all4family

Hi Julie, I am so happy you have found something that will hopefully help. I have thought of lymes for myself also, but have so many fires to put out I have never asked about it. Please let us know how Mack does on them. I will be praying for him. Hugs Suzy

Cipro is a Floraquinolin (sp) and a friend of mine sent me this site, and another that I can't find right now because she knew I was looking for an antibiotic to take. It is very common to have central nervous system side effects on this drug. I am with Bella Mia I won't take these drugs. I took one once, and that was the last time. I understand where your friend is coming from, and sure hope that she can find something that works. I am in the same boat with her, because I have had a reaction to pencillin, and am trying to figure out what I can take. Let me know if she finds something. I would like to know what I might be able to try. I feel for her. Suzy http://fqvictims.org/fqvictims/index.htm

Hi AJW, thank you so much for the well wishes. Today wasn't that day unfortunatly. I went to the dentist, with my list of drugs that are metabolised by the cyp2d6 gene I am missing, and told him about my concerns, and the antibiotics issue. He said I should be just fine without an antibiotic, and wasn't concerned, but didn't seem to want to be the one to give me the novacain. He said if I would be more comfortable he could refer me to an oral surgeon, and that he has emergency equipment just in case I do have some sort of a reaction to something. He said he was comfortable doing it though. I decided to go to the oral surgeon, and at least talk to him, and if it doesn't work out he said I could come back there. That will also give me time to get a new cardiologist, and hopefully that will give me the reassurance I need. I don't know why I am so scared. Maybe because every decision I make involving medication ends up bad for me. It would sure be nice if there were some easier way to treat difficult patients like me. UUGGHHH. Jana, I hope you appointment went well. I hope you all are doing good, and thank you all for the support and listening. Hugs Suzy

Hi Jan, I am so sorry that having that procedure done made you feel worse....I was supposed to have something like that done where I had something down my throat, but I never got through with the endoscopy...I guess they didn't want me throwing any more doctors around the room! I am so glad you understand why I disapear sometimes....thank you for the understanding. I am always thinking of you and everyone on here. Hoping we could all just feel better. Well when it rains it pours. I was woken up this morning by a phone call from my husband. He needed me to come and get him, and take him to the hospital. Soooo that is where I was all day today, and I never got a chance to call the dentist. But I figure things always happen for a reason, so maybe I just need to go in, and get it done. The worse part was my husband is still having the same problem, (its a bleeding problem), and all they did after a whole day at the hospital was check his blood counts!!!! UUUUUGGGGGHHHHH!!!! I hope you all are having a better day! Hugs Suzy

It's my life, Thank you so much. I cannot tell you how much reassurance you gave me. I wasn't sure who was right, the dentist who originally said I don't need an antibiotic, or the cardiologist, who told me this some time ago. The dentist said as long as I am not having pain it is ok, which I am having pain, but it comes and goes, making me think it is not infection. I think there is an abcess under the tooth, but I don't know if that makes any difference. I read the article, and yes, it is much more reassuring to read something that is not a horror story. I can't even tell you how much better this makes me feel. I will still call my dentist tomorrow, but with much less fear! I know this is not medical advice, but it sure helps me. Thank you so much. hugs, and thanks Suzy

Its my life, ( I love your name ) Thank you! that would give me such a great deal of reassurance! I have a, as my cardiologist wrote very mild aortic valve insuficency. It is a one to 2. On my last Echo I had mild leaflet thickening, and my mitral valve, and tricuspic valve also had "trace" insuficency. I don't know if that was new or not. I don't have any parts that are not my own. I have never had a surgery, or anything like that. If I hadn't started fainting, and a very aware doctor hadn't heard the murmer, (because most don't it's really quiet.) I would never have known I had this. Every time I look for information on this I end up finding stories like the guy who's mom had dental work, and 2 days later had a abcess on her brain, had brain surgery to remove it, and died a week later! So although I am looking for something to reasure myself I end up scaring myself to death! I cannot tell you how much this means to me! THANK YOU!! Hugs Suzy

(((((((((((Janie)))))))))))) thank you, thank you, thank you!

I'd love to have a service dog especially for if I faint. I can't tell you how many things I avoid because the "what if" senario. I really like to spend time alone, but have fainted alone before, and it is scarey. That would sure give me tons of comfort. Suzy

Hi Janie, the dentist that seen me before, and who is going to pull my tooth, said when I seen him way back in February, that I didn't need to take one, because I didn't have an artficial valve. But at my cardologist office they keep acting like it is insane not to take one. The whole subject wouldn't have come up if my tooth wasn't hurting. But unfortunatly in trying to find somethng to reassure myself that I will be ok without them I end up finding frightening stories about not taking antibiotics. I can try calling his office again on Monday, he should be back in town. I just have to get through the angry receptionist. I tried to bring my paperwork for my medication problems in a few months ago, so the dentist could look at them, but she wouldn't take them, that is why I waited to do this. I thought I had to go to a doctor for the antibiotic, because the receptionist wouldn't even look at the paperwork. Sometimes I feel like I am trying to knock down a brick wall with a feather! Thank you for your help. The last time I took an antibiotic I only took 2 pills, and for the next year about maybe less, I was sooooo sick, and that is when my skin blisters started, and my liver enzymes were elevated so about 5 different doctors kept testing me for hepatitis...you all will be happy to know I don't have it! And I started vomitting again. So I know this stuff isn't just me being nervous, which I am. Anyways...thank you thank you...you are such a nice person. Hi Jana, well if all goes right we will both have sore faces around the same time! So you can take less, and still be covered ok? That would be easier for me if I could at least take less. I will be thinking of you too. Let me know how yours goes too...Take care, Hugs Suzy

Hi Jana, Sorry you went through this also. But I think that is funny we both have appointments on the same day. I won't feel so alone now! I really wish I didn't have such a hard time taking stuff. It really makes me nervous, because of how sick I have gotten before on medicine. I am thinking that the doctors are probably nervous about prescrbing stuff too, but they can't be more nervous then me! I hope your appointment goes really well for you. Mine is at 2 in the afternoon. If you don't mind me asking what antibiotic did you get?? Did you read the newer guidlines set out by the american Heart institute? Says not so many people need antibiotics. I think though if you have an implantable device that you would still need one. http://www.brightsurf.com/news/headlines/3...procedures.html I found this trying to figure out what to do on my own. Take care, and thank you for the support. Hugs Suzy

pat57 and Firewatcher, thank you for the support. Janie, the being outside wasn't too bad. The weather was nice, and I was able to get in my car. I just didn't want to wake my family, and figured I wasn't going to be able to sleep anyways.....but it seemed to fit in with how things were going for me. The thing I don't understand is there are 4 cardiologsts in the same office. Why couldn't they just let me see another one? Especially consdering my concern was for bacterial endocarditis. I don't see how that does not concern them. They are the ones who told me I need antibiotics. In fact the first time I was on the phone with the nurse she said just make sure you take something for the procedure or all kinds of bad things will let loose in you ! But I found new information from the American Heart Institute that I may not need to take an antibiotic. So My appointment is in 3 days, and no one will give me anything, or even see me, which is the same thing that happens when I have tried this before. Which is why I am so nervous. They tell me to take an antibiotic, but won't give it to me. Something doesn't seem right about that. Yes I have an apointment with a D.O. on August 15th. I am hoping that this will be a good local doctor for me. And yes I plan on keeping the dental appointment, but am scared to death about if I will be O.K. without an antibiotic. Thank you for your support, and concern. I hope you take care also, and I hope things have been going good for you. Hugs Suzy

Things have been crazy for me. Mostly have been down sick with dysautonomia stuff, but it is hard to tell where one thing begins, and another ends. My broken tooth decided it was going to hurt in a way that no one should ever have to hurt. But it finally spurred me into action. I thought for sure because the pain was all over my head and chest, that there was infection in my heart. Soooo....I called my dentist, and got an appointment, for the 29th of this month. Then I called and got a appointment with a DO, so I would have a local doctor! yay! Then I called my cardiologist to see about getting an antibiotic, which started a nightmare and reminded me why I don't keep trying to get help. They said my cardiologist was out of town, but I talked to the nurse. She said sounds like you are making yourself sick with your tooth(why is it always my fault?). Call your dentist, and get an antibiotic. So I called there, and he was also out of town. I explained what the nurse at the cardiologist had said, so she talked to the other dentist in the office. I didn't get a chance to explain about me and medications to her, and she had already called in a prescription for clydimiacin. I had read not to take it with liver problems, so asked for something else, which made her mad, and she didn't call me back. So I had to go to the pharmacy to see if it had been changed. It had to a cephalaspore, which said if you have had any reaction to penecillin not to take it. Plus it was 500mg, to be taken 4 times a day, and I am supposed to take less, not more. Well I didn't find this out until after everything was closed, so one more night of pain for me. But the pain improved, and went away, so I just did what I do best, and gave up. Well it started hurting again about 5 days ago, and the pain became so severe I tried pulling my own teeth. So I called a nurse line on my insurance, and she said she wouldn't take that, and that was when I found out it was too large of a dose. So I took her advice, and called Mayo clinic. The allergist who diagnosed me was out on a family emergency. So they took my information. Then I tried talking to an oral surgeon there, and they couldn't help me. After one more night without sleep, and went outside for some fresh air to try and help me at 2 am, and accidentally locked myself outside where I stayed for the rest of the night, I once again tried the cardiologist office, and they said they couldnt' help me because it was for dental work, and I should call the dentist back. My husband after watching me cry hysterically in pain for days called the emergency room, and they said they can only give me pain pills. Then he called the dentist back, and the same receptionist said they can't prescribe me anything, because they don't know my case well enough. So I took my car, and sat in a park close to my house depressed that no one will help me, and I cried myself to sleep. But it ended up being good, because when I woke up 3 hours later my tooth didn't hurt, my face didn't hurt, it was like something was pressing on the nerve of the tooth, causing the pain, leaving me to wonder if there is even an infection there. So this is why I never have medical care. I only have so much energy, and this is how it goes for me. If I question anything, this is what I get. I was prescribed an antibiotic, without ever even being seen, or knowing what the true problem was. On the bright side of things I am feeling a little bit better today. Now I just have to figure out if I can go ahead with the tooth extraction without the antibiotic......or will I just keep this tooth in my mouth till I can pull it myself!!! uuuuggggghhhhh..... I have been thinking of all you friends on here, and it keeps me going. other then my tooth I have still been unfortunatly pretty sick. I don't spend hardly any time on the computer when I am this sick. I don't know if it is the holding up of my head, the light from the screen, or what but it becomes difficult for me, and all my energy goes to daily things. But I want you all to know you are all in my prayers every night, and the thoughts that I am not in this alone keeps me going. As soon as I can I plan on catching up with all of you! Take care. Hugs Suzy

Good Morning Everyone! I am so happy to say that I feel pretty good this morning! I don't know how long it will last, but I used it to try and do something good for myself. I have a juicer, and I made a healthy fruit and veggie juice for breakfast! I have been unable to eat hardly at all, and this made me feel pretty good, and gave me some energy! As always I can't be greatful enough for the support here! I just know you guys have something to do with me feeling better!!! Thank you Thankful! Hugs back! Erika, I am glad my post helped you feel less alone. I feel less alone now too!! Sorry you had a "unexcepting" day also. Brye, I know what you mean about the nanny. My kids are older, so they can be a lot of help, but I have a lot of guilt because I want to be the ones taking care of them. I used to be the kind of mom who always had somewhere to go with my kids, now I just can't. Although I push myself sometimes, and end up sorry. I feel like my kids keep me going too. Thank you for the support. Casper, I get the scream thing!!! I guess we will just have to scream in our minds lol!!!! Firewatcher, aahhhhhh....to be 6 again! Gatorade and cheese here we come!! Thank you for the support! Jana, (((((HUGS))))) I am sorry for the stress with your boyfriend. I will be praying for all to go well. I sure hope you can get some better sleep. It's funny, because when we need it the most is when we seem to get it the least! Please take care of yourself too.....I know for myself when my family is sick I push myself too hard, because I want to give them what they have given me. But remember that you can't give anything if you don't take care of yourself. Thank you for the support. Michelle, no I dont recieve disability. They say my husband makes too much money. (funny it doesn't feel like it to me!)But maybe my insurance would cover it. I would just have to have a doctor. Then have that doctor not think I should just be able to "get" over it. I am looking for a primary care doctor. I do have a cardiologist, but he just manages my heart valve issues. Although I like him, he is the only one who believed me before I had a diagnoses. He was the one who suggested I go to Mayo. Thank you for all the heart felt caring. It is amazing what kind words can do for someone. I hope you have luck with finding someone. Let me know if you do ok. Well the good wore off, but luckily not before I finished this. Thank you all so much, and take care of yourselves. I hope you all have a good day today! Hugs, and thanks, Suzy

I really understand how you feel. I tried telling my mom the other day how bad I have been, becaue I just couldn't talk, and she said oh its going around. Everyone is feeling that way because of the heat!! I guess she didnt get the hint, so I just had to come right out and say mom I am too sick to talk right now. It took me a bit, but she finally let me go. Then I had to recover from asking to be left alone. I am glad to know that all I have to do is get out of the heat, and I will feel better ! Suzy

I know that sounds awful, but I am just so tired. My days are running into each other, and I have constant confusion. I go on the computer to read, and just end up staring at the screen. I don't even want to get up to go to the bathroom. I feel like my head is a tomato being squeezed. I have tried to find a doctor, but by the time I get the list, and call one or two that never are taking patients, I feel to exhausted to try again. I don't feel like I sleep. I just go in and out of conciousness. Every once in a while I will have a half hour or so that I feel pretty ok. By the time I go to the bathroom, or try to see my family I am done. Do you ever wish someone would just take care of you? I'm sure you guys all know what I mean, and I am sorry for rambling. It is all I seem to be able to do right now. I hope all of you are doing well, and really appreciate the support I always recieve on here. Sorry for all the wine......would anyone like cheese? I just wanted to say hi. I hope you all are doing well. Take Care, Suzy

I am sorry I haven't responded. I am just really sick. I will as soon as I can. Suzy

Hi bellajulz, it is kind of like the chicken and the egg thing. Does the neck problem come from the POTS? Or does the POTS come from the neck problem? I think it will be interesting to find out. Hi Thankful, that is a very interesting thing you mentioned , because what you say about not being able to sit up straight. Do you know how many doctors have told me that maybe my bad posture is causing the problem. I frequently find myself hanging sideways over the side of a chair, just trying to get lower. But when I was feeling better I also stood better. Maybe there are a lot of factors going on here. It is interesting though. I definatly felt better after my neck popped, and this is not the only time. It has happened many times to me. Anyways thanks for your thoughts. Hi Broken shell, I am so glad I am not alone in my thinking! My improvement from the cracked neck was also short lived, as I am feeling bad tonight again. But not as bad as last night. But I feel like if I can at least find something that may help, it would make my life so much better!! I am definatly going to look into finding a myofascial therapist. Does insurance usually pay for this? Or do you think I will have to pay out of pocket?? I don't know what kinesiotape is? I am having a hard time holding my head up right now, but as soon as I let it rest for a bit I will send you a pm. I have really thought that my neck was a very good posibility for the start of this. ha ha!! I just wrote that about my head, then re-read your message, and you said the same thing LOL!! Although not being able to hold your head up isn't funny! And I feel so bad the computer deleted your response. It always happens when you put a lot of work into something!! Hi njfainter, what is the gastron technique? I am interested in doing something helpful for myself, and I can't take any meds. The first symptom )severe enough to seek help for) I had was numbness on the left side of my face, chest, and down my arm. plus some other things, but I know that at least some of my problems are connected to my neck. I am also wondering if I have fibro. Anyways thanks for your thoughts. I am going to lay my head down for a bit. Also I just read a similar post by mkoven. If you haven't seen it yet look for it. There has to be something to this. Thank you, thank you, Suzy

Hi Mkoven, There really must be something to this, because I posted a very similar post today. I have a pinched nerve in my neck that was seen on an mri when this first started, right after I had side to side whiplash. I have asked many doctors about could my problems (before I knew I had pots) be from my neck, and they always would say they don't think so, and such. Here is an interesting article on some of the neck muscles. I found it interesting as they related many problems to these muscles. And if you have compression on your brain stem that would only make sense that it would cause problems with the signals from your brain to the rest of your body. http://saveyourself.ca/articles/perfect-spots/spot-04.php I definatly think there is a connection. Suzy

Hi again, I really should have said that I tried many medications, and had many bad side effects, before I realized it was making things worse. The thing is, if you take it, and have a problem with it, then you can always stop takiung it. If you take it and find somethng that helps then that is great. I didn't stop taking the medicines, because I didn't realize that was the problem at first. Just be aware, and you will be ok. Sorry....I didn't mean to sound pesimistic. Suzy

Ramakentesh, I always think that too when I first start to become sick again. I don't know if the symptoms are just worse, or that you suddenly ""remember" what normal felt like, so the symptoms seem awful. But when I am feeling good I know I wouldn't want to give it up for anything. (which is probably why it seems so bad when we get sick again.) What an awful mental game this illness plays with us!! Suzy

Hi icthus, It sounds like we were in the same boat last night. I have been having awful chest pain with shortness of breath for a few weeks now, in fact I have these most days of my life, but they have been really bad in the last few weeks. Well last night it became worse with feelings of dizzyness, vomitting, numbness and pain down my left arm and hand, blurred vision...you get the idea. Knowing all to well these are clasic heart attack symptoms scares me sometimes, and last night was one of the times. And of course the fear was just made matters worse. I have a wonderful repore with my local ER (NOT!) But I was really concerned, so I had my husband take me up to the ER. The thing was I couldn't get out of the car. All the thoughts of what would happen went through my head, They would (like you said) dismiss me as a nut, and send me home with less money, and feeling bad about myself. So I sat there in our car for a short period of time, and decided to come back home. Then I did some things that helped me feel better. I ate. Because I realized I hadn't ate yet, and this was around 6 pm. And I drank some gatorade. I started to feel better almost immediatly. Not perfect, but better. Then I stretched my neck, and it cracked, and it let up on all my symptoms ! So what that tells me is mine anyways I am not saying yours was related to my neck. I like the idea of doing some research, and try to find other things that could be the cause, and bring this to your doctor. The only thing to be ware of is when you do the research you will find a LOT of information on heart attacks and other stuff. I wish I could be more help, but I wanted you to know you are not alone. It is very upseting to have symptoms that feel like a heart attack. Deffinatly make sure that any "other" cause of this has been ruled out first though. Suzy

Hi, I take no medication, but try to find natural things that help me. The doctor who diagnosed me with OI wanted to see how I would do if I took no medications, and tried non-pharmacuital things such as salt, fluid, tilting the head of my bed etc. I had severe reactions to meds that the previous doctors had thought was "in my head". So I spent a lot of time getting myself sicker and sicker trying new medications, and continuing to up doses of ones that were making me sick. I ended up very sick, and eventually a neuro doctor realized it may be the medication causing at least some of my problems, and took me off. Then I began to improve. I recently found out the reason for all this is because I am missing a gene that metabolises medications. So what I say to people is to listen to their body. Have you tried sharing your concerns about trying these medications with your doctor? Maybe ask him what other alternatives there are that can help without taking any meds? Some doctors will be very open to this. I hope you find a solution to this. I know how bad it feels to be sick, and not be able to take anything for it. Suzy

Hi Everyone, I am just trying to find out how many people here have neck problems, and if any of you have noticed any relationship between the neck problems, and your POTS symptoms. I am sure a lot of you know I was doing really well, and even redoing my house, when I started to go back down hill again. The thing is I was doing work on my celing that involved sanding overhead, and esentially reaching overhead. My neck started to hurt worse then usual. (I had side to side whiplash interestingly enough right before I got sick) I always have a knotted left shoulder. A doctor who once looked at it said she specialized in sports injuries, and had never seen a shoulder as badly knotted up as mine. Well anyways My neck kept getting worse, and tighter, and tighter, as my POTS symptoms started to play havoc in my life again. And I noticed one day a couple of weeks back that after I had popped my neck I had an improvement in my symptoms. Well the improvement didn't last for too long, but I have noticed a very close connction between my neck, and at least some of my symptoms. So anyways yesterday started out good, but ended really bad. My chest was hurting worse then usual, my breathing was bad....you get the idea. I was having a really bad time. I was stretching my neck, because it was pretty bad like the rest of my symptoms, and it popped really bad. Once in a while it will pop this bad, where I have electric like shocks in my hands, and head. I had that happen bad last night. It knocked me for a loop at first, but then almost immediatly the chest tightness, and breathing just relaxed, and felt better. My head felt clearer, everything just seemed to get better. I slept so good last night, because it was the first night I didn't have chest pain all night, and when I woke up I only had pain and numbness in one hand, (which I usually have over most of my body.)Excited that just maybe I might have some kind of way to help myself I started looking up neck and chest pain. I found this article on myfacial pain syndrome, and the neck. http://saveyourself.ca/articles/perfect-spots/spot-04.php I know a lot of you have myofacial work done. I was wondering of those of you who do, do you find it helps with your symptoms? And how often do you do it? I was also wondering in general how many other people have had neck or spine problems, and if they know how much relationship there is between dysautonomia, and neck or spinal problems? Thanks in advance!! Suzy

Thanks so much Jana, Sometimes I forget to be grateful for the little things. Unfortunatly the rest of my day wasn't as good, but at least that gave me hope. Take care. Hugs Suzy

Hi, I have a dialated esophogus, and although it has not been a diagnoses I am fairly sure that I have esophageal spasms. I vomit right after I eat, and it is just a small amount, but I can do it over and over. It is usually tight in my chest, and just feels like someone squeezing toothpaste from a tube. It is very painful. I have never noticed anything like what you are describing with the head though, although I typically get migrains with the vomitting it is nothing like what you describe. Maybe you could keep a journal to share with your doctor. I hope you get an answer to this. I am sure it is scarey for you. Suzy