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Everything posted by rdslots

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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.
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. 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.
  16. Diagnosed at 48, three years ago, and have been on a roller coaster ride since. It does seem like this past year has been the best in terms of getting the meds straight -- at least 'straight enough' to give me some semblance of normalcy. I have recently gone back into the classroom, even, on a limited basis, as a substitute teacher, so I really feel encouraged. I think the real key is finding a DR (and it took me three years) who will work with you, is willing to educate him/herself on the disorder, and will listen to you (and others like us) as to what you think might help you -- of course, that means doing some homework, yourself, and learning to express your concerns/wishes, etc., without letting your own frustration over the whole situation dominate. I seem to learn from others who offer suggestions, share past experiences, from reading and researching on my own, conferring with doctors (a cardiologist and a neurologist), and being willing to try different things. It has been the MOST difficult thing I have ever had to deal with, because I had been used to medical problems being 'fixed,' and dysautonomias are never fixed -- just managed. It took me a long time to accept that.
  17. Gee, what a surprise! This topic here? Brown-eyed Chick, let the jerk go, Sweetie. Pick yourself up, brush yourself off, look in the mirror at what a wonderful person you are for NOT having anything to do with a person of such l-o-w caliber, Honey. A cheater is a cheater is a cheater, in spite of what others would have you believe. In her day, my Mother was a beauty -- she was often compared to the movie stars of the 50s with her gorgeous thick head of blonde hair, striking eyes, and a Marilyn Monroe figure, from the WAIST UP. Because she had suffered from polio as a small child, had one leg significantly smaller than the other, walked with crutches and/or a limp, she was sure NO ONE would ever be interested in her, either. Sadly enough, she tells stories of arriving at places early, and being seated when others came, just so no one would have to see her from the waist down. My Father thought her beautiful, liked her out-going personality, and fell in love with her in spite of her handicap. They married. I only wish I could tell you it ended happily-ever-after. But, your question had been, would you ever find someone who wanted you? YES. It will be someone less shallow as the fellow who could not accept your limitations, which would have been acceptable, forgivable, understandable -- but how much better off you are now to have not married the creep, only to have him sneak off and cheat with someone. PS Hope you felt no obligation to give the ring back. Have it re-set into a lovely necklace for yourself, and be grateful it didn't turn into a millstone around your neck later. I am not a big fan of Dr. Phil McGraw, particularly, but I do think some of the best advice I ever heard him give, as a marriage counselor, was that if you were in a marriage for selfish reasons, you were in that marriage for the wrong reasons. I agree with his suggestion that every day, you ask yourself, "What can I do to make my partner's day a better one?" When you give to another, unselfishly, and with love, whether it be a spouse or a friend, what you receive in turn, is ten-fold, if that other person was worthy of such love in the beginning. If not worthy, you could hold out that he/she would learn from example -- but that often is like a "diamond in the rough," and takes a special person to see and persevere.
  18. Rahda, please be sure to share with your caregiver all of how you feel. Sometimes, I think we are hesitant to mention the depression or anxiety for any number of reasons, mostly all of the social stigmas, I think, that go along with letting others know you get anxious and dragged-down. I have had therapeutic benefits from Zoloft, which I understand is often prescribed to heart patients in addition to other meds like beta blockers, and BP medications. Most heart patients suffer from depression and anxiety -- seems to go along with the diagnosis. While I have done well with Zoloft, some don't, so it is like any other drug, a matter of giving it t-i-m-e and trying to get through any side effects. For me, the Zoloft kills my appetite -- there are days when I have to assess whether I ate or not -- but for others, it gives them an appetite. I was also initially experiencing mild headaches and some nausea, but those passed, especially if I put something in my stomach with it -- usually a banana and a glass of milk, or even a few crackers, or an apple. Zoloft also still makes me a little sleepy, but that passes fairly too.
  19. Jess, my understanding is that is may take quite a while for the drugs to reach efficacy for you. Two to three weeks, maybe for full effect? I was unable to take the Fluorinef, and am on the lowest possible dose of midodrine. The cardiologist has me taking midodrine in the a.m., and if I feel syncopal during the day, he has advised me to take another dose -- up to three daily, if need be. Each dose last for 3-4 hours, but you don't want to take it if you will need to lie down at some point. It really raises the blood pressure in that position. The greatest contributor to fatigue, for me, is the beta blocker prescribed for arrythmias. You may really have to 'experiment' with the doses, and when you take your medications. Try not to get too frustrated as stress can really exacerbate things for you. Good luck. We've all been there, done this!
  20. I haven't noticed any change, either. I take Innopran XL, every other day, and a tiny dose of midodrine every morning. At one time, I was taken completely off the beta blocks -- pulling my BP too low -- but I could not stand the arrythmias, nor how I felt, so the cardiologist and I compromised. Every other day was the only way I could stay on the Innopran as there was no smaller dose as an XL. I have seen much improvment these past few months. I am on my feet longer, not passing out, and only occasionally aware of the arrythmias. I am dizzy from time to time, and still 'wobbly' but this occurs when I am over-tired. Good luck.
  21. I tried to ask, unsuccessfully, if any of you are/were aware of any efforts to get our concerns, as sufferers of dysautonomias, before members of Congress. Please understand that I am not soliciting anything here, other than information of how to better organize ourselves, under an 'umbrella of fellow autonomic disorder sufferers,' and get information out to others. I really don't think it much matters what we call ourselves, or what organizations we say we represent, but if we start by writing our own Congressmen, even if it is only as individuals, can it not make a difference? Sign me, Clueless Here
  22. Well, I must say I am a bit confused here. Are we not all in the same boat? This drives me nuts. There are so many constructive ways to inform/educate others about the disorders we find ourselves afflicted with -- and I would think we can all work together. If there is some sort of form letter out there, from any and all dysautonomic organizations, wouldn't we all benefit from it -- regardless of its origination? OK. My request is simply to get in touch with your own local legislators and carry our needs and concerns as far as you can, which hopefully will be to DC. If people don't know about us, I don't see how they can help us.
  23. Are any of you aware of the efforts being taken to inform our legislators, at the local level(s), to take out needs/concerns/pleas for help before Congress? I would hope all of the associations with dysautonomia concerns would help in the effort(s), as would the three million of us affected with this myriad of disorders. My husband makes several trips to DC annually, in conjunction with his work, and he says the 'disabled' he sees there command quite a bit of attention.
  24. This happens to me, too, on a regular basis. I force the liquids -- water, more than anything else -- and that helps. Water is its own natural diuretic, as odd as that seems. I have poor circulation, it seems, and always have had the swelling and purple, angry veins, spider veins, and some leg pain, but I think it has been compounded by some of the medications (I had to stop with the fluodrocortisone or Florinef for that reason), and the fact I am supposed to use salt -- liberally -- according to my cardiologist. Stay off your feet when you can, drink plenty of water, and wear comfortable, sensible shoes. The heat this time of the year also adds to the problem. You may notice this also affects your hands and fingers? It is awfully uncomfortable, especially in the hot summer months.
  25. Interestingly enough, I had to see an allergist many years ago, and he confirmed what I had already surmised -- mold and mildew, as well as pet dander, really wreaked havoc on my sinuses and head. I'm not sure I would make a correlation between the two, unless we are willing to entertain correlations between other things in our environments, too. There must be something in our genes and environments, that pre-disposes us? My father has many of the problems I have, but he has suffered a heart attack brought about by arrythmias, and he says his mother was the same. Genetically, a female will inherit more from the father's side, and a male, from his mother's side -- so this much, at least makes sense to me. I also look at my own child, who was an extremely colicky baby, and the pediatrican determined she had not only an under-developed gastric system, but an under-developed nervous system as well. The colick, in spite of being breastfed, was symptomatic of the other, and I am holding my breath to see whether she will, in her lifetime, and if I am still around to see it, suffer from dysautonomia(s). Seems likely to me, in spite of the fact that, genetically, she should have more of her father's genes.
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