Angelika_23

Hello everyone,

I haven't been on in a while. Lots of stuff going on...

Anyway, my pulmonary doctor wanted me to start getting some exercise, but I can't because of fainting and HR issues. He referred me to cardio/pulmonary rehab and my insurance approved it this time!

My first day was Friday, and it was a BAD day. Three minutes in on a recumbent bike thingy (at the lowest and slowest setting) and HR was 169 and I was down for the count. Couldn't do the 7 minute walk, either. I ended up in a wheelchair and had to have a friend come get me.

So I went back today and I was able to exercise for half an hour total on three machines, HR only got up in the 120's. I am super excited about that! They wouldn't let me do the 7 minute walk this time, but I am still excited I was able to do something, wimpy as it was!

Isn't it odd how one day was totally bad and then the next time was not wonderful but I was able to stay upright and accomplish something?

Angela

Hi There,

I have had this happen a couple times and it is very scary. I have no idea what caused it, and I hope it never happens again. I find that it did happen in the mornings, right before my meds. After my meds kicked in it calmed down. In the morning I take Clonazepam (among other things), so maybe that helped?

I'm sorry these things happen to you. I hope you get the answers you are seeking.

Angela

Julie,

I am so sorry you are going through all this! Good luck tomorrow with the cardiologist, and hopefully they will help you find answers!

Angela

Just wondering, have you been on steroids for anything? Steroids can make your teeth go badly pretty quickly. That is what happened to me.

Angela

If and when they get this working, and a run time of more than one hour, this would be great for trips to the mall, for work, stuff like that. It would go places easier than a wheelchair does and you wouldn't need to self propel or have anyone push you!

Hi Julie,

I was put on Cardizem briefly, which I believe is a calcium channel blocker. Within 15 mins I was so dizzy I couldn't function and it made my tachycardia worse. My husband had to carry me to the car. When I called to let the doctor know my side effects, he told me to continue the meds, so I took three more total, then called the doctor on call (different doctor) crying because my HR was over 180. He told me to stop the Cardizem immediately and eat some salt! After that no one would prescribe anything for me until I went to Cleveland Clinic and they put me on Toprol XL, which is what I still take.

I don't remember anything about a numb mouth or anything like that. But I was really focused on my heart rate.

Good luck Julie!

Angela

I recently got a letter from Cleveland Clinic, from Dr. Jaeger's office. It doesn't make much sense to me. I am hoping someone can help me figure it out.

I have mildly decreased plasma volume and borderline low red cell mass. (?)

I have hyperkinetic circulation.

I have intact autonomic reflexes with a hyperadrenergenic response. (Does this mean I don't have POTS?)

I failed the TTT spectacularly, but all other tests on the autonomic system were normal. (?)

IST was noted from my history.

Anyone have any ideas?

Thanks

Hello,

My dentist actually seems to understand a bit of what is wrong with me. He was the one who told ME I cannot have the "regular stuff" and uses something else. I am always on edge anyway because I fear the tachycardia, but if it does come, it only lasts a few minutes and isn't too terrible. What he uses does do a good job of numbing me up.

I had neglected my teeth for a few years because my previous dentist wasn't as amazing, and I always got so sick after seeing him. Since getting the new dentist, I had a lot of work done on me, and it took a year and a half to get it all done. I had to spread it out to afford it, and I didn't like to have too many appointments too close together in case it caused POTS problems.

Mirry, I hope your next experience at the dentist goes better.

Angela

My kids have asthma, and prednisone is an amazing thing to have when there are breathing problems. I would encourage you to take it unless you start seeing some negative side effects.

That being said, I don't tolerate it well because it makes my skin feel like I have the worst sunburn ever, yet I have no rash or anything. My doctor calls it Sunburn Skin. I will still take prednisone, because breathing trumps the sunburn skin any day.

Like you, (I think it is you...) I get recurrent bronchitis and it always hits me very hard. The bronchitis will actually worsen my POTS and I start to have many more falls. I am more afraid of bronchitis than I am of prednisone.

Good luck, and let us know how you are doing

Angela

I woke up Monday morning with a stomach bug. It was a terrible vicious bug. I could not keep anything down and spent a LOT of time in the bathroom. At one point I had a fever of 103.5. The fever broke, and now I am recovering. As of today, I have lost ten pounds since Monday. I need to lose weight, but this is not the right way to do it.

Ever since being sick, my BP is up, mainly the diastolic (bottom number). Last night I had 149/103. Now it is around 140/99. Should I worry about this? Is this just because I lost a lot of fluid being so sick and need to rehydrate? Or should I be concerned about something else?

I am rehydrating, drinking Gatorade and eating salty soups since I can't tolerate solids too well.

Thanks,

Angela

Hi,

I was on Atenolol early on and it did nothing for me. They tried Cardizem and it made me much worse. Then Cleveland Clinic put me on Toprol XL and it has been a help with my "regular" tachy. I don't have blood pressure issues, high or low, so the Toprol works just fine with my BP. I still have breakthrough tachycardia when exerting myself or exercising. I would have to say that the Toprol has been the most effective medicine I have at this point.

I hope the Toprol works for you!

Angela

Hi All,

Got some results given to me over the phone today.

Blood plasma volume is mildly decreased.

Supine mild systolic hypertension.

Normal BP.

High normal diastolic.

Hyperkinetic circulation.

How do I have high systolic and diastolic and still have normal BP?

I don't understand any of this... I sure hope they follow up with a letter explaining all of it!

I welcome any suggestions.

Angela

Hello,

I am in the midst of a POTS crash, but this one is different. I am having "rushes" for lack of a better word, of high heart rates. I feel swoony, then the heart rate kicks in at about 160 for a bit, then I start shaking, then it drops back to the 110's for a while, then we do it all again. I am on Toprol XL, a tiny dose, and it usually keeps me out of 160 range unless I do something pretty strenuous. So it is odd that I am seeing such high heart rates lying down. It almost feels like an adrenaline rush. I take a small dose of Klonopin as well, but it isn't effective today.

I had a stomach bug on Thursday, and I have since started my period. Those are the only things different. Oh, I most probably exerted myself yesterday at my sons' competition. This all started after I ate dinner at a restaurant and then went back to the competition. I ended up on the floor there.

Does anyone else have any spells like this?

Lissy,

How are you feeling now? I hope you are feeling better.

Angela

I got my vaccine. The vaccine does not seem to affect me at all. The actual influenza illness really messes me up. It makes me tachycardic, dehydrated and I fall a lot. After the mess with my son last year with H1N1, my whole family is getting the vaccine this year.

Good luck,

Angela

Hi Julie,

This is the same pain in the same place. The only difference is him feeling and hearing it pop, he didn't last time.

All three of my boys have asthma, but my oldest only has mild intermittent asthma that usually only acts up when he gets a cold or something.

I may take him to Cleveland Clinic, they have a pain and diagnostic center there. So if they come up with an opening before Children's, that is what I'll do.

Angela

Hello,

I posted last year about our family's experience with "swine flu" and how it affected my oldest son. I will give a quick overview for those who didn't see. My oldest son got swine flu in June, but then seemed to get better. Soon after, he developed the post-viral pneumonia and it had complications. He developed a pleural effusion and had to have VATS surgery to clear it. He was in the hospital for almost all of July. It was a terrible time in our lives and it keeps coming back to haunt us.

In October of last year, my son developed pain on the right side of his chest that felt like someone was stabbing him every time he took a breath. We went back to doctors, no one seemed to know what was causing it. We finally got shunted to pain management who did a 4 level intercostal nerve block which seemed to do the trick.

Fast forward to now. Last Friday, he was walking to class and felt and heard a "pop" in his chest and immediate severe pain. He sent me a text message and I raced to the school and took him to the ER. He did not have a pneumothorax, and no one could find a reason for his pain so he was sent home with the instructions to take 3 motrin every 6 hours. I called the surgeon who originally did the VATS because last time this happened he blamed scar tissue and said if this happened again we might have to explore other options. He had no new ideas, and did a pain block procedure in his office. Now my son hurts more than ever. I don't know what to do. I feel so helpless, watching my son in so much pain and I can't do anything about it.

I need to get outside of Children's network and find a thoracic surgeon who will help us. Any ideas?

Thanks,

Angela

How is your potassium? Low potassium can cause muscle cramps as well.

Angela

Hi Jonathan,

One of my doctors did not want to prescribe one because he said it would make me lazy and not try to be up and about as much as I could.

I do have one, a different doctor prescribed it for me. I only use it rarely, like when I am in a bad exacerbation or I am having testing and I know I'll be wiped out afterward. I also have a walker. I only use the walker occasionally, when I am in a lesser exacerbation. It has a seat on it so I can sit when I get tired. I will also take that when I have to walk a distance.

Like everything else, it just depends on how much your doctor "listens" to you.

Angela

A doctor put me on Effexor and it made my symptoms much worse. As someone else said, we all react differently, so what is bad for me may not necessarily be bad for you.

Good luck,

Angela

So no one's had one of these?

Hello,

Can anyone give me any information on what to expect from a "sitting" TTT. Apparently I am worse since the last time I saw my doctor at Cleveland Clinic. He is ordering quite a few tests to try to get a handle on what is going on. I failed the "normal" TTT so spectacularly last time I guess they didn't feel the need to repeat that one.

Mack's Mom, he is also ordering the mast cell urine test. Finally!

He did also say he's looking for carcinomas in my urine... Is that a bad thing? What does that mean? I would have asked more questions, but I spent all morning collapsing and feeling terrible. They had to actually put me in a room instead of me waiting in the waiting room I was so bad.

Thanks,

Angela

I have written my congressman as well. Let's deluge them with letters!

I think they are thinking of POTTS, not POTS.

Hi,

I get the whole body trembling thing too. It is extremely scary, isn't it? Mine usually happen when I am "bothered" by something else, like an illness or allergy testing.

Do you take Clonazepam? That might help with the trembling when it happens.

Like you, I get sick very easily. I seem to keep it longer than others and suffer more for some reason.

Good luck with your testing.

Angela