jenwclark

Have the rest of you tried to cook things without turning on the oven? I once put a loaf of bread in for 45 minutes, took it out when the timer went off, and then spent several minutes trying to figure out why it was still runny.

I don't know the answer to your question, but I know there have been a number of threads on sleep apnea lately, including (I think) some discussion of whether it could be linked with dysautonomia. You might try a search on this forum. Best of luck, and welcome to the club. spike

Evenings are worse for me, too, even if I rest up during the day. I've been napping for an hour every afternoon lately, and I'm still too tired to want to go out by evening. My best guess is that there's some sort of natural rhythm at work where my body just doesn't rest as well during the day and doesn't move as well in the evening. But I'm not a doctor. spike

Melissa, I'm sending healing thoughts your way. I hope you can go home soon. spike

I'm a non-fainter, and I think I would take my own health problems more seriously if I did faint. I also might have gotten diagnosed sooner, just because I would have realized there was something wrong with me. I was 14 when I found out that most people don't gray out multiple times a day. Nobody else could tell anything was going on, and I didn't know to tell anyone because I assumed it was normal. I still don't really know how sick I am, because I don't know what healthy feels like, and I can't tell how often "normal" people have the same invisible symptoms I do. I am grateful that I can hide my condition when I want to. It doesn't have to affect casual interactions with strangers or classmates. But I do sometimes wish people close to me could grasp what it's like. I like the story about the heart moniter making tachycardia a visible symptom. I want people to know that I'm not just whining!

Em, Thanks for the dishrag ideas! The kind I learned first was just knit every row, but it's worked on the diagonal. You do a yarn forward two stitches in from each end every other row to increase, so you get this nice little lacy border around the edge. I'm playing around with other patterns now. I just need someone to drive me to the store to buy more yarn. Dizz, I hear you about brain fog and knitting! I've been crocheting for long enough that I can kind of tell what stitch comes next, but learning to knit has been an adventure. There are some days when there's just no point in trying.

I'm enjoying the image of you and your POTSy friend out shopping. I'm so glad you were both able to do it. I also have those times when I feel like I'm fine as long as I keep going, but I crash as soon as I relax. In fact, if I've been pushing for several days (e.g. during exams), it usually takes 24 hours after the last exam for me to crash. But, oh, what a crash it is! I do hope you get all these tests taken care of soon so you can focus on your long term care. I'm glad you managed to get back on the board. spike

Happy Birthday, Nina! Hope you're getting lots of quality time with your extra-special birthday gift. I look forward to seeing more pictures and hearing your stories about him! spike

Congratulations, and best wishes to all 4 of you!

Nope, not just you! That's a good one. how about: when you understand way too many of the terms on the TV medical dramas.

I'll second what Rachel said and third what Nina said. You get to call the shots on your own medical care, not your cardiologist. My disability claim was rejected twice, but approved when I finally got a hearing. It's a hassle and a headache, but there's an arrangement where you only pay your lawyer if you win, so you're not out any money, at least. I know how discouraging the process can be; I almost gave up, too. But a lot of people get rejected before they get approved. I wish you luck on both things. Hang in there. spike

Em, I'm so sorry you can't knit anymore. It is surprising how tiring it can be! I only have one dish rag pattern so far. I'm actually a brand new knitter, after years of exclusively crocheting. If you have more patterns, I'd love to see some! spike

I'm not a doctor, but my understanding is that the ANS regulates various aspects of digestion, such as the release of stomach acid and the coordination of the muscles all the way down the digestive tract. I think the latter is what commonly causes constipation, but again, I'm not a doctor. (And most of what I know I learned on this site ) When I'm constipated, fiber in the afternoon makes me bloated, but fiber before breakfast seems to help things work more smoothly. I think it's a matter of getting the fiber in before I get backed up, so to speak. And I've never heard of anybody using coffee as a laxative, but I've certainly heard of people avoiding coffee for that reason.

How incredibly twisted! spike

I've been short on funds for many Christmases, so I've gotten in the habit of making gifts. Mostly crafty stuff -- this year I'm knitting dish clothes. Depending on your energy and whether your family is local, there are a lot of things you could do with food. You could make something that freezes well or ships well (bread, soup mix, etc.). If they're near by you could give them gift certificates for hot dinners on an evening of their choosing. One year a friend of mine gave me 3 food coupons, and in exchange for two of them he made me big pots of beef stew and for the third one a pot of chicken soup. That was a gift I truly appreciated! There are also some fun things you can do with presentation. You can get decorative tins, jars, or baskets at Goodwill, or use colored plastic wrap and curling ribbons. Just a few thoughts. Let us know what you come up with!

Historically, I've often started a downward slide in November and bottomed out in early March. That's been less true in recent years. There are some seasonal factors that can affect your health. For a while, we thought I had Seasonal Affective Disorder (SAD), which is basically a sensitivity to lack of sunlight. It's treated with a Sunbox, which is an extremely bright, full-spectrum flourescent light source that you sit in front of for a couple of hours a day. It didn't work for me, but seems to help some. I also have a dust allergy, which gets worse in the winter when the heat is on. All those dust particles from the vents get tossed into the air everytime the furnace kicks in. I have a hepa filter in my bedroom, and that seems to help some. spike

Melissa, I'm so sorry you're feeling isolated, even here, but I do understand why. I won't offer you any advice, because odds are good you've already figured out anything I can offer. I just want to say that I hear you, and like your therapist, I'm amazed at how well you do handle your situation. I wish you luck battling your depression this season, and I hope you find some peace. I'm holding you in the light. spike

I'm interested that you felt worse after the exercise than during. That's when it hits me, too, which makes it hard to tell when I'm overdoing it. I don't get the tachy, but I get a slight nauseous headache, and my heart feels like it's working hard, even though it never gets above 75 bpm. I don't know whether my problem with exercise is POTS or deconditioning. I kind of bounce back and forth on how I deal with it -- one month I'll try to push my limits, and the next month I'll try to listen to my body. It depends partly on how much else I have to do. I can't really tell which works better for me. Hope it goes more smoothly next time. spike

Everything feels worse when you're trying to sleep. I'm sorry you had a bad night, and by all means, vent away! I hope you were able to settle down eventually. I sometimes listen to the radio when I can't fall asleep. Something that's distracting, but not too dramatic or involving. Given how often I fall asleep while listening to the news, I think there must be something soothing about hearing the voices going in the background. Take care. spike

I'm sorry to hear the new drug didn't help. I hope the neuro consult provides some new ideas, and I'm glad your cardiologist felt free to call in another expert. That's a good sign in a doctor. Welcome home. spike

Thank you, everybody! The birthday itself was mostly spent recovering, but that's ok because the day before was so great! spike

I can understand your mixed feelings. I'm glad the powers that be are taking you seriously, and I'm glad you're getting the help you need, but I can imagine it would be a kick in the gut all the same. I hope the help not only keeps you independent, but frees up a little energy for living your life. And I know what you mean about being an "exhausted can't keep up critter". I've had house guests spontaneously offer to clean my apartment for me. (I took them up on it, of course!) spike

I am easily overstimulated in general, and even more so when I'm having a POTS flare-up. I've also noticed that the more tired I get the harder it is to head off an anxiety attack. So if I push myself to do too much one day, I can still manage the anxiety, but if I push for 3 days in a row I have less control. I haven't had a full-blown anxiety attack since I dropped out of school a year ago, so clearly overdoing it was part of the problem. I find that even with my current limited daily activities, I still need to take a day off now and then. I can kind of feel when the stress is building up in me, and things just get harder and harder to deal with emotionally until I have a day when I can just do what I feel like, instead of having a list of tasks to be done. I realize that can be harder to arrange when you have kids or other people depending on you. I hope you and your therapist can get this sorted out. You may still get help from meds -- your Zoloft dose is very low right now. spike

I was able to be a student for many years, because of the flexibility in schedule. But the last quarter I was in school, my attendance rate was 10%. Yes, I mean 10% attendance, not 10% absence. Right now, I'm unable to do work or school. If I get a little better, I might be able to work, say, 10 hours a week on a sedentary job close to home where I could set my own schedule. spike

What a mess! I attended a very large university, and the beaurocracy could be a nightmare. You're dealing with a lot right now, with the vertigo, the withdrawal from meds, and the school logistics. Be patient with yourself, and remember, you won't always feel like this. Dealing with this condition is a matter of trial and error, and sometimes the errors are NOT your own. I wish I had some good advice for you, but all I can say is, you're not alone. We support you, and we're incredibly impressed with you. spike