blackwolf

Welcome Lisa, You will see this site is one of the best ones around. I've learned so much here. I look forward to reading and responding. I'm also loking for the second round of drug combo to work for me. Good luck! Blackwolf 33 yrs, mom of 2, POTS fibro/CFS

Here in South Dakota I spend most of the summer hot and all winter cold. This summer was very nice though and I got a little spoiled by it. I'm already having trouble with being cold. I use a small heating pad every nite to help warm up my feet and legs, slowly working my way up. I also get sweatty at nite, more toward morning (3-4 am), but I'm careful not to uncover too much, then I have to warm up all over again. Our first frost, killing frost that is, was about 11 days ago. Blackowlf

happy birthday to you happy birthday to you happy bithday dear Emilyyyyyyyy happy bithday tooooooo youuuuuuuuuuu! I'm hitting 34 in Feb. I also spent most of my 20's "sick". And have your party on a good day. A few weeks ago I went to my mom's with the thought of doing some sewing, ha, all we did was be giggly kids. I felt great and exhausted by time she got me home( we sat in the driveway laughing like idiots for about 10 minutes before she could drive, my dad stepped out to see if there was something wrong and just turned right around and pretended we we gone.) Blackwolf

I've had that discusion with one of my gps, I called my cardio. I see him on Tuesday. My gp had put me off for about 5 weeks now. My cardio was furious, he said he will call my gp on Monday too have alittle "chat". Last time my cardio did this, I had to switch docs as the first wouldn't see me any more, no skin off my chin. As little as my cardio knows about POTS I still like him. Blackwolf

Dear Beverly, I was on florinef for a few months when I first got sick, I just felt so wired I couldn't handle it. My bp didn't go up, I just felt really wired. I stopped and felt better in about 3 weeks. I haven't been on it since. I may have to try again as I am still "craching" and I am trying to stay away from being bed ridden. I have to see my cardio Tuesday and hopefully we can come up with somethig that will help. I'll ask if there are any alternatives to the florinef, I've only ever heard of the licorice root. I also drink salted liquids, my fav is beef broth. For a change, I add potatoe flakes and onion/garlic salts (it's good on taost too). I now how hard it is to eat when your "wired" but at least try to drink. I have two 32 oz. mugs I fill every night, they are gone by morning. I fill one up about 6 times a day. I don't use gatorade unless I'm not eating at all, then I dilute by half and add about 3 tablespoons of salt to about 32 ozs. I don't use salt tabs or drink just salty water, I can't stomach it !! I heavely salt most of my meals, meat/meat substities, veges, ect. I even make a butter mix, onion, garlic, dried parsley, salt and sometimes parmasion cheese, I even have this on my morning toast. Good luck, I'll write after I see my doc on Tuesday. Blackwolf

Dear Emily, Bad news here. My "yucky" stuff came out both ends at amazing speed, about 12 minutes either way. They did get the pictures though. They were "inconclusive". Polyops, no idea, sorry. Blackwolf

Dear Ernie, I'm sorry you are having all this trouble. I haven't blacked out for a little while lately, but I sure have gotten close. I was at the same stage you are and I hope not to go there again, at least for awhile. I haven't been out on my own, except to walk the dog, for 3 years now. And yes, I've taken the "plunge" in the road and in many parking lots. No one has run me over yet. Not funny I know(bad girl). As to being a human pin cushion, tried it a few times and got worse so I didn't go back. Good luck with your treatments, Blackwolf

Dear Amy, Fire your doctor and try again! No one should have to go thru that. "great doctor" and "well respected" mean very little to me. I have seen several docs that fit that same discription and fired all but 2. I lost them when I moved to another town. They are now 75 miles away. I'm reconsidering seeing them again just to get the help I need. As to weight gain, see a nutritionist. They can give you the best help of anyone. As many people have said here, try, try again. You may have to experiment alot to find the foods you can eat, that will stay down and that you can absorb the most from. I am still in that process now. Did you/do you take anything for the anxiety? I used to take Paxil, but don't now, wish I could. I am so sorry about your dog !!! I can totally relate, we just had to get rid of my cat, she was my best friend, I've had her for several years. Over the last few months I have developed an allergy to her. She was long haired, but I seem to be ok with the short hair we have(whatever). And one last thing, never worry about being whiny!! We understand and all have had those days/week/months that never seem to end and we rant and rave too.

Dear Calypso, Yes, this does go away with time. However, be careful, if it spreads to large areas it may become sepcess(sp?) a dangerous infection that can make you horrible ill. I didn't treat it once and it bounced around for about 4 months before I gave in and went on a round of antibiotics. It cleared up in about 6 days. Good luck and mabey try a little heat on the area and then something cool for a while. This often helps with the pain and discomfort. Blackwolf

I'm in the same boat as Ethansmom, I'm not allergic to eggs, but the last flu shot I got landed me in the hospital for 14 hours. My arm swelled up like a ballon and was red and hot. They thought I was having some kind of allergic reaction but I tested ok for eggs. The doc suggested I avoid the shots unless I had a huge need for the shot. I have been lucky as I have rarely had bouts of the flu. Blackwolf

I had my gall bladder out in 1997. I still have occasional trouble as I do form stones in the common duct. I have to be careful as to what I eat and how much. Problems come in waves and seem to unrelated to the POTS in my case. Blackwolf

Ditto here too. I can't go out in the heat or without drinking alot. I think Jersey Girl has something too. I also have trouble in malls, I feel over loaded. One of our malls has alot of natural lighting and I do better there, I still park right where the stores are that I want to see, and I'm in and out as fast as possible. Blackwolf

Dear Nina, Good luck and I hope you are ok. Out of all of this, I have one question. Have you ever had surgery in that area? I have huge areas of scaring and once in a while something "tears" and it is very painful for about 10 to 12 days. Anyway, good luck and I hope you feel better soon. Blackwolf

Dear Ernie, This one must have gotten passed me. Being sick in my dreams is almost a regular thing for me. Right now it is really bad as I have been getting worse. I seem to be at one extreme or the other, very sick or really healthy. I have dreams of being in a wheel chair (something I'm trying to avoid right now) and racing my old horses thru the pastures where I used to live (tough work as they were green broke and mostly stallions). The worst ones are fainting for me. I ususally wake up shaking. As to being more tired, that only happens sometimes. Blackwolf

I did that too a lot after eating. My biggest change to diet is dairy, very little or just certain items now. I still have a lot of "flem" after eating but I'm still working on diet changes. My next step is wheat gluten(sp?). That one is a lot harder for me. About 14 months ago, I had to change what and how much meat I ate. Now I eat mostly fish, chicken, venisin(deer, buffalo and rabbit) and suppliment with soy product, little or no beef and pork. Good luck, Blackwolf

I guess that everyone is different on Midodrine. I tried a few different doses before I found what works for me. I take 5mg every 4 hours when not doing anything but 5mg every 2 hours when doing stuff. I top out at 40mgs a day. Anymore and I get bad headaches and ringing ears(more than normal). Good luck, I hope you find something that works. Blackwolf

I have to ask, when does this happen? I do the muscle spams thing alot. It is ususally at it's worst around bed time or when I'm trying to relax. Do you have anything else odd happening? ear aches, headaches? Try a heating pad to relax your muscles as you finish up your day. Or mabey a hot shower or bath? Good luck, Blackwolf PS As too the balance, I haven't had good balance for years( I use a cane to help out ). Memory is a come and go thing too.

Dear Rita, I have to agree with the others. BE CAREFUL! I would do like you were thinking, start low and at home. But I have to say if you could get a PT program, that might be better. I personally just do light weights and swim when I can.For my legs I do leg lifts with 3 pound ankle weights and excercises for the pool. As to how long to see results, good guess. I worked out like that for 14 months and had some changes, but nothing to get really excited about. Blackwolf

Jessica, You will still need a script from a doc to get the assistance, But you can start the app. process: Shire US Inc. Patient Assistance Program PO Box 698 Somerville, NJ 08876 908-203-0657 Blackwolf

Oh Boy! Personally I would do as suggested, get a referral to an electr. cardio. And as to being dx'd, it was my ob/gyn who first suggested POTS. I hope you have better luck on the next go around with doctors. Blackwolf PS I also had a nuero who suggested I needed to get out more and lose weight. Count him as fired!

Just a note, you usually have to be not working for 5 months for the SSDI waiting period. Blackwolf

Sometimes I get so far ahead of what I'm thinking vs. saying, my hubby will stop me and say, "I missed that low flying thought, please repeat". I also meditate once a day, twice if I can. I also use the one word chant "breath". I have done this for years so I'm pretty good at it now. And as fast as they come, the faster they go. I have notepads and pens EVERYWHERE. Not kidding either, even in the bathroom, kithchen(2), bedroom(2), living room(4), in the car, my purse... you get the idea. Thank goodness I can multitask. Blackwolf

Hi Beverly, Tell Nicole to hang on, it does get better. I'm sending her good vibes(=== ) As to BB(beta blockers), I personally take Toprol XL(extended release), brand name for Atenolol, I happen to recieve this free, though Atenolol usually runs about $10.00 a month. For the paic attacks, I'm afraid I have very little to offer. Since stopping Paxil about Feb., I too have relied on my biofeedback breathing tech. for calming my anxiety. And I have to say, push the fluids. I know there are some of us who don't get out of bed without close to a liter of water in our system. I also agree with the compression hose, even in bed during the day. Give Nicole plenty of hugs and kissess too. And yourself, you are one of the most supportive parents I've seen. Blackwolf

Dear Nicole and Beverly, As most everyone else said, welcome.I am sorry anyone has to go through this, especially the younger ones. Just a few quick comments. Salt- I take about 5-6 gms a day, my favorite source is beef broth. I also use sea salt over table salt, though for differnet reasons(iodine allergy) Other Meds- I would also reconmend a low dose beta-blaocker. Loss of appetite and nausea, that one you might have to find what works for you. IV's are ok, with me NO WAY(every time I need it or give blood, they turn me into a human pincushion), I try to suck on ice chips. How much does she drink? I average about a gallon a day.Yes, that's a lot. I cannot tolerate florinef. I hope you get the help you need to get her and yoursleves back on your feet. Blackwolf

Ok, I've stayed out of this one way to long! Haven't typed for awhile.But for being "whiny" this is probalbly one of the crazist conversations of read. Whinny you are not, as to total back spasm and not feeling it, not a suprise to me. Been doing that for the last 7 days(ooouuuccchhh!!). PT is great stuff, can you do it in a pool, I did, it was great. And yes, this "mommy" says "now be good and do what the nice lady(man) tells you to". As to falling down and going boom, I personally use a cane. Good for walking, scaring small animals(walking dog in the middle of the nite) and threatening nasty kids(mostly my own, just kidding). Merril, thanks to you, here in South Dakota, yiddish is few and far between. Blackwolf