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Does Stress Play A Role?


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Yes, negative and positive emotions can play a role. My son could nose dive if he was excited about something (ie..Christmas, joking around with friends,etc.) and if he was stressed or in a bad mood, same thing. For him, there used to be a fine line that he couldn't deviate from one way or the other.

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This affects Tyler. He is hurting so much more than normal and has had a horrible day with school work. Anything that puts stress on the body makes POTS worse. Tyler's pain levels have came up this last weekend and I'm wondering if his body is fighting some type of virus. POTS is pretty much like a rollar coaster. If you can figure out what triggers your daughter's POTS, that will help some. If it's something underlying, like the immune system, you will need the help of another doctor. Don't give up June! POTS can have so many triggers. You just have to observe and keep a journal. Could she have food allergies that might be triggering the headache or stomach problems?

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I was just wondering if the fact that she is at school and that in a regulated invironment when we are expected to sit, stand, play etc at certain times her possible inability to apply 'self-management' of some pots symptoms - things we often don't even know we do at the beginning -- might be a reason for her doing badly on school days.

For example, sitting upright on a chair at a desk for more than an hour or two would do me in. When I was at university I'd be sitting with my feet folded up underneath me (semi-lotus style), or trying to find a seat against a wall where I could sort of lean to one side and rest my head on the wall, or even putting my head down on the desk -- anyway that I could manage to sort of get myself as supine as possible, except for my head which I need to keep elevated at least a bit. This was long before I was diagnosed with pots -- I felt like people thought I was strange but I just couldn't sit upright for too long. And being able to rest on the grass of the quadrangle between classes was a relief - Virtually lying down (only my head elevated on my hand by an arm propped up underneath me).

None of these things made it that much easier to get through classes -- it was nearly always a struggle, some days better than others -- but they helped a bit. On weekends I just naturally fell into doing things when and how I could and then having a rest afterwards. eg. clean the bathroom and then lie down and watch tv before feeling up to putting on the laundry. I was more in control of managing my body because I wasn't expected to do the things that 'average' people are able/expected to do at anytime. I worked within my own variable timetable and speed. If someone had demanded I'd work to theirs I would have not been able to do it. This was long, long, long before diagnosis with pots. That diagnosis only came about a decade later when I'd got to the stage -- for some time -- that I couldn't work out how to manage just about every physical activity I needed to do but found myself unable to do.

Not sure if I've made myself clear enough -- fog and anxiety are having a field day with me lately making it hard for me to write/talk coherently.

blue

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Stress can definitely contribute to increase in symptoms and flares. I really believe long-term stress is what tipped the balance for me with this autoimmune disease. If stress releases the "stress hormones" (adrenaline, cortisol, etc...) then, continuous dumping of these hormones into the body eventually takes a toll. I have lived 30+ years in incredible stressful situations related to my job. If I had it all to do over again, I would step back more, learn to relax and "smell the roses" rather than drive myself and my health into the ground.

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Blue- Well I understand what you are saying and I'm sure some of that could apply to my daughter. But she gets sick before she goes to school. She refuses to go 95% of the time. She won't even give it a chance.

Soskis- Yes hormones could play into it a bit. But she is not being pressured and has about 1/20th the workload of her friends. Not sure how it could be stressful unless it is in her head. She is in therapy and so far no progress but I have hope for that only.

June

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Do you think your daughter might be embarrassed and scared?

I had a flare at work today and had to come home early and even though I know it's not actually a character flaw, there's still some part of me that feels ashamed telling my coworkers I can't function because I'm tired/lightheaded/etc. On some level I sort of feel like a failure and a bit of a weirdo. And I can imagine that as a teenager, that sense of being "different" would be a hundred times worse.

It's also possible she may be scared of what happens outside of the safety of home. Before I got better at reading my symptoms, I had a number of instances where I started crashing in public and it was pretty terrifying. Sort of like what blue mentions above..if she has a routine for how to make herself feel better when she's home, and she can't do that at school, and may have to face having a crash in the middle of class, that's pretty scary.

You've mentioned that your daughter is seeing a therapist, which is wonderful, but does she also feel like she has anyone "safe" she can talk to at school if she starts feeling bad, like a teacher or anything? If she tries to go for a partial day and starts feeling bad, is she able to come home? Just some things to think about!

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Hi June

What about setting a goal for her to just go to one class a day, so that she can learn how to manage her symptoms at school? If Tyler ever goes back to public school, this is how I would start him back because of the stress level? If she wants to stay in a public school, she has to learn to manage the symptoms even when she is not at her best. I hate to say this but it sounds like this may turn into a tough love situation. She needs her education whether she feels good or not. The kids that have cancer and treatment get their education through public school, a home bound situation or even the hopsital setting. However, some of these kids get so bad that they have to take off a school year and then start back. Tyler was in the hospital for 3 weeks and I had his school books with us. At the rehab hospital a private teacher came in and helped him with lessons. This is a tough situation and I'm sorry that you are going through this. Sending Cyber Hugs. Hang in there.

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no she has no one good at school to help. The nurse is mean and often doesn't let her call me. The guidance counselor is now being adversarial because I requested an IEP. The teachers are generally not understanding and constantly have to be reminded of the 504. You may have the answer lejones 1. Thank you so much. Also I agree she may be scared of feeling bad physically at school. I will talk to her.

Rachel- she won't even go for one class. We tried that. SHe's been given all the speeches about cancer kids already. She still refuses to go to school.

June

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I'm sorry June. It sounds like you are going to have to decide how she gets her education. I'm glad your daughter is seeing someone to help with the mental end of this deal. The brain is a powerful thing to deal with during chronic illness. Just remember she should outgrow POTS according to research and it will not be like this forever.

I don't remember the next doctor you will be going to see but I could recommend Dr. Grubbs in Ohio. Our cardiologist collaborates with him about Tyler. Dr. Grubbs also had a daughter that had POTS. So he is very familar with POTS on a personal level. He has done much research. I could find and post some of his articles if you would like to see them. Hope today is better. Hang in there.

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Dr Chelimsky would be a good fit since your daughter has GI issues.

I think my son has outgrown his POTS, it took 4.5 years, but his MCAS will probably be a life long issue, waxing and waning. He still has temperature regulation issues ,hand tremors, sleep issues and nausea (very, very decreased but still there mildly). He currently functions at about 70 to 75% of his old self and that is as good as the doctors expect it will get. Don't give up hope, I thought it would never happen(getting better) but it did. My fear was he would be bedridden and homebound for his entire life. He is still on medications and I'm not sure if they are keeping the POTS at bay or the MCAS since the medications are prescribed for both.

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Yes Christy- that is what I am thinking. They have neuro and GI and cardiac there at Dr. Chelimsky's hospital.

June

I am glad to hear that your son is so much better. I hope it continues! I don't know about the MCAS but I think my daughter might have something else cause she gets very red and flushed and has chest pain.

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