AJVDK

Hello All, Well I am starting to come back out of my pothole I found myself in for the last week or so. I was doing great, and then it was like I hit a brick wall. After stopping the lyme meds for a week, (now I am back on) and adjusting the beta blockers, and lots of rest I am starting to feel better. I am glad to be back on the forum. I missed you all. Question for you. For those of you that take Procrit. Do you muscles hurt the day after the shot; of do you feel more tired them normal? (I have notice these things after my shot. Was just seeing if anyone else felt this way.) I missed you all!

When I started Toprol xl I started at 12.5 three times a day. Since that time its been changes many times. I am now at 50, 50, and 75 at bed. I can saw I have learned that there have been times my doctor have back the dose down and other time my doctor have taken it higher. I learned that as my POTS changes, that how the meds have to change. My doctor is great about that. Two weeks ago I started having Tacky alot again so he increased the Toprol, and it helped some. I think the best thing is to talk to your doctor, if you both agree then go up. The thing to wacth is the high the does goes the m more problems I have seen with low b/p. I hope you start feeling better soon!

I wish you the best! Let us know how it goes after your apointments!

Hello Amber, I wanted to drop a line and say I am sorry you are having a hard time. I think it would be a great idea to see a EP to see what there thoughts are. EP's should know when it comes everthing with the electrical part of the heart. I also think it a good idea that you have a holter monter as that will allow them to see whats going on more. Remeber the doctor work for you, if you don't feel you are getting the right treatment, or the answers you need find a new one! I wish you the best!

Sorry to hear about SSDI. I understand what you are going thought. I been then. When I was turned down I was very upset! I am still waiting for mu appeal but I am thinking I am going to lost that too. ( or at least not going to hold my breath for that) I wish you the best~

I am treated together with my familt doctor and my EP doctor. They call and talk to each other, mostly I see my family doctor on a weelky to biweekly for procrit shots, and adjustment in treatment with the meds.

Hello All, Well I had been doing great the last two weeks. I been able to go for about 5-6 hours a day, been able to enjoy life again. I been able to get out a take photo?s again, and enjoy doing it for once. On Monday I started getting a cold, and each day I been getting more pain, fatigue, racing heart, headaches, dizziness, and last night I almost pasted out, I did that hole graying out thing before I pass out. Today I am so out of it. I finally got up and made it to the computer. Why is it when we get sick we get so sick? I hope this doesn?t set me back to far. I was finally starting to think; maybe I would be able to return to work. My doctor where making me wait another 60-90 days to make sure I continued to get better. I didn?t want this set back. It?s so hard on me mentally to feel good then get sick, then get better to only get sick again. Sorry just venting, Amy

I hope you are able to find out some answers when you go to the LLMD. I know that doxy been a life saver for me, but there are many side effects that go along with it. I been on doxy now for about 60 days and its starting to really help. I am finally having a life. I hope you start feeling better soon!

I get migraines, but I can go days with out anything and then all the sudden I get one. When they come on I am in so much pain. Right now the only thing that get me though is shots when I get them. I have yet to find a med that works. I also get cluster headaches. I hope you get some answers soon.

I hope you have a fast recovery, and start feeling better soon. what are they setting the pacer at? I am set working on what is best for me. Right now I am pacing at 70 beats per min. Take care!

Just wnated to drop a line and say welcome!

Here are a few..... When your hands and feet are usesd as ice packs. When your are buying compression stocking in ever color you can find. When the doctors just start asking you what meds you want to try next..... as they have given up trying.

Hello All, Have any of you ever taken Lyrica? If you have has it helped with the pain? I am starting in today, and hoping it going to help! Thanks

I agree with Lois, I also have a st judes pacemaker, I know my next one I am getting with have better coping with rapid drops. I wish you the best and I 2nd the Welcome to the pacer club! Amy

I just wanted to drop a line and let you know I am thinking about you. I also know what it is like to feel hopless when I comes to treatment. But keep fighting, and never give up, If you need to find another doctor. I found that my family doctor is the best thing. He keeps everything going, and deals with my cardio when we wil not call ! ( as for so reason they think they don't need to). Thinking of you!

Cath, I wanted to say welcome. I use to go thought bad spells, then one day I landed in a "POT HOLE" but slowing things are getting better. Are you taking any meds? So do you go to UNI in CedarFalls, IA. I grew up in Waterloo. Have you found a good doctor there to help in your treatment? A good doctor makes all the differeance in the treatment. Here is some thing that you may find that help you: http://dinet.org/what_helps.htm Well got to go! Welcome, and hope you are able to find some answers! Amy

Hello Micky, I just wanted to drop a line and say Hello and Welcome!

Sorry to hear. I will be thinking about you. I hope you start feeling better soon! Please keep us posted!

Sorry to hear. I hope you start feeling better soon! Please let us know how you are doing!

I am taking the Clonidine pacth. I have found this works best for me as I don't have as big of drop in my b/p. I as take metoprol 2 times a day to help from having tacky. I never been told to take just of I am feeling bad. The one thing it to really wacth you b/p. When I first starting taking the pill form my b/p would drop to low, so just like dizzt girl I had to skip does if my b/p was to low. I hope the clonidine works for you!

Well I talk to my doctor today, and we ae going to contuine the treatment as we have, as I finally have energy. My EKG, did show RBBB, but he said it not much different then ekg done before, he going to keep an eye on things. If not any better we will se me on Wed. Also I am just to take in easy. I been feel better in the last week, and I think I push myself to much. Today I spent most of the day sleeping and still feel teal run done. My stomach is doing better today so hopfully the doxy is not casuing the problem. I really don't want to stop the treatment. Thanks for all of you thoughts I will keep you all posted!

I am glad you are starting to feel better. I hope yo are able to find someone to do the treaments out of your home that would be great. I will be thinking able you!

Emily, I am only taking 100 mg twice and day. I just started my 2nd month of treatment. I am not sure if that could cause that much problems. Could it? I am going to call the doctor in the am, and see whats going on. I am still feeling very odd, and am still having chest pain/ prussure off and on, I don't want to go to the ER as half the time it a bad deal. Also today I begain to get very sick to my tummy. So have been in the bathroom alot. I am hoping that it will pass soon. I am hoping that monday am will come soon, and can find whats going on. Talk to you later! Amy

Congrats I am happy for you! Amy

Well thats the thing she was told I has a pacemaker and even asked me if I had one, I am just wondering if they read it right, thats why I am going to have my doctor call and get a copy faxed to see whats going on. I have not had a ekg done in 3-4 months, so I am not sure if things could change or not? I will let you all know what I find out!