AJVDK

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

Morgan,

Gee, welcome to the Pacer Club. I am sure it will help with the pauses, which were probably a byproduct of the ablation.

This past week, I changed cardiologists. I have a St. Judes pacemaker because my doctor liked them because he had a former St. Jude tech on the hospital staff. My new cardiologist told me that Medtronics has a feature that better copes with rapid drops in heart rate--something that would probably be good for a person with POTS.

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!

Congrats! Thats great! I am happy for you that Dr. Grubb is now covered!

Great Photo's Nina, Before long you are going to have to change your name to mighty bug photographer! THanks for sharing your photo's!

Well I had a really bad night last night. I woke up to feeling like I could breath, and someone was standing on my chest. I could get it to go away. I got up out of bed and took a bath, I took an extra beta blocker, and I then went and lied back down, ands it went away. I went back to sleep only to have it happen again. It went on this way when I got up. So around noon I went to a urgent care center, as I didn?t feel I need to go to a er. I was called back; the RN said I looked too young to have heart problems. Then she goes on to tell me I am the youngest person she has met whit a pacemaker. She never asked what meds I was taking and says I am going to go get the doctor. I was like ok. The doctor comes it and said what you ate last night so I told here, I had stake, and corn around 7:00pm; she said well it could be heartburn. I was dumb founded but, just sat there, and then she asked it I am feeling down or scared. I was like NO! So then she goes with you history we are going to do an EKG, but I am sure there will be nothing wrong.

So I waited about 15 mins, for the RN to come and do the EKG. She printed one out and said well I think I am going to do a 2nd one. (I am like ok?) So she does and says well it looked ok, but the doctor needs to talk to you about what it shows. (Looks ok but the doctor needs to talk to you?) So anyways I wait again, and then the doctor comes in and asked how long I have had a heart block. I was like what? I have never been told I have had a heart block. So she tells me the EKG shows I have Right Bundle Branch heart Block. Then she goes I want to to go see your cardio the first part of the week and have another ekg done. Then she goes on to say well don?t worry about it treatment would be a pacemaker most of the time, and you all ready have one. (I am like ok???) Then she tells me to go get some over the counter meds for heart burn, and writes a script for Xanax, and tells me to take it if I get stressed out.

So needless to say I am more confused then when I went. I am going to call my doctor Monday am and have them get a copy of the EKG, and have them read it and go from here. SO who knows? I am just like how can you tell some one the have heart block, heartburn, and they are stressed out? So that was my day. I am off to bed now to try to get some sleep. Thank you, listing to my venting.

Nina,

Gald to here you are feeling better! You and you bugs?? No I think its great you have something you enjoy taking picture of. Some time you will have to post some more new one and give us another lesson.

How you keep feeling better!

I went to the doctor today. Things are slowing getting better. I am now able to get up and do things about 4-5 hours a day. My doctor believes it?s due to the Doxycycline, (treatment med for lyme?s.) So we are going to try it for another 30 days and see what happens. Also he said the reason my heart is racing again is SVT. SO we will have to wait and see.

So I am hoping things are still going to keep getting better. He did say today all the damage done, to heart and ect, I will not get back, but I could hopefully have a better life if the treatment keeps working. I may never work again, but it I can do something?s, and be able to be up walking that?s all I need! So finally, some good news. I go back in two weeks; I hope thing keep getting better!