ByteMe58

Noreen, My wheelchair is made by Drive and it's backrest reclines and the legs lift. I have the tall version because I'm 6'4". It's comfortable and easy to operate. I googled the Tilt in Space models, they look very sturdy and a lot heavier too, but they don't look like they fold together which is something I need to hook into carrier on my trailer hitch. Frank

Wheelchairs are helpful. I refuse to use mine except when I have to wait in line somewhere. Which for me is only at the doctor's office. I only leave the house to go to relatives or doctors. This is important, get one that reclines, I cannot sit too long without my heart rate going over 100, so a regular chair is worthless. I also got a wheelchair lift that connects to the trailer hitch on my Traverse so when my wife takes me someplace, I lay down in the back of the Traverse on an inflatable mattress and the wheelchair is outside and safe. Here's something you may not know, most new cars have a benefit. For example, gmmobility.com reimbursed me in full for purchase and install of wheelchair carrier and the cover. Frank

It's been over a year now since I started blacking out and spent 22 days in the hospital being diagnosed. The longest I can spend out of bed now is about 10 minutes at a time. I'm thankful I can sit at the table to eat now, walk around my house to the living room recliner, take my dogs out, go to the bathroom on my own. Thankful, because I couldn't do these things a year ago. Years ago I had a friend at work who was diagnosed with Hodgkins lymphoma. He was very upset and spoke of suicide. One day, he was sent up on the roof to change the parking lot lightbulbs. I was told he was up there for a long time, so I went up to see him. He was sitting on the edge, so I went over and sat with him. I said what are you doing. He told me in tears that he wanted to jump off, but was trying to figure how to land so that he died, he didn't want to just break some bones or be paralyzed and be worse. I said, you mean you could be worse than you are now? You're telling me that people are paralyzed and fighting for their lives? And you're better than them and want to throw it away? I think it's called tough love, but I tried to get him to understand that you have to make the best of your situation, and it worked and he's still one of my best friends. He has beaten Hodgkins, married and had a beautiful baby daughter this year. So that brings us to today, somedays I feel I have nothing to contribute to this world anymore, I'm a burden on my family, and I can't get out of my own way. But life is too precious to take lightly. Suicide is forever, you're not just throwing away today, you're throwing away the rest of your life. You're going to miss a lot of good times, good days and good people who deserve to still have YOU in their life.

It's almost a year since POTS took over my life. I've been fighting back as hard as I can. I lost my job, had to sell my truck, and lost most of my friends. None of those things matter anymore. I miss my life. Last Sunday was my birthday. I was trying to help setup a backyard BBQ but after about 10 minutes outside I ended up passing out and fell over a chair in the backyard. My wife who has done 110% of everything for me since this started had to pick me up and carry me back to my hospital bed. So I spent my birthday with an ice pack on my ribs, bruises on my elbow, knee and ankle. I won't let it stop me. I refuse to give up and lay in bed all day, every day. I'm willing to take the chance that this will happen again so that I can spend as much time as possible being normal. I quote Rodney Dangerfield from Back to School, Do Not Go Quietly....

I had heard that if you have fainted in the previous 6 months (in NY) that you weren't legally able to drive. I still have my license but haven't driven since the morning I drove to work Sept 14 last year, they took me by ambulance to hospital. My wife drove me 600 miles each way to Dr. Grubb in Toledo while I was laying down on a blowup mattress in the back of our Chevy Traverse. I couldn't even help with the driving. I wouldn't take the chance. Frank

Definitely brain fog is the worst. If I sit too long, my wife says it looks like I'm staring at a spot 2 inches in front of my face. She yells at me "go lay down, go lay down" I just sat there, I thought she was talking to the dog!!! Frank

How about a Total Gym? I love it, you can get a great upper and lower body workout laying down on the bench. And the good part is as you get stronger, you elevate the back and put yourself on more of an angle. I mentioned it to Dr. Grubb last week at my 2nd visit and he said it was a great idea. http://www.amazon.com/Total-Gym-21300-4-18...4888&sr=1-4 Frank

Human, I've been taking it from the start. 10 mg x 3 a day. I just had my first followup appointment with Dr. Grubb last week. He is increasing my mestinon, but leaving midodrine dosage the same. It is supposed to constrict blood vessels, so I imagine you have a blood pooling issue. Do you hands and feet turn red and your veins pop out when standing for a period of time? My hands get red with white spots, then start turning purple, even if I just hang them straight down at my side when sitting for a few minutes. The veins in my feet expand so much, the veins across the top of my feet burn and it becomes painful to stand still. Sound familiar? Frank

Does this bed make me look fat? Frank

I have a reclining wheelchair. It was given to me when I left the hospital. It has been 7 months and I have only used it while at doctor's office waiting rooms and a few times I visited my old job. I am not able to sit up long enough to even go around the block. But someday I will be able to, I can't wait to have that kind of freedom. Frank

I'm curious myself. Out of work for 6 months now at 51 years old. I have progressed to where I can be out of bed for up to 15-20 minutes max. Sometimes only 2 minutes before major blood pooling knocks me down. Still bedridden the rest of the day (or fully reclined laz-y-boy) Reclining wheel chair for waiting in doctors office. No shopping, running to the store, or trip to the park for me. And definitely no driving. How do you work like this? Social Security starts next month for me. Frank

I've had this problem for years. My neck is red most of the time and bright red once in a while. It looks almost like a shaving irritation. But I've tried razors, electrics and nothing at all, but it doesn't have any effect. It's just red. The redness is from my chin down to around adam's apple and from ear to ear. For years people have said 'what's wrong with your neck?' and I always say nothing, but now I'm wondering, maybe it's not my neck. Maybe it's related to my B12 anemia or blood circulating problems from ANS. I'd hate to have to move south of the border just to fit in. Hee Haw, I got my red neck, white socks, and blue ribbon beer!!! Yank , I mean Frank

I've had pernicious anemia since 1990. I was getting a shot every month. While being diagnosed with POTS in hospital, I was told to give myself shots every week. You can't Overdose, you will piss out any extra. Give the shots before bed, you will make new blood while in a deep REM sleep, if you do it during the day, it will wear you out all day.

Scary, I also had epidural injections in L4-L5. I had 3 in 2004 after a car accident and 1 more in 2006 following another car accident, it didn't help and I ended up having microdiscectomy surgery. My POTS symptoms started in 2009. I have read that POTS could be caused by spinal injury.

This is my first summer with POTS, I have been pretty much bedridden for 6 months. I was looking forward to going outside and laying in a lounge chair, reading a book, taking a radio outside. It's almost warm enough now (60 degrees on Long Island this week). I know I always feel hot in the house (thermostat at 70), usually just wear shorts and a tank top, but my feet are always cold. But as far as being outside, how bad is it? Can I lay out in a shady spot? Is it the sunshine or the heat that is the worst. I guess I should get out there now.

Jeff, I also thought the video was very well done and had a lot of things we know about, but put in a different perspective. A loved on who also battles with the same symptoms calling out for research. i forwarded it to a friend as well as I not only have dysautonomia but anemia as well. Perhaps dysautonomia alone wasn't the cause, but enough chinks in the armor can weaken us to the point that something as typical as pneumonia for a healthy person could have been the cause of death to someone with their guards down. How brave and thoughtful of you to put your feelings out there for the world to see. Much better than a 20 second tv news story after the next commercial. I'm glad you are a member here, you will find support on many different levels. If there is anything you need, these fine people will 'stand up' for you. Frank

I too watched the video, and although we don't know what caused her death, it hurts just knowing she suffered through the same thing we all have and she tried to have an active life. But if someone with all her publicity and all her money couldn't make this symptom well known while she was alive, we really have to try harder. My doctor once told me this is worse than Lou Gehrigs disease because nobody every heard of it and worse than Multiple Sclerosis because there are no fundraisers to pay for research. We need to be heard. Frank

No showers anymore for me. I take a bath everyday with my wifes help. We use a hand held shower massage head, and a 5 minute time limit. Once she gets the water going, I have to run in there and she washes my hair and my back while I do everything else. It saves time that way. Even sitting in the shower causes my lower legs and feet to start pooling and getting dark. If the water is too hot, my veins will start popping out of my ankles. It's better than my 22 days in the hospital with only a sponge bath. Frank

Not Weird, I get the tingling feeling in top of my head when sitting in the recliner or whenever elevated. I also feel it on my tongue at times. I am on midodrine, so it could also be from that. Frank

I just voted, then checked the results and found myself very easily. There was only 1 vote in my height group. Male 6' 4" 205 lbs I was always about 200-205, but lost 18 lbs when POTS started. Before POTS, even at 51 yrs I would say I was in the best shape of my life, working out 4-5 days a week, benching as much as 250 llbs and running 30 minutes on a machine after each workout. Frank

I wonder how many of us have B12 issues. Back in '91 my B12 problems started, it started with stomach problems and nausea, my blood was so weak that I wasn't digesting food. After losing 40 lbs and getting so weak that I finally gave in and went to the hospital, my skin was turning yellow like jaundice. Doctors gave me radioactive B12 and tested me after 24 hours, from what I remember, I had lost over 90 % of it overnight. It should have lasted me a month. They told me that the body produces an intrinsic factor, this will absorb B12 from the stomach into the bloodstream. Pernicious anemia is what you get when the body stops making the intrinsic factor, some call it intrinsic anemia. So the B12 in the stomach passes through the body. That's why eating more meat or taking vitamins won't help, they pass right through the system. The only thing that helps is to get the B12 injected right into the bloodstream. I started getting monthly injections. After about 15 years I started getting weak and tired at the end of my monthly cycle and my doctor recommended 3 weeks between shots. I got POTS in Sept 2009 and at that time i started getting weekly injections. A cardiologist at the hospital said he felt being anemic so long could have caused the coating of the nerves to be destroyed. So now when the brain tells the veins to constrict when you stand up, the message isn't getting through the damaged nerves. It sounded good. But I've also had 2 back surgeries and 4 epidural injections in my spine from car accidents over a 10 year period and was told spinal injuries could also cause POTS. Frank

Thank you all for your concern, information and advice. I actually called Dr. Grubb's office in Ohio and told them I am done with this NY doctor. When I explained how he refused to refill the prescription for Paxil because he didn't think I needed it anymore, I was told not only would they refill it for me, but I did still need it and would for a long time. They were so nice there, they called my pharmacy directly. I have to find a new local doctor on Long Island who knows a little about autonomic dysfunction, POTS and orthostatic hypertension. This old doctor should be selling french fries somewhere. I should be back to normal soon, but I'll probably miss the voices at night. Some of those guys were pretty funny. Thanks, Frank

I've had pooling whenever I stand up, no matter what I eat or drink. My hands and feet turn red, then darker as I stay up. My veins around my wrist pop out, and around my ankles really balloon out to where I'd be afraid if I bumped a piece of furniture I would bleed to death. No amount of water or salt has seemed to help this. But I'm still new at this ANS, it's been 5 months now and the most I have been able to do is 18 minutes out of bed without having to lay back down. Frank

No Dairy, I think that's one of the first times I've seen that mentioned, but I found that cutting back on the milk really helps too. Is that something you read somewhere? I used to love a big glass of chocolate milk in the morning and one at night after a workout (before POTS). Frank

Dani, I get that problem with my eyes too. Sometimes I can't see well enough to read words on the tv in my room, or read a book unless I am laying flat on my back. But then you can't see the tv, or you have to hold the book straight up in the air. I was given a Christmas gift that changed my world. A pair of mirrored reading glasses, they allow you to lay flat on your back and read a book on your chest, or watch tv. Jack Nicholson wore them in the movie 'the bucket list' and they are available online for only $33 at a site activeforever.com Prism reading glasses Frank