dpeeps

I live in San Diego county and see Dr. Thomas Ahearn (cardiologist) at Scripps Green Hospital in La Jolla. He is a specialist in POTs and one of his children has it.

When I was referred to the cardiologist last year he reviewed my medical history and saw that I had gone to the urgent care about 9 months prior with blood pooling in my feet (for some reason it only happens to my feet, not my hands). He saw that over the course of a month, I had been referred to many docs including a rheumatologist who ruled out a lot of stuff and sent me for a Reynaud's test, which was negative. Anyway, my cardiologist saw that and after a LOT more questions, he said "I think you may have POTS". I had never heard of POTS before, but I was back to his office a week later for a TTT which was off the charts positive.

I feel mildly to moderately dizzy all of the time. I also suffer from migraines and that is when the dizziness is at its worst. When I have a migraine, even the slightest movement of my head or eyes to one side cause extreme dizziness and intensified nausea. Most of my migraines start with nausea. Probably abdominal migraine, though I've never pursued a diagnosis on that count....

My first major flare- about 1 month before diagnosis of POTS - I felt the worst after meals. I dropped 20 lbs over that month. I never knew what was causing it, but I felt like I was going to pass out.

Also, I stopped driving for a while because I had the same feelings while driving. But now that I think about it, it was more like a sudden feeling of falling asleep, not so much the clammy, sweaty sick feeling before syncope. More like a "curtain" of unconsiousness overcoming me, and there was no stopping it - my head would actually drop sometimes. The ensuing panic would then cause an adrenaline rush. It got so bad that I just stopped driving for a while. I had never considered narcolepsy....?

Things have improved a lot since that time (about 15 mos out from dx)

I am exactly like Pink1975. I had horrible reactions to Zoloft (detailed in another post). I had a very bad reaction to "cocktail" of Fentanyl and Versed durning routine colonoscopy. However, I can tolerate small doses of Xanax.

A long walk on a chilly night

star-gazing

a cup of coffee - light and sweet

a quick bath (has to be quick or I get sick)

hanging out with friends

belly laughs

a really good movie

cleaning the kitchen (weird, I know!)

watching my dogs do almost anything

sleeping...

Yeah, I need to have a stress test and a holter monitor. The EKGs and Echocardiogram were fine, plus my heart appears structurally normal, BP is low, cholesterol low, I am female, slender, and have no family history of any heart disease/attacks. I think he is thinking that the risk is so low for me for it to be anything serious. But what about my peace of mind?? Seriously, I can handle everything related to POTs except this the chest pain and random vibrations thing....

Let's see, I feel terrible in the morning, terrible while I am at work, and terrible at night and then I wake up all night long!! LOL

Things are pretty black and white for me - when I am feeling good, I am relatively symptom free, except for the tachycardia, light-headedness, and sesitiviity to heat, strong perfumy smells, and overly busy environs - those never leave me.

When things are bad (flare), they are bad all day long and all night long and I experience 80% of all possible POTS symptoms.

By the way, I still exercise. I have never felt any better or worse as a result. I keep doing it, because I am afraid I will get worse if I stop.

Thanks Corina for responding. I'll have to ask the POTS doc about this. I was worried that maybe I was in the early stages of MS, since I read somewhere recently that odd patterns of goosebumps can indicate MS. It is a very odd symptom, but of course odd symptoms seem to be the hallmark POTS

Resting 75-80 (never below 75). Standing generally 125. I am not on any prescription medications, but I take magnesium every day.

Yes and I have no idea what it is. Feels like a little tiny battery vibrating in my heart/chest area. When I put my hand over my heart, I can feel the vibration through the chest wall. I have no idea what it is. Tired of telling my cardo/Pots doc that I want a holter monitor. Just gave up asking

YES, yes, yes. My most bothersome and terrifying symptom. I don't vomit however. I vomit when I get migraines, but not during the "psuedo heart attacks"

My symptoms started around puberty. This sounds strange, but many of them... I never realized that they were not "normal". Major, major flare last year at age 47. I thought I was dying I was so sick and was in the ER a couple of times. It wasn't until the Cardiologist started asking me all these crazy questions where my answers were mostly "yes", that I realized that what I had been experiencing (in mild form) all my life was not normal and could be explained by dysautonomia. I had never even heard of POTS when he told that I probably had it (confirmed by TTT a week later).

I drink water before I go to bed, which wakes me up to pee. When I use the bathroom, I drink more water before I go back to sleep. I still wake up a little dehydrated feeling though. I drink more water before I get up in the morning which helps. Also, if you eat something really salty like olives before betime it should help a little.

Actually, I asked my Cardiologist to rate my POTS based upon my Tilt Table Test results alone and he said that I was about a "5-6" (with 10 being the worst cases he treats). So I guess this would be "moderate". I am able to work and function socially, though sometimes it is a challenge. I guess I agree with him that I have a moderate case.

Hi I thought I would search for this topic before starting a new one. Found this post from 2011. I have been getting random patches of goosebumps on my left leg only. I don't feel cold at all. THe goosebumps just appear. Is anyone with diagnosed POTS experiencing this and if so, on one side only (?)

I grew up with night terrors, but somewhere in my 30's they stopped and I stopped dreaming altogether. After POTS dx, I started taking magnesium to see if it would help my headaches. The dreams returned.... some good, some not so good. However, I have not seen any correlation with relief of POTs symptoms (other than lessoning the headaches). I go to sleep tired, wake up about every hour and finally when I get up in the morning, I am not rested at all and feel worse than when I went to bed. When I try to nap during the day, I generally awaken with heart racing, nauseous and a feeling of impending doom. There is simply no refreshing sleep.... *sigh*

I lost about 15 lbs during the first major flare, but now that my symptoms have stabilized, my weight is right in the middle of the normal range.

My body temp is usually high 96 - low 97, so lower than normal. I feel feverish a lot, but then can suddenly feel freezing, particularly my hands and feet. The other night, the sound of my teeth chattering woke me up. I took my temp and it was 95.8 - only 8/10 of a degree away from medical hypothermia. I guess it is just POTS - temperature disregulation.

Yes, it is my worst and scariest symptom.

I just looked at Wikipedia again (it has been a while) for its description of POTS and under the following sub-category "Chronic or acute hypoperfusion of tissues and organs in the upper parts of the body are thought to cause the following symptoms" it lists "Myocardial Infarction" (i.e. Heart Attack).

What the !? This is just plain incorrect, right?

I am exactly like Mighty Mouse - I do best with a small dose of Caffeine (in the morning only). A little caffeine actually seems to help my symptoms a little. Of course if I cross the threshhold, I feel worse. I have to be on 6:00 AM conference calls and I do not think I could do this without a little caffeine.

Hi I just found this topic from May, because I am having major temperature regulation issues right now. It is the same pattern every night. I go to bed with the A/C set at 74. I have a fan blowing in the bedroom too. I go to bed feeling comfortable.

Here is the cycle: wake up extremely hot, like a hot flash and clammy sweaty, but not drenched in sweat or anything. Get up, stand in front of the fan until I am comfortable. Go back to bed with just the sheet over me. Wake up 15 minutes later feeling slightly chilled. Pull the blanket back over. Wake up 15 minutes later with my teeth chattering from the cold!!! Then the cycle repeats going back to extremely hot

I am up all night long with this. So, last night, when my chattering teeth woke me up, I took my temperature and it was 95.9. Is this dangerous? Or just part of POTS? This is a newer symptom for me, at least having it happen at night and keeping me up all night. So tired....

Yep, my best friends are V-8, gatorade and water. I am sooooo sick of drinking water, but if I don't stay hydrated, I pay the price!!!

Hey Margiebee - I have many periods of feeling great with very few symptoms. Right now I am really good. The tachycardia really never leaves, and most days I will have moments of lightheadness, a little dizziness, but who is complaining? Those are the good days!!

I have had days, weeks where I felt so good that I was convinced I was "cured". Unfortunately, the more bothersome symptoms always return. I have learned not to panic when they come and tell myself, "I will feel good again, I have been through this before". Everyone is different, so your experience may not be the same as mine.

I was physically very active when I had my first major flare last year in March (2012), so in my case it was not due to deconditioning, etc.

In any case, I am glad you are feeling good. Enjoy it, whether it lasts a day, a week, or forever ....you know it is possible