usports2

Nope, never heard of those two things. Will have to keep track of this symptom. Thanks for your help!

Fevers...will also keep that in mind.

Now the circulation is definitely something to keep in mind. It has happened but once so not sure if related to POTS or something else. You all are so wonderful!

Nope, no Florinef, but thanks for your insight.

OK, hate to start everyone's morning with this topic, but we really need help. My son seems to be on an every-other-week, excessive bowel movement schedule. One week fine....pooping normal. Next week (like this week), it will start on a Monday and he is having soft BMs for hours each morning. By afternoon, fine again. This will go on for 3-4 days. This morning I gave him some Imodium...I'm at a loss. This is his last week of high school classes (finals next week, graduation on May 29). Stress is adding to this too I'm sure! Last fall we did have motility testing done and he checked out fine. He is drinking a couple small Gatorades a day, along with lots of water. Any ideas?

Rachel, Thanks so much for insight on painful feet & peeling fingers. I am planning on calling Dr. Grubb today for an appt., but need his contact info. Do you have it handy? Thanks! Donna

My son does get very painful feet after exercise. He experiences lots of abdominal pain....if he eats after 8 p.m. Of course, the migraines.

Definitely sounds activity-induced for your son too. Did he find anything to relieve the pain? It eventually does go away for James, but would be great to find another option for more immediate relief.

Thanks all for the input! Yes, I just came across Kawasaki's but he doesn't, thank heavens, fit the profile for that. I will check the link provided too. So wonderful to have this amazing resource for us new POTS families....thanks!!!

The frozen ice bottles are a great idea ~ thanks!

Just wondering if anyone suffers from this issue. The skin on my son's 10 fingertips will all peel at the same time. No pain, just really odd.

My son experiences very painful feet when running. Anyone else have this symptom? Any suggestions to relieve the pain? Thanks!

Good evening everyone! I share the same sadness & frustrations as all of you...my 18 year old was diagnosed just 3 weeks ago after nearly 24 months of being sick & misdiagnosed. Through this time, he has been so scared, and angry, and frustrated, and just about every other emotion you can come up with! When he was feeling most isolated because he wasn't able to go to school, I invited his very close friends in for a visit. Amazing what a little laughter can do! We also sought out the help of a therapist....he really needed to share his emotions ~ particularly the anger ~ with someone other than his dad & I. We are also going to start some biofeedback therapy at the beginning of June. Our son was on some very strong meds during the misdiagnosis time with the goal of disconnecting his gut from his brain ~ yikes! We are lucky enough to have access to a psychologist at University Hospitals in Cleveland that is a holistic practitioner that has a special interest in teens with POTS. He will be working with our son on some strategies to pull the brain & body back together.

Evening All! We are new to these forums...our 18 year old was just diagnosed with POTS 3 weeks ago after 21 months of doctors, tests, hospitalizations, and multiple misdiagnosis. I have run across the name of a Dr. Grubb on these forums....with mention he is in Ohio. Can someone tell me who he is, where he is in OH, and what his role is in all of this? Thanks for your insight and knowledge of POTS...we are learning so much from all of you.

My son was on Amitryptilline for 18 months ~ during a portion of his misdiagnosis period. I would never have him on it again! He totally lost his affect...he was not the child that we knew. Almost as if he was hiding inside a shell. He was agitated, always on edge, lethargic, and had a general sense of not caring. Additionally, though he was not diagnosed at the time with POTS, the symptoms that he was experiencing that we now know to be caused by POTS, were not helped in the least...if anything, things were worse.

I'm definitely not qualified to answer that question...sorry. Alkalosis is when your blood pH is too high and your body will kick in all sorts of compensatory responses to try to correct it ~ our bodies continually strive for homeostasis ~ that wonderful balance that keeps us healthy.

OK, I hope I get this right....here goes: when your body is in metabolic acidosis, your body's compensatory response may be to hyperventilate to blow off more CO2. This will bring that acid/base reaction back into balance. Yes, this would have to do with our body's use of carbonic anhydrase.

We live on the west side of Cleveland, just 25 miles from University Hospital/Case Western. If there is any way I can assist you, please let me know. We are so thankful that we have such easy access to the UH system...just like all of us here, you sound willing to go to the ends of the earth to get an answer to this monster. I am a true believer that we are our kids best advocates. Don't give up, even when you start to feel like you're losing your mind! Our son looked to us for his strength; for our signal that we weren't giving up and so he wouldn't either. The answer is out there...just need to find the right doctor to help you out.

Good evening everyone! Though I am new to the forums and my son was diagnosed just 3 weeks ago with POTS, I am drawn to respond to this initial post. First a bit of history. My now 18 year old first started having gastro issues 22 months ago, along with migraine, dizziness, vomiting. The peds gastro docs at the Cleveland Clinic diagnosed him fructose malabsorption ~ without a hydrogen breath test...told us it would make him way too sick to have the test & he definitely had it. 14 months after that and some heavy duty meds, our son was still ill. We switched to University Hospitals/Case Western in Cleveland for a second opinion. They said, nope, not a fructose malabsorber, and took him off the meds. They told us he had food sensitivities. 7 months after that, still sick. I was determined to find the answer to this monster. I started checking off body systems: skeletal, endocrine, neurology....and that's where we seemed to have gotten it right. Neurologist Dr. Daniel Koontz at UH ordered autonomic testing (tilt test, sweat test, etc.). As I said, our son was diagnosed 3 weeks ago with POTS. Thru the course of these 22 months, we have noted that he has gastro issues if he eats after 8 at night (digestive system not getting sufficient blood flow during sleeping hours to function properly) and migraine, dizziness, vomiting in the mornings if he takes a hot shower, of all things (shower makes vessels vasodilate). So, in our son, POTS rears it's ugly head in many different ways. His bed is tilted about 3.5 inches (that makes his heart work a little harder thru the night so the blood hopefully doesn't pool as much). Absolutely no showers in the morning...ditto for eating anything in the evening. He is hoping to stay off meds as he was on some pretty yucky stuff for a long time and would like to stay drug-free if possible. One last note, his symptoms are consistently in the morning hours. He will be sick until about 4 p.m., get well again, and then the vicious cycle starts all over again in the mornings. After 22 months of this, we not only doubted our mental well-being, but our son's also....was he somehow causing this? was he having an emotional issue causing this? It was a long road, but when we told him he'd been diagnosed, the first words out of his mouth were, "I'm not crazy!" I think that pretty much sums up his life for the past nearly 2 years. Very trying both emotionally and physically, but hopefully, he is on the road to better health! Best to all of you...and thanks for sharing your stories and insights for us "newbies." We have so much to learn!