blackwolf

Ditto! I find my GP to be very "uninformed" even after supposedly having recieved "up to date information" You are most certainly not alone in this area. Be active in your care, even if it means changing doctors. NEVER be afraid to ask for referals or take info to your doc, they usually don't look so much to find info for just one patient. I often have a list of questions and papers I've printed/recieved for him. Blackwolf

Dear Timbo, Yes, on occassion I do have shortness of breath with my bradycardia. It happens mostly when I'm resting(trying to sleep). I find that if it doesn't reeturn to normal as I wake up, I start wiggling my legs and feet. It ususally returns to normal. Blackwolf

Dear Genie, I guess my only suggestion and question is: Do you have trouble when your heart rate is that low? Mine is there most of the time(45-55)when I'm sitting around not doing so much. I'm comfortable and have no really bad symptoms. It goes up when I move around and quickly settles back down when I stop. I only feel uncomfortabe when I fall into the 30's, just feel "funny" and it rarely happens unless I'm going to sleep. My Cardio Doc says that if I'm ok he's ok. I do occasionally have a period when I go low and stay low, I just wiggle my feet, then legs and slowly sit up, it rises and I feel better. So I guess what I'm saying is, you have to make the best desicion based on your docs opinion and info. Just don't be rushed into it, I do know of a few people who have them and hate them with a passion. Blackwolf

Dear Julie, Personally, I hit that same stage a lot lately. I know part of it is the heat and humidity. Our weather has been really wild, a few days like July, a few like April and then Mid Sept. suddenly shows up. Tonite is loud thunderstorms with rain and small hail(NOT mid Sept weather).I also have had a major family problem that I know has really kicked my symptoms into high gear. I pass a lot of my time by sewing child and lap quilts and crocheting. I find that my hands shake to much to do the fine work of thread crochet, but I can do larger threads or yarn or just quilt, or nothing at all. I even have trouble just holding a book or magizine sometimes. Even coming here and typing can be a major undertaking. Walking has become the process of using a cane on most days to the occasional shopping trip with a wheelchair or electric cart(supplied by the store). And, of course, there are those days that, no matter what I do, I just don't have the energy to do anything and start shaking almost immediately when I start moving. I was dx'd with orthostatic hypotension in March of 2000 and POTS just a few months ago. My cardio conciders them interchangable. I also recieve SSDI. Thank goodness for it. Enough rambling! Any way, just try to remember that you need more time to get things done. Rest when needed, and, not to be rude, but I agree with Herdswoman, if your guests wheren't going thru your room, who cares if it was done or not. We moved in March and still haven't finished painting and unpacking. Just one more note, even or my worst days, I still try to do some daily stretches, light weights(arms) and leg lifts over the side of the bed. It might take all day, but I get it done. Drink plenty of fluids, eat healthy snacks(vitamins and minerals help to) and DO NOT RUSH IT! I plan 1 project a week, yes ONE. Take it easy and just remember you are the one how knows when you have done enough. Blackwolf

I hope all of you are safe and I send you all of my prayers. Keep safe, stay calm and don't try to get to up set. I was just told by my Great Aunt that this is her 97th hurricane in her life time, she just turned 82 by the way. I hope no one has any trouble. Blackwolf

I had lots of hot flashes after my hyst.(March 1999). It took about 3 different types of estrogen to get the right one. About 6 months ago, I had a major increase in hot flashes. I ended up stoping my hrt completely, I'm down to 2 or 3 hot flashes a week. Go figure. I hope you find something to help you. Blackwolf PS I'm 33, so I have tripled my calcium intake to keep up my bones, also, I do light free weights to maintain my bone strength.

Dear Ginger, WELCOME! Yes this is a great site and I too thank all who keep it running. As to your questions: 1 Yes, I have ear aches in both ears when symptoms are bad, I also notice ringing in the ears about 2-3 times a day. 2 chest pain, yes, why good question, I was told both per irregular heart beat and occasional racing heart rate. 3 yes, many of us do. Personally I have Fibro/CFS. 4 I was dx'd with OH befor the POTS so yes the can and do over lap. My cardio doc often referres to POTS as OH. Go figure. Again welcome to the site and I hope you get as much help here as I did and still do. Blackwolf 33yrs old female OH/POTS since march of 2000

Veryblue, I wake up like that amlost everyday. I ahve a combo of low hr and bp. My hr is about 30-35 when I first wake up and my bp won't read on the wrist monitor I have. I also keep water and crackers by my bedside(couchside in my case, haven't slept in a bed for about 7+years) just like when I was pregnet. I drink about 4 cups of water befor I get up. The crackers start my salt intake of to a good start. As to neuro docs, there aren't any here that know that much about dysautonmia so I have to travel to find a good neuro. Blackwolf

I'm almost up to Dawg Tired, my first denial came in at 10+ months. It was another 8+ months for the second denial and then 4 months for the hearing to be scheduled. I was approved in about 10 days, go figure! Nuts isn't it! Blackwolf

I personally have only tried the trazadone, only made me sleeply and not much else. I must add that my husband is a manic depressive and finds both drugs aided his ability to sleep through many nights without the dreams of his abusive childhood. As to depression in POTS, I would find them best as sleep aids, not so great in the treatment of depression. Just for me though. Blackwolf

Dear Ling, I went through something similar about 2 1/2 years ago and it was an inflamation of the blood vessels. Man did it hurt, I was beside myself with the feelings of pins and needles and burning. I've had it once since then but caught the symptoms and was put on a group of antibiotics to treat it. Both time it took about 2 weeks to clear up. I spent most of the time on very strong pain killers and sleeping pills. I was told the usual treatment is penicillian but I can't have it, so I ended up on keflex and something else. I hope you find the help you need and it doesn't last to long. Blackwolf

Dear Gena and Emily, The current biofeedback methods I use are a mismatch of what works for me. I use three different things. This is what I learned just after being dx with Fibro and was not to happy with the pain meds we were trying. 1 Find a place to relax. I prefere a recliner or a cushion on the floor with my feet on the floor(for best results try to keep your back straight). 2 Find a good relaxing tape/cd, I prefere a continious cd set on repeat and head phones for the best effect(quite is not an option in my house). Personally I like thunderstorms. 3 I started with just learning how to breath, yes breathing. I had to learn to use my stomach to take a really deep breath. now it is second nature. 4 Pulse, I learned to take my pulse to 60 bpm. I learned with a machine my therapist had and then bought myself a pulse/ox finger thing. 5 Use pictures or imagine where you want to be and relax. Sounds easy right, NOT! It took me 3+ months to learn this. I was taught at a chronic pain clinic in Sioux Falls SD. I would ask for a refural to a place that does it. If you have to travel ask for a "loaner machine" to pratice on, I did. It was covered by my insurance as physical therapy. I hope you are as lucky. Blackwolf

I would ask you pharmasist if you take other drugs. 1 of the pills I take becomes ineffective if taken with any antihistamine. If you don't have any med trouble, I would suggest trying a small dose to start with just in case you have trouble. The only time I take them is for emergencies, my hr hits about 150 on any of them. Blackwolf

Depression is a big problem with lots of chronic illnesses. I was on Paxil for a long time but had to stop as I was having liver enzyme trouble. I've heard many people say Wellbutrin is also good for the "blues" If you don't want to go the wasy of meds. I would consider a counselor that specializes in chronic illnesses as I have tried others and not had the luck and understanding I get from the person I see now. Not to get to personal, but how does your family and friends take this? I was fortunalte in having a great supportive family and friends. Blackwolf

CONGRATS!!! It took us for ever to get it and I'm sure glad we did. For those of you still waiting, DO NOT GIVE UP! I just found out that a friend of mine asked for and recieved an emergency hearing in order to get her money so she could have surgery and have the funds she would need for the nursing home recovery time. She is there now and doing well. I hope you get what you need and deserve. Blackwolf

I have to say that I am the prefect model "vampire". I function best at nite and late evening. This is ok for me as the kids are off to school at 7am and I can sleep more in the morning. I also am at both extremes for heat and cold. I can't get hot and I can't get too cold. Both cause trouble and I have a hard time returning to "normal". As to sleeping, what you discribe is an every nite thing. I cna't get to sleep, wake up often and rarely feel "rested". Best of luck, Blackwolf

I have to say Yes and Yes. I'm on my way down now. I had started a new drug and thought mabey I wouldn't go down so far, however, I seem to be still going down. I must admit though, it is slow and easy, not the crashing I'm used to. This has been much easier to adjust to and I still don't feel completely wipped out, just get tired easier and need to rest longer, a little more brain fog too. Good luck and hope you can see the light at the end of the tunnel. Blackwolf

Dear JLB, Yep, that's the way it goes. Heat, lack of fluid repalcement and all sorts of little things can set me off. I take any where from a few days to months to recover. I have gone as long as 6 weeks without hardly any trouble then WHAM! Rest as much as you need to, just pushing yourself makes it all worse. Waiting for that "up swing" is the hardest. Good Luck and try to remember that we are here to chat and remind you that "this too will pass". Hugs, Blackwolf

I found that Calcium channel blockers were uneffective for me. I currently take 25mgs of Toprol every morning and an additional 25mgs if I get tachy at night. this works great for me. I reciently started theophylline(an asmtha drug) to control my tachy and SOB. The Tachy was cut in half at least if mot more and I have a lot more stamina to get throught the day. I was able to cut my dose of Toprol down from 50mgs in the am and 25mgs if needed at nite to my current dose. You have to give the calcium blockers more time. I find one of my best distractors is a noise machine. I learned biofeedback many years ago and have tought myself to bring my heart rate down, it still takes 10 to 12 minutes. Have you ever concidered a table top water fountain, flowing water is a quick relaxer for me. Good luck and I hope you find something that helps. Blackwolf

Dear Hayley, I find this a little interesting. I do have something similar. I get very lightheaded and occasionally faint when I tip my head back. I had several tests run, but they where "inconclusive". I hope you have better luck. Blackwolf

I've already hit up my local news stations, twice, just sent reminders. I also emailed Sharon Osbourne, I love her show. Thanks for the reminder. Blackwolf

I am a low sugar, no caffiene type . I'm lucky, some cannot handle alot. Blackwolf

I was dx'd with Fibro/CFS more than 10 years ago. POTS only came along in March of 2000. Unlike POTS, I could work through 99% of my CFS/Fibro symptoms. POTS has completely taken everthing out of me. I was told by a doc in 2001 that many times they over lap and are often misDx'd. Sorry, I'm not much help. Blackwolf

I've had everything, holter, ekgs, stress test(walking and induced ) and I've had the angioplasty, not to pleasant for me as I have a mild allergie to iodine, I was on huge doses of benedril, etc. The wanted to be sure my irregular heart rhythem was my brain, not my heart. If you have chronic shortness of breath, I would follow up on that, not your heart. good luck Blackwolf

I've been there. I am so glad I got through it. In order to get an earlier court date I took the option of traveling to another city, 3 1/2 hrs their and back. 2 hours just for the hearing. I don't know if it made a difference for me or not, but I had a reprsentaive with me. She had done my evaluation for SSDI originally. Let us know how it went. Blackwolf