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Time Between Flares?


JWPotsMom
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So far, I have not found any rhyme or reason to how long my flares last and when they come and go. I find this the hardest part of having this syndrome as there is no way to plan ahead and I have found that surrendering to a go with it attitude has served me best. Hope he feels better soon!

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After ten years of experience it went like this for me:

subtle symptoms 2001. sudden severe symptoms Oct 2003 - gradual improvement to Dec 2004. Functional but never perfect Dec 2004 to Oct 2005 - minor crash to Feb 2006. Great Feb 2006 to Oct 2008. Terrible Oct 2008 to June 2009 gradual improvement June 2009 to Dec 2010. Ok Dec 2010 to Dec 2011.

Up and down like a roller coaster and with Ankylosing Flare ups in between, worse in the periods where POTS is ok.

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My son is symptomatic daily, for 3 years now. He is never symptom free, but sometimes he is just more functional. After a 3 week stay at the Mayo in October, we thought he would be able to make it back to school, which he did for 3 days and then crashed horribly. So not back to school, 3 years in February out of school, with the exception of 6 weeks last year. Doctor after doctor tells us he is very complicated.

I read on here about flares, but he has been pretty much non-stop flare for quite a long time. It is basically just this horrible nausea. Many symptoms have come and gone but the nausea is a constant.

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I am either really good for a long time or really bad. I was great POTS wise for 2 years (able to work, drive, go to movies,ect as long as I took care of myself and did things in moderation) and now I dont drive or really leave the house and this has been going on for almost 2 years now. Hoping that I will get really great again.

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When we took my daughter to see Dr. Grubb she was 10 years old and had been diagnosed by her pediatric neurologist 6 months prior to the appointment. Everything Dr. Grubb predicted came true. He said my daughter would get worse before she got better and that she would not start to improve until her growth spurt slowed. At that time my daughter was approximately 5'2". Three years later she reached 5'8" and her POTS flares began to improve and she returned to school occasionally.

It has been four years since she saw Dr. Grubb. She is now 5'9" and much more stable. On the advice of Dr. Grubb, she is on birth control - she only has her periods quarterly because her POTS flares are much worse during her periods. She is still on all of her POTS meds.

I know your son is receiving great care, but I have many friends who have taken their child to another doctor/institution for a second opinion. I have had many friends who have sought a second opinion at doctors listed on the dinet site. Sometimes it just takes a "fresh set of eyes" to look at a case.

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