StayAtHomeMom

Has your thyroid been checked?

I am kind of surprised that my specialist confirmed my diagnosis of POTS because the technician said my blood pressure dropped on my second tilt table and wanted me to wait until it was stabilized before she would let me stand and walked out. Not sure how much it dropped though. It may have only been a little. Every technician that I have dealt with has said to make sure I am off all meds for 3 weeks before the tilt table so it doesn't skew the results. I would see if you can get a copy of both tilt tables and see a specialist. They would get a better read on your results. Assuming the technician recorded the data that is needed.

I bought a Garmin HR. It actually soothes my anxiety. By checking when I feel bad and when I am doing something it helps to see what my HR is doing. I love my Garmin. It is water proof. I go swimming, shower, and do dishes with it. Had it over a year now. The only draw back is it does not continuously monitor. There might be a way to do it but I don't know how. It checks every 2 minutes and records it if I am not actively looking at it but sometimes it misses those short bursts of freak out.

Deep breath and everything will be OK. It sounds like the doc is at least taking you seriously. While you have the heart monitor on, try to do things. That way your testing shows what happens when you do things. I have some of my doctors that have a online portal so that I can communicate with them through that. Maybe with your anxiety issues you could try that. Assuming they have one. I hope your testing is informative. One way or the other, having more data will always help.

I have the same issues.

Ok. I have never tried to upload a picture before so hopefully this works. If you look on my pinky knuckle (the one on the back of my hand) you can see what it looks like when it is not flaring. The discoloration is a thickening of the skin.

Yea, I looked it up and mine isn't like that. It really is kind of an odd rash.

I wish you luck with your cardiologist. At the very least request a Tilt Table Test. Your symptoms sound right at home here. By the way your dog is beyond adorable and having a service dog sounds amazing for people that have POTS. Especially single people. Someone to care for that takes care of you back with no judgement. Never thought that a service dog could be so helpful for some conditions.

My experience has been "you are fine. It is your anxiety and smoking." Now it is better. I have a great PCP and a specialist. That helps tremendously. But it took me about a year and a half to find them. My cardiologist and PCP knew very little. But they were willing to learn and that makes a huge difference. I am due to see my PCP next week and I am hoping she can point me at a good specialist that can rule out autoimmune and hEDS for me. It seems like the most plausible underlying for me. Hope you can find that one doctor. The one that believes you and helps you. It is amazing when you find a doctor that validates you and makes you feel like you are not crazy.

I am in the process of finding my underlying. My specialist doesn't seem concerned but I am. It is like putting together a 1000 piece puzzle and missing the final 3 pieces. It drives me crazy not knowing. In theory if you can "fix" your underlying cause your POTS can go away. I know it doesn't always work that way but I hope mine does. I miss being able to do more and not have to worry so much about my health.

Thanks for the update. Knowledge is power. The more you know about what your body is doing the easier it will be to try and control it. Good luck and I hope all goes well.

My sister in law has gastroparesis and she tried Reglan (bad reaction) but then her neurologist prescribed her a compounded medicine that her insurance only partially cover but helped her quite a bit. Her gastroparesis is pretty severe though.

I am supposed to take it twice a day for HR. I have been just not taking it at night or try to take it earlier. Took it last night because of how bad I felt. Slept like crap. Very unrestful. I may have to see if there is a once a day or see if I can take it morning and afternoon.

No coffee for me, but Mountain Dew is fine. Weird how that goes isn't it?

I have noticed just taking my beta blocker before bed makes my sleeping worse. I try to take it earlier in the evening. Not sure why it works that way though. I also listen to audiobooks to help me sleep. I am a big book nerd so it has to be a book I have read a lot and certain voices are better. I love listening to Jim Dale read the Harry Potter series. His voice is deep and soothing. Plus while I am listening my mind can't wander to keep me awake. If I still have trouble I take melatonin and/or take a shower. Showers are exhausting for me so I usually fall asleep. Heat has never worked for me (clogs my nose up) so I usually do cold. If it is winter I will open my window (drives my hubby nuts) in the summer I usually have a fan blowing on my face. Not sure if the noise helps much but the cool wind on my face does.

I have the "pause" in my heart rate. At least that is what my PCP called it. I can even recognize on an EKG. It is a weird hiccup. Not sure what it is called. I more or less just deal with. No major issues except every once in a while it will cause me to cough really bad and feels like my heart wants to explode for a half a heartbeat. But it settles back down and not a big deal. Only happens about once every 3 months or so at this point. Before I got diagnosed it was about once every 2-3 years. Seems I have had it for a long time even before my body started freaking out at me. I have never been a big alcohol drinker so not sure how it would effect me now. I take metoprolol for my heart and it seems to help. I noticed a huge difference when I started the medication. Even now I can tell when the medication is wearing off. I agree with yogini: the tachycardia and the accompanying symptoms are much worse then my heart beating a little weird every blue moon or so. I agree stress makes it worse. Also where I am in my menstrual cycle. I have so many worsening symptoms leading up to that time of the month. It is a little fascinating how my body seems to know it is almost time and starts getting mad. Good luck!!

What dosage of Metoprolol were you on? And in what way did it affect you blood sugar? I haven't heard of that for a side effect. I am on it now and it helps my heart palpitations but it is starting to stop working for my HR. So we are having to tweak my dosages.

I have recently decided to cut my off again. I have been growing it out because I missed my long hair but now after 4 years of it being long I am done again. I am going to use it as a reward for losing my first 10 lbs on my new diet.

Another great reason to try it then

When it is not flaring and itching the skin is really thick there, is that a symptom? I don't think I have ever seen psoriasis semi-healed.

Very cool. I can't wait to try that!!

I have seen and heard of people wearing a Holter monitor for up to a month. Is the issue more it just can't catch it? How quick is very quickly? Do you have any warning symptoms? If so can't you just get something that monitors at the drop of a hat? "Implanting a device" sounds scary to me. At least the Holter can easily be removed. What is the name of the device/procedure? Curious for my own knowledge. I have never heard of it.

Oh I just wanted to add: my POTS seems to be on the mild side. It was rough 3 years ago but has since calmed down with my answers and meds (metoperlol and midodrine) no underlying cause yet.

I have noticed when I stay on a routine of 10PM to 9AM I feel better as well I can wiggle a little but if I mess it up too much I can feel it. My symptoms haven't been bad for over a year now so I don't know how much is the sleeping pattern or new meds. I have noticed I go to sleep late on Saturdays so I sleep later and I spend Sunday trying to recover. But during the week when I am working I feel better. I have been trying to convince my boss who has chronic health issues that if he just gets in a pattern he would feel better. My mom who has RA has said she feels better if she gets on a schedule and sticks to it. But she likes the two days off in a row. She says she can work 9 days straight as long as she has the 2 days. Her RA is pretty bad that she needs the IV infusion biologics to manage hers. I know my sleeping is for long hours. I have been like that since I was a teenager. 10 hours sleep minimum for me or I just don't function well.