JenniferInOhio

Thanks everyone! I will try some of these suggestions.

My daughter has been prescribed salt tablets, but she is not very good at swallowing pills. Can we dissolve these in water? Also, one of her main symptoms is stomach upset, so I am hesitant to even start the pills. Do any of you have any tips to keep the stomach upset at bay? Thank you!!

I've had my vitamin B, iron, and vitamin D levels checked frequently for various reasons. My D runs about 20 if I am not supplementing. My iron runs low, but not enough to take an iron pill, and my B12 is always flagged as high - like 900-1100 range. What is weird, is that my 11 year old daughter who was just diagnosed with POTS has a B12 of around 1200.

I've had POTS for more than half my life and I've only had pre syncope twice. The only reason I didn't faint was that I got myself down and my feet elevated. Both times, I was sitting down and my head felt really "wavy" or "floaty." After a few moments of those sensations, I got up out of my chair. Then, I had a warm/tingly feeling throughout my body - almost like a rush of something. I knew something was happening, but at this time, I had no idea what. I remember telling my husband, "Something is happening. Something is wrong." He told me to GET DOWN. So, luckily I was close to the couch, and was able to save myself from a faint. We took my bp about a minute after the episode and it was very low and my hr was 39!! After explaining the scenario to my Dr., he was sure is was a vasovagal response from blood pooling in my legs.

The anesthesia they use for colonoscopies is not as "hard core" as surgery anesthesia. I was worried about it also and expressed those concerns with my gastroenterologist. He said that I would be in a "twilight-like" anesthesia. I think if you have any problems it will be because you did not hydrate yourself after the "emptying" process. Remember to drink plenty of water or an approved electrolyte drink after you go through the cleanse. Also, the gastro might give you an IV bag after your procedure. I have many arrhythmias - pvcs, svt, non-sustained v-tach, and I did just fine. No problems whatsoever. It is a pretty quick procedure so you won't be under too long. Hope this gives you a little reassurance! Good luck!

what led to your diagnosis? Did you have symptoms and if so, what were they? Or, were you randomly diagnosed when seeing a doctor for something else, like pots?

Thanks, Jan. Your post gives me hope that the Florinef will help her headaches and nausea! If she didn't have those two things, I think she would feel normal.

She hasn't started her period yet, but is definitely going into puberty. I am hoping that this is why she has been feeling so yucky with the POTS symptoms, and that maybe when she gets over this puberty hump, that she will feel better.

Thanks for your thoughts! I really appreciate this board to bounce ideas off of...I was kind of "thinking out loud" too. Don't get me wrong, I'm SO very grateful that he diagnosed her with POTS based on our overall observations instead of just the tilt test. I was nervous during the test because I was watching her numbers, and they weren't going high like at home. I was also surprised that it was only a 60 degree tilt for 10 minutes. Mine was 90 degrees for 30-40 minutes.

I did not have her try a lot of hydration and salt before the test because I didn't want it to influence her numbers. I think we are going to try the Florinef for a few weeks to see if she feels better. A lot of her problems are nausea and headaches - symptoms that I don't deal with so I'm unsure of how to proceed. I'm not sure how the Florinef will help with those two symptoms, but maybe it will do something so she doesn't feel sick all the time. Hydration is difficult because she feels bloated with too much water. I just wondered if Florinef was too aggressive for this stage in the game.

Hi, I would like some opinions on my 11 year old daughter's tilt table test results. According to these numbers, I really don't see a POTS diagnosis, yet the Dr. states in the paragraph below that she has it. I know she has POTS because *I* have it, and I see much higher heart rates at home - sometimes 140's after standing for just 5 minutes. This was only a 60-degree head tilt, and it didn't last long so maybe that is why the numbers are lower than I expected. What I am surprised about is the doctor wants to put her on salt tablets and florinef. Based on the below results, I wonder why he isn't starting off slow with just increased fluids and extra salty foods. This is Dr. Moodley at Cleveland Clinic. He said he treats over 200+ pediatriac POTS patients. My daughter does feel bad a lot of the time (stomach issues, headaches) so maybe he is basing his medication decision on those factors. Any thoughts about the numbers below? Thanks!

TIME Heart Rate BP Mean

Supine

1min: 82 98/60 71
2min: 78 104/59 83
3min: 84 104/60 74
4min: 78 98/55 66
5min: 89 97/58 72
Average: 82 100/58 73

Tilted

0min: 95 102/66 85
1min: 102 103/74 91
2min: 96 102/69 84
3min: 91 106/62 78
4min: 100 103/69 86
5min: 113 113/73 88
6min: 104 109/67 93
7min: 98 108/65 87
8min: 104 109/62 78
9min: 100 106/72 80
10min: 89 98/65 84

1min after tilt: 73 110/53 64
2min after tilt: 73 102/57 72
3min after tilt: 74 105/57 76

This is a mildly abnormal cardiovascular autonomic test panel due
to significant tachycardia during the tilt test. These findings
are nonspecific but in the proper clinical context are consistent
with anxiety and other hyperadrenergic states as well as postural
orthostatic tachycardia syndrome ( POTS).

This happens to me as well. I can't tell you how many times I've been to the ER for chest pain, dizziness, pain in my left arm, pain in my jaw. I always think I'm having a heart attack. I mean, those are the symptoms they tell you not to ignore. I do tend to ignore them now though. I still worry that I'm having a heart attack, but I don't go to the ER anymore. I've had countless holter monitors - 24 hour ones, 48 hour ones and one for 3 weeks. I've had a cardiac MRI, stress tests, stress echos, ekgs. All normal. I can't give you any answers, but I'm right there with you!

Thank you all so much! She is growing a lot - maybe that is the cause.

Well, we have an appointment later this afternoon but I know we won't get answers today - probably a cardio referral.

Thank you for your replies. I'm less frantic about it today. I just have a feeling it's POTS and of course I blame myself.

Two weeks ago, my 11 year old daughter was standing as I was straightening her hair. She kept blinking her eyes and said everything was fuzzy. I brushed it off as maybe the hair spray getting in her eyes. She then said her stomach hurt (her stomach seems to hurt a lot especially when standing too long) so I had her sit so I could finish her hair. About 3-4 minutes later, she said her eyes were fuzzy again, and I looked down and her face was pale and she had almost no color in her lips. Stupid, I know, but I quickly had her get up and guided her to my bed where I laid her down and put her feet up. Within seconds, her color started coming back.

A couple minutes later I checked her blood pressure and it was 85/55ish. She had just started some medication for reflux and is starting puberty so I brushed the almost fainting episode off as one of those two things.

Fast forward to today...I was upstairs and my daughter came up (just one flight -13 steps) and hugged me and I could feel her heart just pounding. I put my heart monitor on her and her heart rate was 170!! So I checked her resting rate - it is in the 90's. When she stood up it went up to 120's, but then I had her continue to stand for 5 minutes and it slowly increased into the 140's - just standing there - no talking or swinging her arms.

I'm going to make an apppointment with her pediatrician, but I'm very scared that she has POTS too.

Any thoughts?

I've had bouts of this that lasted for several weeks. My ENT even sent me for angiograpgy MRI to look at the blood vessels in my brain because apparently pulsating heartbeats in your ear can be serious. My MRI was fine and the pulsating eventually went away. I've had this happen 2-3 times and each time it lasted for weeks.

Yes, that is low. Most people will feel bad at that reading. That said, I was 80/54 at my cardio appointment last week, and my doctor wasn't concerned at all. I normally feel a little "off" and can tell when my upper number is in the mid-80's. However, that day, I felt completly fine at that low reading. Usually, when I feel like my pressure is low, I drink a Propel and have a salty snack. I usually feel better within 20-30 minutes. I'm also on a low dose beta blocker.

Vasovagal response? I'm thinking the higher blood pressure in the ambulance was a result of being scared at what happened in the store.

Symptoms are:

Blurred or double vision

Cold skin

Difficulty breathing

Disorientation

Fainting, change in level of consciousness, or lethargy

Headache

Irregular heart beat

Nausea with or without vomiting

Pale skin or pallor

Pins-and-needles (prickling) sensation

Slow heart rate (bradycardia)

Sweating

I'd run the compression stocking idea past your Dr and see what he/she says. So glad you did well during surgery!

Definitely ask about small fiber neuropathy. I have it and get sensations like you're describing.

I just read about this. Yes, it is a kind of neuropathy. There is a specific name for it when it occurs on the thigh. Both my dad and I have that. He's a neurologist and says it's no big deal - the one on the thigh, anyway. If you have it in other parts of your legs I would get it checked out. For me, it has started at the same time as other neuropathic-type things are happening, so I need to remember to bring it up as one piece of the puzzle.

How often do you feel these sensations? On a daily basis? Several times per day? Putting in a call to my POTS Dr. today...

SFN stands for small fiber neuropathy. One type of SFN is autonomic neuropathy, which about 50% of POTS patients have. Some portion of these also have sensory neuropathy, which causes abnormal sensations like tingling, numbness, feelings of hot and cold, etc. It typical starts in the feet/lower legs and hands/lower arms. I have sensory SFN and while I've never had the specific feeling you describe, I've heard it can occur and there are definitely a lot of bizarre sensations that it causes.

Obviously you need to see a neurologist and he'll probably want to check for a variety of things, but make sure he considers this, especially if he's not aware that there is a connection because SFN and POTS. A local neuro told me it pretty much only occurred in people with diabetes and AIDS (which is actually completely false) and that my symptom pattern wasn't consistent with it, but my POTS specialist tested me for it and sure enough I have it! I think the usual tests are QSART and little skin biopsies.

Thank you. I'm calling my POTS dr next week to ask for a referral to a neuro. I'm suspecting some type of sensory thing, my herniated disks in neck/back, or possibly thyroid - just because of some other weird things happening.

I get a burning sensation from the top of my feet, through the calves, and into my thighs. Often it does include both forearms, and most recently my abdomen. It can get particularly uncomfortable. Burning is not a good word for it, but it is the best way I could describe it. For me it would be closer to dipping these sections into hot water.

I have attributed it to my SFN, but that is my guess. It has been suggested as a possible cause.

Yes - dipping into hot water! What is SFN?

IMHO...cuz you're asking...you should check w a neuro. Yes it's just one little symptom but it's an unprovoked sensory experience in strange places. I've had general autonomic related heating, but it was followed up w tachycardia; ie sympathetic activation. And if you have MS in the family, I think it'll ease your mind to talk to a Neuro. I say this from experience (and from my own perspective). I've had symptoms that overlapped MS, so had yearly MRIs for a while, and another baseline two ys ago after not having had one for a while. (So far, pretty normal so Neuro says Sjogren's). Another possibility-fwiw-my sister had a slow onset of sensory symptoms in her limbs that worsened over time into severe weakness. She waited. Turns out that her cervical spine was squishing the nerves and by that point, causing damage. She had surgery to get a steel rod (went very smoothly) but had a long recovery to normal because she'd waited. This isn't meant to scare you because it may be nothing but I'm personally an advocate of being on the front end of problems, if possible!

This is interesting in that I do have a herniated disk in my back (lumbar region) and a suspected disk problem in my neck - it hurts to turn it too much and is sore - has been for several months. I thought cervical affected arms though and lumbar affected legs.

For the past 3 months, I've had this warming sensation in my lower front leg/ankle area. It feels like I dipped my leg into a very warm bath, and then it goes away. It only last for a few seconds, but comes back on and off throughout the day. Some days I feel it many times, other days not so much. It doesn't hurt at all just feels very warm - but not to the touch. It actually started in my right foot in August, but now it's more in my lower leg/ankle area. Sometimes I'll feel a warming sensation on my other leg, but 9/10 it's on my right. On two occasions I felt a warm sensation in my right forearm, but that hasn't happened in over a month. Does anyone else have a similar story? What could this be? I mentioned it to my POTS Dr. and he was perplexed. He said if it got worse that I would need to see a neuro. I'm 40 and my aunt had MS. He mentioned that in passing.

Thanks for any ideas.

Yes, palpitations causing dizziness or light-headedness needs to be addressed by an EP.

I can't believe a nurse told you it was medically unnecessary. Call again and talk to someone else!

I've had it since age 18 after a bout with mono. I remember being in college and my heart pounding out of my chest as I walked up flights of stairs. I just thought I was out of shape. I'll be 40 this month so 22 years.