Rachel

Dear Wibbleway, I'm so sorry that you and your husband have to suffer through this disabling condition. I didn't quite understand from your post what exactly it is that you are dealing with. Is it dysautonomia? Cancer that has returned? Something else? All of the above? I can answer as far as POTS and dysautonomia goes. I've been symptomatic for 12 or more years. It was very hard from 1995-1998. Then I felt a little better for a while and was able to have somewhat of a normal life. Daily life was challenging, but I could make it through. My health has been getting worse since 1999. It was slowly getting worse for about 4 years. But it has been declining faster since 2003. And come the fall of 2004 I crashed really hard. There were days that I couldn't get out of bed to get to the kitchen. So if my husband was at work I would just lie in bed hungry until he could come home to feed me. It was really bad. Things have improved a bit since then. But I still can't go out without a wheelchair. I can walk short distances in the house, but I can't stand for more than a minute. I still need help with showers. I can't usually get out of bed before 10 in the morning. I can't cook, do laundry or clean, so my husband has to do all of that. And most days I need some help with dressing/undressing too. Somedays I am too weak to even hold a phone up to my ear. And we have a one year old son to take care of too. Sorry, I don't mean to go rambling on about my difficulties, but I do want you to know that my husband and I certainly understand physical disabilities and the challenges that it presents for me AND for him. I get frustrated with not being able to be the mom and wife I want to be. It hurts that I can't cook and clean for my husband and take care of his needs. And it hurts my husband to see me suffering physically. He wants to fix it, of course, but he can't do that. He loves me so much, though, and he faithfully cares for me day after day. He doesn't complain about it, but I know that it is hard on him. Being a caregiver can be lonely and discouraging. But I also know that he wouldn't trade being my husband for the world. Have you ever looked at the patient handbook on NDRF's website? You and your husband might find it helpful. It talks about dysautonomia, what it is, and how it effects us and our caregivers, and more. Here is the link: http://www.ndrf.org/NDRFHandbook.htm Here is another link for a page that talks about caregiving and things that the caregiver has to face and deal with. There are tips on this page from caregivers: http://www.ndrf.org/Caregiving.htm Also, at the bottom of that page is another link to a caregiver presentation that your husband would probably like to read. I know my husband appreciated these pages. People often forget that the caregivers suffer too and that they need help and encouragement. Sorry for the long post. Hope you were able to find some of the answers you are looking for in here. You can also read posts on the forum for a while and you will find many others who face incredible difficulties every day due to dysautonomia. Lots of love, Rachel

Yes, my heartrate is occasionally very low (50's). It's rare, but sometimes it happens when I'm resting.

I have not had adequate care for over 8 years now. So I need to see a very good doctor to make sure there isn't anything else going on with my health besides POTS. I might also need to find a new treatment plan. I've heard lots of good things about Dr. Grubb on here, so I thought the trip to see him might be best for me. I was just wondering what to expect from an appointment with him. Does he just look over past medical records? Does he do an exam? If so, what all does he do? Would I do tests while I'm there? How long of an appointment should I expect? Does his office accept Medicare? Sorry - so many questions! But I don't like surprises! Rachel

I've seen lots of doctors. My diagnoses along the way include: 1. exercised induced asthma 2. allergies 3. stress 4. "There is nothing wrong with you. You're making it up." 5. NCS 6. Vasodepressor Syndrome 7. Orthostatic Hypotension, severe near-syncope, and fatigue 8. Peripheral Dysautonomia and hypovolemia 9. Dysautonomia, Orthostatic Hypotension, and Sinus Tachycardia (This doctor had not heard of POTS yet). 10. Orthostatic Hypotension with compensatory Sinus Tachycardia 11. Orthostatic Hypotension and Inappropriate Tachycardia 12. POTS It took a long time, but I was eventually diagnosed correctly. POTS has been confirmed many times. I'm still looking into some of the other things to see what is correct. There might be more than POTS, but further tests will be necessary. I was diagnosed 11 years ago when there wasn't as much known about dysautonomia and there was even more confusion in the terms (as evidenced in my last several diagnoses above!). If you think you have been diagnosed incorrectly, and if you can afford to, you can keep studying and going to doctors until you get a diagnosis that fits. It is helpful to have a treatment plan that is as close to the true diagnosis as possible. But it is up to you and your doctors to decide if there is more going on that needs to be discovered, or if everything has been discovered as much as medical knowledge will allow. Good luck. Rachel

Wilbur is just too cute! Thanks for sharing the photos!

India, If you have had whooping cough in the past you are supposed to be immune to it. Supposed to be. Kind of like chicken pox - once you've had it you shouldn't get it again. But strange things happen. lthomas521 posted a link to an article that recommends getting a booster even if you have already had whooping cough. Talk to your doctor and see what he says would be best for you. Rachel

Thanks for sharing that article. I'm glad to know that they have come up with a safe booster with pertussis for adults. I guess Alaska's health care is just behind the times. Rachel

Hi Lauren, I wouldn't call what I see hallucinations, but I do have visual disturbances sometimes. It looks like a shadow in my peripheral vision. It goes away in a few seconds. I've never paid attention to what my bp or heart rate is doing at the time, though. I guess I should do that! Hope you can figure out what's going on. Rachel

PickledFairy, Interesting...I'm not quite sure what to say! I hadn't heard of Yohimbine being used for dysautonomia. But, maybe it helps somehow. I did some research online. I don't see how it could help POTS or hypovolemia, though, since Yohimbine does indeed dialate blood vessles. I don't know enough about neuropathy/your type of neuropathy, so I don't know what the drugs effect would be on that. Yohimbine does seem to be somewhat of a conroversial drug. I would definitely do some research online and quiz your doctor for more information. Good luck! Let us know how Yohimbine works for you. Rachel

Congratulations!!! That is wonderful news! I'm glad you'll be able to teach them about dysautonomia. Hope all goes well and that you enjoy your teaching position. Your students will have one very cool teacher. Rachel

How wonderful and sweet. Thanks for sharing. Rachel

Thanks for the recommendation! I'll have to try them out!

I've never had a problem with a tetanus booster shot. But I've never had the TIG shot. I don't know which shot you'll be getting. Have you had a tetanus shot in the past? If not, make sure the nurse knows that. For those who have not had the DTaP shot and the TD booster shots, then the shot they need after a bite is different than the TD booster. They need the TIG (Tetanus immune globulin). Some nurses don't know/forget this. So we've got to stay on top of things! http://www.everettclinic.com/kbase/frame/s...g3065/frame.htm http://www.everettclinic.com/kbase/glossar...i150857/def.htm Hope all goes well. Rachel

P.S. I've just been looking into shots a little more online. I remember the nurse telling us that there aren't boosters for Pertussis once you're older. I'm not sure if this is the case all over the US or not (mandatory shots vary from state to state). Children get the DTaP shot. And then the booster at the age of 4-6. But the booster for teenagers and adults is just the DT. It doesn't have a pertussis booster in it. http://www.healthline.com/adamcontent/tetanus-vaccine So most adults and teenagers can contract pertussis. Be careful if you're around someone who has a barking cough!

Whooping Cough is no fun! Last winter my 2 1/2 month old son caught whooping cough. We do immunizations, but at 2 months old he had only had the first shot in a series of 4. So he was not fully immunized yet. The doctor put him on Zithromax, which killed the bacteria, but the cough still lingered for a long time and made sleeping and breathing very hard for the little baby. It is a miracle that he is still alive today. If you have already had whooping cough then you should now be immune to it. But, if you've been immunized, the immunization does wear off eventually. A strong antiobiotic helps a lot and keeps pertussis from getting worse, but the best prevention is immunization and booster shots. For a healthy older child/adult many times whooping cough isn't too bad to deal with. But for the sake of babies and those who are already sick, immunizations are a huge help. If anyone wants further information on Pertussis (Whooping Cough) here are two pages of info from the State of Alaska. Pertussis Fact Sheet: http://www.epi.hss.state.ak.us/id/dod/pert...isFactsheet.pdf More info on Pertussis: http://www.epi.alaska.gov/bulletins/docs/b2005_20.pdf

I'm so glad to hear that your doctors visit went so well! That's great news! I hope that the meds are just what you need. Would you please send the article to me too? Or you can just send me a web page link if it's on the internet. Thanks! Rejoicing with you, Rachel

Lavender, Yes, this happens to me too. I'm a very laid back person and have never really been stressed in my life. But for the past 3 years especially my body has responded to stress in the way you just described. Sometimes just a small disappointment will wipe me out.

Welcome! We're glad to have you here! This is a great place to find information and people who care.

Some hospitals have patient financial assistance programs. I do not have insurance, but recently had to have an MRI and blood work done. It was very important that they be done as soon as possible. The hospital had a financial assistance application that I filled out at the time of my tests. The bills totaled over $5,000 (and I couldn't afford a penny of it). But I was approved at 100% for assistance and didn't have to pay anything! My bill was covered by donations of doctors and employees of the hospital, and people in the community. What a blessing!!! I would not have known about this service if someone hadn't told me. Anyway, check with your local hospital. Some of them do have good programs to assist those unable to pay their medical bills. Rachel

Dear Julie, I hope the appointment goes well and that your doctor is willing to listen to you about POTS. You're right - many doctors don't like it when we diagnose ourselves! But bring a list of your symptoms, and a detailed description of POTS and its symptoms. Request a tilt table test so that you can receive an "official" diagnosis. Be persistent! Good luck! Let us know how it goes and what your doctor says. Rachel

Glad you found us Shannon! Welcome to the forum! And thanks for helping to promote POTS awareness! Rachel

Linda, I get those same symptoms too. Not necessarily every day, but several times a week it happens to me.

Thanks for sharing! I'm so happy to hear that your family doctor stepped in and helped out. And it's good to hear that Blake is doing well. I pray that his procedure goes well on Monday. Rachel

Welcome home dear Sunfish! We've missed you here and have been praying for you. Glad to hear that you are home. Hope you continue to regain strength. Love, Rache

I've never had a problem with erythomelagia.