JuneFlower

I am trying gluten free now but just started. How long did you try it? I've heard 3 months is the minimum. June

it could also be something you are Not eating when you consume sushi. Like gluten maybe.

well my daughter gets abdominal pain when her blood pressure is normal (so I am assuming no blood pooling) and also when her pressure is low ( issue some pooling). So I don't think it is related to pooling necessarily. But who knows. June

yogini- yeah we took her off of all her meds except the necessary cardiac stuff.

MakeMeErised- weird question…Have they tested you for poisons?

Thanks everyone, Rachael, So my daughter has POTS for sure but also very low blood pressure. Sometimes she passes out. That is technically not a symptom of POTS. So I am still searching for answers. But even when her pressure and pulse are ok, she still very ill. I guess it is not really an explanation of the symptoms. I wonder if it is auto-immune. If so, what is the treatment? How do they know? MakeMeErised- seizures are scary. I hope the neurologist gets to the bottom of that. I didn't know that a high pulse could cause seizures. June

yeah thanks everyone. It doesn't seem to correlate with symptoms. Her pulse is 100 or so or less now with all the meds she is on. It's still high but acceptable according to the cardiologist. She is seeing a neurogastroenterologist soon. So hopefully they will have another take on things. It's just there was one time where she felt awful and I took her b/p and it was non existent. I guess sometimes it is connected. June

i thought 101 or higher was a fever? Unless someone has had surgery recently or something. Just curious

thanks everyone. Ok I thought this might be true. I kept hoping I would find a direct correlation. Then that would mean, once her pressure got better, she would get better. But no…. June

So I read somewhere that the good or bad blood pressure actually does not correlate with how badly people with POTS and dysautonomia feel. Many people still experience migraines, fatigues, abdominal pain and severe nausea and insomnia when their vitals are ok. Does anyone know why? Does anyone else have this? How do I know all those bad symptoms are POTS related? June

I just want to say I feel exactly as you do. You expressed my thoughts exactly. I am taking my daughter to a POTS specialist and am very afraid they will just say, "Yup, you have dysautonomia. Go home". I just keep hoping I am wrong. Will let you know after May 6th! Good luck! June

My daughter is on Midodrine and Nadolol. Her blood pressure numbers are improved but she still has migraines, abdominal pain, nausea, fatigue, prostration etc. We are going to a specialist and hoping for more answers. (not hopeful). June

Tachy- I think you described my concerns accurately when you said..:if perhaps someone has something else etc.." That is just it. We don't know. And any responsible doctor would take high blood pressure seriously. There are many quacks out there. Also there is such thing as white coat hypertension or high blood pressure caused by stress. It is somewhat easy to spot. (after all other avenues are explored). And I could see a dr not treating that. Yes I doubt many people here have strokes. We seem to be on the young side. But I see other issues from high blood pressure. It is not benign.

well i am only going by professional and personal experience. I see a lot of high blood pressure in my work and we don't blow it off. You are probably right that a one time spike for a short time is not harmful. However a prolonged high pressure is very dangerous. In my opinion. Better safe than sorry. Blondie- if you are still walking and talking, most likely you did not have a stroke of course in my opinion. It's usually fairly obvious with a neurological exam. They can do brain scans as well. I doubt you would have a stroke from one high B/P spike. But obviously I would follow this B/P to make sure it goes down and stays down. kJay- what any individual's acceptable blood pressure levels are will vary and what may be ok for you may not be ok for someone else. I would be hesitant to say anything conclusive about another persons health. June

Sorry about typos in last post. Doh! Anyway. Yeah my daughter sometimes even looks bad when she says she is fine! Yesterday was a great day for her but she looked pretty tired with black circles. Oh well. Maybe she needs more catch up sleep. June

that's good. I suppose if it never happens again, it might have been a fluke. But I would keep an eye on it. And I generally would be uncomfortable without a medical follow up. June

I just asked b/c it is not routinely offered where I live in my age group. Most people my age had chicken pox so we will be vulnerable to getting shingles. It's great they have a vaccine if it works! June I've seen Shingles close up and no, I would not want that either.

Blondie- In my opinion- you should be checked at an urgent care clinic as soon as possible or your doctor. Or an ER. That blood pressure is dangerously high and can and frequently does cause blurred vision. It can also cause a stroke. The fact that it fluctuated does not mean that it is okay. I hope all goes well and they can monitor it and treat this problem for you. June

Well good news- after a threat to cx vacation, she suddenly was better and did all her homework and went to school all day. She also remains healthy this afternoon and happy. So maybe it was good for her to go. I feel like she really has two issues that have equal importance. She has depression and anxiety caused by chronic illness. And she has the illness. But I don't feel the medical doctors or other ppl are really helping with the anxiety. So we need ppl trained in that. June

Christy- yes I understand. The school won't give my daughter a tutor. Currently we have retained a lawyer to assert her rights. June

Christy- thank you. I am sorry for your struggle. I am afraid of the same thing happening with my daughter. I don't want her to stay home or do online or home schooling. She cannot complete the work required for an unmodified online high school. As it is she has a 504 and we are trying to get an IEP. At least then, they give her less work. I cannot home school her. So I am really focusing on getting her back to health. We keep hearing from health professionals that kids with cancer on chemo still go to school. So my daughter should be able to manage it too. I don't know what to think b/c often she refuses and says she is sick. I just don't know. June

Katie, Your daughter sounds very similar to mine. She has no trouble catching up when she does attend school but she is only in 8th grade. Also she does go online but she doesn't talk to her friends through email or online at all. She is isolating. There is no trouble with gossip that I am aware of. She just is afraid for some reason and also claims illness almost every day. Its hard to know when it is anxiety and when it is true sickness. She has almost agreed to go to the day treatment program. We'll see. June

I don't know about the chest aching. I would get that checked out. But the rest sounds like an aura and migraine.in my opinion, very common. feel better. June

I don't think she needs physical rehab. She is currently not allowed to do any exercise due to her low weight issues. Also she never had a problem with physical therapy. She has school anxiety and school refusal and isn't sleeping or socializing anymore. It s more of a mental problem brought on by a physical problem. thanks, June

So my daughter is no longer functioning. She has severe insomnia (doesn't fall asleep until 6 or 7am). She is isolating from friends. She refuses to try to go to school even for 1 class on the days when she feels so so. The doctors have said she needs to go if isn't feeling horrible. But I can't get her to go at all. She has missed school all year so far except for 2 weeks. I know sometimes she is truly too sick but other days she could make it through one class. That is all I ask. She is unwilling to help herself. And I think it is because she is depressed. Btw-most of her symptoms go away on the weekend and come roaring back on Monday morning. I'm not saying she doesn't have POTS but I am saying it appears to flare with school and she won't acknowledge this and work on it. So I want her to go to a day program for therapy. They have school at this thing. I would prefer an inpatient situation but they won't take her there unless she is a danger to herself. She actually said she might consider it yesterday. But I am very worried I won't be able to get her to go each day just like school. Has anyone gotten to this point where they don't function but it is stress related? Thanks, June