Angelika_23

I heartily second MomtoGuiliana's comment. Potassium can be a stinker at times. Also, I was taken off asthma meds and Sudafed because they can also cause a high heart rate. Could they be contributing now? If it isn't that, then maybe the beta blocker might be a good idea. I am on a small dose of Toprol XL and it does help. Good Luck, Angela

Hi Angela, Good to hear from you again. Or not, because that means you are not doing well. Dr. Grubb spent a lot of time with me and my husband, and sent literature to my home after the visit. He was incredibly patient and kind. He had a lot of information about the nervous system and how it is affected. That being said, he fixated on my weight (I am one of the few overweight), and he didn't do any diagnostic testing. I had to get that from Vanderbilt and Cleveland Clinic. The office is terrible about returning phone calls. I did like his insight into things, and do continue to see him. I find that he listens to me more than his NP does. Are you aware, though, that he has a 3 year waitlist? Good Luck, Angela

I would think balance would be a huge issue, second to the standing. I am so wobbly that my husband sings the weeble-wobble song to me on a regular basis. I would for sure crash that thing!

Thanks for the advice Emy. I have not tried it yet, as my bronchitis symptoms seem to be waning. Yay! However, my HR and BP are too high. BP is exactly normal when laying down, 120/74 or something like that, with a HR of 75, and when I stand, the BP goes to 136/96 with a HR of 109. Last night before bed BP was 166/112! I had thought that once the coughing stopped the HR and BP would fall into line (as best they can, anyway...) but that doesn't seem to be happening. Any ideas? Angela

Would you believe the doctor never called??? I am used to getting calls from her up until bedtime sometimes. But I waited and she never called. I will give her until lunch today, then I am going to call her office again and try to get through the irritable secretary. Yesterday I was coughing thick white stuff, and today it is starting to turn color again. Grrrr. I have started tracking HR and BP at the advice of Dr. Biaggiano. My HR jumps by 40 bpm upon standing. This is on a beta blocker. I wish we could get this all straightened out. Thanks everyone Angela

Hi, and welcome to the forum! I got my diagnoses at Cleveland Clinic, Dr. Grubb (in Toledo, OH) and Vanderbilt. The local docs here in my area just aren't familiar with dysautonomia. Good luck! Angela

I made it through the night without having to go to the ER. I just got home from having my chest x ray done. I am now waiting for the doctor to call. I am tired, I only got about 2 hours of sleep because it is harder to breathe when I am laying down. Nothing to do now but wait... Thanks everyone, Angela

Hello, I have had this bronchitis off and on since the beginning of March. I am on my 4th antibiotic. Tonight, I've started running a low grade fever and my chest is heavy. My coughing is hurting my head. My HR is 130. I don't want to know what my BP is. I called the pulm doc, she said she is ordering a chest x-ray first thing tomorrow morning. If I get worse I am to go into the ER. I am afraid. What is this and why won't it go away? I am guessing the fever and coughing has spiked my HR for me. I hope it comes down, right now I have passed the adrenaline threshold and I'm shaking. I am trying to see if I can get cooled down if that will help the HR. I really really don't want to go to the hospital tonight. Please send positive vibes my way. Angela

Got the walker. A red one that rolls, but it has brakes if you push down on it. It has a seat, which is a handly little feature. I feel much more stable walking when I use it. I hate having to use it, but it does seem to make my illness less invisible to others. My husband seems bothered by it, and doesn't want me to use it when we are out together. I am on Keflex, but the doctor has decided to switch me to Bactrim. Anyone have any experience with Bactrim? Angela

Well, fell again this morning in a very public place. Was holding onto hubby's arm, but fell anyway. It hurt. But nothing broken, just more bruises. This is becoming my life. I don't want to leave the house. At least if I fall here, its on carpet. When I fall out of the house, it is usually on concrete. Angela

Hi Reen, The coughing had calmed down, but started up again today, as well as a low grade fever. I am so distraught right now. I have been sick for about 6 weeks now. Enough is enough! I am tired of walking around like I'm drunk and falling down and hurting myself. Now that the cough is back I am very afraid the falling will get worse. I fall out of the blue, coughing is not always present when it happens. My friend wants me to borrow her walker (from when she had surgery) but I am mentally cringing from the idea of having to use one. I know, it sounds terrible. If it can help, maybe I should try it but part of me is so determined not to let this illness take anything else away from me. Thanks, Angela

Hi I believe that the coughing is the problem. When I cough, my HR goes crazy and I get lightheaded. When my POTS is aggravated, I do have spells where I just "drop". Most of the time I don't lose consciousness, I just hit the ground and am a little disoriented. I used to have warning when I was going to drop, but lately the warnings have gone away. I am getting really concerned about falling. I am trying to figure out a way to stay safe while I am up and about. Because of one of my recent falls I may have to have knee surgery. I now have an ugly knee brace that I have to wear until my next Dr appointment. Does anyone have any suggestions as to something I can do to keep myself safe when I can fall at any time (while standing)? Carry pillows? Ha ha. Oh, Mkoven I do have Chiari, you are correct. I am not sure how that plays into this. I can't keep it all straight. Thanks, Angela

Hello, I came down with bronchitis around March 3rd. The really bad kind. It took 3 rounds of antibiotics and an inhaler to make it manageable. During that time, I started having my "dropping" spells. I had warning, knew what was coming and had time to get down. As time progressed, I started dropping, sometimes passing out, without warning. My husband has found me on the floor a couple of times, and I dropped in public once. This is new for me. My worst fall was two weeks ago. I fell down some big steps and onto a sidewalk. I had bruised knees, gravel embedded in my palms and terrible back and neck pain. Thank Goodness I didn't get majorly hurt. I do have a funny little hard bump on my knee, not sure what it is... So today I tumbled down the steps. They are carpeted, and there are only 7. But this is getting so old! I thought since the bronchitis is trying to resolve my symptoms would get better. I hope this isn't here to stay. And for more fun, I got some itchy skin thing from being on too many antibiotics. Sorry for ranting, Angela

Have you tried doing a search for Vanderbilt? I know Melissa has a thread called "The Vanderbilt Chronicles" which is very interesting reading. Angela

Beware that you only use Afrin for 3 days, then discontinue or you will get terrible rebound affects. Our pulmonary doc was very very clear about this when we use it for my husband or the kids. Afrin is not meant for extended use. Good luck, Angela

From my personal experience, flu makes my POTS symptoms worse. I hope your husband is feeling better. Angela

I have actually been told that probiotics can cause bloating. I believe that is true since I started taking them with my second round of antibiotics and my tummy is uncomfortable.

Hello, Cardizem made me MUCH worse. It drove my HR way up and made me very sick and dizzy. I now take Toprol XL, it seems to do a better job. Glad to hear they found a cause for your "anxiety attacks". I was diagnosed with anxiety for 6 years before they figured out something else was going on. I don't want to tell you not to try the Cardizem, just be careful. Hopefully you won't react the same way I did. Good luck, Angela

Yes, this happens to me too. I am getting over a bad bronchitis and have had problems, I've actually collapsed once in public. I know I get tachycardic when I cough. I hope you are feeling better. Angela

I am on my second round of antibiotics for this bronchitis. First I was on Zithromycin, now I am on Omnicef. I just went to the restroom and my stool is the color of ground raw hamburger and has a sweet smell, doesn't smell bad. I have never had anything like this before. I have called my PCP and I'm waiting for them to call me back. I did buy a bottle of probiotics and I took the first one yesterday. Do those change your stool color? It doesn't say on the box. I hope nothing is messing with my POTS. I am still not feeling too well and having POT-sy episodes. I have managed to stay out of the hospital and would like to keep it that way. Angela

Just a question, but did it slow her HR too much? I had this problem when first on Metoprolol. I thought my HR was too high, but actually it was dipping in the 30's... What a terrible feeling. I had to have the dose reduced to 12.5 mg which is tiny, but is what my body needs. I was at work when it happened, luckily I had a BP monitor/HR monitor with me and figured out what was going on. The odd thing was, my symptoms of low HR were very similar to those of high HR for me. Good luck, Angela

Maxine, I have the SAME THING! I have to go get a CT scan every year so they can keep an eye on "them". It was just one, now it is three. I try really hard not to think too much about it. They assure me they are cysts and nothing to worry about. Angela

Thanks, She is out of the hospital now and back in the extended care center. We are now running in circles trying to get her into assisted living while the facility isn't raising a finger to help us get the information we need. I am getting over a virus of some sort that knocked me flat for about a week, but am feeling better now. Still tired, but improved. And, I did not have to go to the hospital! Yay! Angela

Yep, I'm sick again. This time, I want to stay out of the hospital. Any suggestions? It seems like anytime I get an illness I end up in the hospital. I have a plastic 40 oz tumbler of water I am keeping full at bedside. I am also drinking G2 at intervals. Food is harder, it is so hard to eat when I feel like I have shards of glass in the back of my throat. This just started yesterday. My HR and blood pressure are already up. Why does it do that??? Doc put me on Z-Pack. I will start eating lots of yogurt. Someone suggested a yummy supplement on another thread but I can't find it. My family is overjoyed because I have no voice. Angela

You could do what I did, and stagger in the office in the throes of a POTS issue barely able to stand with a resting HR of 140. Got sent straight to hospital. I got my permanant placard with no fuss on my next office visit. Angela