morgan617

Suzy, Ablation is when they thread a catheter through vessels in your groin up into your heart and ablate or "burn" and scar areas they think are causing rhythm problems. It is a wonderful treatment for certain conditions, but POTS is almost never one of them. I was never the same. morgan

Suzy, I do not ever leave home without my transport chair or power chair. I was self conscious for the first few times, now I don't give a rip. I have never been treated badly or even got any funny looks that I am aware of. It's much harder for me to adjust to how my body is changing than how anyone feels about me being in a chair. Once you accept that you are actually "helping" yourself and the people with you (ask my hubby how much better his back is with me in a chair, than trying to pick me up off the floor) you will never even notice whether anyone is even paying attention. I've never had anyone refuse to reach something for me if Dave is another aisle. People actually seem to love being helpful. Think about it, how long did you stare at people in wheel chairs before you ever got to a point where you needed one? I never paid any attention past the point of that's too bad they need that and then I was on to other things, like my life. I think this sounds blunt, but I don't mean it that way at all. And trust me, like I said, the first couple of times, it was weird, but I just realized I spent a lot more time wondering what people thought than they ever did thinking about me in my chair. Use your chair and enjoy the freedom! morgan

For me POTS=deconditioning. I worked a 14 hour day, had ablation, then it was over. I've had 2 PT's refuse to work with me, stating I was too deconditioned and in no shape to get that way. The second one laughed when I told him what the first one said, till he worked with me. Then he didn't find it amusing. I had a CPET several years ago (a test that puts you on a treadmill while breathing in a machine to see if you are hyperventilating and causing your problems.) The doctor pulled me off after 3.5 minutes when my heart rate hit 200 and I was collapsing. He called my primary and said I was incredibly deconditioned, but I do NOT hyperventilate and with the tachycardia I have, I will never be able to get proper conditioning. He said something was very wrong with my electrical system and it wasn't in my head. It was one of the very few times I have felt validated by a doctor. And he was right, I have never tolerated even the simplest exercises since my ablation. The last time I tried, I broke my shoulder and 3 ribs when I went down. It's different for everyone, but I do not believe that being deconditioned ever has caused a case of POTS. morgan

You just do your best for as long as you can. It's all you can ask of yourself. I pushed myself forever because of the "crazy" diagnoses I had. Now I wonder if I would have been better off in the long run, if I had trusted myself and my gut instead of the people around me. I haven't worked since 2003. I will never work again, as I am failing fairly rapidly at this point (I do have other health problems besides POTS) I do it day to day, sometimes minute to minute, it's the most I can ask of myself and I no longer allow myself to feel badly about something I can't control. Some days will be better than others, but bad days happen to healthy people and we are not healthy. Being too ill to work is not an excuse, it is a fact, and you have to get over that hump in order to come to terms with how to "do it." Good luck sweetie, morgan

I've been reading on this topic also. I don't think it's a cure for anything, but at least it's only typically used as a food herb, so not like some of the odd stuff we've seen pop up all over. I don't call anything a cure, so I guess I'm a cynic, but I learned long ago not to get my hopes up too much. morgan

Yes I do, but I suggest you look up Periodic Paralysis. I am on another forum for this disease and so many symptoms over lap. I think there are a fair amount of people on here where they have one thing that overlaps another and that throws the doctors way off. They tested me for narcolepsy too, but I have a huge problem with the way potassium works in my muscles, so it's like a slow motion cataplexy. To them. Please just google PP and see if that doesn't fit with your symptoms before you spend a whole lot of money, only to be told you are "normal" except for being crazy. Good luck, morgan

I bought a pair a couple years ago (there's stuff in the archives) but I had to sell them on Ebay. They are definitely not for people with big balance problems! I have an inner ear disorder and wore them once and about killed myself. The danger out weighed the benefit for me. I paid about 300 for them and sold them, worn once, for 99. What a bummer. But I actually got a note from the woman who bought them and said they were the best things she'd ever had. So that made me feel a bit better....sort of. morgan

Please keep in mind that astronauts are very very healthy to begin with and their POTS is transitory from being in space, before you spend lots of money. I suppose it could help, but i imagine it would be very temporary since the causes are very different. I guess i sound like debbie downer here, sorry. My pcp did offer to shoot me into space to see if someone who had it all the time would be improved by doing the opposite...LOL morgan

Chiming in here late. I have been so plagued with pac's the last few months, it really is making me nuts. I waited a week and finally went to the ER, where they brought in the pace maker tech and she upped the rate of my pacer, which helps over ride them, so I don't feel them so much. The thing is, all they could say was, well it's not life threatening you know. They actually said I wasn't having arrythmias. SO WHAT! I said, it makes me feel like crap. Fix it. Then the tech comes in and says I'm having them continuously. of course she still went out afterwards and told them I was a nut job and asked if anyone had bothered to give me ativan yet. My cardio said the same thing and i said I didn't care if it wasn't lethal, that doesn't automatically mean it can't make you feel like crap. He had to agree to that. pac's don't perfuse well, so if you are having them constantly, how can they NOT make you feel awful? I asked him if I went into the ER with a heart attack, but wasn't dead, would they just give me an ativan and send me home, since I wasn't dead? . You actually now have to be dead before you are taken seriously? He just shrugged. Good grief. Sorry about the rant, but I really get tired of hearing, well it's not lethal, so why are you bothering us. Whether or not it's hormonal...I'm 54 and past menopause and haven't changed meds for years, so I don't blame it on that. I hope you get to feeling better soon. morgan

Welcome Tony, I am glad you have found a spot to go. 7 Liters is A LOT of urine to spill out. My first thought goes to blood sugars. Have they been okay? I was getting 5-7 second pauses, but it just made me feel crummy. I got a pace maker for it and it helped that part quite a bit. I am glad you have chosen not to drive, since your first faint was while you were sitting. Some people are comfortable with driving because they don't have problems while sitting, but that is obviously not the case for you. It is to be expected that your life may change, but you also mention that you had been fighting a virus. POTS that begins during or after a virus has a better chance of resolving than long term lifelong problems. I hope that is the case for you. I hope you find this site as helpful as so many others have. It's a rotten place to have to be, but if you have to have a place like this, it's the best. morgan

Oh Katherine, I am so sorry about this! I was going to write that at 33 weeks, babies tend to do very well, only to read the next post. Abruptions are very dangerous and so emergent, they hardly ever go well. My prayers are with you, your sister and your whole family. I was an abruption 54 years ago and can't believe my mother and I both survived. I hope your sister improves quickly. so sorry, morgan

Ernie, sorry I haven't been around. I can't help you with tests, as you know I get rejected from everywhere and don't have the money for out of pocket anywhere else. I just wanted to wish you luck. morgan

bluesman, you might check into Vocational Rehabilitation. They are connected with everyone and you don't have to be on disability to see them. My son got through school because of them and is still appealing his SSDI. They help with training, health insurance, and even finding a job you CAN do. I guess it's probably different in each state, but it is free and can't hurt. I don't know anything about the coaches thing, sorry. I am very intolerant to cold also and we have had a terrible winter here, I've barely been out of my house. Although the barometer thing makes it not really matter whether I'm in the house or not. Good luck! morgan

Hi Bluesman! Sorry I haven't posted sooner. I have OCD and stomach flu is one of my worst triggers and there are posts about it everywhere, so I have been staying off forums. My brain knows better, but OCD runs the show. Anyway, I have a 27 year old son who has been on about 2 dates. I mean official dates. He has horrific anxiety with anything new and especially at the thought of a relationship. He has seen all his friends get involved, some get married and many having a lot of difficulties with them, when all his friends are healthy. He has crohn's and juvenile onset arthritis, which involves lots of bouts of diarrhea, exacerbated by stress. It is pretty humiliating to him. However, what he has really seen is, it doesn't seem to matter whether you are sick or not. Some relationships are not meant to be, some are certainly not worth the effort, and you don't have to be sick for a relationship not to work. It's not about being sick, it's about putting yourself out there and being willing to be vulnerable. That's hard for healthy people, let alone those of us with extra baggage. Think of this nurse. She is probably certain no would ever want a single mom of three. That has nothing to do with health issues, but is just as terrifying to her as your anxieties are to you. I am betting she would be far more understanding simply due to her circumstances, then maybe you are willing to give her credit for. it sounds like your date went well overall. There are bound to be awkward little moments when anybody is on a first date. I tell jake to be up front. I have to push him hard and still am, but he and YOU deserve to be just as happy as anyone else, healthy, sick, or whatever. it's all about how much you are willing to put yourself out there. Will you get hurt, maybe. But I think the not knowing what could have been is so much harder than having never taken the chance to find out. I believe there is someone for my Jake and I believe there is someone for everyone. it just depends on whether you are willing to step into life and find out. I am certain that jake will come home one day and tell me he has met the girl he's going to marry. he may be in his thirties, because that's how long it took him, it may be next week, or he may be a lot older. It will happen when the time is right and he is not just settling for something. It will happen for you when you are ready to face the fear of getting hurt and discovering we all get hurt and it doesn't have to kill us. I don't believe there's a person on this earth that hasn't been hurt in a relationship. When you realize it can hurt, but it doesn't have to destroy you, or the relationship, you will be ready for all life has to offer, pain, happiness, work, disappointment, pleasure. Peaks and valleys we all go through. I can't know what you feel, Jake says women only want "bad boys" and he is just wired to be nice. Well, that may be with a lot of women, but I can assure you, not all. Jake is not quite ready, but it sounds like you are on the edge of finding out some wonderful things about yourself, like what an amazing guy you are, in spite of your health. And someone else is going to see that too, in spite of you! Maybe it won't be this nurse, but you should be very proud of what you have done. it was a big step and you did a great job! Just keep stepping forward. If you fall, pick yourself up, dust yourself off and welcome yourself to the realities of EVERYONE's life! Good luck sweetie, and now I must go wash my hands...ocdmorganmama

Geez, I stay away for a week and everyone misbehaves! Glad those kidneys are working again flop! They are very lazy and it doesn't take much for them to stop and take a rest, but the one nice thing about them is they usually perk back up with a bit of coaxing. I'm glad you are doing better and hope that you can get home soon. Maybe the doctors will think about leaving things till it's "convenient" next time...mamamorgan

My blue cross paid all but the deductible for my power chair. The store actually did all the paper work with the doctor, and it went through quickly. Because I now paralyze and stuff, even the chairs aren't especially safe, but did want you to know, it wasn't that hard to get them to cover it. Good luck sweetie. morgan

Miss Fish, behave yourself and get thee home as soon as you can. Sending love and prayers. morgan

There are a lot of benzos out there. Ativan has a very short half life, so might work better, with less of a hangover. I'm not sure about xanax. Who knows with our bodies. However the addiction problem shouldn't be any type of a problem, most especially with short term use. Good luck and hope maybe the stress is much less than you expect! morgan

My biggest fear flop! Hurting a hip. Sending good thoughts and wishes for a speedy recovery! morgan

I haven't driven for about 6 years now. Just not willing to take out anyone else. This has been a really touchy subject, but I used to say I didn't pass out till I did. It's just not worth it. I did grieve the loss of that independence, just like I grieved the loss of my nursing license and many of the things I've had to give up, but would rather grieve that, than feel like I would if I hurt or even killed someone. Pretty much a no brainer to me. morgan p.s. I'm really glad you are okay and didn't hurt yourself!

Well Miss fish, take care and sending love and hugs and prayers to you too! Love you, morgan

Take good care Ernie and you will most definitely be in my thoughts and prayers! Love and hugs...morgan

That's so great Ernie. I hope it works out and is not too hard, so you don't have to mess with that! morgan

I have gotten progressively worse, but I do have other things in the mix, so I think it would be second guessing on my part to say it's just OI making me sicker. I believe that doctors, as a rule, think that when the onst is caused by a virus, the outlook for recovery is better. I've been sick my entire life and menopausal stuff has actually made me worse. So I do believe you can only really go on a person to person basis, it's so different with every one. morgan

Flop, my son Jake has had AS since he was 11 and crohn's that goes with it. He is HLA-B27 positive. He has tried everything, and now is on Humira, the 1000 dollar shots he takes once a week. He's 27 now and quite crippled up by it. he is fused in his left SI joint, lower back and now it's in his neck. We think the Humira is really exacerbating his migraines, he's had to go to the ER 4 times now and he could always get them under control before he started it. Ramakintesh, I have a low grade lupus and sjogren's. I also have Periodic Paralysis, which is an autosomal dominant muscular disease in the Muscular dystrophy family. Either my autonomic dysfunction makes them much worse or the other way around. Whichever it is,it sure ain't much fun. A lot of stuff overlaps and I believe can confuse the doctors, hence all my "psych" problems. At the moment my PP is the most concerning to me, since I have done some pretty nasty bodily harm to myself from paralyzing the last few months. It's one of the reasons I haven't been here as much as I normally am. I am trying to find a med that will help, and it's been very tricky, as most of you who have problems with meds would know. A med that helps one problem can easily aggravate another. The rheumatologist I saw several years ago said 95% of people who have lupus have a mild case like mine and it never gets worse, but it's bad enough to make you feel crummy most of the time. He didn't feel any need to see me till I need remicade or something that costs a kazillion bucks a shot. (Trust me, my friend's co pays for one infusion were 550 bucks and she got it every three weeks ) So, yes I do have other ailments and they all get lumped into the same dumpster. Sorry to hear about your AS. My son really suffers with his. morgan