JuneFlower

Thank you Jackie M. Yes she has been diagnosed with POTS with overlying very low blood pressure. Her cardiologist said if she still isn't well after he gave her some meds, that she should see a POTS specialist. She takes midodrine and nadolol and now she isn't passing out but she still has many other symptoms. At this very moment she feels pretty good. So I feel funny taking her to a specialist that is 2 states away.

June

I would never use a wrist model. (I am a registered nurse for what it is worth). The good old manual ones are the most accurate but hard to do by yourself of course. I would use an automatic arm cuff but take the results with a grain of salt and don't base any changes to your meds or care unless you are seen by the dr.

My daughter had b/p of 60/30 and had no symptoms so go figure.

June

Yes it is, thank you. I almost feel silly taking her to the POTS specialist. But she is always so up and down. I guess I'll keep the appointment and see how she does over the next 3 months.

June

Oops-missed that interaction. My daughter takes nadolol and Motrin with no ill effect but she takes the betablocker for tachycardia , not high blood pressure. I would run it by your doc.

June

So my daughter gained 5.8lb! It's mostly muscle and good stuff too. The nutritionist is happy and no longer worried. I am really thinking the weight loss was from Effexor. We are weaning her off. We have an appt with Dr Boris in a couple months. Maybe she'll get better before then? Just thought is update. Thanks ya'll

June

My daughter started off having severe migraines and was put on Topamax and Trazadone and Effexor. We are getting her off all of them. Trazadone can cause low blood pressure-she still has it now that she is off it. Topamax can cause anorexia as well as effexor. She lost a bunch of weight after being on them quite a while. Now she is almost off everything. The effexor is a slow taper. But she has gained 5lb! We are so happy!

June

I watched half the video by Dr Jeffrey Boris. He seems knowledgeable but I noted he pushes his patients back to school no matter what. I used to be all for that until my daughter B/P was 60/30. Now I want her to take it day by day. Not crazy about forcing her to go to school until she feels better. But the secretary from his office called me. Now we are playing phone tag.

June

Yes I've been to his website and everything. It appears he does research. It isn't clear. I finally decided to email him and ask. We'll see. Thanks,

June

If you mean Dr Julian Stewart (there is more than one I think), I'm not sure if he treats patients or just does research. There isn't much info about his office. But he is very close to us.

June

I think Dr. Stewart is pretty far away….I can't remember where. I'm on the east coast. But I will look him up. Thanks.

June

Hey thanks so much for thinking of that! I will check it out right now.

June

Thanks Chaos, I'll check out your link. They keep changing the cause of migraines. They now think it has to do purely with the neurotransmitters and not the blood vessels. But whatever it is, I definitely get a migraine when the barometric pressure drops and I also got one when I flew in 3 planes yesterday. Interesting about the stroke…Hmm.

June

Krissy21- yes that does explain it. Thank you.

Thanks to everyone who posted on this topic. My daughter went from 95lb to 83. She is 5'3" so that is a very low BMI. But the nutritionist also did extensive testing and found she is just burning her own muscle right now, would have no appetite at this weight and metabolic rate and probably has the beginning of osteoporosis. I am taking her to be weighed tomorrow which is just over a week since her initial appointment. Hopefully she has gained something.

I will look into finding recipes for yummy shakes that I can add calorie dense powder to.I have to hide it cause if she sees a lot of food, she just stops eating and says she is full.

June

My daughter who has POTS seems fine with stairs. But strangely I can't walk up stairs to save my life. My heart races and I'm out if breath after 1 flight . I've never been tested for POTS.

Jube

Interesting. Everyone is different . I wonder if it is the lack of stress on vacation rather than the weather . She has no homework or school.... The minute I ask her about homework she gets a headache or migraine.

June

gjenson-

Thanks . Yeah I can't get my daughter to drink any of those nutrient dense things. She will sometimes have a carnation instant breakfast . It has 2x the protein but that's it .

The nutritionist said she is in bad shape and at risk for cardiac failure etc. we are going back on Monday for weight check. If she hasn't gained, she is going to recommend a program to help her eat. ???? Not sure what that means. She has been eating and is not anorexic. I will talk to the pediatrician if I have to about this.

June

So my daughter was having every symptom in the book. We went away to someplace hot and humid. She had almost no problems. Today she has a stomach ache after a big dinner and nausea a bit. But for a whole week she's been back to her old self. We live in the northeast where we currently have a foot and a half of snow. Has anyone experienced this change?

June

She has a GI dr who is following up with her this week. She has all those symptoms but not all the time.

I don't know about the flight or fight in relation to illness...

Thanks for commenting. June

I wonder what causes the loss of appetite in Dysautonomia. Maybe the circulation in the stomach is disrupted in some way? Thanks for letting me know she's not the only one!

June

Yes that is true but I don't think anyone has been saying anything to her yet. She's only 13. But I can understand what you are saying. Frequent meals have been suggested. We'll see how it goes.

June

Well all I know is dermatological stuff is real hard for even a specialist to diagnose sometimes. Usually they can do a culture to check for certain things. Good luck. I hope he feels better.

June

Not sure how old your son is. But have they ruled out shingles? It often appears on face and scalp. It unusual in young children but not impossible .

June

Yes I have heard from the dr to drink stuff like Gatorade to help with all electrolytes. But truly a 3.4 with a ref of 3.5 on the low end would be considered normal.

June

Welcome to the board. It seems to me that POTS makes the person very exhausted just like CFS. Is it possible you have POTS and not CFS ? Just a thought. And good luck .

June

The only thing she seems to sometimes have is loss of appetite. She was having abdominal pain & vomiting but that's gone.

They are testing her for Addison's in 2 weeks and going back to GI to try to get some answers. Thanks for your input.

June