jenwclark

Thanks, guys. I suspect that my friends understand more than I give them credit for. They generally only see me when I'm up and around and doing things, so they don't know that I may have spent the whole day resting so I can go out in the evening, or something like that. But they probably know me well enough to know I would help if I could. I'm trying to learn to be more selfish with my energy, and to put not feeling like **** higher on my list of priorities. spike

Oh, I guess we've all got plenty of venting to do here! The doctor who diagnosed me told me he had come across POTS a couple of times in his practice, but hadn't seen it at all in his training. He's a neuro, but not an autonomic specialist, and he said there was nobody at the university here who was an autonomic specialist, although they are trying to recruit someone. Given how overloaded the POTS doc are, you would think aspiring doctors would want to come in and take some of that business! I don't know how long I've been sick, because I didn't know the way I felt when I was young wasn't normal. It took me somewhere between 19 and 31 years to get a diagnosis, and I have sympathy for the doctors who just told me they didn't know what was wrong. The ones who piss me off are the ones who told me it was all emotional. For one thing, living with undiagnosed and untreated illness for decades will make you depressed and anxious. For another, I don't know how long it's going to take me to clean up the baggage from 30 years of being told and believing that I was just a lazy, neurotic mess. After I got the POTS dx, I got a 2-inch thick book on brain health out of the library to fill in some general background. In the section on dizziness, they said that the most likely cause varied depending on the demographic group. They said that in teenage girls and young women, the most likely cause was emotional. Just reading that made me angry. How carefully did they check before they decided that these women were just being emotional?!! Given how many people took years to get a diagnosis, do you think, just maybe, they didn't find a physical cause because they assumued there wasn't one?! Yes, I suspect that POTS is much more common than we're told, and it has occured to me that it might be worth working on spreading awareness of POTS especially in the CFS and fybromyalgia communities, since there seems to be a fair amount of overlap. A few weeks ago, somebody on here talked about contributing to the medical community as a patient by educating more doctors about POTS, which seems like a wonderful attitude to take. It ***** that we have to do it, but at least we can pave the way for somebody else down the road. And again, it's so nice not to be alone with this anymore. God bless all of you for sharing the load. spike

Niki, I don't know the cause of my POTS, either. Like you, I have a really hard time with not knowing what's going on. When I have ups and downs, I wrack my brains trying to figure out why, because it just seems like there must be a reason. I'm working on learning to accept that I may never know, and that I need to relax about it and just take it as it comes. It's a tough lesson to learn. Take care. spike

Hi willow. Glad you found a good doc, and I hope the new drug helps. I had a doctor tell me once that you never want to be an "interesting case", and you just seem to be downright fascinating. Positive thought waves heading your direction. spike

Thank you, Sarah. I sometimes just need that affirmation from someone else who's been there. I think I need to explain a little more to my friends about the variability of my symptoms, and that just because they see me doing something once doesn't mean I'll always be able to do that. As it happens, she already found somebody else to help. She just knocked on my door to see if she could borrow my jumper cables, so I'm off the hook! spike

I have a very generous friend who lives down the hall from me, brings me gluten-free food, drives me places sometimes, and even picked a big bag of apples for me at a local orchard. Yesterday afternoon, she called to say her car wouldn't start, and could I come down and give her a jump. I did, she drove to the shop and got a new battery, and I drove around for 10 minutes or so to be sure my battery had enough juice to start the car next time. It was really tiring, but I was happy to do it for her. This morning, her car won't start again. She can get by without it this morning, but I'm trying to decide whether I can afford the energy to help her again this afternoon. At the very least, I know I'm going to have to tell her I can't pick her up from the shop after she drops off her car, which is hard, because I don't think she understands what a big deal that is for me. Do you all have any suggestions for how to say no without seeming ungenerous? I don't think she'll be upset with me, so I guess it's really a matter of not wanting her to think I don't care, or I don't appreciate the things she does for me. I hate feeling like I can't reciprocate. spike

In the same vein, I call them "magic socks" . They are really helpful when I'm on my feet.

Woo hoo! You are amazing. (((throws confetti))) spike

Yay! Thanks for letting us know everything's ok. spike

Welcome. The course POTS follows is really variable. Some people have a sudden onset, some have it come on gradually, some have it from birth, some get worse, and some get better. I think mine has been coming on gradually for most of my life. I had many years of unexplained fatigue before my symptoms became clear enough and frequent enough to lead to a diagnosis. Looking back, I've had POTS symptoms at least since I was 12 (my Mom says 5), but I didn't realize the way I felt was abnormal until it began to seriously interfere with my life at age 19. I'm glad you have a flexible work schedule. That makes a world of difference in riding out the ups and downs. I hope you find some help here and from your doctors. spike

I find that walking is a very bad form of exercise for me. Even when I was healthy enough to do 20 minutes of aerobics at a time, 20 minutes of walking left me feeling sick and lightheaded. My best guess is that walking isn't vigorous enough to get my circulation going enough to compensate for being upright. I don't know what causes it, whether it's just POTS or there's something else at work. As for when to get something checked out, I mainly go by previous experience. If I've felt this way before and come out of it on my own, I don't worry too much. If it's something new, I check with my doctor. But then, my symptoms came on gradually over the course of about 20 years, so I had plenty of time to get used to them. spike

I noticed you hadn't been around for a while. I'm glad it's due to travel and not a POTS flare up! I hope you get in to see a doctor who can help you. spike

After you click "add reply", the globe is one of the buttons along the top of the window. (Past the B, I, and U. I was initially stymied by that, too.

Congratulations! I understand your struggle. I've gained 20 pounds over the last couple of years, and I'm thrilled! I wasn't as small as you to begin with (I'm 5'5"), but I find that it's much easier to keep my blood sugar stable when I weigh 128 instead of 108. It's been years since I had trouble with nausea, but my metabolism is still very fast, and my stomach feels full very quickly, which makes it difficult to keep enough food going in. For me, the key was eating 8 times a day, plus getting up for a snack at least once in the night. (I'm sleeping through the night without waking up hungry now, another thrilling development!) I also found it helpful to have really solid (and yet tasty) bread on hand -- whole grain, or made with bean flour. Having an easy snack that wasn't a burden to eat made a big difference. Also, I ate a lot of high fat foods. Now I just have to get my cholesterol back down to something reasonable.... spike

I know this would require phenomenal amounts of inter-doctor cooperation, but maybe you could get that done during your sleep study? At least, if the study is done at a hospital? At the very least, it seems like having the EEG, heart rate, etc. info from one of those attacks would be useful.

I use both. I can get by without the hose as long as I'm taking Midodrine, and I can get by without the Midodrine as long as I'm wearing the hose. For the best results, though, I usually need both.

I don't know about dramamine, but for the time being you might try just closing your eyes while riding in the car. A family friend does that, and it's the only way she can avoid getting sick. Her health problems are totally different from ours, so it might not translate, but it's worth a shot. I hear you on not being able to drive. I have been able to drive sometimes and not others, and when I can, it makes a huge difference in how I feel about myself and my life. I hope this passes quickly. spike

Wow, what a mess. It sounds like you're doing a really good job of setting up a solution. Just one more thought -- would it be useful to get a statement from the driver of the disabled transport van who said you were too sick to travel that way? I realize he's not a doctor, but it seems like something the insurance company should know when they're deciding whether to pay for an ambulance home. Good luck. spike

Maxine, I'm sorry you have to go through another sleep study. I was also unable to sleep when I had one last year, and it made for a miserable night. Ironic, as they were checking for narcolepsy. My sister was diagnosed with mild sleep apnea and has been using a CPAP for a year, and she says it makes so much difference it's worth all the inconvenience. I hope the same is true for you. spike

Not a coffee drinker myself, but my bro-in-law is a coffee snob, and he uses a French Press, so it must work ok

Hi, Jacquie I'm sorry things are still so rough for you. I hope the endo can help. Have you been able to get an earlier appt with your neuro, or at least on a cancellation list? It's got to be frustrating to be waiting so long. Sending you good thoughts and encouragement. spike

I'm glad the salt and fluids seem to be helping. Hope you don't need to go in for the IV! spike

Welcome. I also had chronic fatigue for many years before being diagnosed, and by the mid-90s I think I had tried every major class of anti-depressants on the market at the time. Interestingly, the SSRIs were the only ones that helped at all, and now I know that was probably treating the POTS, not depression. Good days and bad days are par for the course with these conditions. Sometimes you can tell what sets you off (stress, a cold, overdoing it), and sometimes it just seems completely random, and you can drive yourself nuts trying to make sense of it. You learn to roll with it. (At least, you try. ) Hope you find some help here. And congratulations on finally getting a diagnosis. spike

I'm a crafter, too; I take after my great-grandmother that way. She made clothes for her whole family, and when the last child left home, she announced that she was NEVER sewing again, and she started making all sorts of cool stuff. Embroidered pillow cases, place mats with autumn leaves between layers of contact paper, crocheted baby toys, and Christmas pixies. The pixies have pipe cleaner & felt bodies and styrofoam balls for heads, so they're posable, and you can set them up sitting comfortably on a tree branch with crossed legs, or have them hanging by hands or knees, or one year my bro-in-law set up a string of them hand in hand like a little pixie chorus line. Once I had mastered the basic pixies, I started making personalized ones for various friends. First came the PX520-B Pixie Beaurocrat, which featured a felt suit and tie, a cardboard briefcase, and a half-page of specifications explaining what he would and would not do, and which forms needed to be filled out in triplicate before he would do what. Next came the Pixie Lawyer and Pixie Mathematician, each with its own model number and page of specifications. I also made a pixie with a friend's chorus uniform, and another dressed like a friend's D&D character. (That was also the year I crocheted a fire lizard, but that's another story.) My favorites, though, were a set of characters I made from the TV show Buffy the Vampire Slayer. Especially the one of Giles, the librarian, which sported a little brown vest with french knot buttons over a white shirt with the cuffs rolled back and a pair of glasses made from a scrap of old telephone wire (which had been sitting in a drawer for about 15 years on the off chance I ever found a use for it). Anyhoo... I'm sorry things are going downhill again. Maybe while you're making all these life-sized figures you could make a decoy Ami to put in your bed and distract the POTS witch long enough for you to get out of the house? spike

I know anxiety is one condition commonly treated with cognitive behavioral therapy. If you're concerned about the drugs, that might be another possibility. As Sophia says, there are some anxiety drugs that have been around for a long, long time, and a small dose may be all you need. Depending on how often you have the attacks, you might try something fast acting that you can just take as needed. I used to use Lorazepam that way -- it seemed to be out of my system by about 6 hours after I took it. Good luck with all this. spike