Mydoggielovesme2

I have never heard of. What is it?

Doesn't it feel good to have an answer finally! A direction to go. I hope the meds help to stabilize your episodes, and you get to feeling better soon. Fainting was my first symptom of POTS. And I passed out on the TTT as they were raising me up and the Dr was still explaining the procedure. Hehe.....boy did he get a surprise!

Wow, hope the appt goes well for you! Just make sure to list ALL your symptoms. All the meds past and current-side effects, ect. And your medicial records are very important.

I agree. We need exercise, but it can be very hard to get started. After my visit in March to Mayo, I got a recumbent bike for home. Drs orders. I could only do a couple of minutes to start with, and my husband had to be there in case I passed out. But I was determined to make it work. As of July I was able to go 4 miles and 20 min. But the best thing is that I was noticing POTS improvements. Just small things, but improvements non the less. Unfortunately I came down with a severe case of shingles 10 days ago and am flat on my back. Not only from the shingles, but it has put me into a major POTS flare. I feel like I'm going to be back a square one probably as far as the exercise, but I know it's worth the effort.

Oh Yes! I am going through this right now. I try not to take anything anymore due to reactions. I find since POTS, that even if I can tolerate something for a time, I usually end up having a reaction to it with in a few weeks....Then I got shingles this weekend, and Drs have prescribed 6 different meds. I am so miserable from the shingles that I am doing the meds, but I look at them and get so scared, it takes me sometimes up to an hr before I finally get the courage to swallow them. I'm just waiting for the hammer to fall. So you are not alone in your fears. But I also know that many on this forum have had great success with the midodrine. I wish you the best in whatever you decide to do.

Hello Packersfan,Welcome to the forum. Sorry to hear about your problems, but I'm glad you found us. I too have days that I cannt put a specific cause on, just a overall feeling of, well, crappiness, as you say. {:^) it's very hard to deal with dysautonomia and not worry. Thats why having a place like this is so important. I hope you will be able to find the support and information you need. Hang in there.

Just got back from Drs. Now they put me on Gabapentin, prednisone, promethazine along with the Famvir and Vicodin. OMG! Please.... Any comments thoughts about any of these. If I have an allergic reaction, how will I be able to tell which one its from? I'm NOT a med taker, but with shingles, the Dr said there was no choice.

Thank you all. (Thankfully I had not started the prep) I had to stop taking the Vicodin. Not only did it make me feel so weird inside, then I started getting very sick to stomach. The shingles are spreading. Hopefully the med for that will kick in soon. I look like a scary freak. Shingles on rt side of chest, neck, head, and now spreading to face.

Thank you badhbt, and ps23, I REALLY appreciate the advise.

I too had the same fears, as well as embarrassment. But the more I got out and about, the more freedom I felt, those feelings started to dissipate. Especially since it lets me do more things with my family. Don't let what you think other people think keep you from having as full and happy life as possible. Remember, those who do not suffer from a chronic illness will truely never understand anyway. So do whatever it takes to make YOU happy and comfortable.

Cannot believe this. Supposed to have colonoscopy and EGD Monday am. (That's another post) Then this am woke up with a rash on my neck. I've been having pain in the back of my neck and head, but with everything else going on, I just ignored it. Well there is no ignoring it now. I had forgotten just how painful shingles are. On call Dr put me on Famvir and Vicodin, and told me to cancel the procedures. I don't know about the rest of you, but I am so tired of all this!

Looneymom, so glad things are starting to fall into place for you. You are a great mom, and I applaud all your continued efforts to help your son.

Oh yes. But it's one of the many symptoms I've learned to deal with over the years. The first year was the worst, because no matter what anyone told me, I was just sure I was dying. Deep breathing and visualization help. And just keep telling yourself that you will be ok, it's not 'really' your heart. Hang in there. You are not alone.

UPDATE: Found out this am that the Dr ordered anesthesia sedation for tests, and that I can have nothing to drink from midnight on, until tests complete. In talking to the nurses at the hosp about this, they suggested I speak to the Dr and see if he would admit me for IVs while doing the prep. Well he said no, that there is no need. Now I am REALLY afraid. I knew he did not understands when I tried to explain POTS to him. I get sooooo symptomatic when I'm dehydrated. What to do????? I'm I making to much of this?

How wonderful for you Margie! So nice to hear that someone is better. Hope things continue to improve every day. Best of luck to you!

Thank you all for the advice. My GI Dr is new to me. Only had one appt with him, and that's when these tests were ordered. Unfortunately I was his last appt for the day, so he was tired, but he did let me explain POTS to him. Then he said there is nothing to worry about, which makes me worry that he didn't get it. Thankfully I am the first appt in the AM.

I drink water all night long, because I too have to get up several times to go pee. I also try to eat something salty before bed. And before setting a foot on the floor in the am, drink pedialite. No easy answer, because sounds like we all still wake up dehydrated. {:<(

Hi All, Hope this day finds you doing fairly well. {:-) I just have a quick question, I have to have the above procedures Monday and wondering if there is any suggestions to help a potsy get thru it easier. Last EGD I had I was awake because BP so low. That was a rough experience. Of course this time I will have to be asleep because of colonoscopy. I'm pretty nervous about it. I have such a fear of anesthesia. Thanks in advance.

Just heard we lost 19 firefighters in Az tonight. My heart is so heavy. There are so many fires in the western half of the US right now. With hundreds of firefighters putting their lives on the line to help. Please keep them in your prayers. This is one of the worst fire season, and with this drought,and record heat, I'm sure we are going to have even more fires.

Thank you!! You always find the most interesting things. Appreciate that you share.

How I wish we had an organic store to buy from! Try to get as much as I can in local stores, and have a small garden.

Use it every day. Was recommended to me when at Mayo. For those going gluten free, use caution, only some are GF.

Oh yes. Hate those darn critters! Swell up so bad. Twice to three times worse than most people. But since so sensitive to chemicals, I can't use bug spray, so listerine is my friend. Just spary in the area where you are going to be. They hate it.

I love living in Colorado. But I hate the feeling of dread these past few summers of drought has given me. Every time I hear someone set off a firework (which is illegal) I hold my breath wondering if this will start the next big fire.

Tachy I hope and pray all is well today. They seem to be getting better control of the fire now. Hang in there.

When I was first diagnosed, I was told NO caffeine at all. That included chocolate. But the past year, my BP has been so low, I started drinking a small amount of caffeine again. I actually use half regular and half decaf to make my one cup, and only have 3-4 times a wk.