StayAtHomeMom

My son is at that stage. When I first got sick I tested my machine by doing a poor man's tilt table on my hubby and oldest son (I thought my machine was broken). My oldest son was 13 at that time. He showed a huge jump in HR. At the time I took him to a cardiologist who dismissed him. And figured it wasn't worth the diagnosis at the time because he was managing. He was actually taking care of me because I was so sick. Now that he is almost 16 it is causing way more issues. There are times where he can be just fine. Yesterday he brought in groceries and put them away with no issues. But the other night he was helping my hubby cook and all of a sudden felt so bad he had to go lay down. His stomach hurt, he couldn't breath, and felt like he was going to pass out. It is seemly at random. I am counting down the days til he sees my specialist. I am hoping he has POTS (sort of) just so he can have some medicine to take on a as needed basis just so it can help. He hates to complain and take medication but his symptoms are getting to the point were it is effecting his daily life. The good news is he is homeschooled so if he feels really bad he plays hooky.

The ER doc may not have actually been able to read an EKG. My hubby's PCP told him based on his EKG he had some heart damage. We totally freaked out. It turns out she was reading what the machine told her and not the actual graph. His cardiologist read the graph and she said it was fine. That the heart damage we were told about was a common fault with EKG machines. When I showed her my handheld one my boss lent me she was so excited and actually looked at the graph. It sounds like you are on the right track. I would see if a new cardiologist can help. Explain yourself and hopefully they will understand where you are coming from and can help alleviate your anxiety. Also EKG graphs can be misleading. If you just barely move sometimes it can show it and it turns out to be nothing.

I have never taken birth control (I suck at taking pills everyday) but during my period I load on vitamin water and salt and that seems to help ease my symptoms a bit. Usually I just suffer through them since they are not usually too horrid.

As far as I can tell you have the antibody for the spotted fever group or that rickettsia virus. It means your body has fought of one of the viruses in that group. If I remember my research right the tick bourne viruses can linger for a long time. Not sure how long the antibody would stay in your body though. That would be a question for your doctor.

It can be a little overwhelming at first but once you have a handle on all the information it isn't too bad. Sounds a little unusual you would get POTS at 44. And being male (odds are less). When it started had you just gotten sick or were you laid out from an body injury?

I would try to see a specialist in your area. You can get the records to the specialist and that will help. A urine or plasma catacholmine test will rule out hyperPOTS. If the blood tests were an ANA and inflammation markers that is used to rule out autoimmune. Also thyroid markers in your blood tests. It looks like they ruled out heart abnormalities. If your PCP is willing they can treat you too. If they are willing to learn and you put in the research. My PCP and cardiologist were treating me before I started seeing my specialist. They still mostly treat me considering my specialist is 3 hours away. Out of curiosity did you like Mayo? I am considering going to Cleveland clinic or Vanderbilt to try and find my underlying cause.

Talk to your doctor about midodrine. I take both. I take 25mg metoperlol tartrate 2x a day and up to 5mg midodrine up to 3x a day. Every time I check my blood pressure it is normal. The metoprolol lowers and the midodrine ups it back. I can also take an extra metoperlol in the afternoon if my heart palpitations act up but that is very rare.

I have had short instances of you you describe. But they usually don't last long and my midodrine helps. Also resting for a bit. BP can change slightly with POTS or not. That being said a change in blood pressure can cause the body to compensate by elevating HR. I would get a second opinion to what her cardiologist has said.

You don't have to have blood pooling to have POTS. Depends on your underlying cause.

I would see your sleep apnea doctor. It sounds like your cpap isn't working. Hope you feel better soon.

I imagine they were turn colors. Honestly I am not sure either. My oldest son and I have livedo reticularis as well. Doctor told me for my son it was normal. She said you have it too. What she should have said is it wasn't abnormal. Perfectly healthy people can have it.

My specialist started me on my midodrine a year ago. It has been amazing. Usually when I get tired I look and it is about time for me to take my next dose. I started with a half a pill (2.5mg) and my doctor told me I could take UP TO a whole pill (5mg) 3x a day. He said if I don't need it then I don't have to take it. It takes 5 hours to come out. Laying down with it can cause unsafe BP levels so you shouldn't lay down with it. Generally I take one (5mg) in the morning when I wake up and sometimes a second one if I am being active. Very rarely do I needs that 3rd dose. That being said I spent a day in June wandering the Ark with my in laws without major issues. As long as I took my meds on time. I also take metoprolol. There are days when I don't take it, but those are the days I am resting and doing nothing. Very rarely. I do get the tingly scalp with this medication. Just a heads up. It is weird but my specialist is not concerned. He says good that means it is working.

I assume PVCs and PACs are types of heart palpitations. My doctors have never said anything about them except I have "pauses". My metoperlol keeps them away mostly. Occasionally I have heart palpitations but it just means I am overdue for my Beta Blocker.

Definitely see another autonomic specialist but make sure you are properly hydrated. That is another one of those things that they blame my symptoms on besides anxiety. Have you checked your BP during these episodes?

I started the keto diet the beginning of October to lose weight. And a surprising side effect was my diarrhea has eased. I occasionally will still have it if I eat too much broccoli or sugar free chocolates but it is kind of nice that my GI issues have lessened. Not sure why it happened but I am very pleased. Honestly the keto flu was a few bad days of POTS symptoms but I made it through. So far I have lost almost 15 lbs and I plan to stay away from the obvious carbs when I am done losing weight. Hopefully that will keep the diarrhea away for me.

I am sorry you feel this way. I remember in the begging thinking that they would only find out what was wrong with me when they did my autopsy. It has taken a lot of perseverance and patience to get my diagnosis. I am much better now. I have a group of doctors that listen to me and help me. I would start your search for a good PCP to start with. Don't be afraid of the hospital. If you need to go then go. But start finding good doctors to help you out. At the very least they can get you on some meds and get some basic tests done to see what is or isn't going on. Don't give up, it may take a while.

Have you tried any medication to help? I remember when I first got sick and I was constant dizzy for about 2 months. Couldn't even drive at one point it was so bad. My pulmonologist suggested a 1/2 pill of dramimine (the motion sickness medicine) and that drastically helped.

More like a moistness. I have never been a big sweater. And I don't think I have ever seen my son actually sweat.

My son and I both get hot flashes. I will be bundled up because it is 68 in the house. He will be doing dishes or something and talk about how hot it is. I shake my head and tell him he is hot flashing. His come back is he can't be hot flashing because he isn't as old as Grandma. (My mom is menopausal). Lol. I make his check his HR and it is usually 120 or higher. When I hot flash I am 125 or higher. I usually hot flash waiting in line at the grocery store.

I would see if they would be willing to turn off the "ramp up feature". That was my hubby's next step. He kept pulling his off in his sleep because he could breath.

Your PCP can request it if you like them better. My PCP did most of my testing until I seen my specialist. He mostly works on my medications. My PCP works more on ruling out things for me.

That's kind of neat. Didn't know about that.

I took a liquid medicine that helped that for a while. I took it for a week and my stomach feels a lot better. I don't remember the medicine or what it was for. I would have to look it up it was so long ago. Now I treat my nausea with kefir and Rolaids plus gas relief. Or if it is just starting a pickle or something tart like that settles it. My mom likes green grapes for her. Have they ever done a scope to see what was going on?

What is a heated hose?

Do you use the adaptive pressure or straight pressure? Originally they had my hubby on the adaptive. The doctors thought maybe straight pressure would help the feeling of choking. But he never tried. A friend of mine uses the straight pressure and he said it is much better.