jjb Posted March 31, 2009 Report Share Posted March 31, 2009 All of my dys symptoms tend to come and go. They have never been constant.The seem to cluster and cycle somewhat ... and there are certain things that can trigger or worsen a cycle.I am wondering if any of you have the same?If so, would you happen to know if there is data that talks about the nature of these "cycles" Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted March 31, 2009 Report Share Posted March 31, 2009 All of my dys symptoms tend to come and go. They have never been constant.The seem to cluster and cycle somewhat ... and there are certain things that can trigger or worsen a cycle.I am wondering if any of you have the same?If so, would you happen to know if there is data that talks about the nature of these "cycles"Hi jjb,I don't know much about you, but what type of cycle have you noticed? There has been a lot of discussion about symptoms changing with the menstrual cycle - if this pertains to you - have you noticed there is a monthly cycle to the symptoms? Otherwise, I can say that in general my symptoms cycle in intensity through the day, with the first half of the day barely tolerable, and then occasional late evenings (usually 9 to 11 pm) where I feel mildly functional. I read some threads on the forum where other people experienced a similar circadian cycle to their symptoms.Have you tried writing down everything that you do, eat, etc. to see if there is a relationship?Best wishes in finding a way to spend more time in the "better" part of the cycle!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
jjb Posted March 31, 2009 Author Report Share Posted March 31, 2009 No correlation w/ menstrual cycles, but certainly with foods. "bad" foods are a common trigger for me. Dopa antagonists are too.When I was younger, I saw more consistent cycling ... as in every 4 months go through several weeks of significant symptoms. Id' have symptoms of pain, high fever, fatigue, ortho intolerance etc. Back then it was blamed on chronic lyme disease. While the LD certain triggered more dys, I don't think I have chronic LD, I think the dys symptoms are related to something else.My daughter has cycles too. Her cycles/clusters have been occurring every two to three weeks. He o2 drops, becomes tachy, flushes .. gets dizzy, and usually has nausea and vomiting.It is trickier with her though as she has dys, EDS, epilepsy & carnitine def. We just don't know what is what with her.Hi jjb,I don't know much about you, but what type of cycle have you noticed? There has been a lot of discussion about symptoms changing with the menstrual cycle - if this pertains to you - have you noticed there is a monthly cycle to the symptoms? Otherwise, I can say that in general my symptoms cycle in intensity through the day, with the first half of the day barely tolerable, and then occasional late evenings (usually 9 to 11 pm) where I feel mildly functional. I read some threads on the forum where other people experienced a similar circadian cycle to their symptoms.Have you tried writing down everything that you do, eat, etc. to see if there is a relationship?Best wishes in finding a way to spend more time in the "better" part of the cycle!~ Broken_Shell Quote Link to comment Share on other sites More sharing options...
lotsicker Posted March 31, 2009 Report Share Posted March 31, 2009 All of my dys symptoms tend to come and go. They have never been constant.The seem to cluster and cycle somewhat ... and there are certain things that can trigger or worsen a cycle.I am wondering if any of you have the same?If so, would you happen to know if there is data that talks about the nature of these "cycles"YES. For me, my first "episode" lasted almost 4 weeks and then I woke up "better" I was only well for about 2 weeks when it hit me again. This time it lasted a week. Then I was fine agian for a couple of weeks. Then again, a terrible week then a good week. The 4th episode was SCARY. I thought I was going to die and it lasted almost 2 months. Then once again, i woke up Jan. 9, all better (kinda) by Feb. 14, I was sick again and have been ever since.So I do have "well" periods of time but, ever during these times I can trigger symptoms with exercise, drinking or if i get a cold. The difference is the symptoms are only temporary. While in my "sick" periods, like most of us, I can't do ANYTHING without symptoms and I am completely disabled. As of yet, there is no pattern like monthly or food triggers...just alcohol. Quote Link to comment Share on other sites More sharing options...
MightyMouse Posted March 31, 2009 Report Share Posted March 31, 2009 I always have some symptoms, but there are definitely bad times when more symptomatic than others. Yes, I do get worse around my menstrual cycle, but I also will always have more symptoms when I have a viral infection like stomach bug, or sinus infection (bacterial), or even during the bad times with my allergies. All of those things put quite an extra load on my body and in reply, I get much more pain, nausea, intolerance of exercise, brain fog, overall exhaustion and need for excessive time to sleep, etc. Quote Link to comment Share on other sites More sharing options...
mjan Posted April 1, 2009 Report Share Posted April 1, 2009 YESSSS it happens in clusters..but of late.. its getting more often and more intense with MORE symptoms now.. but then.. I am old LOLIts NOT KNOWING when that catches me off guard.Jan Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted April 4, 2009 Report Share Posted April 4, 2009 thanfully very much so - I tend to crash after overseas travel, slowly improve then wax and wane. Quote Link to comment Share on other sites More sharing options...
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