april abbott

Sorry to hear about your problem. Yikes! Hope you get to feeling better and that the heating pad helps a little. Take it easy.

Hopefully your doctor can answer some of your concerns, but in most cases, dysautonomia is not a lethal or dangerous disorder. I just wanted to say that I completely understand your concerns, as I had the same questions when I was initially diagnosed. I get tachy sometimes, and my bp tends to run on the high side. I have never completely blacked out but have come close a few times, and I get very weak and dizzy at times. I am very limited physically, but have learned that I can now tolerate some light exercises as long as I am on my meds, and listen to my body. I used to be so scared everyday, but having the right doctor, the right medications, and having a support group like dinet has brought me a long way emotionally. Good luck.

I definitely am intolerant to heat. To quote my doc, "If you go out into the heat, you are gonna wilt like a flower, so don't do it." My dysautonomia doc has told me to drink at least 94 oz. of water or water substitute a day, and stay indoors from 12:00 to 5:00, to avoid the hottest part of the day. Ummm...that is pretty much the whole day, so sometimes I have to forego that advice and go out anyway. Today was one of those days. I had to pay bills, go grocery shopping, etc. and didn't leave the house until 11:00 AM. It was already around 90 deg. F. By the time I got to the grocery store I was weak and out of breath. I cut my visit short and drove home, but now I am completely wiped out, and am just sitting in my air conditioned living room drinking Propel nonstop, and I am so sleepy. If I do get stuck out in the heat for any length of time, I get very similar symptoms. I get short of breath, weak, light headed, spacey, and can't concentrate. I have had several instances where I have had to pull over and have someone come pick me up because of the heat. I don't sweat either, so I feel like I'm stuck in an oven during the summer months. So, yeah, I can relate to your situation. It stinks, doesn't it? I have a 7 year old daughter that is always wanting to go swimming, camping, or participate in other outdoor sports and activities, and I feel bad that most of the time the answer is "no". At least, it is when it is this hot.

I'm glad to hear that everything is going so well for you. Having a baby is tough on someone that is completely healthy, so having a baby with POTS can be so difficult. I went through that, so I know first hand. Take care of yourself, and don't be afraid to ask your family and friends for help. I tend to be prideful about that kind of thing, and I end up suffering alone for no reason. Get plenty of rest when you need it. My little girl had GERD when she was born. She was my first, and I had no idea what to expect. I breast fed, so I couldn't imagine my baby having any gastro problems, but that was before I was educated on the subject. She took Reglan and Tagament, and that helped tremendously. It cleared up within a few months. I'll never forget having to put a bib over all her pretty outfits because I just knew she was going to spit up all over the place. Not to mention I had to keep those cloth diapers and wet wipes around for constantly cleaning it up. Seems like a lifetime ago; she is seven years old now. Anyway, take care and keep us updated.

I had an appt. with a neuro a few years ago, right after being diagnosed with dysautonomia from a cardiologist. The cardio tried to treat me, but I just got worse. I wanted a second opinion on the diagnosis, and figured a neuro could better treat my condition anyway. Well, I had no insurance, but the neuro agreed to see me. Despite being in a financial strain, it had to be done. When he came in he did a basic exam. Checked my reflexes, bp, etc. Asked me some questions, and when I offered some basic knowledge to him about my condition, he questioned why I had such medical knowledge, and insinuated that I was some hypochondriac that searched through medical books to find a disease. He seemed uninterested, and actually had the nerve to leave in the middle of my exam and say hi to a friend after some woman (who never identified herself) came in laughing and said he needed to come say hi to so-and-so. I just sat there in shock. A few minutes later he came back in. I asked about the huge rash that covered my entire body, and he said he didn't know. Didn't offer to test it, or refer me to anyone for it. Never drew blood, or did any tests. Took my b.p. again lying down and said "You don't have dysautonomia. If you did, your b.p. would be much lower when you're sitting up. There's nothing wrong with you." He said there was no sense in doing expensive tests on me because there was nothing wrong. Gee, I'm sure that had nothing to do with the fact I was uninsured. He patted me on the back, and said I was stressed because I was a new mother, and if I was still having problems in 6 months, just come on back. Bam. $150 for that craphead to walk in the room and tear me to pieces. This was a point in my life where I was very ill and could barely function. I had no money, no insurance, and now was being told it's all in my mind. I had been sick for over a year and was at my wit's end. I left there sobbing, and at this point I believe that his "diagnosis" just gave my family ammo. that confirmed that "nothing was really wrong". I'm sorry you had to go through what you did, but I'm glad you shared your story. As you can see, most of us here can relate, with very similar horror stories. Stay strong.

I was just on a small dose of beta blocker for a while (Atenolol 25mg daily) but that small amt. didn't do me much good. I quit taking it, and last year a different doc. put me back on the same beta blocker, but doubled the dosage. Now I take 25 mg 2x daily, and I see a huge difference. It keeps my heart rate down, and I generally feel better on it. But, I also started taking a very small dose of Klonopin at night (.5 mg) and that has helped take the edge of that wirey, anxious feeling I get, and has improved my sleep tremendously. Beta blockers aren't for everyone, but they have worked for me. I tried a different beta blocker a few years ago, and I thought I was actually going to die on it, so different beta blockers affect me differently.

Gee, this is a fun one! glucose tolerance tests 24 hour halter monitor (3 times) blood tests for anemia and vitamin deficiency EKG (several) Echocardiogram(2) CT scan 24 hour urine TTT (2) blood tests for parathyroid, lupus, Epstein Barr thyroid panel complete hormone panel from endocrinologist stress test endoscopy blood tests, blood tests, and more blood tests (I'm almost out of blood now) can't think of more at the moment, but I'm sure there are more

Welcome! I wish I could give you more advice, but I guess the best thing to do is listen to your doctors. I developed POTS during my pregnancy, which is one of the reasons I only have 1 child(wanted more but couldn't deal with symptoms). I wasn't lucky enough to be diagnosed during my pregnancy, but had to wait almost a year after my daughter's birth for any answers. My daughter is now 7, and this year I have just started seeing a specialist and getting the proper treatment. Good luck with the pregnancy, and keep us updated on your progress. I'm def. curious as to how well you will do with a 2nd pregnancy, as I always wanted another baby but have waited because of POTS. Keep a positive attitude. I'm sure there are others here that can relate more to your situation, as there are some who have had pregancies after being diagnosed.

LOL, Mightymouse. Gotta love Ren & Stimpy! My favorite dumb cat and asthma-hound chihuahua duo. "Stimpy, you eediot!!!!"

Well, I'm glad you got there and back in one piece, even if it made you feel like crap, and you got treated like dirt. You stuck up for yourself, and you seemed to do it with pride and confidence, despite your physical weakness. There are a lot of healthy people that couldn't do that, even in the best of circumstances. I'm glad to hear that you know how much we all support you. We all know how it is to feel completely alone in the universe; that is, until we come here and chat. I don't come here as much as I should, but this place is a refuge. Even the people in my life that really do try and understand my situation simply can not begin to comprehend what it is like for us. I wish I could give some wonderful legal advice; something that would help put this whole situation in perspective and give you peace of mind. Whatever you decide to do about your current situation, good luck, and please keep us updated. Ya never know. Sometimes what seems like a curse actually ends up being a blessing. You may end up in a position at another job that fully supports you. You may just end up not working, but may find that easier; therefore less stress and worry. You may take these morons to court and actually win some type of settlement. Who knows. Just take care of yourself and know that this is not your fault. You certainly didn't choose to get sick, and you didn't choose for your life to be turned upside down. You didn't choose to be discriminated against. The sad thing is that if your supervisors would just stop and think about how fragile and uncertain life is for all of us, they might have a small amount of compassion. Just think-- at any time, one of these people could be stricken with a sudden illness; be injured in an auto accident and require the lifetime aid of a wheelchair; or could have a stroke or heart attack that could leave them incapable of functioning. Yet, they don't stop and think of that. They don't want to think of the possibility of being in your shoes, but it could happen. Would they want their supervisiors herassing them, and threatening them with unemployment? Do they realize that they are just as replaceable as you? Apparently not. I'm certainly not saying I wish any of these horrible things on these people, but they need to stop and consider how susceptible ALL of us are when it comes to tragedy and loss. Anyway, keep a positive attitude and be easy on yourself.

I know how scared you are. Right now I am in college, and fighting just to attend classes full time, and there are days I ask myself, "why am I doing this?" I wonder if a degree is even worth it when I may not even be able to work. I wonder why I work so hard on making almost perfect grades, and I wonder why my family and I are all making the sacrifices for my education when none of this may pan out. Plus, we are going thousands of dollars into debt for tuition. Great. So when I graduate, not only do I have the pressure to go to work because I have wasted 2 more years of time on education, but I will HAVE to work just to pay my student loans back. Honestly, going to work terrifies me. I haven't worked in over 8 years, and I haven't got a clue as to how I should handle telling or not telling my employer. The career I am going into is in the medical field, and will require I deal directly with patients. I can't wait until my first "episode" in front of a patient. "Excuse me miss, I have to lie down in the floor now, and I think I'm going to take this oxygen mask with me." I have days where I feel very positive and days where I feel very negative; it really goes back and forth with me. My advice is only this: just do the best you can. That's all anyone can do. Tell yourself it is okay to be sick, and give yourself permission to mess up. I don't know about your financial situation, but I know that if you really need the money than it certainly will put more strain on you to be on the brink of losing your job. I personally really need to work to help my husband out. We get by, but that is about it. Dysautonomia is frustrating, not only because we are very sick even though we look well to others, but also because no one has heard of it, and no one cares. I'm not trying to be insensitive to people with other illnesses or disabilities, (believe me, I truly sympathize and realize other people are worse than I) but if it were cancer or diabetes, or some other well known health problem, you might not be having such a struggle at work. People respond differently to illnesses they understand, or at least have heard of. Get up that morning, and take it one step at a time; one minute at a time. Stay positive. You are sick, and you deal with it the best you can. You are not alone; you just have insensitive axxholes for superiors. Remember, there are people out there that understand fully what you are going through. Best of luck. Be good to yourself.

I'm taking 25 mg of atenolol 2x a day, and I stay tired all the time. I also have recently considered cutting my morning dose in half to see if this helps. Now I'm wondering if I shouldn't be weaning myself a little slower, maybe attempting to cut a pill into quarters. I really don't want to have to go through withdrawal. Anyway, I'll update and let you know how that goes, and I hope you do the same. Talk to ya later. April

I have fought off a cold bug recently, and swear by Zicam, which is a homeopathic med. proven to get rid of colds faster. I've used it a few times. For best results you're supposed to start taking it within the first 48 hours of symptoms. Everyone in my family has used it, and swears by the results. The active ingredient is Zincum Gluconicum. Inactive ingredients: benzalkonium chloride, glycerin, hydroxyethylcellulose, purified water, sodium chloride, sodium hydroxide. I've never had a problem while taking it, and I can NOT even touch Benadryl, Nyquil, or any other cold med. because I get very symptomatic from them with tachy. You can go to their website for more info. and last time I checked you could download a coupon for $1 off. Hope you get to feeling better.

You got my support! I can't thank the moderators and owners of dinet enough for all they have contributed. This is a wonderful site.

I have to agree with Katherine. I am one of those that feels worse while on the pill. But many here report the opposite effect. Just do a search on that topic and you'll find many different answers.

I'm not one to post a lot on this board, but I would like to tell you I have kept up with several of your posts. I was so sorry to hear about your situation. I welcome you home and send many well wishes your way. This kind of news hits all of us hard here at dinet, even those you may not hear from much, because on some level we can all relate. I have been in some bad situations myself, and reading your post takes me back to that sad place. Keep up the determination, because only you can get yourself to a place where you can build strength and endurance. Keep pushing and never give up. Your post encourages me and many others because we all strive to have your willpower and courage.

I am going to a local community college full time right now, 4x a week and am in my 3rd full time semester. It can be challenging, but so far I have been okay. I started during the Summer last year, and my symptoms are always worse in the heat, so that made it a little more difficult. I have to mention that I am doing very well right now, and my symptoms are mostly under control with medication. Without my meds I could not attend school at all. The school you want to attend will have someone working there that personally deals with students in need of medical assistance and/or special accomodations. If you do get approved to go to school without the possibility of losing your ssdi, than see this counselor/advisor first. He or she may request your medical records, but can arrange with your teachers to make your life a little easier. For example, if you need extra time on tests or wheelchair access, etc. Although I made an appointment with the ADA counselor at my school, I never really needed special accomodations; I just wanted her to know and make note of the fact that I have a medical condition, that way if I ever start to have problems later, my situation is already documented. I don't really know how conditioned/symptomatic you are right now, so it is hard to say how well you could possibly tolerate going to classes. I was scared to death when I applied to go to school, and I started full time in a summer semester. I was going five days a week, and was loaded down with work. I was struggling a little, but tried to rest whenever possible, and I don't have a job, so that def. kept me a little less stressed out. My husband helped out tremendously, so a good support network is helpful. For example, if you have class one day and get home and have homework, you may be too exhausted to clean or cook, so it helps to have someone around that can understand that and be patient. So far I have made it okay and honestly my symptoms have not worsened. I try and take it easy at home and at school. I don't even attempt going up or down steps; I use the handicapped elevator for the on campus library. Lucky me, the building sits on a giant hill and one must go up about five flights of steep stairs to reach it. I have left class early a couple of times, but don't recall actually missing any classes because of my illness. Online and video classes, as well as hybrid classes(a mix b/w online and in class) are widely available now, so there are many options. Also, you may want to only go part time and start out with just a couple of classes. It is important to know what you want to major in, and come to terms with whether or not you will be able to use that degree and physically handle the type of work you plan to do later with that degree. If you are not planning on working(which you may not since you are disabled) then taking a few classes here and there for your own self improvement is fine, and will help keep all the stress and pressure off of you. College can be scarey at first, but really, it is so easy once you get on a well timed schedule and find a familiar routine. There will be many advisors and counselors to answer questions and help you get started; whether it is academic, admissions, or financial assistance, there is someone to lead you every step of the way. I have never taken an online class myself, although I did take Psychology by video. I have to say it was an easy course, even easier than the in class version I hear, but it is so hard to stay motivated and stay on a strict schedule when you are the one deciding on when to watch the videos and begin assignments and study time. It is easy to procrastinate and fall behind. Anyway, I plan on using my degree to work part time or full time after graduation, so I do worry about whether or not I can handle working. But so far everything has gone better than I imagined. I do stay really tired because of my illness, so that does affect my concentration sometimes, but so far I have maintained a 4.0 GPA for all three semesters. I enjoy the freedom and socializing in school, and I know I now have the option of working and being independent if I need to. Good luck with your decision. Find out about your benefits, and if that isn't a problem, start calling up some schools and asking losts of questions!

To ann35016,

Hi there. I also have been away from the board for several months, but it is nice being back with people that actually understand. I just wanted to say how sorry I am that this has happened. I know how frustrating it can be to be doing so well for so long, and then BAM! I would literally go months and months through a kind of remission with my dysautonomia, even while I wasn't taking any meds. I would think, "Hey, maybe it's really not going to come back this time." Then, out of the blue it would hit full force, and I would get so depressed. I have been doing really well for the past few months and even started going to school full time. But I stay so paranoid that it could all end in one day with an attack. I'm sure you'll pull through this with time and rest. Try to stay positive and you will be back up soon. I'll be thinking about you. April

I wish I could offer something more comforting, but I just wanted to say I'm sorry that you've gone through such a nightmare. I only have one child, a seven year old daughter, and there are definitely times when I feel I have been cheated by dysautonomia by not being healthy enough to handle another pregnancy. I haven't even tried because my first one is what triggered my dysautonomia and I just don't think I could go through that again. Of course, I can't even compare my situation to yours at all because I haven't had to go through any of the losses that you have. I just wanted to say I'm sorry and I hope you find some peace.

There seems to be a very thin line for me between getting a much needed rest from laying around, and just feeling horrible from no activity. Right after my symptoms for dysautonomia began in '99 I was put on bedrest because I had just given birth and had pre-eclampsia. I left the hospital with my bp at 190/118, and that was lying down and napping. So, I was put on bedrest and was told to stay there around a month, until my bp would come down. I was a case where after the birth my bp didn't come down, but went up instead. I'm sure now this had something to do with the dysautonomia, which no one knew I had at the time. Well, one month stretched into around three months. I was getting horrible symptoms and the longer I stayed in bed, the worse I felt. Even now, while I have been on vacation from college, I can tell a big difference in my stamina and energy; all this is just from sleeping a couple of hours later in the mornings and not going to class. I'm weak, tired, out of breath, and can't even go grocery shopping; two weeks ago I was up every morning at 6:00, taking my daughter to school, going to class, studying, and cleaning house every day. Then again, there are times that short periods of rest are helpful, especially if I feel run down from overdoing it during the week. For me, anything over two days of rest and I feel worse.

I feel the same way. I have been dealing with this frustrating experience for over 7 years, and I still resent not being able to live a "normal" life. THere are a lot of things I want to do and experience. AFter all, I'm only 27 years old and I sometimes feel like a prisoner. I have days where going to the local grocery store seems like a hike up Mt. Everest. So going to social gatherings, or just to a quiet dinner with my husband is just impossible at times. I have been going to school full time, and that has been a struggle, but social gatherings never seem to be possible for me. I just wanted to say I know exactly how you feel, physically and emotionally.

I have never been a big drinker at all, but I would occasionally have a beer or a small strawberry dacquiri(sp?) But since my dysautonomia days I can't even tolerate a couple of sips of beer. The last time I tried a bottle of beer, which I drank very slowly, I went into my full blown symptoms, and could barely function. You think that it would at least make my drowsy or happy, but really had the opposite effect on me. I felt wired and had insomnia and instead of relaxed and happy, I felt worried and stressed, not to mention I was spaced and dizzy. So I just don't bother to even try the stuff anymore, even on special occasions.

Hello again, everyone. It has been a while, but I have been going to school full time and just dealing with life. My new topic: Anyone else feel like crap when you get off schedule? I thought that having this large holiday break from college(I've been going full time, 5 days a week) would refresh me, but I was so wrong. For the last few months I have been doing very well on my new meds (Atenolol 25MG 2x daily, Klonopin .5 MG 1x nightly) and have been at least capable of getting up every morning, taking my daughter to school, and the heading off to college myself, every single morning, minus weekends, of course. Things haven't been perfect, but still, they have been going better than usual. Anyway, I'm taking my meds, but I found myself sleeping late in the mornings during Christmas break when I didn't set the alarm. I'm talking about sleeping till 9 or 10 AM, when I'm usually up and going at 6 AM. Then I get up and feel disoriented and tired from sleeping too long and then have no energy for the entire day! I have just been lying around the house like a bum, thinking that this break is really what I needed, when really this break is turning me into a zombie. Because I'm off of my routine and getting less activity done during the day, I now feel horrible. Just going to the grocery store now exhausts me. I run out of breath, going even at a snail's pace, and my heart pounds, and I feel like I'm just floating through the store. By the time I check out and get home I start having full blown dysautonomic symptoms and then I must lie down and rest, which usually puts me to sleep again! What is depressing is that my spring semester starts January the 8th, and now and feel like I've gone two steps backward in my progress toward feeling better. I am once again panicking about starting school, even though my last semester went pretty smoothly. Anyone else feel this way when you get off track with your day to day sleep/work schedule? Ughh! I have too start building my strength up again just to go back to class. And to top it off, my next semester requires me to go to evening classes, where I won't be home until 7:00 at night. Oh well, I guess I'll make it; I always do.

Thank you all for the replies. The simple truth is that even though I like my doctor and she has helped me a lot with the other meds, I really just have a gut feeling that I should not be taking this drug. I am going to give the Nexium a few more days and see how it goes, and if my symptoms continue I will try and skip the Nexium. I really need something for the acid reflux and Gastritis because that has become a painful problem for me that needs to be treated. Anyway, the Effexor was called in to the drugstore, but I won't be going to pick it up. And to put you all at ease, no one here made that decision for me or talked me into it. I had already made up my mind before reading your replies. I know that we must all make our own decisions along with the help of our doctors. But, it does help to know that most of you agree and can understand my fears. April