StayAtHomeMom

This has probably been covered before but I am curious. I have been diagnosed with POTS by failing my tilt table, but I always thought it was weird I have a high resting heart rate. I know since I was a teenager my resting heart rate has always been in the 90s. I assumed because I smoke it has always been high but now I am beginning to wonder. According to my garmin when I sleep I average about 64, but awake and laying in bed watching t.v. I average 95-100. Anyone else notice this? I looked into IST when my PCP mentioned as more probable but dismissed it because it doesn't cause dyspnea. But recently I noticed it can cause it. Standing makes my shortness of breath worse but I always have it, do you think I should bring it up with my doctor as an alternative theory? The odds of having both seem slim but it makes me wonder, since I don't seem to fit perfect within the POTS diagnosis considering I have symptoms laying down as well.

Last October my apartment complex moved me to a temporary apartment while they were getting ready for the renovations. The temp apartment did not have working AC. It is on the 3rd floor and was hot even through our mild winter. By early May I could not handle it anymore. The heat was so bad I could not cook... or even function while I was at home. I would look forward to my days at work. My cardiologist was kind enough to write a note so my apartment complex would fix the AC. I have noticed a drastic improvement of my symptoms. My manager is kind of pissed but I didn't know what else to do. I had fans blowing, and a tiny cheap window unit was not cutting it. I have found AC is a nessecity for me. I can handle a little heat for a limited time, I just have to keep an eye on my heart rate. But since they fixed my AC my heart rate jumps less, my irritation, hot flashes, headaches, and even brain fog is less. It is so nice.

At the grocery store around the yogurt (usually not always) is kefir. There are different brands and flavors. I would find the highest probiotic count and drink a small glass every day. My son and I both have bathroom problems. We will go from constipation to diarrhea even in the same day. The kefir helps our digestive issues to even out. I was on a stool softner after I had my tubal a few years back and I found it awful. It gave me horrible cramps and actually made my stool harder. The kefir helps coat my stomach and it tastes good as long as you don't get the plain. It kind of tastes like liquid greek yogurt. When my son was younger he had just constipation problems so I used to get him activia. It is just a yogurt, but that would help him to go. Just eat it and expect to go within an hour. Good luck and I hope you can get it straightened out soon. I know how much it sucks.

I doubt bc would make me skip my period. I was the lucky less than 5% that had my period all 5 years I had the mirena iud. I did the depo for about a year then had my tubes tied. Besides that is another medication that I do not want. I am one of those people that hate meds and I only take the bare minumum I can get away with.

My normal day to day aches and pains since I was a teenager have been bone pain. And I would welcome that at this point. The muscle pain really sucks. I will try to increase my fluid intake and see if that helps. I assume losing blood when you are a potsie is gonna wreak havok, this is just such an odd pain. Thank you for your suggestions. I am sorry you have endometriosis. My sister in law has/had it and it was always awful on her.

Congrats! Thanks for sharing. It is nice to see proof the "downs" don't last forever.

I have noticed in the last 3 or 4 months that during my menstrual cycle my calf and/or thigh ache. It kind of feels like a charlie horse. It feels like someone is twisting the muscle all the time and lasts for days. It is tight and achy but nothing seems to relieve it. Any one else experience this or have ideas?

I can get different types of dizzies. Lately I have been getting them when I am laying down and it only last a few minutes. I have all types over these past 2 years. If I walk, talk, and smoke I will get lightheaded. If my symptoms are being horrid just talking in any position will make me lightheaded. When I did my 6 minute walk a year ago I about passed out from being so dizzy. I have learned to adjust and suffer through it. If my dizzies or lightheadedness is bad I won't drive but usually I just suffer through or take 1/2 a dramamine to help it. My dizzies can be noise induced as well. Usually when I get away from the noise it will pass. My last bad dizzy spell was over a year ago. I was doing my stint for jury and I got grand jury. I had been sitting there and all of a sudden my head started spinning. It lasted about 4 or 5 days.

So glad things are going well for you. It sounds like you found a wonder pcp.

I have never had my dopamine checked. My blood pressure is "normal". Every once it a while it will drop a little but only by like 10 points. The last time I was in my cardiologists office it wss 112/69. Which is a little low for me but I dont think I have ever seen it lower. That is why I oringally thought it can't be hyper it has to be something else. But I found out my dad has adrenaline problems that they are trying to find the underlying cause. They did the mri expecting to find the tumor and did not. Plus the fact that my oldest son is showing signs of POTS (he usually goes from 70 to 140 standing). I assume it has to be something hereditary. And considering my dad is not hyperflexible the only conclusion I can come up with is hyperpots. Because I can not find a site dedicated to just hyperpots it makes it difficult to sort out what are normal pots and hyperpots only symptoms. I know there can be some overlap but I assumed all my symptoms were regular pots symptoms but by some of the descriptions it may not be.

Whenever I have done it or had it done at the doctor's office or my tilt table it was with my arm down. I have never seen it done any other way. I may have to test that and see what it does to me. It is interesting that is changes like that. It would still be hypertension with his arm supported because his bottom number is over 90.

I have been a stay at home mom for the last 10 years and homeschool both my children, but I just recently started working. I am an administrative assist for a tiny business. The good news is my boss is truely flexible and it is only part time. So if I wake up and it is gonna be a bad day or my sleep was bad the night before I just let him know I am not gonna be there and I come in another day. He has medical issues himself so he knows how it can be. I started working to help my boss out and it gives me something that is mine. Personally I don't think I would qualify at this time for disability because I can function most days. Financially i am ok with my husband working fulltime. My POTS at this point is not nearly as bad as it was last year or even when it started. Once I got my POTS diagnosis it seemed to help me worry less because I knew something was wrong but the doctors wouldn't listen. It drove me crazy. Now I am at the point where I am looking for an underlying cause (I suspect hyperpots). And that takes time to get into specialists. I have a wonderful PCP that knew a little about POTS because she had one other with it and she is helping me to find the specialists I need. You could try bringing some material for your doctor to read up on it so they can kind of understand. I also bought a garmin fitness tracker with hr monitor so if I feel awful I can look at it and decide if it is worth pushing through. That has relieved a lot of stress for me too. It helps that my kids are old enough to help around the house and help me go shopping. I think workinv is possible depending on your will of stubborness and how bad your symptoms are. In theory if you can find the right medicine combination you can feel almost normal. At least for a while.

Wow I am not sure where to start. I guess I will start with I am sorry your health is so poor. I am not sure I could have pushed through that many symptoms for so long. I think I would start with a vaction. have you tried to find a doctor that specializes in dysautonomia? It kind of sounds like your PCP is willing to work with you. Have they seen your detailed list like you posted here? I know they only seem to ever want the number 1 problem, but if you can find a doc that will look at your body as a whole it may help. I wish you luck and hope you find answers soon.

Thanks infoseek. I am glad I am not wasting my doctors' time with this line of investigation.

My biggest strike against having hyperPOTS is my blood pressure doesn't rise. Since this all started it moves more but only like 5 or 10 points. And that is just daily reading not tilt table readings. Can you have hyper without the blood pressure change?

Buffrock is irritability and mood swings not normal for regular POTS?

My body goes through phases. It is almost like if I eat it makes my stomach bloat and makes all my symptoms drastically worse. When it happens I avoid heavy foods, so no potatoes or breads. Eat tiny meals only when hungry. It usually lasts a week or so and then I slowly reintroduce my heavier foods. Pizza is one that gives me a lot of trouble. But as long as I don't eat a lot of it I can still have it.

Does anyone else notice loud noise or overlapping noise (like crowds or mutiple people) makes it worse? Or mornings are better than evenings?

Finnmin I am not sure. I imagine I did so I could keep my mind off not having many cigarettes and absolutely no caffiene. I never thought about it. I spoke to my pcp the other day and she is sending me to an endocrinologist to see if he can do the blood test. I requested that test because of some new information I got from my dad. But now I am wondering if I did it "wrong".

I had the 24 hr urine test and it all came out normal. I have an appt with an endocrinologist next month to test the blood. As far as I know as long as the test is done correctly by the patient it should be accurate.

The only idea I have would be a good chiropractor. Have you tried an ENT? Or maybe an opthmologist (not optometrist)? I am not sure a rhematologist could help, but then again maybe they have seen your symptoms before and they might know what it is. I think rhematologists see a lot more because of what they deal with.

Thanks everyone for your input. I am grateful.

The articles helped a little, but I have read them before. It still doesn't truely give me the difference though. I am hoping to find something that is a symptom or sign that directly points to "you have hyperpots".

When I used to do my poor man's to collect data I would watch tv so I wouldn't think about it. I can drop my hr if I think about it so I have to have something to keep my mind occupied. I did it everyday for a month. I had a few normal days and a few few really bad days but I averaged about 25-35 most days. Everytime it was done in my doctor's office it would be normal. I don't think my pots is as bad as it could be, then again I am not a hundred percent sure when it started. My tilt table showed me above 130 for almost the whole 45 minutes. I didn't have any meds administered. But then again I think my cardiologist might have been humoring me thinking it wasn't gonna show anything

I would get a second opinion. I didn't pass out on my tilt table yet I "failed" it and was diagnosed with POTS. Look into NCS. For some reason I am thinking that is related somehow to POTS. I can't remember where I seen NCS in all my research. Maybe someone else will know. Does you hr jump the reqired 30 most of the time? A lot of the average numbers you are giving sound like mine. A lukewarm shower will help bring those numbers down when showering. Try doing a poor man's tilt table for a little while and record the results that way you have some data to give to your doctor. POTS can be misdiagnosed as anxiety. My doctors kept telling me that was what I had. I knew better though. My panic attacks feel nothing like my POTS. I hope you find your answers. I know it took me a year and a half just to get my diagnosis and now I am on the long road of finding my cause. Don't lose hope. You will find your answer.