StayAtHomeMom

I have issues with the CT contrast. Not sure which one they used but boy, it was something else. The technician said your body may feel warm like you are peeing on yourself. Don't worry it is OK. Try to be still. I felt like my body was on fire and had flames shooting out of the palms of my hands and soles of my feet. It sounds really scary when I describe it but I still managed to lay still for the 5 or 10 minutes they needed. I don't like the CT contrast I will avoid it in the future if I can. As a side note it may have been an issue with the procedure. They blew my IV the first time they tried it. Not the needle part in my arm but the actually tubing. Turns out the catheter kinked in my arm so that may have had something to do with it too. Nurses were all shocked. They had never seen an IV do that before. My hubby had a CT scan of his kidneys and I believe one of them was with the contrast. He had no issues. I had MRI contrast and it didn't even bother me at all. They said it was different stuff. I had an Upper GI scope done and I handled the anesthesia just fine. I imagine it would be something similar since they don't need you out long. I have had lidocaine issues before. I had my wisdom teeth removed (non-surgically) right before my POTS reared its head and I reacted oddly to it. I felt like I was gonna shake apart but not cold. And if I controlled the shaking I felt like my heart was going to explode. It was odd. I also require tons more to numb me then most people. When I was 15 I had a simple extraction done. I was 90 lbs soaking wet at the time. They had to use 3 1/2 times the amount they would have used on an adult man just to get me numb enough to pull that tooth. So now I have it in my dentist chart to use non-epinephrine lidocaine. Not sure if that is actually what it is called but either way it doesn't have the epinephrine in it so it doesn't bother me to have my mouth numbed up. It is a good thing too since they numb it every year for a special cleaning I have to get done. I would ask your medical team and questions or concerns you may have. The nurses and assistants all will try to help you as much as possible. I expect everything will go pretty smooth with your testing. Good luck on your testing and I hope everything works out well for you.

Honestly (and don't yell at me) part of it is your age. I don't seem to have major immune system issues but I notice after about 40 is when people seem to have issues. Unless there is an underlying issue. My mom is gets UTIs pretty common now (she has had a full hysterectomy and RA). The antibiotics can give you a yeast infection even in a healthy person. I would get your cold checked out if you think it has gone into your sinuses. Even if it is nothing at least you know it is nothing. Over the years I have watched people think it is nothing and it turns out to be something. Hope you feel better soon.

Since hot things help have you tried to drink something hot. Wait a few minutes then drink something room temp with your meds? I don't have what you describe and I don't know anyone that it sounds like. Just figured I would point out a suggestion and maybe it will turn your wheels and cause you to find your solution. My hubby hates cold things and ice. He says it swells his throat. He microwaves his ice cream and eats it very slowly. Nothing to drink from the fridge either. It is weird but after 13 years I kind of got used to his weirdness. Good luck and I hope you find a solution.

I am happy for you!!! Baby steps can mean so much sometimes. It sounds like you are pretty stable with your medication now?

The biggest thing I have noticed is the cuff itself. The machine doesn't seem to matter but try to find a cuff with no metal in it. My old one used to pinch sometimes and boy it would hurt. Right now I don't check much. When I do check it is at work and my boss is trying to teach me manually. My hearing is too sensitive though so I have trouble hearing myself over someone else. It isn't hard though. Anyway that cuff has no metal and that makes a huge difference.

I sometimes get something similar at night. But it is usually when I take a melatonin to help me sleep and I stay up too long after I take it. Almost like I am over tired. The world "shifts" on me only every so often. I don't know why, I just hold on the the wall til it gets better. For ear wax buildup you can use 1/2 peroxide 1/2 water solution in let it sit in your ear, then flip over and lay on that ear with a paper towel to help drain it. I use this on my kids and occasionally myself to help the earwax buildup and water clogging. I hope you see a doctor soon and get feeling better.

I don't know if you can buy anymore but I remember reading about something called and iron fish. It is a fish shaped chunk of iron you can put in your food as your cook it. The food will absorb the iron as it cooks. It was supposed to be a cheap alternative to supplements that was used in poorer countries to help with widespread anemia.

Probably. When I crave salt it is that tang of a lot of ionized table salt that I crave. Next time you get the craving try something salty and see if it helps the craving. If not then you might be craving acid from vinegar. Like kosher dill pickles!!!!! Oh I love those. 😋

98/60 is nothing to worry about. I sometimes dip that low. Depends on what I have been doing. If it is a lazy day it is usually low like that. My POTS started with a short run. I haven't been able to breathe right since (3 years now this month). All my other symptoms cycle. But the breathing issue is always there at varying degrees. I feel like I need to take a deep breath but the bottom of my lungs won't move to give me a satisfying breath. When I was first diagnosed my cardiologist knew nothing of POTS. So he did some research and started me on the propranolol. It helped the dizziness that I was having. Even helped my HR but my breathing got so much worse over the course of 3 weeks. So we tried a calcium channel blocker which helped a little. Then at the advice of my pulmonologist we tried the metoprolol. About 6 months after that I seen my specialist, who wanted to switch me back to the propranolol. I refused so he added the midodrine. When I take both my blood pressure is normal. Right now the midodrine works better than my Beta Blocker. Not sure why. I am still searching for my underlying cause. I suspect I have had POTS since I was a teenager. But something else is making it flare. Until then I just try to keep my heart rate low-ish. I would try not to worry about how low the numbers are unless you don't feel good. And make sure your legs are not crossed. You want as little bending in the body as possible when you take your blood pressure.

Do you crave salt? I don't sweat much either but I crave salt so much that I will dip French fries in salt. It makes my body feel better. When they did the sodium testing on me my numbers were normal. I can't imagine what it would have been if I didn't salt everything.

I have normal BP (120/80). When I take my Beta Blocker (Metoperlol) my BP run a little lower at 110/70. Currently I take 25mg 2X a day. I have permission from my cardiologist to up my dose a little to 3X a day because it doesn't seem to be helping much anymore. I just haven't had enough bad days in a row to up it. You can get a blood pressure machine to check it at home to ease your mind but the low doses of beta blockers shouldn't lower you too much. My dad was taking 100mg of Metoprolol 2X a day for A-Fib so 25mg is definitely a low dose. When I first started taking a beta blocker I was taking propranolol 3X a day. Even with the dizziness it helped. I don't know what it did to my blood pressure I wasn't paying attention. All I know is I was feeling mostly better. I vaguely remember my first PCP saying beta blockers can be used to treat dizziness.

That is kind of interesting about the wellbutrin. My sister in law was prescribed it to help her to stop smoking at one point too. Seems to be the go to med for a lot of things it seems.

I agree I need to know the whys too!! I am going to go to my PCP next week and see if she knows a good doc to see to rule out autoimmune and hEDS for sure as an underlying.

Interesting. I have seen similar happen. My mom came up negative then 2 years later positive then another year negative again. Why do doctors do the test if it isn't reliable?

Just curious, how many times over the years have you been tested?

I am very excited for you!!!! I know that feeling. When my cardiologist called me and told me my tilt table was positive for POTS I almost cried. From my research HyperPOTS can be tough but I am sure you will figure it out. I am sure some one that has HyperPOTS can give you some good suggestions. Sorry I can't help more I just wanted to cheer for you. 🍾

How does wellbutrin help tachycardia and high blood pressure?

Yes. I went for a short run and could never breathe right. Within 2 weeks I was at the ER. Within 2 weeks after that I could barely leave my bed. Having kids and a family is harder. You have to be what they need no matter how you feel. They kids need food. Husband needs stuff done around the house. My house is generally always messy because I don't have the energy to do it. And they won't. But it is what it is. I am still here and the world goes on.

If you have low blood volume that would be pretty normal. Even if not, some people just get colder hands or warmer hands. My husband's are like fire. Feels good when my feet hurt

I am 32 and my POTS started 3 years ago. I felt like things were bad. Not even 30 and my life was upside down. Things get better. I am sure the doctors have already checked you for basic life threatening things. Now they just have to find out the issue. Doctors are only human and sometimes make mistakes. Sometimes they are only given a few pieces of the puzzle and expected to tell you what it looks like. Be patient.

I have had joint pain for 15 years, random fevers, low body temp. Yet all my blood work comes back normal. In my yearly blood test I have them check my RH factor and sed rate just because my mom has RA (and her mom had it). I expect it is going to show up eventually just based on symptoms and I know that if I get a handle on it early it will not be so bad. I figure good numbers means I am good for now. If I am lucky it will never show.

Not sure. I was just told mine was negative. I imagine it is kind of like the rheumatoid factor. You can have it but not have rheumatoid arthritis. And vice versa.

Heart rate can go up in response to low blood pressure. I imagine treatment is going to be the same. My 15 year old son is showing signs and symptoms, but I want to get him on a TTT to be sure because his blood pressure will drop sometimes. I am hoping his is something he can grow out of.

Did he say what he thinks you have instead?

ANA?