tinkerbella

Misstraci is right with her answer. I have met many wonderful new friends of people who live near me. : )

Ash, I'm so sorry that you are having such a difficult time. I have an Omron BP arm machine that I love. My cardio only reccomends this brand. After purchase I brought it in to calibrate with his BP cuff. I'm sure he taught you proper technique for both the wrist and the arm cuff. I rembember before meds I used to go to the store and use their BP machine. My #'s would be so high. My PC would say, you couldn't be that high or you'd be dead. Well..my #'s were that high when checked throughout the day and I'm still here. Praise The Lord, this brought me to my cardio/Pots doc. Good Luck when you go back on Friday alone ; )

I would like to understand the chest pain with POTS also... I hate to tell anyone I have it. I have been sent to the ER one too many times, yet my father died of a heart attack fairly youn age. When they come on they are pretty bad, I'm always OK. I would hate to be wrong one day... Any good articles on chest pain and POTS. Hope you are doing well imapumpkin. Get Well : ) Soon.

Very interesting! Thanks for posting. The joy of Learning new information here. I love it!

((((((((((BIG HUGS))))))))) I'm so sorry to hear what u went through. I think we could all write a book on all the doctors who knew nothing about POTS. Don't let this doc destroy you. I remember one doc in an ER calling me a hyperventeator. He claimed he was highly trained to to see who was one. He said I did not need to go to Another Hospital for tests when I could get them here. My cardio had made plans for me to go to Another Major Hospital for stress tests. This doc admitted me, like he was doing me a favor. Turns out he he was an doc with an overblown ego. He may have even been a Intern Doc working the ER. Next morning when another doc walked in, I told him how I had been treated. I told him I wanted to go where my doc wanted me to have the tests. He took care of everything and was so nice to me. I was glad I told on him. I would have never had the tests I needed that showed I had POTS. Write to the hospital, as they want to know how you were treated. The doc will be talked to. Maybe you will open his eyes to what POTS is. Try to turn this around into a teaching moment, as this will most likely be the first of many. Hang in there - : )

I used to hear just a heartbeat in my ears. Then many years ago I started hearing a hissing sound and was convinced it was the telephone line. I convinced the phone co that they heard it also. lol They left and it was still there. ; ( I told my doc and he said it could be related to neuropathy. I have a lot going on with my POTS that we did not focus on that issue. Sometimes I hear both sounds. Sometimes they are louder than other times. When I'm retaining fluids they are the worst of all.

All the time. I need a GPS for all the bathrooms that are wheelchair friendly. Many are not ; (

Count me in too ; ) as I lay in bed now. I always did my best till POTS slowly took over whole body. When I look back now, I wish my mom had been dxed with this. She had a similar crappy life, but no one connected the dots. Hopefully, we can make life better for anyone else in our family who may get this by helping them get care earlier. I wasted too much precious planet time with doctors who didn't know what to do with me.

I Googled him and it took me to his other website with more information... The link you posted didn't really have info about about what he was talking about. I've always thought MS, Parkinson's and POTS were all similar in many ways. If you Google the procedure it brings up a more detailed page with a newsletter and video. So, I would guess that the above video may be older, as when they were doing testing on people. I find it interesting,and wonder if my doctor has heard of this and what he may think of this. I would like to know more, long term how well this has worked out. I'll have to keep an eye on this guy and see what happens in the future. Will these clinics open up across the country? If they are really as good as they say they are, I think they will. I think we are going to see many different types of dysautonomia clinics popping up here and there claiming to cure people. Will they? I hope and pray that someone can tame this monster that lives inside all of us who come here for support and frindship.

Very interesting.... Looks like it's in the study stage...I'll have to read about this smart doctor and pass the info on... : ) Thanks for posting. I hope it's a miracle cure for all one day.

I found taking Calcium in the middle of the night helped me to sleep much better than Benadryl. Benadryl also Lowers the seizure level in one's body if one is prone to seizures. My Vet told me that when my dog was having seizures and was taking Benadryl. I stopped taking Benadryl at that time as I was having seizure like activity myself.

What was your normal BP? When do you take your next dose of med? I know my doc told me @ night I can drop down that low. If it was Myself. I would do a set of postural signs and call them in and let my doc know what was going on before I took another dose of medication. You might be just extra sensitive to whatever you're taking. I like to play on the safe side. Let us know how you are. Many of us are med sensitive. Good Luck!

I've taken both in the past. I used to have to take midodrine before bedtime and at bedtime. I didn't like the side effects. Because I am so Medication sensitive I now use IV therapy @ home. For a while I used salt tabs and water before I got out of bed in the AM. This got harder and harder to do for me. Good Luck All!

It is MA and I'm looking @ Newton NWH, MGH , Waltham , Boston, MGH are where I'm able to get to best. Possibly Natick . : ) I'll take all names as one day I will start a group. The names will be a much needed resource . Thanks ; )

I have a problem and have taken sloflow iron. My iron stores have been 4. I 'm getting weekly iron infusions now. My cardio says that our iron stores should be @ least 200 to make our hearts work more efficiently. Right now I'm @ 14, within normal limits . I keep falling in and put of anemia. I can't wait to see how different may feel. Iron by mouth makes me itch and get a rash.

All my other doctors are fantastic!!!!! I no longer have the best PC in the World : ( The stress of new PCP not understanding me and my POTS is making my life miserable. I feel like I'm back @ step 1 again. Why are we looked at as difficult, when we require more time than the average patient. They should be able to bill or code for the time spent with us. Anyone else have this problem? Oh I miss my old doctor, she was the best one in the World! I didn't see a list of PCP's . Maybe if anyone has any names you could PM me. Thanks : )

Pumpkin, everything happens for a reason. Now those of us who didn't know can pray for you too! Hang on there and know you have friends who care here. Keep us posted! Big hugs!

Very Sad, may Simon rest in peace and have taught doctors something about POTS while here on earth. Prayers to all the family.

I hope you made out ok ... I was thinking about you last night . I used to make ice out of Gatorade. I would make ice chips in the blender with it. That way I could suck on it slowly. It would be like a slow drip of an iv. I would try to avoid the ER because of all the flu right now . If anyone has the flu and pots we have to go in for fluids . If this is becoming chronic, It may be time to have a talk with your doc about @ home infusion. We are all so dehydrated. There are so many home companies now. Even Walgreen's handles iv and deliveries. I started out very slow for years at an infusion clinic in a hospital setting. Let us know how you made out. Sending healing thoughts. Feel better soon!

I'm on iv fluids day and night with sodium now ... But, at first I didn't realize how much I was sweating , the IBS, and the swings of my BP... I knew nothing at first, and when I confessed GI issues @ my 3 rd visit . I thought that was why this monster was called POTS. We are all different, I have to be pumped up to maintain a bit of high BP to keep me from the lows and fainting. I wish you the best of luck and hope that everything works out just fine for you. ; )

Interesting, I just was going to post that I got my Shot, but the site hurts so bad . Almost like a Tetanus Shot. The site also feels warm. Just when I was going to post I Found AZgirl's post and thought once again, something else that makes You go hmmm.... I'll have to look into that. Thanks for posting.

Was just thinking after SpinnyC's post how extra Potsie I always get when I get the flu for the longest time.

My major city has issued a state of flu emergency. I had an appointment there tomorrow. I saw my cardio/POTS doctor today and I asked him should I go #1? He said, "No, he office would cancel the appointment for me. He agreed with me that where I hadn't had a flu shot, I shouldn't go. It wasn't a life or death situation and I could make another appointment even if it took 3 months. #2 I did ask his opinion about getting a flu shot now. He thought I should, due to how badly this flu is effecting people and potsies get it so much worse than everyone else. Last I checked 18 people have died in my state from the flu. If I do get it I like the preservative free one. Around here Walgreen usually has it. He also said I most likely would get symptoms for the shot for a few days. : ( It's like we have the flu all the time anyway. I have been in the hospital 2 times for the flu. Once it wasn't even the strain that was in the vaccine that year. At this point I'm more concerned about my children. I don't want to bring anything them when they visit me.I started iron infusions @ my local hospital today. Everyone was saying it was so empty. I think people were scared to come out. I'm going to flip a coin...In PAST I just took a lot of ECHINACEA. Now, I'm afraid to mix with meds. I'm going to wear masks everywhere and make a fashion statement. Wanna join me? Oh yeah, and latex free gloves too!!! Good Luck all ~

I usually can't feel anything when I have blood work done, but once I did when they hit scare tissue and I thought I would pass out. The iv nurse said, "that is what most people feel like when they get their blood drawn." I never knew that. : )

Were you on any different meds for the flu? They always give me iv flagyl till they know I really have the flu. Then my mouth tastes like metal. : ( Potsie flu is the PITS.