AJVDK

Daniel, I wanted to drop aline and say hello. I am sorry you have been down about what others and yourself have to go though having POTS. I can say there are days that I get down, and there are the day that I can do things. Everyone is different some are working with little changes and others are fullyunable to do anything. The problem is it hard to say, as so many people have POTS with other things like Lymes, MS, NSC, PAF, EDS, and the list can go on. On thing that has helped me is reading more about POTS, and the differnt forms of POTS. Here is a artical by Dr. Grubb- http://www.medscape.com/viewarticle/522421 Quality of life in patients with postural tachycardia syndrome http://www.mayoclinicproceedings.com/Abstr...stract&UID= Hope this help some! Keep your head up! Amy

Well here we go again. I started with a migraine on Friday which I went to the doctor to get a pain shot, as I took the pain pills and they did nothing. So I had to get the shot,. Over the weekend I was still able to do some things, but found myself sleeping 12 hours both nights and just being very sore. On Sunday I was outside for a while, watering the grass, and flowers, and I began the heart racing, and heart racing. I went inside and lye down. Monday was another thing also. I was very slow to get up, and just could get going. I was finally able to get up and go to the store to get some food, up that was all I got done. I was done for the day. Then least night I begin to get the shortness of breath, and anther migraine with all the neck pain as well. When I got up today, I was sick to my stomach and had a full blown migraine. I called the doctor and they had me come in for another pain shot. So now I am somewhat out of it due to the shot. I had to start using the oxygen today, as the shortness of breath got worse. I am just so down. I was hoping things where finally going to stay better. I know I should have know, I just so badly want to feel somewhat better. Over the weekend I was asked about if I was coming back to work anytime soon. I said I was trying to if I can get everything to the point I am ready. U was offered a great job, and it would start in 60-90 days. But I know there is know way. I am just so tried, and so badly want to get back to work. Also the down side to all this is if I crashed, or things get worse, the next thing we ( doctors and I) had a plan worked out) are trying is saline, with a PICC line. I am now even more worried after hearing about Melissa ( Sunfish) I am scared. But I am also worried about not getting better. I am sorry for venting as many of you are where I am , or worse. I just don?t know what to do. Plus I am just down/ depressed as I was hoping I was finally turning the corner.

Melissa, Sorry to hear you had to have a PICC Line placed again. I hope things are going to start looking up, and that you wil be able to start you 2nd round of IVIG. I am glad to you got you own room again. I have never had to share, I could not image what that would be like. Lucky where we live they are all single rooms. Even when my son was in the NICU, and PICU ( my little sickly boy) they have all single rooms too. It's nice so family can stay, or so you can get you rest. Your are in my thoughts! Keep getting better! Amy Dumb question why is a PICC line hard to take care of then a central line?

I also agree with everyone else. I have chest pain on and off, but with the o2 at home and knowing its just the way my body acts is one thing. I think you need to make sure it nothing else. Alot of things can casue chest pain, I would talk to a doctor or go to the ER to make sure it nothing else. I hope you start feeling better soon!

Thanks for the update Emily! Glad to here Melissa is doing better, l hope she can keep the central line! Please keep us posted!

Sorry to hear about your bad day. I ahd the same thing when I took Zithromax. I got cramps so bad I just rolled around in the bed. I could not even sleep due to how bad they where. I had to stop taking in. With the other meds you are on I would call the doctor and let them know how you feel and see if there is somthing over the counter, or if there is another med they can call in that is no going to bother you as much. Hope you start feeling better soon!

Hello, and Welcome! I am glad you found us! ( Sorry I don't have much to add to wanted to say Hello)

Melissa, Hang in there, you are in my thoughts! Hope you start feeling better soon! Michelle, Thanks for the update.

I think it is some of the treatment for lyme's. I am still in alot of pain, in the muscels and joints, but I finally have the energy to go. TO get up and do things. The bad thing is I keep getting this hreat racing ever time I do anything for a while. I am hoping that it me being out of shape, but last night I had to lay down because I was going to pass out from my heart rate was so fast. I am hoping its just out of shape, but its more likly the POTS. Will see I am so hoping things are going to get better. I would love to be able to go back to work someday! Who knows, let hope for more good days!

I wanted to drop a line and let you know that I got really depressed like hospital depressed the first time I took them ( High does of toprol xl, I think it was about 2 1/2 weeks into the I was so depressed, I couldn't take it, needless to say I ended up into the hospital. What my cardio and I learned it that the BB make me depressed. So know I always take a SSRI, or mood stablizer with the BB, when they increase the BB the also the SSRI. I know it may sound odd, but it has helped, and I have no problems feeling crasy in over 3 years. Just a thought for you.

Thanks for the all your post. I been thinking tonight that when I feel better, I tend to forget how bad I have felt. Then when I am sick I forget about the good days. I am going to try hard this time to hold on to the good times. I am hoping I will not crash, that would be great, but I can't beleive how much better I am doing. Just 3 weeks ago I was in a wheel chair to go anywhere. Here I am now up and around. I am being slowed down, buy the fact my body is so out of shape for being sick so long. I am hoping that things keep getting better, When I saw my doctor on Thursday, he could not beleive the change also. He was happy, but said let see you back next week to see how you are doing and to keep the meds the same till then. So I am hoping things will stay the same!

Well, Things are really starting to look up here. I have a great week, other then some mirganes things are going great. I am scared that I am going to crash, but also I think we need to take these time and run with them! Today I went to work with my husband ( long story, but it was an event that you could bring your family) and I had a blast. I forgot how much fun you can have. I saw alot of my old co-workers, as my husband works for the same company I did. It was nice to see old friends and get caught back up with everyone. Also I had a good time with my son, and he is so happy to finally have mom up and going. I hoe this last it would be great!

I have never had the test, but I wanted to drop a line and say I am happy for you that you appoitment went well. I am hope that you will find some answers to everything going on! I wish you the best and please keep us posted as you find out!

Congrats! I am happy for you!

Well I been doing really good for the last week. I have finaaly had some energy. I am having alot of muscel and joint pain, but I been told that can be due to the doxycycline. I been able to get out of the house, WITHOUT THE WHEELCHAIR!!!! So thats been great. The done side is even feeling alittle bit better I am still getting the on going migraines. I am taking high mg's of pain pills with little improvement, and even know I am waiting on my doctor to call to see if I can come on for a pain shot as I am in so much pain. I am hoping it will go away soon. I am happy though that alot of the POts stuff is getting better. Its been a long time sicne I have felt this good. So I am going to go with it and hope it last, but know it may only be for a while, but you go to take what you get! Thought I would give you all an update on how things are going! Hope you all have a great weekend!

Where you live are there free clinic, of clinic on a pay scale depending on what you make? Also there are companies that if you need meds you can try to apply for free or reduce cost on meds. A good firend of mine goes to the free clinic here, ans they gave here a card for meds. Her meds are cheaped then my copays. She gets mes from $4-20. So just an idea! Hope things start looking up for you soon!

I would talk to your doctor. Sometimes when I start meds I get side effect that will go away woth time, but try to ask your doctor, as there are other meds they can try if that one does not work! I hope you start feeling better soon.

I was on prednesone a few weeks ago, and it didn't casue any problems. I am not sure how it effect POTS, but I did ok on it.

I have this problem in the past also. Some things that helped me, was sleeping pills from the doctor, rying to go to sleep every night the same time, oxygen on bad nights, and drink lots of water. Next time you go to the doctor you should talk to your doctor and see if they have any ideas to help! Hope you night start getting better soon!

Hello, When I started looking I thought the same thing. What I did was order a ID band and then got glass beads that I liked and spacers and made my own. I have worn my every day that way for over 2 years now. What mine says is on the front side it has my name, pacemaker, no mri, ( but you could put what ever there) on the back side of mine it has my cardo's name, number, adress, and medical record number ( this way they get my medical records right away, plus it's come in handy if I forget my doctors number, it always on my ID band.) I know there are many others that where them, hopfully they can also help! Good luck!

Ok Buggy Mouse, I am going to take your word for the spiders, but I still don't like them. We have spiders all over the back side of the house. O'well at least not in the house! It's kind of nice thoug I did learn some new things about spiders! It I have a question I posting a picture of my spiders! Talk to you later! One how does not like Spiders! (Amy)

Just wanted to drop a line and say welcome. Also I am sorry to hear about your set back. I Know mine come from stress, when I don't get enogh rest, and heat it the big one for me! I hope things start getting better for you soon!

I think you should talk to you doctor and just ask. I know last month the "peeing your pants happen twice" both times I didn't know I even had to go. My doctor told me not to worry at this point but it where to contiune to let him know. As for me it only happen those two time that I can remeber and that was it. I hope you are able to find out what is casuing your problems!

I would scream to, I am scared of spiders, my son will even put the fake ones in my bed, to try to scare me! ( He thinks is funny)

Hello Dave! I just wanted to say welcome!