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jordan6000

Seasonal Symptoms?

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Hi! I'm real new here. I've learned so much reading your posts and am grateful for the education. My son (17) was recently diagnosed with POTS in November 2008. He has been sick for the last 6 years, and unable to attend school for the last 4 years.

He always gets an improvement in his symptoms starting in the late spring , feels better in the summer until October. At that time he takes a turn for the worse, with his symptoms greatly increased.

Has anyone had experience with a seemingy cyclical pattern to POTS?

I so apreciate your help.

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Welcome to the forums!

Have you looked into a vitamin D deficiency?

I always had a bad time from January to March (crossing my fingers now that I can keep working) to the point where I had to take off semesters from school because I was so not functional. When they tested my Vitamin D, it was through the floor. He may be feeling better in the summer because he is getting more sun.

On supplements, it's amazing how much the pain in my legs went away, and the POTS seems to be (knock on virtual wood) calming down. Vitamin D deficiency seems to be really common in people with POTS.

Good luck to you and your son.

Sara

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Hi. Welcome to the forum. I am 19 and have had POTS since I was 16. Almost every year I start to feel better in late spring and feel pretty well until late summer. Usually after July I start to crash.

Candace

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I seem to feel worse in cold winters. You think it'd be the heat - on hot 90+ days I don't feel great, but I've noticed winters when it gets below 30 (and especially below 10), I get very bad symptoms (tachy, dizziness, fatigue, etc).

I wonder if it has something to do with my body trying to stay warm AND regulate. It's just too much for it. In the warmer temps (50s - 89 or so) my body doesn't feel like it has to fight as much to stay at a certain temperature.

I don't know what else would explain why I'm worse in the winter. I thought I'd be better in the winter, too. Nope. Just have to stay really hydrated in the summer to improve blood flow, but that doesn't even help in the cold, cold days.

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Welcome davidsmom!

Ever since I first became ill, I have had more trouble with symptoms in late fall and early winter. It's a pattern that we've come to expect and so we take extra measures to try to minimize the impact.

The cold plays a significant part in it for me; I end up using precious energy to stay warm. On warmer winter days, I have less trouble with fatigue. I've taken to buying some cashmere clothes when I can get them on big sales; they're very warm, but not nearly as heavy and tiring to wear as other wools or lots of layers. ;)

Light issues seems to be part of the exacerbation as well. When I was homebound, I found that using a light box in the winter (like many people with SAD use) helped me be a little more productive earlier in the morning (e.g. could do some reading/studying, etc.). As my health has gradually improved enough to allow me out of the house to get natural sunlight, I have not needed to use the light box. We also changed many of our light bulbs to full-spectrum light bulbs (e.g. GE Reveal bulbs), which made the quality of light indoors much more pleasant, especially on overcast days.

It's also very easy for me to accidentally overexert myself in the winter, as friends come back from college to visit me on their breaks and family members come to celebrate a string of holidays with us (Thanksgiving, Christmas, New Years). And, of course, if I catch one cold or virus, recovery is a matter of weeks rather than days. :(

I've also noticed a change in sleep patterns in the winter time. Even though this winter has been by far the best for me since I first began having CFS/POTS symptoms (was actually able to start college part-time in the fall & avoided any major health crises!), I did have a sudden, inexplicable resurgance of sleep troubles in the late fall. This seems to happen every fall. As with past years, I went back to taking melatonin at night and after about 2 weeks, I was able to sleep without needing to take any.

As a said before, more trouble with symptoms in the winter is definitely a pattern that we've noticed, so we work around it. I'm extra careful to protect myself from overexertion and viral attacks, I spend as much time near sunny windows as I can, try to get out each day get some sun, and don't get angry at myself for not being as productive as I am in the spring & summer. When I need more sleep, I sleep in. If my brain can only read for 10-15 minutes at a time, I read for that long and then switch to listening to music, watching a documentary, looking at pictures in a book, or whatever else I can manage. If I make a list of things I want to accomplish on a certain wintery day, I anticipate that I will only be able to complete 1/4 to 1/2 of the items on the list; if I can do more than that, I celebrate! :D

I'm glad that you were able to finally get a diagnosis--it's so hard to be so sick for so long and not really have any leads to follow. If you want to PM me with questions or to chat (with me or my parents), please feel free. We'd love to help if we can!

Welcome again!

Angela

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davidsmom,

The pattern you described is exactly the pattern my 16 year old son has followed for the past 18 months. Stricken in the fall, sick all winter, slowly feeling better in the spring, much better in the summer, total relapse in the fall. I don't understand it at all. Of course, some people think that it's psychological...too much stress about school, or something like that. I'm sure there's a better explanation than that!

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davidsmom,

I would love to know how you're dealing with your son's education. My son missed most of his sophomore year of high school, and now is missing a lot of his junior year. It will take at least an extra year of high school to graduate, probably more. I don't see how home schooling can work for him since he feels so sick much of the time. What is your son doing about school?

Thanks.

Lenna

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So, if someone has a vitamin D deficiency, does taking supplements help, or is it more complicated than that? When a person has a vitamin B deficiency, they sometimes need injections because their bodies aren't absorbing B. It doesn't work that way with D, does it?

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Hi evryone--sorry i am trying to navigate through here....as I was replying to someones message it posted with their message and my name, so whoever you are I am really sorry. I was going to ask about your answer to David's mom. I think i will make sure this posts properly :D

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davidsmom,

I would love to know how you're dealing with your son's education. My son missed most of his sophomore year of high school, and now is missing a lot of his junior year. It will take at least an extra year of high school to graduate, probably more. I don't see how home schooling can work for him since he feels so sick much of the time. What is your son doing about school?

Thanks.

Lenna

My son is esentially missing all four years of high school. He was able to physically attend the first three weeks of school each year, at which point his health rapidly went downhill and he couldn't attend anymore. Fortunately he is eligible for Homebound services where the school sends teachers out for the 4 core courses for 2.5 hours per week per course. He took his language requirements on his own for 2 years on-line through Brigham Young University and transferred the credits to his high school. For the 2 year Phys. Ed requirement, we worked with the school to allow him to take both years of PE as correspondence courses, with the teacher giving him writing assignments on health, fitness, and various sports. He took the required driver's ed portion on-line through the state. He took a Psych elective through the district's on-line high school and transferred the credit to his high school. The remaining 2 electives he is doing this year as "correspondence" courses at his school. The teachers assign him work and he does it and turns it in via e-mail. These teachers are doing this out of the goodness of their hearts; there is no requirement that they support him as a homebound student, but they're doing it anyway. He will graduate on schedule this year with a standard diploma. He was accepted early decision at the college he wanted for this fall. His disabilty didn't deter them. He is an A student and with very good SAT scores, so that might have helped.

I know what you mean about being too sick for home classes. Sometimes he can't do the whole 2.5 hours. Fortunately we've had some great teachers who have worked in the dark through migraines, taken frequent breaks when he had difficulty concentrating, read material to him while he laid there with his eyes closed because the room was spinning, filled in worksheets/tests with his answers when he was too sick to sit up and write, brought videos he could look at when he felt better-- whatever it took. I'm eternally grateful to the school and his teachers, both the classroom teachers that have supported him and the homebound teachers that stuck with him in very difficult circumstances. Also, my son deserves a lot of credit. He was very determined to graduate on schedule even though there were times he felt so bad that I don't know how he managed to do the work.

I'm fortunate to live in a premium school district that is committed to provide special services for those that need it. Even so I can't say it was easy to get him through high school. Next up is college with a whole new set of challenges.

I wish you and your son the best.

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hey Angela i read your signature:

Progression of Illness

Symptoms began in April 2004 while I was studying ballet in NYC.

Initial POTS diagnosis in Sept. 2004 @ UPenn

Diagnosed with POTS & Chronic Fatigue Syndrome in April 2005 by Dr. Low @ Mayo MN

Out of interest what is the difference between POTS and Chronic Fatigue?

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Winter is a lot more difficult for me. Cold weather is terrible. I get too cold and just can't warm up; I'll shiver for hours sometimes. I use a sunlamp, mostly for depression, but overall it seems to help. I do not have a vitamin D deficiency. I take a calcium supplement with vit D and my recent blood work showed completely normal levels, so I know that's not the issue. I really think the weather is a big part of it. Also, winter in general has always made me feel 'blah' and sucked my motivation, which doesn't help. Compression hose help keep my energy up. Some people can't tolerate caffeine at all, but I find that a cup of coffee in the morning helps a ton.

I'm sure stress is a part of it as summers are almost always better. However, usually fall and spring in school are not so bad health-wise for me, and winter is terrible. I always make sure to take fewer credits winter quarter. (We have fall, winter, and spring quarters at my college so this is easy to do.)

Good luck with your son. My brother is in high school (with POTS) and struggling a lot as well.

Meg

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I feel the best in the winter, and worse in the summer. I would love to move to Florida, but because of my POTS and their warm weather year around, I think my symptoms would be worse down there. I think I would feel the best somewhere cold year around. Also, I am hot, all the time, it's driving me crazy. I would open my window sometimes if I thought no one would complain.

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