blackwolf

Briarrose, Sweet, mabey I'll send this to our local TV station that does alot on health. Mabey they'll see there is more to us than " just lazy People". Blackwolf

Good luck, it seems like alot of us are really working to get our voice heard. Vandy is a good place, they know their stuff, Just don't let them rush you around. Take your time and I suggest taking a list of your Docs( adressess/phones), Insurance( if you got it) and even a list of all your health problems and meds. I know it seems like a lot, but it really helped me on my first trip to the Mayo. Blackwolf

morgan617, I too sleep with lights on. Light over kitchen sink, one in bathroom and one outside. I sleep in the livingroom so I have a few cars going by, I moved the chair so it doesn't face the window. Thanks, Blackwolf

Checked the net, like suggested. Thanks. The only meds I take right now are Proamatine 5mg prn, up to 50mgs per day, and Toprol 50mg once a day. The only other other Rxs I have are Skelaxin 800mg for muscle spasms, not so bad right now. And last of all, Amytriptaline 10mg to 35mg prn to help me sleep, I only take it when I'm really needing to sleep. Long time use makes me sick to my stomach. My GP is absolutly USELESS!!! Can't switch thou, I recieve a little help from the state on office visits. Thank you all. Blackwolf

Don't give up!!! It took us, my husband and I almost 2 1/2 years to get approved. We've lost our home, one car, livestock, (horses and cattle), our friends. We had to move to a bigger town where it was easier to get help.I lost my drivers liscense and my job, I was a CNA in a nursing home in a close by town, They were going to help pay to go to school for my RN. And please, DON'T BE AFRAID TO ASK FOR HELP! We recieved assistance with food, heatting fuel, electricity, water and sewage. Check if your city, or state, has a help line. Call your state Senator. What ever you have to do. Don't stop fighting. When we finally one my case we were living on a monthly alotment of $375.00 from the state. After my trial, I was told by the court recorder that in the "little black book" of diseases they use to determine disabality doesn't even list dysautonomias like OH, POTS of any kind. Never give up!! We, as a family, now recieve nearly $2,000.00 a month form SSDI. My husband is my caretaker, and he also suffers from severe social anxiety, depression and a form of post trammatic stress syn. from a terriblly abusive father. I have two kids, a son, Andrew now 10, and a daughter, Lorrie, just 7. Blackwolf

Thanks for the ideas, I'll give some of it a try. I reciently tried some over the counter drugs, no luck yet, but I'll keep looking. As to the motion sickness, it seems to be getting really bad. Does any one have trouble with flashing lights? Out of service stoplights, light bars on trucks and emergency equipment really make me feel bad to. And strobe lights on TV. Any ideas? Thanks, Blackwolf

My family and I decided to have a nite out and go see some movies. We have a great little theater in town that shows movies for 3 bucks, all the time 2 buck for kids before 6pm. The first movie we saw was The Day After Tommarrow, not really all that bad. I had the worst feelling of vertigo during many of the swooping, or flying scenes. To make matters worse, we then went to Spider Man 2, I nearly got sick. I felt so confused afterward, I lost my little pill case. I told the Manager, no good. They search all over for it! They were really very nice about it. The last few days have been really bad all around. My pain has gotten bad enough so I can't sleep very well. My Bp has been dropping to low a lot, I don't want to eat, or over eat, YUK! It doesn't help the have the flickering lights before my eyes either. I guess I'm just ranting again, but I really need to. It's been really wonderful to have people to talk to who know what you're going thru. I was reconmemded this site by my Aunt, A cardio nurse. She was the one who suggested I get tested for the POTS. Back to the vertigo, it also strikes when I'm sleeping. Of course, DOc says "i'm OK". Blackwolf

Ditto here, happens all the time to me. My cardio Doc doesn't even use a mech. BP machine with me. Even in my Primary Doc office they know not to even bring one in. 1 out of 3 times, most nurses can't even hear it, they just go by the needle bounce. You are not alone, Blackwolf

I have had vision problems for a few weeks now. My regular MD said I was fine. I don't have the bounce in BP like you. If I lay down flat, my Bp drops, if I get up to fast, it drops. As to the flickering lights, I really get bad as my Bp drops. But I do have constant spots of flickering. I'm trying to get my Doc to get more info on POTS, but like most, He thinks he knows "just what to do". Sorry, ranting again!! I guess I would like to know if you have "greying out" when you have the "lights"? Sometimes I do, but never quite blackout. Blackwolf

I have had chronic back pain for years, mostly upper back. Once in a while, I've had low back pain. It was " nerve inflamation" my Doc said. He told me to rest with my legs elevated and to ice my back every few hours as needed. He also recomended ibuprofen, Which I can't take. I'm a fraid I can't help more than that. Good luck

Thanks for the suggestions. I'll give them a try. My liver enzymes are back to normal now. And as to the ProAmatine, I've been on it for over 4 years now. The goosebumps I get only when I have to much ProAmatine, 35+ mgs. Thanks, Blackwolf

Almost all drug companies have some type of Patient ***. programs. Check with your Doc or check online with the drug companies themselves. If it wasn't for the add from Shire US, I would never be able to afford the ProAmatine I take. I pay about $170.00 for 600 tablets. I also get my Toprol FREE. 90 days worth at a time. I think remember a web site where you could chekc to see if your drugs were covered, but I can't think of the address. Good luck All, I'm going to go stare up at the celling for a while, HA HA. Blackwolf

I wonder if anyone else has the feeling of bugs crawling on your skin, I seem to get it when I am really tired, to hot or just as I am waking up. I find it hard to get back to sleep when I wake up feeling that way. I get it mostly on my neck, back and chest area, but when I'm too hot, I get it everywhere. The worst is when I'm waking up, it is almost painfull!!! Any ideas on what it is or what to do about it. P.S. I sleep upright either in a recliner or with support pillows. I haven't laid down flat on my back for about 8+ years. To lay down flat is shear agony!! I feel like I'm drowning and my skull is being crushed. My regular Doc says my Bp drops like a rock, can't even be read. I have standing orders not lay my flat with the Hospital except for the most needed tests. How about that? Any ideas would be great, Thanks, Blackwolf

I've had sleeping trouble for over a year now. I find the biggest thing that helps me is not to nap. I know it seems to be hard, I'm also a Mom to a 10 and 7 year old. At this point in my illness, I dont know how you keep up with a little one. I have to admit that I do take a pill to help me sleep. I currently use Amytriptline to sleep, I take it once or twice a week to help me stay on a schedule. Otherwise I find my sleeping to to disturbed to do anything. At least when I wake up, I have a few hours of less pain and a little more energy for later in the day when my kids are really active. Hope you find some that works for you. Blackwolf

I also go through the same thing. It comes in waves, just like many of my other symptoms. I never have it last more than a few days at a time. before my liver function enzymes became to high, I was on Paxil, it reduced a lot of the feeling of anxiety when my body was "acting up". but I heard from one other person that Wellbutrin worked really well for her. I don't know how good your Doc is but it is a subject that you should really discuss. If all else fails, find a new Doc. Good Luck, Blackwolf

I'm new to this site, but not to your pain. I've had severe chronic pain for 6+ years and I'm just now finding a Doc to work with. If your scared about the injected dyes for tests, ask for a quick allergy test, or possibly a nuclear study. They are both easier than having the reactions, I'm allergic to iodine so I understand the fear of reaction. Good luck on your tests, travel safe and I'll say a prayer for you blackwolf

I'm new to the site, but have had my trouble for nearly 3 years. I'm wondering who else has chronic pain, really bad pain. I have severe exercise intolerense and have found swimming to be the only place to work for me. My doctor's think I need to lose weight and I want to get the new procedure called Lap-Banding done. I reciently had a set back in treatment after having to stop most of my medications because of elevated liver functions. I have become rather depressed after stopping my Paxil. I have a wonderful husband how helps me alot! I still would like others to talk to. If any one lives in the area of Sioux Falls, SD, please fell free to contact me, jandreppe@sio.midco.net. Also please write me here, I love to here from you. Thank you for listening to me whine.