Disclaimer: Today is November 14. I actually wrote this post on Thursday, November 12, but was not able to upload it to my blog because of lack of internet access. I am retroactively uploading it under the correct date.
I’ve got an IV inserted at the bend of my right wrist, so I’m having to type everything with my left hand. (I’m right handed…)
Today started at 4am with the insertion of an IV port and more blood tests, and cheek swabs for DNA testing. I had another round of pain tests, and the rest of the time was prepping and waiting for the lumbar puncture.
The lumbar puncture itself went fine. It wasn’t exactly my idea of a good time, but I did not feel any pain from the actual procedure. Ironically, it’s the stuff they use to numb the area that hurts the most!
Kenny and I are now resting peacefully (napping and watching lots of TV, not necessarily in that order). They've given us medication to help with sleep, so I'm falling asleep now.
That’s all for now!
Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, exhaustion, dull pain in back at site of lumbar puncture.
Mood (10 is best): 7
Energy (10 is best): 4 (after my naps)
Physical Discomfort (10 is worst): 5
Thursday, November 12, 2009
Wednesday, November 11, 2009
Georgetown CFS Study: Day 1
Please see I'm in the Georgetown CFS Study for background.
It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.
Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.
This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.
Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.
Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.
And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.
I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.
I'm really excited to be a part of this study!
That's it for now, I have to sleep.
Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.
Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3
It's very late, but I felt the need to write a quick post about the Georgetown CFS study that my husband and I are participating in.
Kenny and I arrived in Washington, DC late last night. Here's the best part: no migraine! My dad picked us up, and we spent the night at my parents' house.
This morning we checked into Georgetown University Hospital and immediately started getting down to business. In addition to going over our complete health histories (mine took over an hour; Kenny's took about two seconds), we did pain testing (not as bad as it sounds), strength testing (turns out I'm not that strong...big surprise), pulmonary function testing (the exhausting part was when they made me hyperventilate intentionally), a couple of other random tests (like measuring my nasal passages), and had blood drawn. All this took all day and went into the evening.
Somewhere in between tests, they let me sleep for about an hour and a half because the testing was so exhausting.
Tomorrow is the cheek swab, lumbar puncture, and urine collection period, and Friday involves more blood tests. We'll be released around noon on Friday.
And believe it or not, the hospital food I've had so far (lunch and dinner) has been great! Well, except for the green jello, which I found to be questionable.
I haven't felt nervous about the lumbar puncture so far, but Kenny has a lot of anxiety. I am hoping he feels OK to do the procedure tomorrow. The hospital staff has been amazing. The primary researcher and his assistants are fantastic and have a wonderful bedside manner, and the nurses are quite attentive.
I'm really excited to be a part of this study!
That's it for now, I have to sleep.
Today's Activities: research guinea pig (at Georgetown). Today's Most Annoying Symptoms: mild headache, mild nausea, sensitivity to light, exhaustion.
Mood (10 is best): 7
Energy (10 is best): 4 (after my nap)
Physical Discomfort (10 is worst): 3
Monday, November 9, 2009
Headache Hindsight Meltdown
Disclaimer: I had brain fog while writing this post. Please excuse any rambling or incoherent sentences.
It's taken me a little more than a week, but I've mostly processed what happened to me the Sunday I arrived in California. (See The Worst Headache of My Life for background info.)
Immediately after the experience I went into some sort of denial, brushing off the headache as a one-time deal. It was just a really bad migraine. Nothing to worry about, right? However, as things began to sink in, I started to realize that what happened could have had a much more serious outcome.
Not to be dramatic, but having such a severe headache could have been a symptom of all sorts of horrific brain events that I'm not going to go into. All you have to do is google "worst headache of my life" and see all the gruesome possibilities. I am fortunate that my headache turned out not to be as a result of a more serious and more immediate problem. Of course, I did not know that at the time.
In hindsight, I realize that I should have called 911 and gone to the hospital. If my husband or anyone I knew were having such an incapacitating headache and were not able to move or think straight and started vomiting as I did, I would have called an ambulance without hesitation. Unfortunately, I was alone and not thinking well, so I did not make the best choice.
I got all this wonderful hindsight about last week's headache experience yesterday. Unfortunately, it took another migraine to knock sense into me. I started to get another bad headache as I was flying back home from California yesterday. By the time I collected my luggage and got to my car, my head was pounding and I was feeling nauseated. I immediately took medication for my headache.
My head started to feel better after about an hour and the pain never reached an intolerable level, but the experience scared me because it was so similar to the last time -- getting a headache while flying that only got worse after landing.
When I got home to my husband, Kenny, I started crying. All the stress of my experience and being away from home hit me at once. He held my hand and let me cry. I had a meltdown.
My husband insisted that I call the doctor an make an appointment to get checked out. Since it was a Sunday I couldn't call to make an appointment at that time, but Kenny wrote a reminder on a post-it note for me to call. I called today an got an appointment for next Monday.
I fly quite a bit and have not had problems in the past. However, I seem to have developed a headache problem related to flying. I have another flight tomorrow. This time my husband is coming with me. We are traveling to Washington, DC for our participation in the Georgetown CFS study.
I am excited about this trip because it means participating in real CFS research, but I'm nervous about the possibility of getting another major migraine after we land. On the upside, I will be with family. My husband is coming with me, and my parents live in Washington, DC.
Today's Activities: work. Today's Most Annoying Symptoms: headache, exhaustion, pain in right arm.
Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4
It's taken me a little more than a week, but I've mostly processed what happened to me the Sunday I arrived in California. (See The Worst Headache of My Life for background info.)
Immediately after the experience I went into some sort of denial, brushing off the headache as a one-time deal. It was just a really bad migraine. Nothing to worry about, right? However, as things began to sink in, I started to realize that what happened could have had a much more serious outcome.
Not to be dramatic, but having such a severe headache could have been a symptom of all sorts of horrific brain events that I'm not going to go into. All you have to do is google "worst headache of my life" and see all the gruesome possibilities. I am fortunate that my headache turned out not to be as a result of a more serious and more immediate problem. Of course, I did not know that at the time.
In hindsight, I realize that I should have called 911 and gone to the hospital. If my husband or anyone I knew were having such an incapacitating headache and were not able to move or think straight and started vomiting as I did, I would have called an ambulance without hesitation. Unfortunately, I was alone and not thinking well, so I did not make the best choice.
I got all this wonderful hindsight about last week's headache experience yesterday. Unfortunately, it took another migraine to knock sense into me. I started to get another bad headache as I was flying back home from California yesterday. By the time I collected my luggage and got to my car, my head was pounding and I was feeling nauseated. I immediately took medication for my headache.
My head started to feel better after about an hour and the pain never reached an intolerable level, but the experience scared me because it was so similar to the last time -- getting a headache while flying that only got worse after landing.
When I got home to my husband, Kenny, I started crying. All the stress of my experience and being away from home hit me at once. He held my hand and let me cry. I had a meltdown.
My husband insisted that I call the doctor an make an appointment to get checked out. Since it was a Sunday I couldn't call to make an appointment at that time, but Kenny wrote a reminder on a post-it note for me to call. I called today an got an appointment for next Monday.
I fly quite a bit and have not had problems in the past. However, I seem to have developed a headache problem related to flying. I have another flight tomorrow. This time my husband is coming with me. We are traveling to Washington, DC for our participation in the Georgetown CFS study.
I am excited about this trip because it means participating in real CFS research, but I'm nervous about the possibility of getting another major migraine after we land. On the upside, I will be with family. My husband is coming with me, and my parents live in Washington, DC.
Today's Activities: work. Today's Most Annoying Symptoms: headache, exhaustion, pain in right arm.
Mood (10 is best): 6
Energy (10 is best): 3
Physical Discomfort (10 is worst): 4
Friday, November 6, 2009
Dipping a Toe in the Alternative Medicine Waters (Part I)
My journey down the path of alternative medicine began due to the influence of my current doctor. She is an Internal Medicine doctor who treats many patients with HIV/AIDS or CFS. I think she is used to dealing with patients who have been marginalized or brushed off by others in the healthcare field. She has an amazing amount of compassion for her patients.
I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.
After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.
I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):
I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.
Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
I first went to her in 2005 when I was 26 years old. I had been too sick to hold a full-time job for a couple of years by that time. At the time my health fluctuated between being completely bedridden and needing assistance to get to the bathroom to being able to leave the house for brief outings.
After doing her due diligence and ruling out other diseases, she diagnosed me with Chronic Fatigue and Immune Dysfunction Syndrome. She immediately started me on Glutathione/ATP injections, which I viewed as alternative medicine and my previous physician called “fringe medicine” and discouraged me from trying it. Needless to say, I left that previous physician for my current doctor.
I saved the original email that I sent to friends and family on the day I received my diagnosis, Thursday, May 19, 2005. Getting a diagnosis was a profound experience for me. Following is the email I sent in 2005 (edited for spelling):
I finally have a diagnosis.Reading this email brings back mixed emotions, including the pain I went through trying to find a doctor who would take me seriously.
It's Chronic Fatigue and Immune Dysfunction Syndrome.
I cried for an hour after I received my blood test results. I have been vindicated. Lyme disease, EBV, lupus, herpes, and many other diseases were ruled out. My thyroid, liver function, red and white blood cells, and all other USUAL things tested in a full blood work-up were within normal limits.
HOWEVER...
My natural killer cells count was 90 (normal is 300-500). My ATP count was 10 (normal is 30). These results combined with my other symptoms, current ailments, and past health history are consistent with other patients with CFIDS. I now have medical evidence that my body is not as healthy or normal as many doctors/nurses have insisted.
The doctor treating me is in Internal Medicine and specializes in treatment of CFIDS and other immune disorders. I found her through the a CFIDS support group and the Co-Cure Good Doctor List (http://www.co-cure.org/index.htm).
After more than six years of my health getting progressively worse, thousands of dollars in medical and prescription bills, and many doubting or ignorant doctors ignoring my insistence that something was wrong, I finally have hope. It took two months to get an appointment with the wonderful doctor who finally diagnosed me, but it was worth it.
The next step is treatment. In addition to paying closer attention to my diet and myriad of vitamins and supplements, I'm going to start receiving weekly Glutathione/ATP injections for six weeks to try to correct my deficiencies. It is a bit on the controversial side, but if it works and I can actually function like a normal human being for an entire day, I couldn’t care less what anyone thinks about the injections. After we see how that goes, we'll reevaluate what to do next.
I am also planning to contact doctors who have treated me in the past few years so that I may send them information about CFIDS, as well as a copy of my medical record and blood tests. I don't want other patients going through what I've been through. The worst feeling in the world is having a doctor not believe or understand you.
Here are a couple of websites to visit to learn more about CFIDS.
http://www.cfids.org/
http://www.cdc.gov/ncidod/diseases/cfs/
Thanks for reading!
Take Care,
Alyson
I credit the Glutathione/ATP injections for allowing my health to improve enough for me to work full-time. I’m no longer on those particular injections because they became too painful to tolerate, but I am on different injections and other supplements…but that’s for another post.
Today's Activities: travel for work. Today's Most Annoying Symptoms: intermittent nausea and vertigo, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
Tuesday, November 3, 2009
A Quick Hello
Thank you for all the support in response to my Headache post.
I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.
I am still processing what happened and will post an update on my next steps when I come up with some.
Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
I just wanted to check in to say hello and let everyone know that I am feeling much better than I was on Sunday when I wrote that entry. I have been feeling headachy since then, but I haven't had any new migraines.
I am still processing what happened and will post an update on my next steps when I come up with some.
Today's Activities: travel for work. Today's Most Annoying Symptoms: headache, intermittent nausea, exhaustion, muscle fatigue, sore muscles.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 4
Sunday, November 1, 2009
The Worst Headache of My Life
Today I had a bit of a scare. Earlier today I became almost completely incapacitated because of a horrendous migraine headache and considered going to the emergency room.
I still can't move around too much without feeling nauseated or having my head pound.
This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.
As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.
My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.
I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.
As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.
All I could think about was the pain.
I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.
Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.
Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.
I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.
I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.
I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.
Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.
I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.
I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.
My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.
The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.
Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6
I still can't move around too much without feeling nauseated or having my head pound.
This morning I flew from Texas to California for work. As usual, I slept for much of the flight. When I woke up as the plane was landing, I had a terrible headache. It got worse every second that passed.
As I stepped off the plane, all I could think about was taking something for the pain. I had one Tylenol and one Motrin left in my bag from my last trip, but I needed something to take it with.
My headache was getting worse so quickly that I didn't think I could make it all the way to baggage claim. I couldn't tolerate light or sound, and I was getting more and more nauseated. Luckily there was a gift shop near the gate, so I went in and purchased a juice and a snack to take my medicine.
I took the medicine immediately. Not wanting to leave my suitcase going around and around the baggage claim unattended, I slowly made my way to the baggage claim area.
As soon as I got my suitcase, I sat in the nearest chair and couldn't move without extreme pain. On a pain scale of 1 to 10 with 10 being extreme pain, I was at a 10. (I have only been at a 10 once before in my life, and that time resulted in a trip to the Emergency Room and a hospital stay.) The headache was so severe that I couldn't think straight.
All I could think about was the pain.
I was hoping the medicine would start working about 30 minutes after I took it. It didn't. I waited another 20 minutes. Still nothing. At that point, I dragged myself to the nearby giftshop and purchased another travel pack of Tylenol and Motrin. I went back to my chair and took one more Tylenol and Motrin. After another 40 minutes, my pain had slightly improved to a 9.
Though I've had migraines before, I've never had one this severe. Every sound felt like a dozen knives stabbing me. I had to cover my ears a few times as noisy people went by. I kept my eyes closed with sunglass on because the light was painful as well. I felt as if my head would explode. I was so out of it that at one point I thought the pain might kill me.
Sitting in the same chair at the airport for about an hour and a half with little relief from the extreme pain, I started to feel a little scared and alone. I also really wanted to get to my hotel so that I could lie down on a bed.
I ended up making a deal with myself. I would go to the hotel and lie down. If I continued to feel as bad, I would call an ambulance.
I made my way to the rental car shuttle bus and got on. I was the only passenger. As soon as we started moving, my pain went back up to a 10 and an extreme wave of nausea rolled over me. I knew I was going to vomit, but I couldn't open my mouth to tell the bus driver to stop.
I desperately started digging through my bag and found a small zip lock bag with some of my medicine in it. I dumped out the contents of the zip lock into my bag and proceeded to throw up in the zip lock uncontrollably. As far as I could tell, the bus driver didn't even notice. I sealed the zip lock just as we arrived at the rental car facility. As soon as I got off the bus, I tossed the contents into the nearest trash can.
Coca Cola sometimes helps settle my stomach when I'm nauseated, so I purchased one from the machine that was in the facility. I was obviously not well enough to hop in a car and drive, so I sat down in a chair while I sipped on my drink. The pain was at a 10. I contemplated asking someone to help me get an ambulance. I still couldn't think straight, but I knew I wanted to lie down on the bed in my hotel room.
I don't remember how much time passed before I got the strength to get up to find my rental car, but the pain had improved a bit to an 8. I think it must have been the combination of two Extra Strength Tylenol, two Motrin, and the caffeine in the Coke that was helping my headache.
I finally made it to my car and eventually got to the hotel. I was on the bed as soon as I entered the room.
My incapacitating headache lasted nearly four hours before I started to feel human again. My head still hurts a great deal, but it's not nearly as bad as it was earlier today. I would rate it at about a 6 at this time.
The worst part about all of this is that I am away from home traveling on business alone. I will not be home until Sunday, so I really hope I don't get another severe headache this week. Of course I'll be telling my doctor about this incident as soon as I get the chance.
Today's Activities: travel for work. Today's Most Annoying Symptoms: severe migraine, nausea, exhaustion, muscle fatigue, general weakness.
Mood (10 is best): 5
Energy (10 is best): 2
Physical Discomfort (10 is worst): 10 earlier today, currently 6
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