marshallgurl

I also have to vote "yes" for getting the flu shot. My Cardiologist highly recommends it so I've been getting it every year since my initial diagnosis.

I have suffered from the burning sunburn like pain in my legs for years now, at least I know i'm not the only one. And Friday7, I know exactly how you feel about not knowing where to turn. I see a Cardiologist for my Tachycardia but there doesn't seem to be anyone else who has any clue what POTS or Dysautonomia is, and that makes it very difficult to deal with the issues that we have when there is no one to go to for them. I have finally had enough of being run around in circles from one doctor to the next, so now I'm going through the list of providers on the Dinet site to find someone to go to that isn't too far from where I live. I wish you the best and hope that you find some answers to your questions, since I didn't manage to answer any of them in my response.

That's a good catch on the 2-8 weeks thing. I am pretty sure that I was diagnosed sometime in 2004, so going on 4 years now. That makes me wonder if the pain is still considered to be costochondritis if there is no swelling. I've been told many times over the last few years that that is what I had/have, and that is why my chest will hurt as often as it does, so that I won't freak out and think i'm having a heart attack. I'm going to ask about it going away on its own, I never gave it much thought before now. I can at least say that I don't currently have any pain and haven't really had any lately, at least nothing to bother me too bad. I do recommend more than one opinion, nothing against my PCM but with these kinds of problems I like to know that I am getting as much info as I can. So I would make sure to ask more than one Doc. just to be as informed as you can be. I wish you the best and if there is anything else I can tell you just let me know. Sarah

Well, as far as the relation to POTS I have no clue, But I also have costochondritis and it ***** most of the time. When first diagnosed I was taking 800mg of Ibuprofen 3x a day but have since stopped this. It helped a little but not enough to really make a difference and after the prolonged use of this Med I now have a lot of problems with constant pain. I was recently diagnosed with advanced arthritis in my back and leg and the Ibuprofen doesn't help anymore, doc said it was because my body is too used to the drug so it doesn't work properly (or something like that). This excerpt is from WebMD- Costochondritis does not lend itself to diagnosis by tests. Personal history and physical exam are the mainstays of diagnosis. Tests however are sometimes used to rule out other conditions that can have similar symptoms but are more dangerous, such as heart disease. For me, I had several chest X-rays, basically 1 every 3 months for a year; My Cardio at the time did a lot of poking to find the specific location of pain which was also the site of most of the swelling; We also did several other Cardio-related tests and he said that there was evidence of swelling. I hope this helps a little, it isn't much info but I don know what you are going through and it definitely *****. I don't really do anything specific to treat the problem, I just try to avoid things that I know will make it worse (like letting my 20lb cat lie on my chest). I take Ibuprofen ONLY if I need it bad enough, like you have said, I would like to not cause any damage to my liver.

I hate to say it but he didn't even seem interested in treating me. He checked the reflexes in my arm and lower legs, had me sit/stand/lie down to check blood pressure, and looked in my eyes with the lights on and off. But that is all he did. The whole appt lasted less than 30 minutes, and honestly, at this point, i'm so tired of Doc's who don't seem to be interested that I can't wait to leave their office. I'm sure everyone goes through this at times but sometimes I just want to give up, like there is no hope in knowing what is wrong with me, just deal with it and move on. I just don't know what to do anymore.

I'm waiting to find out if there is anything that can be done to try and get me a specialist, and I don't care where they are either. Saw a Neurologist on Friday, he says I don't have a neurological problem. But he did tell me that my blood pressure is good, stays the same whether standing, sitting, or lying down......i'm no doctor but I think that would be because of the blood pressure meds i've been on for the past 3 years..... But I will keep lookin and keep trying, i'm not going to give up no matter how bad I feel. And actually I think that my not feeling any better is even more motivation for me to find someone. Thanks for all your help.

Thank you all for your replies. Melissa, I didn't even think about trying to request an autonomic specialist but I am going to see if I can figure out how to do that while I am there on Friday. So far to see a specialist you have to have a "reason" and a referral from your primary physician, or at least that is how I have had to go about it so far. The "reason" has to be a valid medical reason, not that Autonomic problems aren't valid but they aren't very well known yet so I will keep my fingers crossed that someone up there will help me out. I'm also going to suggest to a few doctors that I know pretty well that it would be in the best interest to them as well as other patients to at least familiarize yourself with Autonomic Disorders. So thanks for responding and it is tough, mentally and physically and from personal experience having been told that I was making it all up it sure takes a toll on every aspect of your life. Masumeh, Sorry I wasn't very specific as to what hospital, when I wrote VA Hospital I meant Veteran's Area Medical Center (VAMC). I am located in southern West Virginia and have actually looked at the DINET site at Doc's in surrounding states and because of my location the closest facility is at least 4 hours away and that is in Ohio. But thanks for the info, if the VA is willing to pay for me to go to an oustide facility then i'm going to suggest as many as I can if people say they have great doctors.

So it has been a while since I have been on the website let alone in the forum posting, but some recently developed issues have got me at wits end and I figured it is time to ask for help. My main problem/concern is medical care. I am a Disabled Veteran so I go to a VA Hosp for all treatment. Since I started being seen at my local VA in late 2005 I have changed doctors several times. I am now on my 6th Cardiologist and each one had different opinions about Dysautonomia, that is the ones that had ever heard of it. I saw a Neurologist about 6 months ago and have a follow-up appointment this Friday, but he says my problems are not Neurological. So here is where I am extremely frustrated, Cardio's have no clue what i'm talking about and Neuro's say it isn't their problem. I feel like crap, i'm sick half the time, exhausted, and I don't know what to do. At least they aren't telling me that it's "all in your head". Well, thank you all for listening/reading, any comments/suggestions/advice would be great. I hope that everyone else is doing well, even if we are all "sick" in a way.

Well, I have an MRI scheduled for this Monday, April 14. And I have a bottle of Biofreeze - my cousin is a chiropractor and he gave it to me - and I am like Nina, I can't take anti-inflammatories much anymore, I have been on them for years and they pretty much don't work. The Biofreeze doesn't seem to help where I have been using it, it helps on my neck but not around my sciatic area, but the Tramadol and Flexeril help enough so that I can get comfy and get some sleep.

Thanks everyone for your thoughts and advice. I saw my PCM yesterday (Monday) and he wants me to have an MRI done, cause for some reason I have managed to make it from getting hurt in 2001 until now without having one done. He put me on Ultram and Flexeril and so far I am tolerating them well, I was a little worried about the Ultram at first because it is new to me. But hopefully the MRI won't take too long to get scheduled, but since it is going to be done by an outside facility, there is nothing I can do but wait for them to call. We are leaning towards Sciatica because we know I pinched my sciatic nerve, but in my doctor's words "let's just hope that it isn't as bad as I think it is", but he doesn't want to worry me by speculating as to how "bad" he thinks it is. So for now I will take the meds and get a little relief, he put me on the muscle relaxer because I have been taking about 1600mg of Motrin a day for the last couple of years, and he wanted to get me off of that for a while. So thanks everyone and I will keep you all posted as news comes in.

I feel as if all I have been doing lately is coming here to complain, but it seems as if nothing good stays good for long. I get over one ailment to just end up with another one. Right now what is really bothering me has been going on for over a week 24/7, I have low back problems from a broken tailbone a few years ago and was in physical therapy in 2001 for what I was told was my sciatic nerve being pinched. Well, the pain is in my r/h low back and radiates down my right leg, it also hurts on the inside of my leg, in the groin area. The majority of the pain is steady but I have sharp stabbing pains also and my right foot has been numb and tingly. I can't get in to see my doctor until Monday but it hurts so bad if I move a certain way I end up in tears. I'm not really looking for medical advice here, just that this is the only place I know to go where people will at least read about other peoples problems, and maybe someone that has/or has had similar problems might read this and be able to give me some advice.

I want to thank everyone for your great advice and support. I am feeling much better now even if i'm not 100% yet. A lot of good things have been happening here lately and it has taken long enough. I finally got my neuro consult at the VA and I have my first appt on Wednesday, with a few more different types of appts over the next month or so. I am going to be able to go home next week now that i'm no longer running a fever and it is perfect timing as well because it is spring break for me. And now that I feel better I am going home to help my mother with my grandmother, who will be 93 on Saturday, and now that I am better I finally get to go home and spend some time with her, and we are even having a party. But anyway, I just wanted to thank everyone who replied, I appreciate every single person, and it helps me to be more at ease knowing that there is a place where I can turn when I have problems that my friends and family don't understand because they aren't familiar with what is wrong, so thanks again for your care and support, I don't know what I would do without all of you.

I wish you and your son the best of luck while trying to figure this all out. I got a Neuro consult put in today, and it has only taken me 3 years. The only advice that I can give is the same advice that I got back when all my problems began......Don't give up. No matter what is said to try and deter you/your son, saying he's too young, or that it is all in his head, or that none of the symptoms are related.....keep looking until you find someone that is willing to sit down and actually do the research and acknowledge the possibility of his ailments being real, that he is not making them up. I only say this because I was told for over a year that all of my problems were in my head when in reality they weren't. I know that all Docs aren't like that but with something like POTS not being as well known as you would think, it is common for a doc to look at the symptoms and get the easiest diagnoses. So again, I wish you well while you guys begin the journey that will get your son to feeling better before you know it.

I do have a friend that could help out a little, but not much. I just moved, literally, last week and this place is beyond bare. No one can stay with me but while my friend is in town (she lives 45 minutes away) I know she will help out as much as she can. Thanks for the good wishes and keep your fingers crossed that the Phenergan will help me get some appetite back.

I will first start off by saying that I haven't felt good for a few months, since around November I think. I know I was sick off and on throughout Dec and Jan but just shrugged it off as the usual winter ailments. Well, about 3 weeks ago I started having problems eating, or not eating for that matter. I finally went to the hospital 2 weeks ago today because I was so nauseous that even tv food commercials were making me sick. But anyway, the point i'm trying to get to is that I was at the hospital for a routine Women's Clinic appointment where they told me I have Pneumonia. My first reaction was shock since the ER sent me home and said I was fine, my second reaction was "how am I supposed to deal with pneumonia and all other ailments when I live alone"? Besides staying in bed and getting lots of rest, is there anything else that I should be doing.....any moms out there that can tell me how they would take care of their child with POTS and now pneumonia would be a lot of help. Docs give medicine, People give advice.

Hello all, I haven't been on here lately and I hope that everyone is doing well, things have been crazy here because I am FINALLY about to graduate from college. But here lately I have been having some problems with my health, some new stuff as well as more frequent issues with the old stuff. I am not really looking for answers to questions I have, just some advice, support, or even some suggestions as to what I can do. I have been seeing a counselor at the VA Hosp and she is awesome, the reason I am still seeing her is because she wants to help me find someone who is willing to have a slightly more uncommon case. But enough rambling.....the problems that I am having are: 1. Cold hands and feet with numbness/tingling in the fingers and toes, nails sometimes get that purplish color when you get too cold. 2. Painful skin, it is extremely tender to the touch and comes and goes, has only been in the legs and is more prevalent in the thigh area. 3. I am tired, I know that I am a chronic insomniac, but it doesn't seem to matter what I do or don't do, I never seem to get any real rest and it seems that all I want to do is sleep, and I have very little energy after being awake for a few hours (which I have been contributing the my high dosage of Atenolol). 4. This is by far the worst and most annoying problem - I shake - and not just my hands, it is usually my whole body, it is as if I am freezing all the time, like constantly shivering. 5. Last but not least - when I lie down to try to go to sleep, I have muscle spasms, it is like restless leg syndrome but it seems as if my whole body is restless. I have jerked so bad/hard that I have not only woke myself up, but I can manage to wake up my boyfriend as well. Well, thank you for letting me ramble on, it seems as if I have no one to turn to. I have not had adequate healthcare since 2004 and it is starting to take a toll on every part of my life. At least I have finally found someone who spends enough time with me to notice that there is really something wrong and I am not just lying or making it all up. So we are keeping my fingers crossed that she can find someone who is interested in helping me out. It is a little difficult since she is not a doctor, just a counselor, but it helps me get through each day knowing that there are people who care, you just have to find them.

I had an EGD back in November and afterwards, for several days, I felt really bad as well. My Cardio said it may have had something to do with the biopsies they took in my stomach, but just to take it easy and once they "healed" then I should start feeling better. I have several of the same problems that you described, just not gastritis, or at least they didn't tell me I did. Laying in bed in pain, waiting, *****, but that seems to be all there is that can be done. If you get any good tips on how to help with motility issues, please let me know. Other than increasing fiber and fluids, there doesn't seem to be much else, and when you have no appetite, and feel sick all the time, you can't eat, therefore you can't increase fiber intake.....vicious cycle. On the EGD, I wasn't put completely under, just phentenol, but coming out of that was just as hard as it is for me with full anesthesia. I hope you feel better soon.

Tammy - I am pretty sure that the POTS didn?t cause either heart attack. I had my first one almost a year before I was diagnosed with POTS, but that could just have been the fact that they were slow in diagnosing me with heart problems in the first place. I am not sure if they are trying to do anything to prevent another MI, but I have been told that I will have another one; there is just no way to know when or what will cause it. Cardiactec ? Unfortunately, because of my age, I was told that I wasn?t having a heart attack at the time I actually did. So no blood work was done then. I just got the confirmation yesterday that it even happened. I was recommended to have a cath done, but it hasn?t happened yet, and I say again, because of my age. They decreased the beta because my blood pressure went so low all I wanted to do was sleep. Only one cardio told me to decrease salt, but the VA won?t put me on flourinef because they say it?s an ?extreme measure? and if I increase my salt intake that should help with my dehydration. Pat57 ? the VA isn?t too far, about 75 miles from where I am now, but I am getting ready to move back to Huntington, which is where the VAMC is. I am seen there but not as much as I would like, I saw a cardio in March and that was almost a full year after I saw the last one. I like that they don?t think i?m crazy, but I don?t like that they still look at my age and believe that I shouldn?t be having these problems, I want them to realize that young ppl do have heart attacks and can have problems with their heart. Thanks to everyone that replied, I appreciate knowing that you care.

They decreased my Atenolol because I am really tired now, have no energy. And my heart attack was in 2004 and a second one this past February. Depending on how much and why they want to put you on Atenolol, I would definitely consider it, I haven't had any side effects except for being tired, but I was also on 150 mg a day.

Well, as far as treatments that have been tried, none. I was seen by an EP in Feb 05 and got out of the military Mar 05. Once I got out, the AF wouldn't pay for outside medical care. I came home to WV which doesn't have an EP at the local VA. So I have seen 3 different cardios over the past 2 years, and none of them have really done anything for the POTS, until today. And all he said was the stockings, salt, and more fluids, which I am already doing, but he can't make any major changes since the guy today is not my cardiologist, he was just the one on call.

Is it common for people to be mis-informed about this disorder? I have spent the last few years becoming very familiar with POTS, and I know that I have never been told to lay in bed on one side and be quiet. But as I have read people saying that if you aren't specific in a lot of places and spell out that you have POTS with one T, they will sometimes think you have the other one.

Well, I had an appointment this morning at the VA hospital, and it was a routine appointment. I was being seen by a C&P counselor, which is compensation and pension, not a doctor, just someone who talks to you and puts info in the computer so doctors can look at it and decide if your problem is service connected. Well, my counselor sent me down for a new EKG and chest X-Ray, so I went. I had my EKG and the tech was concerned, I ended up having to wait almost an hour for a caridologist to come down before they would let me leave. I was told today by 2 techs and a Cardio that I definitely had a heart attack and they even narrowed it down to a specific time frame that it happened. This makes me very happy, because now I don't have to concern myself with trying to figure out when it happened. They finally let me leave, but were reluctant to do so because I was there by myself, but with the recommendations of increasing salt use and purchasing some of the stockings, and we have decreased my Atenolol dosage. Now I have to carry a copy of my EKG with me just in case I have to go to the hospital, to show them so they won't think I am having a heart attack. But all in all, I think the day and the hosp visit went very well.

Hey everyone, this is a question for anyone who can explain what POTTS is. A friend of mine in Florida called me this evening to tell me that her Pastor's 19 year old daughter has been very ill. She is currently being seen at the Mayo clinic. Well, the phone call was to tell me that she was diagnosed with POTS, but she couldn't tell me whether or not it was POTS or POTTS. Her current treatment is to lie down, on her left side (I think) and to basically stay in bed for now. I tried to do some research on POTTS and I don't think it has anything to do with the heart, but if someone could confirm/deny this, I would really appreciate it. But in the mean time, if everyone would keep this young lady in your thoughts and prayers, her name is Jessica. Thanks

I have the same problem, but mine isn't just with bending over, if I look up or try to do anything over my head, when I bring my arms back down, i'm dizzy. And god-forbid if I get on a ladder, when i'm finished with whatever i'm doing, I get really disoriented once I get off the ladder.

My cardio recommended I take Melatonin because my body doesn't produce enough on its own. I suffer from chronic insomnia and most nights only get between 3 and 4 hours of sleep, then there are times where I can't sleep at all for a couple of days. The Melatonin has also been shown to help people with Tinnitus as it has an ingredient in it that helps keep the ringing a little less noticeable. But I don't take it too often because of the other meds i'm on, but when the others don't work, I take it.