praying for 19 years to be relieved or to find some type of an answer to my migraines. I have only been seeing this Neurologist since May and I have been telling him every month about my arm, so I don't know why it was THIS month he finally listened, but he did. I guess we will see what all the test results will say and if I do have FHM.
I guess if I don't have FHM it is only one more area that I have explored with my life journey of migraines. Anyway, I will continue to endure till the end.
Well, I have been warned NOT to fast, due to migraine health issue, but as a member of The Church of Jesus Christ of Latter-day Saints, I have the opportunity to do so on the first Sunday of each month. Well, our family decided to fast for a family in our neighborhood, who is not of our faith and invite them to a fireside on November
18th about a Humanitarian project our ward is doing at our ward Christmas party on December 1st. The fireside will talk about the Humanitarian efforts the church does and what our ward will be doing at the ward Christmas party and how it will help many people. Well, just so you know, we did invite this family on November 11th to the fireside and the ward Christmas party, so I guess we will see if they will attend both events. Anyway, in my personal prayer, I ask my Father-in-Heaven that none of us would suffer any side effects from fasting, ie migraines. Well, I was the only that did. I ended up being in bed for 2 days with a severe migraine and then my right arm was so weak for nearly 4 days following that I could hardly use it. I even tried taking Advil in high amounts and nothing would relieve the pain. My mother suggested trying heat. So, I used a heating pad when I could and that helped eased the pain somewhat. When I went to the doctor almost a week after the migraine had ended my arm was still a little weak and he could tell when he had tested me.
Now, he is having me have a repeated MRI on Tuesday. This one will include my head, neck and spine. I am NOT looking forward this as I am EXTREMELY claustrophobic. It's a good thing he gave me a prescription for Xanax. Also, I had my blood drawn that same day. They only took 23, (yes, 23) viles of blood to do a coagulation profile. Basically to see if my blood clots. Also, he is sending me to a Cardiologist, because he wants to put me on a heart medicine, but he wants to make sure I don't have an AV Block. I don't even know what that means. The last thing he wants me to do is get genetic testing done to see if I have Familial Hemiplegic Migraine. It is only a $3000 test that my insurance will NOT cover, but rest assured I talked to the company and if I paid 20% up front ($600) they would go up to bat for me with my insurance company. So, if any of you have an extra $600 laying around, I could put it to great use. :)
All of you who are reading this are saying, what is the Familial Hemiplegic Migraine. Well, I will try my best to explain it to you, but if I don't do it justice, you are welcome to google it. FHM is a rare form of Migraine disease. People who have FHM usually have an aura prior to their migraine which can last days or weeks and they have paralysis on one side of their body. (Hemplegia) When this onset comes on, it can simulate a stroke. People with this disease also have severe difficulty with sound and light with their migraines. The one thing I absolutely didn't like learning about this disease is that I couldn't take my Maxalt anymore. That was the one medicine I could count on to help me feel better in a few hours after a migraine hit. If I do have this disease, they better find some other migraine drug that is strong enough to knock my headaches away, so that I can live a somewhat normal life, because the current one I am on now will not cut it and I will revert back to Maxalt and I know that could eventually shorten my life. The reason they say that Maxalt isn't allowed with patients who are FHM, is because Maxalt constricts the vessels and in turn could cause a stroke. Also, people with FHM, should wear a medical alert bracelet, which I am not one who likes to wear bracelets.
So, after all this is said and done for this week, I had a wise friend say to me. That I needed to suffer that 2 day migraine and then weak arm for 6 days, so that my doctor could finally figure out what was wrong with me. She also said that it took my faith in fasting for others needs that the Lord was willing to answer one of my prayers. I have been praying for 19 years to be relieved or to find some type of an answer to my migraines. I have only been seeing this Neurologist since May and I have been telling him every month about my arm, so I don't know why it was THIS month he finally listened, but he did. I guess we will see what all the test results will say and if I do have FHM.
I guess if I don't have FHM it is only one more area that I have explored with my life journey of migraines. Anyway, I will continue to endure till the end.
posted by Holly | 5:58 PM
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