Dizzy Dame

Thanks pooh, It's too bad that none of us can really drive, otherwise I'm sure we'd all see eachother often . And thanks for the suggestions, I'm watching the show "bridezillas" right now, and it seems to be taking my mind off my racing heart. Thanks so much for your thoughts , Lauren

Hey Emily, Happy happy brithday!!!!! Hope you're symptom free today, and that you get lots of good presents!! Lauren

Pooh, I'm so sorry to hear about your grandfather. In times like these I'm sure your illness seems that much more of a burden . I wish I had something magical to say to you, but sadly, I have no advice to offer. Just know that you and your grandfather are in my thoughts. And please keep us posted on how he's doing. ((((((BIG HUG)))))) Lauren

Hey guys, I know that alot of us have been really sick lately, so I feel a little guilty. But, I'm up, and sick, and nervous about being sick so here I am. It was my bradycardia that started it. I was settling down for bed, trying to go to sleep when I began to feel like I wasn't getting enough air. I know that's usually a sign that something's wrong, so I felt my radial pulse. It was so weak I wasn't able to get it and I actually had a moment where I thought my heart had stopped. I bolted up, and my heart began racing in my chest (so I guess it's healthy at least). But then the dizziness and chest pain from the tachy set in. Right now I'm staying with my elderly grandparents, who both have high blood pressure, so waking them up isn't an option. If I want to go to the ER, I'll have to call an ambulance...so that's not going to happen. So I'm sitting here, dizzy when I sit or stand because of tachy, and dizzy when I lay down because of brady. (I've clocked my heart at 49 laying and 128 sitting...I'm sure it's much higher when I stand.) Gosh, this is like cardiac manic depression ! I know that everyone here has been in my place before, that being sick stinks, and it's somehow never easier no matter how long I have these episodes: each one scares the crap out of me. I know that I'm not going to die from this... but geez, I hate feeling this off all the time . Well, I feel a little better now that I've been able to get some of this stuff off my chest. I'll probably be up all night though, it's too creepy feeling my heart sink when I lay down. Maybe I will think more about that pacemaker... Hope all of you are sleeping better tonight. - Lauren

Hi purple, I don't really have anything to add, everyone here has said everything I would say. I just want to let you know that you're in my thoughts, and that it will get better. Take care, Lauren

Hi jennifer, I have been having similar pain in my chest, usually when I inhale. Sharp and not too painful (as you described). I saw my EP and got an ECG and it was normal (for me). They concluded that it was just random muscuar pain, and blamed it on my fibromyalgia. However, you should call your doctor in the morning. Better to be safe about this stuff. I know the symptoms of heart attack are crushing, radiating chest pain (it has also been described as feeling like bad indegestion), sweating, feeling of doom etc. My doctor basically told me that if I were having a heart attack, I would be very aware that something was very wrong. Hope you feel better. Just try to relax, but if you're really worried, it never hurts to go to the ER (well, maybe it does, but you know what I mean ). Take care, Lauren

Thanks for the advice Carmen. I didn't even think to search on the topic. I'm such a dizzy blonde sometimes

Hi all, I just saw my new PCP today and she suggested I look into getting a pacemaker. My old doctor in Hawaii suggested the same. I was wondering though, do they help people with POTS? I have several arrythmias (did I spell that right?) as well: PAC's, sinus arrythmias, ectopic beats, a right axis deviation (whatever that means). I'm sure a pacemaker would help with some of the arrythmias, but I'm just not sure if a pacemaker will help the POTS, or the hypotension. Soooooo, I wanted to know if any of you have pacemakers, and if so, what your experience has been. Also, if any of you were warned against pacemakers for POTS etc. Thanks in advance for your help Cheers, Lauren

Like everyone's been saying, I'd trust Dr. Grubb. It's good news though, that they may be able to help your high tachy symptoms. 240 bpm is really high, and I imagine really uncomfortable. Good luck with it. Lauren

I think it's a good idea, although for some reason, no one has ever questioned whether or not I'm sick. I think it's my cane. -Lauren

Hi all, Sorry I've been out for awhile. I've been really sick and unable to type (brain fog). Anyways, I made it to Georgia in one piece, although I thought I was going to die a few times on the plane. Now I'm here and I wanted to try to organize a time when those who were interested could meet. I know we discussed meeting in Atlanta somewhere, sometime this month. Email me and remind me who is still interested. Cheers, Lauren

Yup, I get these too. I call them "the shakes". It feels like there are ants crawling around on my organs. I usually get these when my BP has dropped, I don't know why. I also get a less severe version of these after I lay down, as my hr is falling. They're annoying, but I'm sure they're not dangerous. Hope that helps, Lauren

Congratulations!! I know you've been very worried about the move, it's good to know everything's working out . Keep us posted - Lauren

I'm an english/philosophy double major. I usually do 15 credits a semester, but this semester I've cut it down to 9. The only hobby I have left is writing poetry, and that only requires that I'm able to type. I've been unable to do poetry readings this semester though, and I've toned down on publishing. It's too mentally taxing to keep track of who's reading my work. I'm sure I'll pick it back up soon. I spend at least half of my day, every day, laying in bed with my feet elevated. When I do leave the house, I have a backpack full of my meds, gatorade, and salty foods. Although, I really only leave the house to go to dr's appointments and school. I haven't even gone to see a movie, or gone out to eat since I got sick, it's just too tiring. Great question though, I'm interested to see what each of us is able to do, and how we all cope with POTS. - Lauren

Hi faith, I don't have anything to add, but I just wanted to give you a cyber-hug and let you know you're in my thoughts Good luck or your med-quest! - Lauren

I had a similar experience yesterday at walmart!! I went in and asked for a wheelchair and the greeter said "you can sit in it for now, but if someone disabled comes in, they'll need it." I looked at him, looked at my cane, smiled and simply said "I am disabled" and motioned my head at my cane. The guy was really apologetic, and said that he didn't see the cane, and thought I just wanted to sit in the wheelchair. I suppose we should take it as a compliment (however annoying it is) when people don't instantly recognize we're disabled. At least I don't look as sick as I feel . Sorry the guy at your walmart was such a troglodyte, and feel better. - Lauren

Good stuff!!! You must feel so relieved -lauren

Ballroom, I know that some of us are trying to organize a support group in the Atlanta area (Georgia). If there aren't any support groups in your area, perhaps you could make one. Good luck, Lauren

Sorry you've had a rough time. I have become so jaded by ER docs that I now refuse to go to the ER unless I'm SURE I'm dying (or if I'm unconscious and someone makes the decision for me). I have a great EP who will take my calls if he's in his office, so if I become really symptomatic, I can just call him and either he, or his nurse will answer my questions, or squeeze me in for a visit. Still, chest pain is scary. I've been suffering from it myself recently, and I know how annoying it can be to not get answers. Hope you start feeling better, Lauren

Just had to chime in, I love House too, and it is also my favorite show (I don't know why I've become obsessed with medical shows lately ) Another great show is on TLC or Discovery Health and is called "Mystery Diagnosis". The show gives accounts (first hand) of people who have rare or unheard of illnesses, I'm waiting for them to do one on POTS. Perhaps someone on this site, who isn't camera shy, would want to contact "Mystery Diagnosis" so they can do a show about POTS. I know they are looking for people with interesting stories. - Lauren

Cool post! I've been thinking about this alot since I got POTSy. I became very, very ill with parasites about two years ago (I was living in amazonian Ecuador at the time) and despite good treatments, my system has never fully recovered. I regularly get diarrhea, and nausea since I got better. Now the POTS (I began getting sick about three months ago, but in hindsight I've been symptomatic for about a year if not longer). The parasites devastated my body. During the thick of it, I lost 30 pounds, and began to slough my mucus membranes (my tounge began to shed as well as my lips, and intestines). I was unable to digest anything other than oatmeal and rice for about three months while my digestive system healed. I became anemic and developed a severe heart murmur. I know that my POTS hasn't been officially linked with my "infestation" but I'm sure they have something to do with one another. Great question though, it's interesting to hear what people have to say about it

Julia, Sorry to respond late to your post. What you're going through sounds awful. It must be really scary. I don't have spine problems, so I don't have much to offer in the way of advice, but I just wanted to say that I'm thinking of you, and that I hope you get some answers at the spine center. Good luck, and keep your chin up - Lauren

I find it interesting what everyone's been saying. I had a TTT here in Hawaii and they administered isuprel despite the fact that I was already symptomatic. I was strapped in, and they stood me up, within five minutes my heart rate went from 54 lying, to 130's, I began to feel dizzy and my pressure began to drop and that's when the doc said "Ok, we're going to begin the isuprel". The experience was horrific, once they injected it, I felt like my heart was going to beat out of my head, and my chest began to hurt. They stopped the test when I went brady (beat went from 150's to 60's while standing). But is this abnormal protocol? It sounds like from what everyone's been saying that my TTT wasn't performed properly. -Lauren

Dear Rachel, Have you been diagnosed with fibro? and if so, could the mouth pain be related? That's about all I can think of, but there may be people on the site who have a better answer. Sorry to hear you're having a rough time. - Lauren

Hi steamship and welcome to the forum. I can say that I'm not diagnosed with Chronic Fatigue, but I'm still tired all the time. Walking to and from the bathroom feels like running a marathon on my bad days, and sometimes I need to rest before I can make the long (10 steps) journey back to the bed . I don't know what to say to help you. I've completely cut caffiene, sugar, and MSG out of my diet. I eat about 5-7 grams of sodium a day, and try to drink 2 liters of gatorade a day, but I have hypotension so that kind of diet may not help you. Do you have a good neurologist? and have they ruled out thyriod dysfunction? If your adrenals etc. haven't been checked, you may want to consider seeing an endocrinologist. I wish I could help you more, but hopefully someone on the site will have better advice. Cheers, Lauren