kayjay

Have you completely ruled out Lupus? I was misdiagnosed with that years ago. I don't not have a rash, sun sensitivity, or joint pain. I have a good friend with lupus and she has those three symptoms.

Beta blockers won't simply lower Bp- mine did at first but it has a "blocking" action on the adrenal hormones. Sorry I'm getting ready to leave my house but betas might be helpful.

I actually am no longer soaking the sheets. From 25 to almost 39 I had this problem. I do take medication to seep but I think my beta blocker has helped as well. I'm so glad that your son is able to get some sleep. Not sleeping is horrible- I can't imagine growing and not sleeping. His body may "reset" a little bit now.

I have hyper and yes- what you describe has happened to me. I have no explanation for it. Having very low blood pressure will set of adrenalin. Sadly I cannot correlate my numbers to symtoms. Both high and low feel horrible. It is possible that your Bp is dropping at night, adrenalin kicks in and brings it up to normal. You still will feel all of the effects. I had a 24 hour blood pressure cuff at Mayo and my nighttime BP drops drastically. I didn't want a sleep study but I do take meds to sleep.

I am very interested in biofeedback. I think when I don't feel well I tend to hold my breath. Thank you for sharing,

I've never been a smoker but I have chewed nicotine gum. It is a vasoconstrictor and helps with cognitive function. It's being researched for use in Parkinson's treatment as well althzimers. I don't seem to get addicted to anything so I can't speak to that. I do know that nicotine is bad for reynaulds. I no longer chew it becuase i started provigil. I used to when driving. I talked to my dentist about it and a few of my doctors. They didn't have an issue with except one suggested the patch. I prefer the idea of the gum because its easy to spit out. Two side notes- chewing gum can be a habit in itself so I always had regular gum as well. As for caffeine, coffee is a diruretic. I did a bit better on caffine pills.

Also- I had lots of chest pain- I rarely have it now. It was like a squeezing or a pressure. I've been on a beta blocker for a long time and this symptom has resolved quite a bit.

I'm going to plus one on Sarah. Also I felt almost like my legs were bruised from the inside. I think it was that after effect of blood pooling. I'm sorry that you felt so yucky but it is good to get a diagnosis.

No, thankfully they do not.

+1 It's intimidating at first but gets much easier

I had two healthy children with Pots.

It actually is really different. A poor man's tilt can point you in the right direction. You could possibly miss another problem. POTS is considered a "difficult diagnosis" . Getting diagnosed was a process.

HANICE- you should get a TTT. I've never heard of anyone being diagnosed with POTS without a tilt table. I don't want you to miss some other problem. The pots diagnosis is somewhat a diagnosis of exclusion. I'm not saying that you don't have pots. It's just unheard of to be "diagnosed" without a tilt table.

I personally am not particularly worried about elevated heart rates. If my heart rate stayed high I would certainly call my doctor. Heart rate spikes and blood pressure spikes a generally not harmful. The danger is when high numbers are sustained for a long period of time. I would also encourage people that are worried to take their pulse manually. A heart rate in the 200's isn't implausible for me but my heart rate monitor is quite useless much of the time. I've gotten readings of 220 when my actual heart rate was under 100. I actually don't use it any longer. My heart rate is too fast when I exercise. I go by shortness of breath symtoms when exercising. Paying attention to my heart rate would just scare me.

I've never had a negative urine test. I double checked with my husband just now. I've had 6 or 7 positive 24 hour urines. I dont want you to think that I was having "flares" dring the testing either. Excluding one that I did during a hospital stay, and once during a camping trip, they were all on normal days. They are always positive and any endo I've ever seen thinks I have a tumor. I'm wondering if you might want to wait for a positive 24 hour urine before you put yourself though all of that testing. I've had so much radiation from my "tumor" that I won't get dental X-rays or a mammogram.

Also I get the whole tumor thing- it's fixable. I was told that I %100 had a pheo but it was too small to find. 10 1/2 years later- nope...it's hyper pots.

I once again second the tests Sarah recommended. I was Misdiagnosed with a pheo by Johns Hopkins- I had all of the testing Sarah mentioned but the pet scan. They didn't have the equipment at the time. I had that done at NIH. If you can see an endo at Hopkins I would consider going back there. One warning is that researchers actually want a pheo- they are pretty rare and they want to study the tissue. My endo at Hopkins told me this because they needed NIH to find the tumor but Hopkins wanted to do the surgery. If it is likely that you have a tumor NIH will take you for free. Of course you become a lab rat. Are your 24 hour Urines positive for a tumor? Mine always are but I have Hyper Pots I don't have a tumor. Good luck!

I'm not sure if you should increase your potassium without checking with your doctor. The worst flare I've ever had occurred when I was taking yaz birth control pill. They can increase potassium. I ended up in the hospital for a week. My blood pressure was extremely high. Good luck.

Kim- I just had high Bp and low pulse. Mine was about 178/118 with a pulse in the 40's. I went into the er and found out my sodium was low. This info may not be helpful to you. I am also not on florinef. I saw my doctor today and he urged me to drink less plain water. Is it possible to get your electrolytes checked? I'm sorry that you are feeling so poorly. It's very scary.

You know you have pots when... Your children have ask you how to spell simple words but they can write "postural orthostatic tachycardia syndrome" without batting an eye lash.

I went to several allergists and a pulmonary specialist years ago. The pulmonary doc sent me to Johns Hopkins- long story short my breathing problems were pots and for the most part are better. I used to be short of breath even talking on the phone. I do not want to discourage you from getting any testing done that may help you... But treatment of my POTS eventually improved my breathing. You might want to consult with your cardiologist. I'm editing because I didn't explain well. I meant that for me knowing my heart was healthy helped me not worry about the shortness of breath. It isn't "resolved" but it is better. Best wishes!

+1 It is unsettling because I certainly don't have the answers... Just lots of questions!

When you go into the er, the staff asks "what kind of nurse are you?" Umm, I'm a teacher. The er physician "compliments" you by saying "you know more about your condition than most doctors."

Joann- I forgot about the migraine like high Bp headache. I had headaches for years. It was so odd to realize one day "my head doesn't hurt".

I don't have anxiety. When my blood pressure is excessively high I do feel anxious. The anxiety does not happen first. I have never been diagnosed with anxiety.