blackwolf

I know how you feel, I've worked out a few things that work for us. 1. More play before sex. The actual act of intercourse goes a little quicker when you're a little more "excited" 2. BREATH, never hold your breath. Slow down, don't nec. have to stop. 3. Positions, experiment with them. I know it sounds bad but rent some videos on Kuma Satra, I can't lay down flat but I can do other things! And I'm a heavy weight(260 lbs). 4. Again, as earlier, message is relaxing. Try reading up of sensual message, great stuff. 5. Lack of desire? oh yah. been there, done that. If it doesn't bother you, mabey offer your partner a "hand job". My hubby and I did this often when I had no desire. Best of Luck Blackwolf

I've had it for nearly 2 years now myself. I find that cold water in a baggie(no ice) and then wrapping the swollen area helps. When we get up and move around there are certain areas that are prone to pooling edema. That is areas that can't get rid of extra fluid at a normal pace and it creates "puffy" and sometimes tender areas. I don't know, but I guess part of my problem is that I haven't layed flat or on my stomach for years. I have several areas in both legs that give my trouble. As I said before cold water and wraps are what work best for me. Ice or a bag of frozen veges work good too, but I find it a little to painful. As to taking Mag. that's up to you, it upsets my stomach if I take to much. Good Luck, Blackwolf

I don't know if it would make a difference to you but Norpace didn't work for me. HOWEVER, generic script DID, I used to get Dysopirmide 150mg twice daily and did do pretty good on it. Do to increased liver enzyme trouble I had to stop. And yes, I also had "break through" in the medications abitlity to control my heart rate. My doc decided to add Toprol, but it does lower your blood pressure. I am currently waiting to hear back from my doc as the Toprol is no longer controlling my heart rate at all. I'm bouncing from 30 to 180 several times a day. Good Luck Blackwolf

I've graduated to solid food, but I'm still taking it easy. I seem to do best on slimfast in the am and light foods in the pm. Yes I'm much more nausiated in the am. I like to relate it to "morning sickness". Still haging on. Blackwolf

I guess my biggest problem is just getting the food to stay down. I wonder if a digestive enzyme is the right thing to use? I'll give it some thought and see what comes ofit. Thanks Blackwolf P.S. I'm managing on slimfast and taost ok right now but I think I'll try some light fish this weekend. I'll let you know how it goes later.

I don't know if your Doc gave you any info on mitral valve prolapse, but I have heard of it and many of those symptoms sound just like it. I heard that sometimes the problem starts off as panic or anxiety and feeds off its self to creat more problems. I do have this to say, you might feel better going to the dysautonomia center at Vanderbilt. If nothing else, they can get things under control and start you on the right track. B persistant in getting help!!! Good luck in helping your daughter. Blackwolf

Dear POTSparent, I also read that. I believe the statement was that garlic and nitrates can lower your blood pressure. Although I never saw it in a study. Your guess is as good as mine. I do know that food preserved with nitrites make my heart pound and race. My mother has the same problem. Hers is getting better. I tolerate it because sometimes I just want to have it. Mabey do an open search on the web and see what you find. Good Luck Blackwolf

Jessica, Thanks, I wasn't to sure about trying the soy milk, but mabey I'll give it a try. I went with everyone to the pool today. It was pretty nice here in Sioux Falls SD, about 82 and 48% humidity. I'm tired now but just can't seem to sleep. I'm having some really bad brain fog. I'm sure I'll have to read this twice before I post it. As my son is fond of saying "It's not brain damage but drain bamage MOM!" Good nite(good morning!) Blackwolf

Dear Carol, I can understand your anger and confusion. But I would like to add this. For over 7 years I have been suffering from Fibromyalgia. There have been only a few drugs that really cut the pain.(demoral, morphin, darvocet) I'm allergic to most of the others. My one and only trial for a daily med. ended in the hospial after a violent reaction(celabrix sp?). I've tries Vioxx and almost everything else out there. And YES even pot! No luck. My trial with corison went just about as well, I ended up sick to my stomach. To make a long story short(too late), I have resorted to ice, asprin, and meditation. I have my room and my time to do it. Regular, every day( I know that sounds hard) meditation and relaxation does help. Good Luck Blackwolf P.S. I know this sounds funny, have you ever tries counting to ten, or twenty.

Sue,I have had 2 done. I was very painful the other was not. Mine were also for weakness, which I still have. Both tests were negative. But the nurse who did the test said that she knew of a few others with the same problem. Good Luck, Blackwolf

I guess I have about the same to say. My questions would be, 1. Is there any redness. swelling or is it hot to the touch? It could be an infamation of some kind (celluitis or blood vessel inflamation) I've had both. 2. Does it seem to be in one line or area, ie. does it seem to be running in a line down your leg or is it just all over? If it is just in a line, it could be a nerve, if it is all over I would bet on Fibro. My only suggestions would be Motin( ibuprophen) if you like, asprin is my best bet. If it seems to run down your leg, I might suggest icing your back right above or on your tailbone. Good luck, Blackwolf

I started higher and dropped down. It was suppressing my heart function. I'm now at 50mgs once a day. I'd say talk to your Doc about dropping it down then going back up if needed. Blackwolf

I was Dx with fibro. about 7 years ago. BEFORE the POTS. It never interfered with my life the way it does now. I used to just be extra achy especially after work. Before all this happened (POTS) I was doing ok and kept very busy. So which way does it go? Good question. Blackwolf

Morgan, I haven't quite got that low yet. But at this point, I'm doing ok on slimfast, broth and occasionally toast. It's been about 5 days now and I still don't see any end in site. I know I need to lose weight but I think it could be better anotherway. My regular Doc ordered some pills to help. All I feel right now is high and nausated. I know it's generic but it's called Prochlorperazine (10mg) Boy did I make a mistake!!! Talk at you all later Blackwolf

Dear Carol, you should NEVER move during a TTT!! I was strapped down in 6 places to prevent it. Even at Mayo, I was told not to move as it would alter the test results. As to a "positive or negative" result does not mean you must black out. I never completely blacked out(either in Sioux Falls or Mayo) and was told my test results were positive. I was started on ProAmatine(Midodrine) that very day. I was even given a pair of TEDS hose from the hospital for the trip home to help with any problems! They aparently didn't know what they were doing!! My Bp bounced around for about 10 minutes before it took a big plunge. My heart rate dropped and then shot up like crazy. THEY stopped the test when I got close to blacking out but didn't. TELL your DOC what happened.. Good Luck, Blackwolf

Dear Susan, I'm in the same boat, but you sound worse off than me. 1. Yes, I have bladder trouble. mostly when I'm really sick(vomiting, coughing) however I do have trouble with leakage when I'm very dizzy and lightheaded. 2. Hives, no-but I do get very flushed at times. 3. Numbness- oh yaa!, It varies between what I'm doing and time of day/nite. I have tingling and numbness in my hands and lower arms as well as my feet and legs. Most often this depends on heat, blood pressure(sitting vs. standing vs. laying) 4. Before I was dx and started midodrine(proamatine) and pressure stockings I black out several times a day. I still have trouble on occasion and I'm almost always confused for a few minutes when I wake up. 5. Not one of my problems, sorry. 6. I've had trouble with names and places for at least 3+ years. I'm often "foggy" and it even takes me several minutes to type these responces. I often forget what I'm taking about or how to spell words or just can't type.(I used to type 80+ wpm). Take care and rest. One question, do you eat salty foods and wear pressure stockings? They are vital to my not "hitting the ground". Remmember, "It's not the fall, it's the stop at the end!" Blackwolf

During my TTT i had no iv and still shook like crazy. My Doc didn't say anything about any tumor to me so i really don't know what to say. As to your other question, mabey check the Vandy site. they are usually some of the first to suggest poss. reasons. Blackwolf

Welcome Carol, Don't worry about "ranting" we do it to! I too have many of your problems, I was told "It was all in my head" so much, I nearly had a nervous breakdown. I was lucky enough to have a really nice PAC in the small town I lived in who took good care of me and got me to a Doc that accually listed. Unfortunately, when I lost my job, we lost our home and had to move to a bigger town You seem to know your stuff, this site is great. If they don't have it they know where to go. My first symptoms where both Tachy and orthostatic hypotension(OH). I also have fibromyalgia, vision diturbances, GI and bladder trouble. My heart does its own thing and can go from 25 to 175 when it wants. Right now the heat is my biggest enemy. I'm so heat intolerent. My worst problem is really what I've missed with my kids. My son (Andrew) is 10 1/2 and my daughter is just 7(Lorrie). I've been fighting this for 4+years, that's just been the worst of it, I think some of my problems started before that(about 7 1/2 years ago). Enough about me, welcome Blackwolf

When I was appling for my disability, there was a group of people that worked with Vocational Rehab. that did my evaluation as to what I could and couldn't do. I was refered to them when I was having a lot of trouble fainting and could no longer work as a CNA. During my evaluation, I was tested by an occupational therapist, a psychologist and had an evaluation by someone trained in "nuerlogical dysfunction". Mabey you should check to see if there is a group like this in your Voc. Rehab. group. They even sent someone with me for my trial, she was my case-worker for this group. I'm having major "fog" and can't remember the name of the group. DON'T GIVE UP!!! Blackwolf

Dear Sue, I have had such problems for nearly two years. It's on my right side. I've been tested for BPPV, it was "inconclusive". I had one Doc I saw say "IT MUST BE IN YOUR HEAD" Tell me something I don't know. I sleep upright in a chair and I don't have as bad of problems. Good luck, Blackwolf

Dear Jessica, for three months I've been trying to meditate before sleeping. I do feel more relaxed and I feel alittle better, but I'm still taking a long time to get to sleep. It is slowwly getting better, and I'm starting to sleep before 6 am. For over a year, I've been typing in a journal on my computer, I never save it unless it relates to my health. However the chose is up to you, I get a lot done, even designed a new quilt for my sister to make. Sleep well, Blackwolf

Dear cbhowell, I don't know about the others but they are nearly an everyday need for me. I only don't wear them when I know I'm not going to do anything. As to knee high vs. thigh high, I think you might want to discuss that with you're Doc. How do you feel and how much does low Blood pressure(Bp) effect you?Personally, it depends what you're going to do. In my case, I where the knee highs for short trips only. On the other hand, I'm heavy(working on losing) so I have to order my thigh highs. I have tried both the cheaper and more exspensive pairs, as to knee high, I really prefere the more costly Jobst brand, I like how it matches my skin and they last just a little longer. As to the thigh high, the are special ordered, I'm a "queen size" and petit, very hard to fiind in Walgreen's or Walmart. Good luck, Blacwolf

Thanks, all of you. Robyn, I have tried some broth, that went OK but I can only have a little at a time. The other thing that work for me is slimfast, but I have to by special milk. I like Dean's Easy, I get the taste of milk with out feeling sick. Ethandmom, can you have yogurt? I don't usually have the regular stuff, but I love Blue Bunny's frozen yogurt. How about soy products, I found this brand called Morningstar Farms. It tastes good and doesn't upset my stomach. But, again, I still can't eat very much of it. Thanks again, Blackwolf

I haven't been feeling well for a few days now and it's really hard to make myself eat. I know I need to lose weight, but this is not the way. My biggest problem is meat, any meat. It just sits in my stomach and Yuk. If I burp, I can taste what I ate yesterday. Help!!! Any ideas would be greatly app!!! Sorry, I seem to have the worst brain fog. Blackwolf

I know just what you mean. We lost our home in a small town when it took so long for SSDI to get approved. We had to move to a big town and try to make new friends. It was really tough, one of the reasons we moaved here was because my folks and my brother live here. It's great being so close to my family, but I still miss my friends and the people we had to leave behind. On a good note, we joined a new church that is very excepting of us and our health problems. The people there are kind, ask how we are and often offer to take the kids for a day if we need a break. In March we moved to a new house, on the opposite side of town, on hte edge of town. It's a ranch home with, wow, no steps, except to the basement. We have nice neighbors and some kids for ours to play with. Be patient, friends will come with time. Don't forget, we will be here for you too. Blackwolf