jenwclark

Nina, I'm so sorry. Pets can be such a wonderful source of support when you're sick. I'm sure she feels loved and appreciated. cardiactec, The same goes for you. Bless you both for being willing to give them the gift of letting them go. Spike

Dayna, I have a strong emotional reaction to the idea of a wheelchair, too. I know it might broaden my life, like letting me go to the local art festival, or letting me go to a park or public garden, but I guess it feels like I'd be admitting I'm not normal, or that this isn't a temporary condition. Besides, I'd feel guilty, because I am physically able to walk around quite a bit, I just feel awful while I'm doing it. Same issues go for using the electric carts at the grocery store or getting a handicapped permit. Here's hoping we can sort out the emotional baggage and just figure out what makes sense. Spike

Sometimes, you just have to cry. This condition is a mess. I was only diagnosed with POTS at the beginning of this year, so I remember vividly what it was like trying to get treatment without a proper diagnosis. I hope you find some help soon. There are good doctors out there -- the kind that will think outside the box and really fight for you. Here's hoping you find one of them. Spike

Welcome to the community. I lived with a CFS diagnosis for about 10 years before I was diagnosed with POTS, and as unpleasant as this condition is, it's really nice to finally have the right diagnosis. All else aside, reading this board has been tremendously reassuring. My blood pressure also rises on standing or on mild exertion. Walking up a flight of stairs can raise my systolic 20 points. I hope you find some things that help soon. This site is a great resource for finding doctors, treatments, and other info. Spike

My standard, one-sentence summary is, "The part of my brain that is supposed to regulate blood pressure, heart rate, and various other important systems doesn't work very well." Followed by as many details as seem called for.

Wow. Small world. I went to the Kaplan clinic a few times in the early 90s. That was before I had a diagnosis, so they weren't able to do much for me, but a couple of family friends with uncommon health problems found them very helpful.

I'm with Corina. I fell asleep last night dreaming of eating ham and scones with jam in a charming English cottage. (Do you have a thatched roof?) Glad to hear the foot isn't infected. Sorry to hear about your husband's foolishness. I hope he makes it home tomorrow. Spike

Yes! That is so true. I don't have any advice about the Toprol, but I had to thank you for putting that so concisely. Do any of us remember what "well" feels like? Spike

Emily, I'm sorry the SSDI won't work for you. As you say, the medical benefits are the important part. Fortunately, my parents are very supportive, and it sounds like yours are, too. My siblings are my backup line of support, and they are 100% behind my parents spending their inheritance on me. It is a little scary to be so dependant financially. I guess we just cross our fingers and hope for the best. I hope the drug company at least comes through for you on the Ambien. Spike

Hi, willows. Glad to hear the surgery went smoothly. I hope it fixes your husband's problems. His symptoms sound really unpleasant. Are the tea and scones helping? Frankly, that sounds a good treatment for almost everything. And tell your son that when he finds that "nice, normal" family he wants to be adopted by, he'll probably have to get in line. Best wishes to you all. Spike

I'm so sorry for all the unnecessary struggles the system is putting you through. I'm on Medicare, and I'm dreading the day I want to try a really expensive treatment or drug. In case it's relevant (for anybody reading this), I also had not worked enough to be eligible for SSDI in my own right, but when my parents went on Social Security I became eligible for a Disabled Adult Child Benefit. I think the requirement was that I had been unable to work since before I was 21, but I'm really not sure about that age. It took a few tries to get approved, but thanks to a good lawyer and a sympathetic judge, I did eventually get benefits. Granted, the official decision was that I was disabled due to depression, which I'm not too pleased about, but at least they send me that monthly check. Good luck. Spike

I hope you feel better soon. Any new treatment is another new hope. Thanks for keeping us in the loop on this one. Spike

Wow. It sounds like you're dealing with a lot. I hope you get some answers that help you. The only practical suggestion I have is to try a "poor man's tilt table test". There was a post sometime last week, I think, that described how to do it. I'm pretty new here, too, so others may have more suggestions. Good luck. Spike

I was in a similar situation a few years ago. I got an email from an old high school friend around the time of our tenth reunion. Like you, I responed with a friendly but neutral sort of message. When he wrote back, I'm afraid I wussed out and didn't respond. Here's my summary of the problem: Disability of any sort tends to be taboo in our culture. Nobody seems to know how to talk about it or how to respond to it. When your disability is something nobody's heard of, there's that extra layer of having to explain it, and possibly facing disbelief. In my actual experience, at least 9 out of 10 people respond sympathetically. But, of course, the ones I remember are the ones who don't. The social revolutionary in me wants to be open about my disability and the unique strengths I have gained from it. In actual practice, I very seldom do that. I'm afraid of turning into one of those obnoxious people who's always talking about her aches and pains. It seems like that would be easy to do, since there isn't much else going on in my life. As Nina says, some people want to know more than others when they ask, "how are you?" I, too, start out with a generic, "fine." But lately I've been trying to find ways to ease into a more complete answer. Humor is good. So is a demonstration of your expanding knowledge of medicine, particularly if you can infuse it with a good dose of scientific fascination. I suddenly occurs to me, I wrote the following message just yesterday to a friend who just got back in touch after a couple of years absence. The tone is representative of this particular friendship, but it's the kind of response I'm trying to give these days: My primary activity these days is being sick. On the plus side, I finally have a diagnosis. I have Postural Orthostatic Tachycardia Syndrome. Doesn't that just explain everything? The quick summary is: the part of my brain that's supposed to regulate blood pressure, heart rate, and various other important systems doesn't work very well. The result is that I get a head rush every time I stand up, I see stars at least a couple of times a day, and I get tired really quickly when I'm on my feet, or even sitting upright with my feet on the floor. Do you think a recliner would qualify as a deductable medical expense?

I've been using NuvaRing for about a year. It's not completely regulating my periods, but I think my system was pretty seriously out of whack when I started. It does make them lighter and noticeably shorter. It's the only hormonal birth control I've taken, so I can't compare it to pills. I'm probably going to try something else, maybe something stronger, and see what it does.

It's so nice to know other people get this, too! This happens to me after every time I have a good stretch. For a few days, I'll feel like doing things, and I actually can without wiping out. Then I'll have a few days when I have the speedy feeling. I feel like I'm running on fumes, but I still can't stop moving. I also have insomnia then. I'm interested that relaxation techniques don't necessarily work normally in potsies. I had noticed that trying them seems to make me feel more tense. The only thing I've found that helps is making myself close my eyes and rest for short stretches. If 2 minutes is the longest I think I can do, that's the goal I set for myself. Sometimes I just try to notice periodically which muscles are tense and make a point of relaxing them, even if only for a moment. Same with turning off my mind for just a moment. It doesn't stop the speedy feeling, but I think it mitigates the effects a little.

Shopping malls have always been a terrible place for me. I love clothes shopping, but even when I was relatively healthy, I'd start to get cloudy and headachy within 30 minutes. Put me in a second-hand store, though, and I'm fine. Malls tend to have a high concentration of certain chemicals, formaldehyde (sp?) in particular, so if your system is hyper-sensitive that might be part of the problem. Spike

As if you didn't have enough to deal with already! Best wishes on the surgery, and good luck to you and your son. Spike

I was finally diagnosed by a neurologist. The cardiologist I saw didn't even order a TTT. Your test sounds pretty similar to mine. My blood pressure was normal until they added the drug challenge, but my heart rate was over 130 for half an hour. The doctor supervising the test actually diagnosed me with vasovagal syncope, rather than POTS. I'm not really sure why, because my neurologist and the techs running the test thought it was a clear case of POTS. Just another illustration that it's important who reads the results. I think the doctor's attitude is more important than his specialty. I hope someone can direct you to a good one in your area. If not, maybe you could take your TTT results to an out of town specialist. Hang in there. We're pulling for you. Spike

I'm sorry you got hit with this just after things were looking up. It's so hard when you back slide after making progress. Colds hit me hard, too, and they seem to last 2 weeks no matter what I do. I hope yours doesn't get any worse. Take care, and go easy on yourself. Spike

Dionna, I'm so, so sorry. *big hug* I hadn't realized it, but you're almost exactly the age I was when I first got really sick. It's a really sucky way to start adulthood, isn't it. You deserve better from your family, and if you ever start to doubt that, just come to us and we'll set you straight. You're doing really well against tremendous odds. And you're offering insight and support to people you just met on here! Thanks for being you. Spike

Hurray! It's always a cause for celebration when your energy goes up.

Congratulations! It must be the gravitational pull of the Ohio crowd. Michigan is right next door, you know.

How awful! Getting it from both sides at once is just too much. Can you go to a library or something? At least it would be quiet, and I'll bet they'd let you lie down if you explained the situation. Good luck. Spike

For the first week, I had to lie down for 10 or 15 minutes after putting on my stockings. And I'm only wearing knee-highs! I think it took me about a month to really get the hang of it so that I can consistently put them on without getting them bunched around my legs. The guy I bought them from showed me how to put them on and made sure I could do it before I left the store. He even gave me a pair of extra-grippy rubber gloves in case I needed them. If it would be helpful, I could try to write up his instructions. Spike