Ouch!!! And I just thought there would be no side effects! I have now had three infusions of the drug. After Monday's therapy I felt pretty good and actually felt a very slight improvement in pain and stiffness Tuesday morning.
I get pre medicated with antihistamine (atarax in my case since I am allergic to benedryl) and tylenol for potential headaches. Didn't have any problems Monday.
After Tuesday's infusion where I only took 1 Tylenol and half an atarax, I felt really wasted and slept most of the afternoon. As the evening crept on, I started feeling a bit nauseated and started getting a headache, the typical sinus kind with a little tension thrown in. Didn't think much of it and took a Tylenol before bed. During the night I woke up feeling a bit sick to my stomach and head-achy and didn't like it much.
Wednesday, I just felt awful and crawled into the infusion room almost in tears!Samantha, my infusion nurse took good care of me! She gave me Zofran for nausea, ativan for the aggravation, and toredol for the headache. I felt better in 5 minutes and had a nice infusion.
A lady across the room from me heard what all I was moaning about and said, "IVIG flu!" I guess these are normal side effects of the therapy. Everyone there promised the headaches and agony would go away in a few days.
Everything went well until about 9 PM when the headache crept in again. I took a Tylenol before bed but woke up at 4 with the worst headache I have ever had. Even worse than the one I got when i fell off my bike head first into the stone wall on the road near my home going about 25 mph after heading down the hill after the railroad bridge. ugh. Got up and took an Advil and put an ice pack on my head and it was better when I got up at 7 AM. Took another Advil for good measure with my yogurt at breakfast and its under control today. Luckily, I didn't have any nausea.
One more day of IViG this month, then another round mid December. I am looking forward to the benefits and hope they kick in soon, like maybe Saturday? Sure would like to ride my Motorcycle around the hood again. Weather permitting.
Showing posts with label motorcycle. Show all posts
Showing posts with label motorcycle. Show all posts
Thursday, November 19, 2009
Wednesday, October 28, 2009
Ramblings on Provigil...
Thanks for your support and email, my friends and family!
I am pretty isolated since i cannot drive at the moment. Ugh. Actually I have been home bound for a year now, and don't feel great in social situations since I have such low energy. Guests are mental overload. I did take some MS speed today ie Provigil, 50 mg, so I am awake and have half a brain.
I do know a lot, if not all, of my problem is stress/thyroid related. The high cortisol levels from steroids causes high levels of Reverse T3 and my ratio of t3/rt3 is around 6 and it should be 20 or higher. This means I am NOT getting active thyroid to my cells (T3) so my body is sort of shut down.
Hence the pain, fatigue, anxiety and stress, digestive issues. It loops. A cyclical problem that feeds on itself. I was working my way up on Cytomel (T3) to like 75 mcg a day which is what it takes to clear the RT3 from the cell receptors when they put me back on the danged steroids. Ugh I am back where I started on repairing my thyroid and have to start all over again.
Think of T3 as being nature's speed, or human gasoline. If I was typically hypothyroid, I would have a high TSH and need armour or other natural thyroid with both t4, the raw material, and t3 the active hormone to get un-hypo. I am fine TSH wise, have enough T4, but it is converting to the inactive form of Rt3 in my body, jamming up the cell receptors. It's like a clogged carburetor. Only therapy with straight T3 (and there is no natural alternative for this) over a long enough time, will clear the Rt3 from my cells. Like cleaning the carb with high grade carb cleaner. It sometimes takes more than onecleaning to get the gunk out. I know. I had an old motorcycle that had a gummed up carb and fuel system.
Not many endocrinologists even git this concept at all. They want to give you T4 (Synthroid) or Natural Thyroid like Armour, if you get lucky and can convince them to, just to get your test ranges in range. Then they say you are just fine and it cannot be your thyroid. Wrong!!!!!! We are NOT test ranges, we are people with problems. Thyroid is the key to metabolic problems.
Endos like to treat diabetics because there is a lot of money in diabetes and diabetes drugs, but no money in thyroid, because, after all, the drugs are generic now and are cheap as heck.
If a new doctor wanted to really do some good in the world, they would go rogue and be a sensitive, educated, savvy, thyroid guy or gal, listen to their patients and how they feel, blow off their artificial lab test ranges and ignore the TSH. And then really help people get well. They need to run saliva cortisol tests and T3/RT3 and do the ratios. There are people on the internet who GET it and help more folks get well than all the Endos in the world.
Fibromyalgia, as I have read, is mostly a thyroid problem. I agree, cause when I was doing well, thyroid wise, my fibro was almost a non issue. My guess is MS has a thyroid connection. Why because Joesph Wouk, LDN taker, writer of Google! LDN, son of Herman Wouk (Winds of War and War and Remembrance) has PPMS and uses LDN but added Dexedrine or other speed to his protocol and totally got well. Hmmmm. Makes one think that if speed helps MS then why would not natural speed, T3, Cytomel, help in the same fashion. My suspicion is that somehow he turned his body back on with the speed and keeps it there with the endorphins from the LDN. Hmmm. More research is needed here for sure.
I have to pursue the MS (Like that "Mess" by the way!) drugs and see where they lead me because I definitely have autoimmune issues, but I will pursue the thyroid on my own and either whip this bad pony, or die trying.
When I was in the hospital on Sunday, they were all so impressed that my pulse was 49 and my blood pressure 108/ 70 and my temp was below 98. I was like, good godfrey, that makes me half danged dead. They said well you must athletic. I said, well, I have MS, am a light smoker and can barely walk...My pulse should be around 90 and my BP high as a kite!
Nobody gets it. It's all thyroid related. My idle is really tuned too low The low body temperature shows this. Sheesh I run 97.6 when I need to run 98.4-6. Enzyme functions in the human body are designed to be optimized at 98.6. A degree below and stuff isn't happening in the body! And stuff ain't happening in my body!
I am pretty isolated since i cannot drive at the moment. Ugh. Actually I have been home bound for a year now, and don't feel great in social situations since I have such low energy. Guests are mental overload. I did take some MS speed today ie Provigil, 50 mg, so I am awake and have half a brain.
I do know a lot, if not all, of my problem is stress/thyroid related. The high cortisol levels from steroids causes high levels of Reverse T3 and my ratio of t3/rt3 is around 6 and it should be 20 or higher. This means I am NOT getting active thyroid to my cells (T3) so my body is sort of shut down.
Hence the pain, fatigue, anxiety and stress, digestive issues. It loops. A cyclical problem that feeds on itself. I was working my way up on Cytomel (T3) to like 75 mcg a day which is what it takes to clear the RT3 from the cell receptors when they put me back on the danged steroids. Ugh I am back where I started on repairing my thyroid and have to start all over again.
Think of T3 as being nature's speed, or human gasoline. If I was typically hypothyroid, I would have a high TSH and need armour or other natural thyroid with both t4, the raw material, and t3 the active hormone to get un-hypo. I am fine TSH wise, have enough T4, but it is converting to the inactive form of Rt3 in my body, jamming up the cell receptors. It's like a clogged carburetor. Only therapy with straight T3 (and there is no natural alternative for this) over a long enough time, will clear the Rt3 from my cells. Like cleaning the carb with high grade carb cleaner. It sometimes takes more than onecleaning to get the gunk out. I know. I had an old motorcycle that had a gummed up carb and fuel system.
Not many endocrinologists even git this concept at all. They want to give you T4 (Synthroid) or Natural Thyroid like Armour, if you get lucky and can convince them to, just to get your test ranges in range. Then they say you are just fine and it cannot be your thyroid. Wrong!!!!!! We are NOT test ranges, we are people with problems. Thyroid is the key to metabolic problems.
Endos like to treat diabetics because there is a lot of money in diabetes and diabetes drugs, but no money in thyroid, because, after all, the drugs are generic now and are cheap as heck.
If a new doctor wanted to really do some good in the world, they would go rogue and be a sensitive, educated, savvy, thyroid guy or gal, listen to their patients and how they feel, blow off their artificial lab test ranges and ignore the TSH. And then really help people get well. They need to run saliva cortisol tests and T3/RT3 and do the ratios. There are people on the internet who GET it and help more folks get well than all the Endos in the world.
Fibromyalgia, as I have read, is mostly a thyroid problem. I agree, cause when I was doing well, thyroid wise, my fibro was almost a non issue. My guess is MS has a thyroid connection. Why because Joesph Wouk, LDN taker, writer of Google! LDN, son of Herman Wouk (Winds of War and War and Remembrance) has PPMS and uses LDN but added Dexedrine or other speed to his protocol and totally got well. Hmmmm. Makes one think that if speed helps MS then why would not natural speed, T3, Cytomel, help in the same fashion. My suspicion is that somehow he turned his body back on with the speed and keeps it there with the endorphins from the LDN. Hmmm. More research is needed here for sure.
I have to pursue the MS (Like that "Mess" by the way!) drugs and see where they lead me because I definitely have autoimmune issues, but I will pursue the thyroid on my own and either whip this bad pony, or die trying.
When I was in the hospital on Sunday, they were all so impressed that my pulse was 49 and my blood pressure 108/ 70 and my temp was below 98. I was like, good godfrey, that makes me half danged dead. They said well you must athletic. I said, well, I have MS, am a light smoker and can barely walk...My pulse should be around 90 and my BP high as a kite!
Nobody gets it. It's all thyroid related. My idle is really tuned too low The low body temperature shows this. Sheesh I run 97.6 when I need to run 98.4-6. Enzyme functions in the human body are designed to be optimized at 98.6. A degree below and stuff isn't happening in the body! And stuff ain't happening in my body!
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