LindaJoy

Hey, Cardiatec, Let us know what they find with your test. I'm interested in this as I was diagnosed with gastritis over a year ago. My doc said that I produce way too much stomach acid, but he doesn't know why and put me on prilosec, nexium, protonics, etc. Currently, I, too, am having feelings of terrible fullness even after small meals, or starvation, especially in the middle of the night. I never thought that those could be from gastroparesis. Could someone explain the symptoms of gastroparesis, please? Thanks, Linda

Thank you, everyone, for sharing. Wow, you all said things that could have come directly from my mouth! You truly understand. I will take things to my neighbors as an excuse to not be alone if I'm not feeling good. I, too, feel like such a burden on my family and friends and will only call them if I feel really, really bad, beyond bad, like I did yesterday. I, too, carry a phone with me at all times and make sure my emergency meds (albuterol pump, heart pill, benadryl, aspirin) are within reach at all times. I feel crazy, but at the same time, I know what my body can and will do, and I get through those episodes so much better if I'm not alone. Being alone just makes things worse for me, as the anxiety from it adds to the already terrible POTS stuff. Right now, my doctor and I are trying to treat me with just added fluids, salt, compression hose, staying out of the heat, not over-doing, etc., since my body decided that no meds, whatsoever, are going to be tolerated. I feel truly, truly in despair. But, again, thanks, everyone. I know I'm not alone. And, thank you for the offers of phone calls and brainstorming. You all are so great. Send me phone numbers and you just may get a call, if you don't mind. Love you all, Linda

Hi, everyone, I'm just venting, so if you want to skip this post, please feel free. It's not going to be a full blown rant, but I am very, very frustrated, sad and depressed. I am afraid to be alone anymore and spend my nights with relatives when my husband is working, or my days with relatives or friends if he's working then. I'm so afraid of having a POTS episode, and now that I'm not on any medication to regulate my heart, I'm terrified of having a fibrillation or tachy episode and dying. Is anyone else out there afraid of being alone? If so, what do you do about it? I feel like such a baby. Actually, I feel like giving up. Thanks. Linda

I know this is two months late, but YES, I'm having that "waking up in the middle of the night" or "I've just eaten, why am I starving now" feeling now! I first experienced it when I was coming off of Effexor XL. I was told that the feeling of starvation was a w/drawal symptom. I'm now coming off of Cardizem CD after being on it for seven years, and I'm again having that "starving" feeling, in the middle of the night, first thing in the morning, and about every two hours during the day. I'm also, right now, having very bad POTS symptoms. I don't know the connection between them all. Oh, and I suffer with gastritis and acid reflux, so who knows? Maybe just another POTS thing we have to deal with. Sorry I couldn't be of more help. Honestly, I'm glad to see I'm not alone in this, though. I'm glad you wrote about it. Linda

Since going off of my Cardizem, I've started to experience some atrial flutter. I had this back in 1998, and that's what led docs to put me on a CCB. My doctor thinks my system will regulate itself, adjust to the CCB being taken away, and the tachycardia and atrial flutter will subside, especially since I'm in my 40's now. How many of you have atrial flutter? What do you know about it? What do you do for it? Is it dangerous? I've heard you could throw a clot with it; do you have to be in it long for that to happen? My episodes don't last past a few seconds each time. I just sit down and it resolves itself. Thanks in advance for any answers and support. LindaJoy

Hi. I just got back from my new gp (who I'm liking very much), who said that she learned about POTS in medical school and that they're teaching these students that POTS patients are just experiencing anxiety / depression (in other words, that it's psychiatric), only a bit more over the top with sensitivities. She said she's since learned differeently since dealing with real POTS patients. Thank goodness for that. Oh, and I've never even smelled marijuana in my life, let alone done any other drugs to have caused my POTS. Oh, my. What will they come up with next?????? Linda

Thanks, everyone, for your replies. Hi, Nadine. Actually, my doctores didn't consciously choose for me to be med-free; I've just been taken off of all meds that I was on, for one reason or another, so that now I'm not on any, or won't be once I take my final Cardizem pill. I was taken off of all asthma medication at the beginning of last year, as it was determined, I think, that my breathing difficulty wasn't asthma but more POTS related. I was taken off of my anti-depressant last year (and I haven't felt good since), and have been tried on many since, but I haven't adjusted well to any of them (and I've tried a big handful of them). That left me with only my CCB, and my doctors (two of them) said that my bp is running way too low for me to continue on the medication. That leaves me with nothing. I've written, in my other post about the use of beta blockers, how my body has changed since this whole ordeal with medication changes, CCF chronic pain program, etc., and how I can't seem to take any medications whatsoever, if anyone is interested. It's just weird, and scary. Anyway, thanks again, everyone. Linda

Thanks for sharing, everyone. Hi, Claire, two of my doctors, my endocrinologist and my new family doctor, said that my bp was too low now (running normally 90's over 60's and even into 80's over 40's), and that I need to come off of the CCB with blood pressures that low. I'll admit, I'm taking my Cardizem every other day now, trying to wean down, and it's throwing me into POTS spells, which it never did before. So far, I've been able to breathe away major tachycardia (I'll go into the 200's for minutes at a time--sometimes hours--and have to go to the hospital), but my bp is all over the place. Here's what's weird. I've been on Cardizem CD for seven years. Since my former family doctor, and other docs, decided to play with my meds (came off of Zoloft in December, after ten years, went on Paxil, then Celexa, then back on Zoloft, then on Ativan and Cymbalta, then onto neurontin, librium and effexor, then back to Zoloft, then onto Effexor, all within two months), it's like my body decided it didn't want any medications whatsoever, and even began reacting to my Cardizem. Now, when I take it, I have POTS spells, when I never did before. Is that possible? One of the therapists at the chronic pain program at the CCF said that sometimes, when medications are taken together and your body doesn't agree with one of the meds, it will associate the negative symptoms with both meds and react to even the one that you formerly were agreeable with. Anyone else ever heard of this? It actually makes sense to me because my pharmacist, whom I trust without question, said that your body remembers reactions to meds and will react the same way every time to a med, even if it's a lower dosage. That happened to me with Paxil. What do you all think? Again, thanks for your comments. I'll let you know how it goes. Linda

Hi, everyone, I'm coming off of my last medication now, then I will be med-free. That just doesn't seem right, having POTS as badly as I do. I've not been med-free for years and years. Are any of you med-free? How well do you do? I'll admit, I'm a bit scared to be going it without meds. Thanks. Linda

Hi, everyone, I'm being taken off of my calcium channel blocker after seven years on it. (Boy, has this been fun!) I'm glad, as my bp is very low right now and I seem to be getting side effects from the medication now. My doctor says I've been on it way too long. Anyway, she wants me to keep some around the house "in case of emergency." I'm not quite sure what she means. I've never taken the medication "in case of emergency." It's always been an every day thing. I've noticed that many of you take your beta blocker only as needed. I guess you mean when you're having a tachy spell. Here's my question: How soon into the tachy episode do you take your beta blocker? How soon does it start to work? As I said, I've always used meds for maintenance, not just as needed, so I have no idea how this works. Thanks for your responses. Oh, I can't take a beta blocker, as I have asthma, so I guess I'm stuck with the ccb. Any other meds you can think of that would help the tach besides beta or calcium channel blockers? Thanks. Linda

Hi, no, the doctor's taking me off of all heart medication because my bp is going way too low on it (80's over 40's at times, with terrible symptoms). Right now, I'm at the 120 mg every other day, and I took one last night. I was up most of the night in anxiety, with my head feeling like it was going to burst. Today, my bp is running 90's over 50's, and I'm very, very tired with aching muscles. I honestly do not want to be on any heart medication. All meds at this point are causing me to have POTS symptoms, and I seem to be having terrible w/drawal from any med I'm being taken off of. Actually, I feel a lot better on the days I don't have to take a pill, although my heart does speed up at times. Oh, what joy a POTS life is. Again, thanks for the suggestions. Linda

Hi. I will need at least five t-shirts: all adult, 3 XL and two large. I may buy more, but I know at least five. Thanks. Great designs to choose from! Linda

Hi, everyone, Well, I have a new gp, and she seems wonderful. She's running all kinds of tests to find out why I'm still not functioning very well, after all that I've gone through since March (tests, hospital stays, chronic pain program, medications out the wazoo). I know it will probably come down to the POTS being triggered by all that, but at least I'll know that everything else is okay. Here's the concern for today: She's weaning me off of my calcium channel blocker, Cardizem CD, 240 mg taken once a day for over seven years. I know, from what I've read here, that CCB's are a big no-no for POTS patients, and I should never have been on it anyway, so going off of it is probably a good thing, but I'm truly scared to be without it. I've had tachycardia over the years, even on it, and my bp is way too low (that's why she's taking me off of it), and I'm having what I think are side effects from it, but I'm still scared. She's taken me from 240 to 120 for three days, I skipped a day, now I'm taking the 120 every other day for three pills, then I'm done. Does that sound right to you all? Heck, my endocrinologist from the CCF told me to just stop taking it. I asked if that was wise after all these years and he said, "Oh, probably not." Duh! Anyway, I feel better today after not taking a pill yesterday. My bp is a little high, and my heart rate is higher, but I don't feel so bad. Now, I don't want to have to take the 120 every other day, but I don't want to stop taking the pill too abruptly either. What do you all think? Thanks for your opinions, in advance. LindaJoy

Again, thank you, everyone, for your replies, and especially your concern. I honestly didn't post to "trash" the program; I posted to ask about my continuing symptoms. I guess my frustration with what I'd been through and witnessed did come out. I think you're all right, though, and I know the program has been reported, but to no avail, which is not surprising. I guess I, like most of us here, have been through so very much with this illness that I'm used to being treated like a second class citizen by most in the medical community, world renowned clinic or not, and I figured this program was no exception. I'm not making excuses, just telling how I've dealt with it. I know that's not acceptible, but I've just learned to take away from things the positives that are helpful to me and leave the rest go. Many, many people left the program after only a few days. I felt I had nowhere else to go, so I stayed. Pretty sad, I know. Okay, enough of that. Again, thank you all. I'm now weaning off of my Cardizem CD (see other post for details), then I'll be med free, which honestly terrifies me. I do have a new doctor who seems very, very on the ball, compassionate and thorough. I really, really hope this relationship works out! Take care everyone. LindaJoy

My insurance, at first, said they would cover 90% of the program. Now, they're not sure. We're still waiting to hear and trying not to worry, as that just makes me worse. Linda

Hi, everybody, again, Thank you for your replies and support. If I told you all that happened in that pain program, I think most of you would find a way to get to Cleveland and throttle the doctor. It actually was a very hard, very horrible at times, experience. I guess, by the time I got there, I was so desperate for help, that I had to believe in something and someone, so I tried to believe in this program. Here's a run-down of some other things that happened, good and bad: -- Was given Effexor XR and dosages upped, against my wishes and negative side effects of very high bp (155/91), painful irregular heartbeat, electric lights, constant sweating, ear infections, etc. Was told I was frustrating the $$## out of the staff because I wouldn't take the meds they wanted me to. You should see the medications they give these people!! Most went home on more meds than they came in with! -- Was told that if I complained about my pain, I would be ignored. I pretty much was, or was given a pill for whatever. Was yelled at more than once for "doing nothing but complaining about my anxiety." -- Was labeled an alcoholic because I drank for three months when I was nineteen, with a girlfriend of mine who was having her last hurrah before marriage and my first hurrah away from home. Was sent to AA meetings. -- Saw people around me suffering greatly. One 79 year old lady was taken off her pain medication and forced to do all the physical stuff that all of us younger, healthier people were doing. She went home early, bless her heart. -- Saw people humiliated in front of others for the problems they had or how they were trying to cope with life. Once a week, they have evaluations, and everyone in my group had their business, emotional and physical, put out there in front of all the other patients. No one agreed with this. -- Witnessed my doctor tell my husband off for being "my nurse instead of my husband," and throw him out of the program! It was horrible. -- Good stuff: Tearose, they found that my right hip bone is higher than my left, so my husband adjusts it every night, and this helps my bladder pain. I also got exercises to help with my fibromyalgia and bladder pain that actually do help. The physical therapy was great! -- Met some awesome chronic pain patients from all over and made some wonderful friends. -- Learned some ways to cope with stress and anxiety that are non-medicinal that actually do help, like biofeedback. Relaxation is great! -- Learned some great communication strategies that are actually helping me to deal with my marriage and my mother! This program was very expensive. I'll tell you, it's a lot more than $50 a day; that's just the hotel room. It's actually $2,000 a day. I hope I can say that here. If not, feel free to delete it. I keep saying, after I feel better, I think the positives that I've learned will actually be quite beneficial! I just have to recover from the cure first! LindaJoy

Hi, just a few questions about lyme that I've not read. Can you have lyme for years and years, and have it go in and out of remission? Can stress or illness make the remissioned lyme come out again, severely? If you've been on antibiotics on and off for years for other things, such as bronchitis, etc., would these doses cure the lyme if you had it? Thanks, Linda

Hi, everyone, I'll try to make this short. I haven't been here in awhile. Last I wrote, I was still at the Cleveland Clinic, in their chronic pain program. There, I learned many, many things, foremost of which, if you just ignore your health problems, they'll go away, or at the very least, they won't matter as much and you'll be able to function just like any normal person. Ha! The doctor who headed the program said he's treated 10 people with POTS since he started the program in 1979, and he found that "if we just get POTS patients up and moving, their POTS usually goes away." Well, I was up and moving for three and a half weeks, am still moving, and my POTS is still rearing its very ugly head. Anyway, I came home, still not feeling good at all, though better, with ear infections (I was not allowed to complain about my pain, so I didn't tell them that my ears were hurting, then found last week that I have ear infections) and am back at a new family doctor for more tests as I'm still not right. Here are my symptoms. Please, please, look them over and see if you think these are all POTS related, or if not, what you think they may be, based on your own experience or from what you've learned from others or from your readings. Thank you. --Weakness --weight loss, even though I eat every two hours --severe low blood sugar (that's why I'm eating every two hours. I'm still skinny, even though I eat all the time!) --low blood pressure --joint and muscle aches --facial flushing --shaky legs sometimes --blurred vision all of the time! It's so bad at times, I can't read --Other vision disturbances, such as lighting going brighter or tunnel vision --fullness in head --fullness in ears --right eye pain --headache --nausea --dizziness, sometimes feeling as though I'll pass out --severe hunger at times --buzzing in ears --anxiety --low grade fever sometimes --rib pain --chills or feeling hot --clumsiness --smelly urine --tingling, especially in my legs --just feel awful I've also been diagnosed with fibromyalgia, irritable bowel syndrome, interstitial cystitis (they did help this at the Cleveland Clinic), among many, many other things. The blurred vision and feeling of fullness in my head bother me the most, but feeling like I"m going to pass out, or die, at times, isn't very thrilling, either. I'll tell you, too, that I'm now off of all meds except for my Cardizem CD, for my tachy heart. I feel like, in some ways, I'm better than I was before I went to Cleveland, and in other ways, I'm not. Thanks for reading, and for any advice you have to offer. LindaJoy

Hi, everyone. I miss you all sooo much. My life has been so crazy lately. I'm now in the Cleveland Clinic pain management program. So far, nothing, but I've only had three days of it. Those weren't good days, either. Anyway, the doc here put me on Effexor. I've noticed that my bp is all over the place, I have times when I feel so hot inside that I can't stand it (usually when my blood pressure is high). Is it normal to feel hot when your bp is high? I didn't think you could feel it when it's high. Anyway, I've lost even more weight (I've lost 13 pounds now and can't afford to lose anymore), have lost my appetite, etc. The doc told me that I'm frustrating his staff because I refuse to take just any pill that he gives me. I'm wondering about the effexor now. Can anyone give me a good word about it? Will my bp regulate? I tried to go back on my Zoloft, but my symptoms actually got worse. My anxiety is running at full tilt now, t the point that I feel like I am constantly choking, my chest muscles hurt and are tight, and feel like I can't breathe. I even feel like I have ear infections at times because my ears even hurt. Oh, and when my bp is high, I have an even louder buzzing in my ears than I do at any other time. What is that? I continue to fall apart, like I have been the past two months. Thank good ness my husband is here with me, or I would be a more nervous wreck than I already am. Love to you all. I hope this finds you doing well. LindaJoy

Hi, everyone, and thank you for your input on this topic. I had to go to the ER today because my anxiety was just toooo much to handle. I felt like I couldn't breathe, I was tachy, my blood pressure was high, etc. They said I was having withdrawal from Ativan because I was trying to go down off of it too quickly, so they gave me a safer withdrawal schedule. I still feel lousy, but better than I did earlier. I'm actually back on .5 three times a day for three days, then cut back to two times a day, etc., for two weeks, until I'm off the medicine. I was only on it for two and a half weeks to begin with. My body really reacted to it. I guess maybe because my POTS is so out of control right now. Again, thank you for your posts. I know I'm not alone in this. That does make it easier. I'm off to stay with my mom for awhile. Yes, I'm still panicky, and she lives closer to our hospital. My husband's not too happy, but right now, I really need to do what's best for me to feel safe until I get through this. I hate doing that to him, but it'll be better soon. I hope. Take care, everyone. LindaJoy

You all are so awesome, to be here to help me, even on a holiday. Thank you all sooooo much. I'm sitting here crying, I feel so overwhelmed. I love you guys!! I had to go to the ER today, as I am going through withdrawal from trying to come off of Ativan too quickly. My doctor didn't give me a schedule to follow on how to safely exit the medication, so my anxiety was through the roof. I got a schedule to follow now, and we're moving back to my mom's house for a little while, since she's closer to the hospital, in case I have any problems. I can't believe my body is addicted to ativan so soon, but with POTS, you never know. They were really nice about it at the hospital, too, which made the situation better for me. I thank all of you for your words of support and encouragement. It is comforting to know that there are others out there like me. You know, last night, as I was having a POTS episode, complete with tach, the shakes, blood pressure all over the place, etc., I wondered how many of you were going through the same thing at that moment. It may sound weird, but that brought a sort of comfort, a sort of normalcy, to the situation for me. Weird, huh! Well, we're off to my mom's, but I wanted to write and thank all of you for being there for me. That's one thing this forum does so well--it makes you KNOW you're never alone. Happy Easter, again, everyone. I'll write soon, when I get back home. Don't know when that will be. LindaJoy

Hi, everyone. I've been posting a lot lately. I'm soooooooo sick. Can anyone give me some advice or encouragement? I really feel like I'm on my last leg here. It started on March 12th with bladder pain that got worse. It triggered my POTS. Two hospitalizations (I've said all of this in other posts, I'm sorry for the repitition), 12 total days IN a hospital and a Cleveland Clinic visit, and I"m worse than I've been. I'm having POTS episodes at least two or three times a day, and in the middle of the night. I'm taking Ativan twice a day (.25 each time). I'm shaky all of the time, I've lost my appetite. I've also lost 11 pounds in that time. I weigh only 112. I'm scared. Between the tachycardia I have a lot now (140 beats a minute this morning when I got up) and my inability to eat much, I'm wasting away. Dr. Fouad, at the CCF, put me back on Florinef, but I haven't gotten it yet. We just got back yesterday, so I haven't had the prescription filled. I'm also afraid to take it, for fear it will just make me worse, like all of the other meds. I've been prescribed lately. I took it last year and gained 17 pounds in two weeks. I couldn't urinate at all by the end of the two weeks. She said this is a lower dosage. Do you think the Florinef is enough to help me? I am sooooooo bad right now. All I want to do is cry. I'm afraid to be alone. Actually, I'm afraid to be with anyone but my husband because he's taken care of me this whole time and done such an amazing job. I only feel safe with him. To top it all off, I STILL have the bladder pain! I can't have the testing until May at the CCF because they're too busy, and Dr. Fouad said my POTS probably won't be under control under the bladder is. By that time, I'll have blown away. Any advice would be GREATLY appreciated. I'm going to try to eat more. I just finished with three 1/2 slices of toast and some pudding for breakfast. It's hard because foods taste bad right now, and many of them hurt my bladder. I just can't believe how many doctors later and I'm a worse mess than when I started. I'm sorry to bring a downer to your Easter. I'm just so scared and sick, I need to hear from you all. Thank you. LindaJoy

Hi, everyone. I know this topic has been addressed here, but I guess I need some reassurance. My doctor put me on Ativan, 1 mg up to three times a day (haven't always needed that much), in the hospital three weeks ago, and I've been using it every day since, but like I said, not always that much. I'm now down to once a day, .5 mg or less. I'm concerned, though, because I am having anxiety / POTS episodes every day now, (at least one episode a day) and I think they may be triggered by needing the Ativan. Is it possible to be addicted to Ativan already? I'm also concerned because I read that people can die from Ativan withdrawal. How many of you have experience with Ativan? Do you seem to be addicted? Are you concerned? I know I sound panicky. Well, it's because I am! I seem to be having the POTS episodes at the same time each day, when I usually take the Ativan for the episode the day before. What do you think? What's the safest way to get off of this med? Thank you. Linda

Hi, everyone. I'm home from the Cleveland Clinic. I have to go back next month for tests on my bladder. The docs are sure I have IC, but they have to look in my bladder (fun, fun) to see what all is going on, then do a function test. So, in other words, after two hospitalizations and a trip to the Cleveland Clinic, I'm still no further than I was over a month ago, but it's getting closer. Thank you, everyone, for your well-wishes. When I didn't feel like smiling, you all sure made me feel good, anyway! I love you all so much! I depend on you so much, too, since you understand more than anyone! I hope this finds all of you doing better. Happy Easter. Linda

Hi, everyone. It's been a long haul. I've been in the hospital twice in the past month, the first time for two days, the second for ten days. Now I'm at the Cleveland Clinic. My POTS is HORRIBLE! My family doctor finds the whole condition fascinating, so he's been playing with my meds since January. I've gone from Paxil to Celexa to Zoloft without a break, in 2 1/2 months. Then, my bladder began to hurt. They're checking me here for IC. So far, nothing. I have to come back in a month for a cystoscopy and other test. I also see Dr. Fouad for my POTS tomorrow because I"m going into tach all the time, and all of my other POTS symptoms are all out of control. My POTS is the worst it has been in awhile. My doc. put me on cymbalta in the hospital, and it began causing me anxiety to the point I now have to take ativan twice a day. At home, pre-hospital, I was also given pyridium for my bladder that led me into autonomic storms, one right after the other, for 8 hours. I felt soooooooooo nervous after that, like every nerve in my body was ready to go off for any reason. Two days later, I went into severe tach that landed me in the hospital for ten days. I feel like one big, raw nerve. Can anyone relate to any of this? I just feel like I"m falling apart. I can't imagine ever feeling good again. I'd love to hear from you all, let me know I'm not alone. Thanks. LindaJoy