rdslots

A lot of people get significant benefit from Florinef, but like you, I could not tolerate it. I was swollen too -- so much so, you could hardly recognize me. I got my husband to take me to the DR's office, and he agreed it was not a good choice. Several years later, another DR wanted me to try it, and when I shared with him my previous experience, and asked if he was going to monitor me on the Florinef, he said very matter-of-factly, "No," and advised I go to the ER if I ran into a problem. Can you imagine? I told him to 'stick it' -- well, actually my husband did. I had a bad first reaction with Midodrine, too, but my cardiologist wanted me to give it a second try, at much lower dosages, and I did OK. You DO need to be in touch with the DR who prescribed the Florinef, but I completely understand your concern with the med. Good luck.

Maryfw, good luck with the 30 day event monitor. I went from the telemetry unit in the hospital after my initial episode and TTT, to a 30 day event monitor, to having a Reveal monitor implanted just beneath the skin, following an EP study. While most Reveal monitors only last about 9-12 months, mine continued recording for close to 18 months, so that was a nice surprise. It gave the info the cardiologist was looking for, and while I am a candidate for a pacemaker (at some point), I seem to be able to function on a time-released beta blocker that I take at bedtime. Originally, I took the Innopran XL every night, but then the cardiologist switched it to every other night because it was pulling my HR down too low. Now, I can tolerate it every night as my BP has been higher than it traditionally has -- whoooo-hooooo, a whopping 110/70! But, enough to offset a low HR. The benefit of the XL is that it kept me from feeling the highs and lows on other beta blockers. I tolerate this one the best of any I've ever been prescribed. I hope the monitor gives you and your DR some valuable info.

OK, I am sharing this in the event someone else may be as odd as what I am (and possibly Melissa/Sunfish), and may benefit from the info I have gleaned from a couple of sources. It seems most compression hose are made of the same materials, nylon, spandex, and silicone, in varying %, and while it is not UNheard of, it is unusual for people to be allergic to the fabric in the hose -- for most, it may be the silicone in the thigh-high band. Some elect the panty hose style, and do well. Others are allergic to the fabric itself, and it may be the nylon or the spandex. I made a call, after conducting, for me, an exhaustive web search, to a company called makemeheal and there are some cotton compression hose. So far, I am not allergic to cotton. The stockings, however, that the rep could find, were all thigh-high with a silicone band, or knee-high. She was, bless her heart, going to call the manufacturer to see if there were any options for me. I couldn't ask for more than that, unless the manufacturer would agree to make some especially for me. So, that's where I am. I think of all the billions of people in the world, many of them wearing compression hose for a lot of different reasons -- us, varicose veins, diabetics, people who stand on concrete floors at work all day, or sit all day -- and surely there is a demand for hypoallergenic compression hose? I did find a site for making compression bandages on your legs, but that looked more than miserable.

Unfortunately, the hives appeared all over the leg. The PA at the DR's office suggested I contact Bright Life to see if there were any other suggestions, or compression hose available made of different materials, but she said I may have to "chalk up" wearing compression hose. She had never heard of people being allergic to the fabric. I'm glad I had had some feedback from you folks, and my husband was home to see it for himself. I am really afraid to try it again.

And to think you had time, and felt up to, responding to my little troubles. Hope this passes for you soon, and you feel better.

Because I had not had the hose on since Saturday, I thought I would try this this evening -- a run-through of sorts. So much for that. Withing two minutes of pulling them up, my legs started itching -- mildly. I thought perhaps it would pass, but after 30 minutes, I wanted to scream. Now I have a nice pink rash and the itching is driving me nuts -- a lot like hives. Unless there is a compression hose out there of completely different material, I think I may well be out-of-luck. ARRGGHH.

Promised I would get back to you all. I saw the PA at the vascular surgeon's office today, following the scan on my legs -- much to my chagrin I seem to have valve problems and varicosities in both legs, and according to the nurse, it's just a matter of time before the right leg starts bothering me. We compared the materials in the JOBST hose to that in the Mediven, and while the materials are the same, some of the % are different. Because we haven't been able to rule-out an allergy to the actual fabric of the hose, I am supposed to try them again to determine if the rash on my legs was indeed from the stockings. There is no doubt that the grippers at the top of the hose blistered my skin -- this many days later, and you can still see it. JOBST guarantees their hose, so if I am allergic to the hose themselves, I can return this pair as well as the second pair the Med Supply has ordered for me. I guess they will reimburse my INS company. Come tomorrow, I will try the hose again to see if the rash down the leg(s) returns. I either have to roll the top down to keep it away from my skin, or the PA suggested putting a layer of cotton flannel between the band at the top and my skin. I find it hard to believe that the vascular surgeon's office has yet to see anyone with a reaction to compression hose. Are we that much of a minority? In the event I can actually tolerate the fabric of the hose, I am willing to try the pantyhose variety, but just how much more difficult are they to get on? and are they h-o-t? I am so sensitive to the heat.

Thanks again for the feedback. I'll be sure to let you know what I find out tomorrow when I call the vacular surgeon's office, and go by the Medical Supply place. I don't think the Med Supply carried anything but the JOBST, but I do recall seeing the Mediven brand advertised in the surgeon's office. It's worth a try, I think, too. I am not chomping at the bit for surgery if other measures will help with the leg pain I experience.

Thank you very much, all of you. I had the rash/blisters first thing yesterday morning, and it made me cringe to even bathe in a cool shower. The rash is better but the blisters are still there, and it all continues to itch and burn. I really think it is a sensitivity to something in the hose, and in the grippers at the top of the thigh-high variety. I'm not sure exactly what the vascular surgeon will want to do, but I will be calling his office first thing in the morning. For the most part, I had the impression we were sort of 'jumping through hoops' as required by my INS carrier before he could request we actually address the veins and the valve in my left leg, in particular. Oh well. One more thing, huh? Oddly enough, Melissa, the entire time I taught, I used to wear tights that were tight, a mild compression of sorts, and they always made my legs feel better. Of course, in warm weather, I couldn't do that, and that is how I came to realize the benefit from wearing something like compression hose. I initially wore the knee high variety -- as advised by the cardiologist, after the initial NCS episode, but didn't see much benefit, in terms of keeping me off the floor. I only recently went into the thigh-highs because of the pain in my legs, especially the left one. I also looked at the JOBST website last night, and evidently there are rare instances when people are unable to wear the hose due to allergies and sensitivities to the materials in the stockings. You think another brand would be better in my situation? or all compression hose made of the same substances? Interesting info you all have shared. Now that I think about it, I have had reactions over the years to some brands of panty hose, and socks -- especially the ones with a lot of 'elastic' stretch to them. But never a reaction like this.

The stockings are about three weeks old. I noticed from the first time I put them on, my legs itched, but I assumed it was just an initial 'getting-used-to-the-compression' sort of thing. I wash them as directed in a mild detergent that has never caused me any problem (I have to be careful about that too). I don't use lotion. I was also fitted for the stockings so I don't think that is the problem. These are actual blisters like I have gotten from skin sensitivities in the past -- a burn of sorts, which is what a bad allergy to latex is like. (My husband, the chemist, says it's xylene in latex that burns us.) I think I must be allergic to the material at the top of the hose used to help keep them on? This rash/blister is in the same pattern as the top 2-3" of the stockings, no less. Thanks for helping me explore possibilities. I wonder if anyone else out there has ever experienced something like this, and if maybe another brand might not do this? These were JOBST, and I thought they were a good brand.

If it helps you feel better, I was forced into early retirement because the public school system where I taught could not accommodate my NCS. Each time I hit the floor, they were required to call the EMTs, and I would find myself at the ER. I was lucky in that I did retire with 25+ years service, and was able to keep my INS benefits. Looking back, I could not have continued to teach, anyway. I am unable to sit or stand for long periods, and the demands of teaching were too much with these disorders. I hope you are able to find employment. You WOULD think such a thing would be illegal but I had a good attorney explain to me that while many things are unethical, they may not necessarily be illegal.

Your question caught my eye, so, for what it's worth. . . I have been seen by a vascular surgeon for leg pain, and had one Doppler scan done on my legs (and am scheduled for another this coming week). I have spider veins on my ankles, at my knees, and on my thighs. I have had them since I was a teen, and they were more pronounced when I was pregnant. The PA in the surgeon's office explained to me that spider veins were varicosities of varicose veins, and while I don't see any varicose veins, they are there -- deeper. I found that interesting. Varicose veins and spider veins tend to be hereditary, as well. My legs look just like my Father's, and his like his mother's. Likewise, my low BP, slow HR, and arrhythmias mimic his too. You can minimize the appearance of the spider veins, and any discomfort in your legs, with compression hose, and surprisingly enough, staying well-hydrated. Stay off your feet when you can, and if you work/live in a home with concrete floors, should really consider wearing tights, or low-compression hose, at the very least. Congratulations on your wedding.

Sensitive skin, here -- always has been, but this is a new one to me. The PCP and a vascular surgeon to whom I was referred, prescribed thigh-high compression hose. I have been wearing JOBST, and have been wearing them at night to help with leg pain. Today, I had a rash, and actual blisters, where I must be allergic to the material at the top of the hose. I am allergic to latex, and most adhesives (like what you find on EKG stickies, and Holter monitors). NOwhere on the box did I see 'latex.' They do have 17% spandex and 11% silicone in addition to the elastic fabric. Anyone here familiar with this? Do I try a different brand, and if so, what? Or do I go ahead and see if the INS company will consider 'zapping' some veins, and fixing the valve in my groin area, now? The vascular surgeon told me my carrier wants patients to try 'conservative measures,' and document them, for three months. My poor thighs have itched and burned all day, and are in the perfect pattern of the top of the hose.

Good for you, Brown Eyed Chick. Sounds like you are trying to deal with it, and learn from a bad situation. I don't think age has much to do with maturity -- we tend to assume that by certain ages, people are 'grownups.' Keep in mind that adolescence, for many, believe it or not, lasts well into their 30s. I have known many adults, who by all indication of age, should've been grown-up or mature, emotionally as well as physically, but for whatever reason weren't. Try to keep in mind we are the sum total of our experiences, including our upbringing. The ex's behavior may well have been modeled for him, which wouldn't excuse his own choice, but might explain some of his behavior. I think we make conscious choices to 'follow suit' or to work at being better. Don't overlook young people your own age, Girl, as age is not necessarily a precursor to maturity or morality.

My original diagnosis was NCS. My BP runs 90/60 but I have seen it as low as in the 80s/40s -- and once, it dipped into the 30s (but I had already been hospitalized so others were 'monitoring' me, too). My HR never gets out of the 60s, regardless of what I am doing. It has been the fatigue associated with all of this that gets me, as well as the unpredictablity of symptoms, etc. As time goes on, I have learned to pay attention to my body, and what goes on with me, and 'around' me, and I am more attuned to what may trigger an episode (which will cost me anywhere from 3-5 days, and has on occasion, knocked me for a loop for as long as ten days to two weeks). It just takes time and patience, and a good, caring MD or PA to help you sort through it all, John R.