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Elegiamore

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Everything posted by Elegiamore

  1. I got this goodie from my nurse sister-in-law inside of a get well card today. I want to share: "These are actual notes from Doctors' patients charts... 1. Patient has chest pain if she lies on her left side for over a year. 2. Patient has two teenage children, but no other abnormalities. 3. The patient has been depressed ever since she began seeing me in 1993. 4. Discharge status: Alive but without permission. 5. Healthy appearing decrepit 69 year old male. Mentally alert but forgetful. 6. The patient refused an autopsy. 7. Patient has left his white blood cells at another hospital. 8. Patient was seen by Dr. Pain, who felt we should sit on the abdomen and I agree. 11. She is numb from the toes down. 12. Patient was alert and unresponsive. 13. Rectal exam revealed a normal size thyroid (now that's what I call a complete rectal) 14. She stated she had been constipated for most of her life, until she got a divorce.
  2. Sue - sounds like you got the same neuro at Mayo FL I did! Sorry! The whole illness/journey is so frustrating. I've been tested for POTS at Mayo Rochester, Mayo Jax, Vandy, Emory University and Cleveland Clinic. FYI - hands down, Dr. Fouad, Syncope Center at Cleveland Clinic, did the best quality and professional tilt and other testing on me.
  3. Oh, Issie. What a traumatic, painful (and probably expensive) experience you've had! I'm so sorry. But thanks so much for sharing with me. I was already on 400 mg of magnesium at bedtime but I stopped when I was put on the Alinia, as the pharmacist told me to get off all supplements and OTC including imodium. Might have made it WORSE myself by stopping it re: spasms. I'll send Mr. Husband out for the colostrum this morning. THANK YOU! I'm letting him sleep in as we were up all night with me having the runs/cramps. When I woke up (slept three hours, almost my usual), I had a RCE from dehydration in my left eye (recurring corneal erosion, sorry); the pain is exquisite. BP is 200/110 and I show other POTsy/dehydration symptoms. Twelve hours after I had a bag of saline. NOT GOOD. Issie, I'm thinking I can't wait until tomorrow for my gastro appointment. I need either advice or something and I will need saline again by Friday. Let's hope my expensive, concierge pcp delivers quickly. THANKS.
  4. For me that is simply not true. I have had hyper A pots for 31 years and POTS. I am middle aged. I have had two heart attacks from coronary spasms from adrenaline rushes and continue to have them. I have diastolic heart failure from 30 years of tachycardia and on and off high bp control. I cannot retain any salt with saline in a port and almost died of that in 2003. I've had ten hospital trips in last 12 mos. for bp as high as 250/140. Think I might have a stroke? Does that sound life threatening to you? I am allergic to heparin in the port so I can die of a blood clot at any time, but if I don't get saline twice a week, I have a coronary spasm and the bp over 230/130. I have syncoped driving down I-75. I have to take a massive overdose of clonidine (got special approval from insurance), beta blockers and trandate plus other treatments to keep bp below 200/100. Any change in my body at all (a cold, walking extra) and I loose that bp control. I've not even gotten started. My pcp referred me to hospice. I have NO OTHER conditions other than POTS and probably ME/CFS. I have totally clean arteries (no idea how, but I do) but even a cool breeze will cause my coronary arteries to spasm. BECAUSE the linings of my arteries are so damaged by constant NE releases, per my cardio. I've watched this post for some time. I've finally decided to tell my truth. IN MY PERSONAL CASE, I ended up like this because I did NOT stop working and pushing myself. I think it's dangerous to pretend you can't die from dysautonomia. I'm warning my friends that it might be too late once you've overdone it. To me personally, suggesting that our illnesses are just inconveniences is demeaning. No, POTS IS A BIG DEAL to me.
  5. Thanks, guys. Will check out that Whole Foods stuff tomorrow, as hubby goes there to do his juicing. Hanna, good thinking; already on probiotics with no obvious results. MWise, the food suggestions are thumbs up and I'll try the bananas for variety. Boy, so sorry you/we all suffer so much! Domperidone = nobody has suggested it. That is EXACTLY the kind of info I needed. Reglan made me an adrenal nightmare and I tried something else (forgot) in the 90's that was taken off the market (so many pills, so little memory left - lol). PCP called back and said to stop the Alinia as he believes I have killed off whatever it will kill. Wants me to get saline tomorrow; being worked in at gastro on Friday so we'll see what else can be done. Just finished a batch of regular antiobiotics for pneumonia from CHFailure in February. Wonder where that fits in, even though I was already on probiotics at the time. Uncle Eddie, the family's Mayo clinic surgeon, thinks this is a combo of gastro overgrowth and gallbladder (because of the white bowels and such); googled it and it made sense. Hope it's not because I don't "do" surgery any longer after the last bout left me unable to retain salt. THANKS!
  6. Hello all. Looks like I have gastroparesis overgrowth and if I may quote Francis Bacon, "the remedy is worse than the cure." overgrowth symptoms: unbearable pain when eating anything, white bowels, massive gas that doesn't leave the body, so much so that I can't catch my breath, bad cramps, 7 pounds lost in 10 days. Can keep soft gushy down (toast, noodles, etc.) but not other foods. Put me on Alinia last Thur. to kill overgrowth bacterial types. Symptoms cut in half. HOWEVER, now I have the runs...white runs. Although I got a liter of saline in my port on Thursday, had runs all weekend, and got another liter yesterday a.m., I am still in a POTS event. BP dropping when standing, only 20 points apart (dehydrated?). BP 190/105 to 200/120 sitting. And all the other POTS syncope-ish junk plus the NE shakes. Taken all the meds I can. Get saline again on Thursday. No callback from dr. yet. Can't work me back into dr.s until Friday 3 p.m. (another sick weekend, I guess). Pharmacist said do NOT take any over the counter (Imodium) with this pill til dr. calls. Anybody hear of other treatments for this overgrowth? Anything natural that would help? Advice from those with this condition, please? I feel too badly to google for it. I need to get off Alinia. I still have three 1/2 days of pills left. I've been hospitalized for hypertensive urgency with prinzmetal angina twice since Nov. and I don't need more NE-induced expensive hospital stays. I HAVE to keep that fluid in my body! THANKS! And my heart goes out to all those battling this frustrating disease. Elegiamore
  7. Rich, this person can't be an POTS/autonomic dysfunction specialists or he wouldn't be asking you these questions. I hate to say this but you DO need plenty of testing, from big time places like Cleveland Clinic, Mayo, Vandy, etc. over more than a year's time. Your experience is SUBJECTIVE; scientific testing is OBJECTIVE. I got disability first time, no turndown, no attorney. In the state with the longest wait (GA). So I will offer my thoughts. First of all, make sure you meet the definition of being disabled as the Feds see it. I suggest you go to www.nolo.com and get a book on disability application process so you can be sure you in fact will get approved. NO ATTORNEY can get you approved if you are NOT sick enough as WELL AS UNRELIABLE. I have a friend who went 75% blind, has never worked but as a truck driver (no other skills or education) and was TURNED DOWN TWICE. I am serious. My adjudicator told me that the testing/records, constant hospitalizations and letters from big shots PLUS my INABILITY TO BE RELIABLE that got me disability. You have to prove at least one year of invalidism and frankly you probably need to prove MANY years of invalidism, being fired, etc. The adjudicator warned me half way through that nobody had heard of my conditions (except for ME/CFS and heart failure) and the info was over their heads! I shipped them a complex chart I made up showing how the symptoms and conditions tied together and paperwork from this site on my type of POTS. Two weeks later I was approved. Also I proved that I was at a doctor or in the hospital for approximately three full days each week (gave them my calendar) over three months and they actually checked them all out (unreal!). PROVE YOU ARE UNRELIABLE. I could not longer drive so how would I get to work? My vision is often blurry, but I have no notice when it happens - how can I be reliable? I could pass out on a client - how would that look? I get vertigo without notice - what if I'm in public representing my company? You also have to prove you won't get better. That requires a track record of concrete evidence from med record and such. I supplied letters from life long friends, my dentist, physicians, my minister, etc. stating what I was like before I got sick and how I am a pathetic nothing now. I had a past boss write a letter about how he had to fire me even though I was one of his best workers, because I got sick in front of clients and was out too much. You get the idea. These letters spelled out past specific achievements and displayed a life of an extremely active, type A personality that would NOT BE A FAKER/SLACKER. Prove who you USED to be and who you are reduced to NOW. POTS is just one illness. The symptoms can be listed as illness also such as hypovolemia, gastroparesis, or whatever issues you have and you can show testing for these. I found that knowing my illnesses inside out (thank you dinet) allowed me to "guide" my doctors in their letter content and to know which tests I wanted to submit and which weren't relevant enough to use. My primary care would NOT write a letter. I didn't let that bum me out. Only three "regular" specialists would write letters for me. But my two POTS doctors and two ME/CFS doctors wrote up doozies. They each charged $120 a piece for them. Plus a phone conference for the letter conversation ($400 each). You have to spend money to make money (lol). And of course, a positive attitude. Once you are convinced yourself that you meet the criteria, then you will project this to every doctor you consult with on this. I hope this helped you and maybe somebody else. Good luck whatever happens. We care here.
  8. I respectfully DISAGREE. Never dump a present doctor until you have tried and tested out a new doctor. THEN ditch him/her. It's extremely difficult to teach and train a physician about POTS. You have to give your crappy doctor plenty of opportunity. Also...once you create a trail of doctors, the NEW doctor will see that paper trail and comment that you are a doctor shopper. So therefore you must be a hypochondriac (especially if you are a woman). This has happened twice to me. My present concierge PCP has been terrible. I've been looking for a new one for six months with no luck as they do NOT want to treat person with a "rare" (meaning weird) illness. One prospective doctor even told me that if she has to learn "something new" she has no interest in treating me and showed me the door. I refused to pay for the appointment. Yes, the emotional toll is horrendous. But being left holding the bag when a relatively new doctor doesn't work out or fires you ("I am not qualified to treat as complex as a condition as you have, Ms. More") you better hope the old sorry physician is available. Good luck - keep trying and it will come together.
  9. I have repeatedly read throughout the years that there is an intricate relationship between adrenaline and insulin, which, natch, is activated by carbs. My sister read an article in Prevention on this and suggested I go low carb. WOW! I discovered a noticeable improvement Also, I DO have significant cardiac flairups/events from food sensitivities. ALCAT testing led to reduction of my prinzmetal angina (coronary artery spasms = dysautonomia, leading to one (or two) heart attacks). Good luck, Julie.
  10. I take protonix or prevacid. Yeah, that doesn't move food through your stomach, but it keeps me from throwing up. The side effects found with motility drugs were big no-no's for me. Gastroparesis in POTs just seems to me to be the effect of an adrenaline rush (or constant rush in many of our cases) - blood is pulled from the digestive system and our food just sits there. If this is the case (and the easiest explanation) then how would juicing help? For me, juice tears my stomach to pieces - glad it helps somebody. I have found that in my case, the better the NE control, the less gastroparesis (have been tested and do have it).
  11. http://www.medindia.net/news/view_main_print_new.asp Published in the Journal of Hypertension, this article, released on the 15th, states that "excess" salt consumption increases blood pressure because salt INCREASES release of norepinephrine! The articles states that volume overload has limited affect on blood pressure because they found the extra fluid just plumps up capillaries, not increasing bp. OMG! What does this say to those who force salt but have hyper POTS? What is "excess" salt? Can those of us with low salt readings even HAVE excess salt? Would one bag of saline too many move somebody with POTS from improvement to high NE/worsening by bringing on "excess" salt? Or one bag of chips, eaten to increase your salt load, shoot up your NE? Should NONE of us be forcing salt now? Hope to hear your thoughts.
  12. Well, just ignore the post. I screwed it up somehow. Accept my handicapped apologies. Probably not helpful anyway. Ellie
  13. (((((lieze)))), I'm so sorry for your major disappointment. But don't give up yet. There are lots of other approaches you can use. I found that one of the main reasons I was approved was that I had EXTENSIVE tilts, autonomic testing and cardiac testing at the top places - Mayo Clinic, Rochester, Cleveland Clinic, Syncope Dept., Mayo Clinic, Jacksonville and Emory Hospital, Atlanta. Not just diagnosis info but TESTING. And they showed I was in bad shape. Vandy would not test me (too sick) but did stated I was extreme disabled and had a poor prognosis. Then for my ME/CFS, I had extensive testing/docs from Dr. Charles Lapp, Hunters-Hopkins Clinic, Charlotte and Dr. Nancy Klimas, U of Miami - famous drs. known to SSDI. I was a patient for years at all these places. And I went more than once over a period of years for these tests. I know - IT COST ME A FORTUNE. I was paying back Mayo for 7 years, BTW. This is the extremely unfair part of disability application unless you have a normal, easy to document illness. We don't. IMHO, you can't get approved for POTS without the above - ANYBODY DO DIFFERENTLY? ALSO...I sent my OWN packet of medical records with explanations of what the tests meant, along with letters by Dr. Klimas and Dr. Lapp, and the head of cardiology at Emory, explaining my ME and POTS. The adjudicator read my stuff and not the stacks send from the doctors - very helpful. A stack of letters from family/friends about who I used to be and how I have deteriorated was also commented on by the adjudicator. As our other friends stated, you MUST emphasize why you are UNRELIABLE/UNDEPENDABLE for work, not just how sick you are, unless you have a terminal diagnosis. I used many tricks and angles to show this. I got approved in 1 yr 7 mos, straight through. No turndowns or attorneys and I'm in GA, the longest waiting state. But I'm REALLY, REALLY SICK. It took me over 6 mos. just to fill out the paperwork. So my case may be different. CALL YOUR SENATOR OR REPRESENTATIVE to Washington - they will help push an answer/new answer through.I have more advice for getting through first time. Glad to post it to anybody - just PM me - may take me some time to reply - not a good time now. (((((((rubytuesday)))))) - how sad! I hope you are slowing down for NYE. Get those feet up! Good luck in 2012 to us all. Ellie
  14. Y'all, I'm in. I live in metro Atlanta. Rachel, I know other POTS folks that aren't on this chat. Please PM me so that I can help you put this together and get others involved. Anybody interested in starting an actual support group in Metro Atlanta? I have lots of ideas on this but just can't do it myself. Hope this works out - suddenly I have something to look forward to attending! I'm excited! A way to have this event online so that others could join via a chat might be good also. thanks for more information, Rachel. Elegiamore
  15. Well, fire, I was totally unable to take progesterone supplements when my early menopause started around 42. They just caused major flairups in all conditions (CFS/ME, POTS, fibro, etc.). Yet I had no trouble with estrogen. And I have next to no aldosterone whenever tested. Or none period. FYI...Ellie
  16. Well, thank you for asking! 718, sorry you got these diagnoses but...glad you have diagnoses now! lol! Information leads to progress. Today is my anniversary and my husband has not left me even though I am good for nothing but a disability check these days. So I am so grateful he is still here! And Happy New Year to us all - let's be confident that new treatments will be there for us in 2012. Thanks for the post today.
  17. Dr. Fouad is excellent on diagnosis but treatment is not what she does, in my experience. However, I did have some negative experiences with her. Feel free to send me a PM for more information. Good luck, runningwild. I bet you will get your diagnosis at a minimum and can then make progress in treatment. Angela, do you see somebody other that Dr. Fouad? Would LOVE to know who treats you there.
  18. Well, I can add that I did a standard biofeedback program years ago with the goal of normalizing my blood pressure (hyper A POTS). It was expensive but it worked...for a period of time. The bp control was maybe improved 20% only. For me, it was simply too exhausting to do the concentration involved. I found that I could NOT maintain the program without weekly classes/updates due to, again, the exhaustion from trying and my cognitive challenges in retaining how to do the process. Frankly, I ended up very depressed as I was pushed to believe that if I tried harder, I could have been cured. And with constant shingles from the STRESS of trying to cure myself. I'm with firewalker on this one.
  19. As if we didn't have enough on our plates, we have to deal with friends, lovers and relatives that are CLUELESS. I feel for you all. The partner/spouse bit is the hardest. Here is what I've tried for 20 years+ (close friends/family - other don'e know). I've played down how sick I am for ages. Nobody asked for info but would often give me rides. I always went to social events, even if I was sick a weeks afterwards. Did the "right things" for friends in trouble. Then massive flairups/cardiac issues put me in the hospital and/or in ICU constantly. They say "hey, how could you suddenly be so sick when you were just kinda sick all these years? I think you exaggerating for sympathy. I think you just haven't gone out with us because you are a slacker. And it's some kind of CFS, make believe deal anyway, right? Nobody can have so many ailments at once - what baloney." Then I tried being honest, telling close friends/family the details. Backfired. Little sympathy. Called me a a WHINER and they didn't want to hear about it. But when hospitalized at least they believed it. But didn't call or visit. Next my PCP asks me to enter hospice. He insisted I tell relatives I'm a goner and we need help. OH NO - they all freaked and have stopped talking to me - they are "afraid!" And my bro and sis in law are NURSES! No help at all offered including financial from wealthy in laws. My (no longer) best friend says I am a mirror - she's my age, not old and doesn't want to be near sickness/death. As she smokes, drinks, unsafe sex, etc. she feels GUILTY that I'm the sick one, not her. Being around me makes her remember she could be next, so ta ta, Elegia. Why do people with cancer and other diseases not get this crap? They are always getting offers of caregiving and support. Local support groups is my guess, lucky dogs. Worse yet, now I see my friends/family as BABIES and LOOSER, who couldn't handle what we brave souls go through every day. I'm starting to hate them also. Now as Lieve suggests, I just try to stay alive myself and let it all go. IT'S NOT FAIR. Anybody with a better, more effective approach? On my third therapist - no help at all.
  20. Yes - please look at the cardizem post before yours today - they are practically the same meds and both cause pooling, edema and tachycardia in many/most POTS patients. WORST med to start you on. My advice - ANOTHER DOCTOR QUICKLY. READ the section on this website on what drugs to take and not take ("What to do" and "What not to do."). Then you will see why, if I were you, I would run from the calan. High bp with POTS needs to start with clonidine or beta blockers. ALL BETA BLOCKERS are not equal. Lopressor, FYI, does NOT lower bp from high adrenaline, for instance. Some don't lower heart rate at all. Others lower heart rate and bp. I take Kerlone, a 20 year old beta blocker that has strong anti-tachycardia results. Nothing else works as well on me. Calcium blockers open blood vessels which can lead to pooling and POTs symptoms. If you have low blood volume (hypovolemia) you need to avoid these meds, and diuretics also. Like the plague. You just need to educate yourself, fully and quickly, before more inappropriate meds are forced on you. Good luck with education comes better health.
  21. yep, fibro and POTS here. And ALSO complex regional pain syndrome; apparently it is related to an up regulated sympathetic system (that's me!). You might ask about this as when I found out I had CRPS as well as or in some places instead of fibro, I got better treatment and pain relief. The shower deal is a disaster that I have no way around. My sincere sympathy and empathy to your challenges. My approach: shower seated as much as possible, only wash my hair x 2 a week - the hands over the head part really screws with POTS. Can't get out of the hot bath once I sit down in it. As I have no life at all other than online just the doctors seem me looking dirty and frightful, I'm over it. Good luck to us all.
  22. P. S. Cardizem (sp) is CONTRAINDICATED with clonidine, which shuts a bunch of us out the first place. Thanks, Peregrine - we will see how the letter works and I DID have it posted at my cardio's hospital records also. The idea of the Ativan sign is great but...why in the **** can't these medical pros just get it right from your chart? It's crazy! And yes, I had a scary one with Ativan. Knocked me out with it during a hypertensive crisis. Woke up feeing somebody stroking my hair and couldn't remember WHEN and WHERE (what ER, etc.) I was in. Like a dummy, I asked for my boyfriend from the past - but it was my HUSBAND BRUSHING MY HAIR! oops!!!!! lol!!!! Elegiamore.
  23. P. S. Cardizem (sp) is CONTRAINDICATED with clonidine, which shuts a bunch of us out the first place.
  24. Yes, I have shingles and other herpes constantly - since I was 19 (in my 50's now). I've had my immune system analyzed by Dr. Klimas, ME/CFS immunologist from U of Miami and I have endless active mono, six types of herpes and coxsackie and other viruses that are constantly active. And like most ME folks, no natural killer cells. Mayo Clinic has diagnosed me with autoimmune autonomic neuropathy, subset of hyperadrenaline POTS. So seems like shingles would be expected in POTS patients that came down with a "post viral" dysautonomia...or the viruses are ALWAYS ACTIVE and were never "post." In other words, folks with damaged immune systems and perhaps a constant viral cause of their POTS. Good luck - shingles had me unable to sit/stand without syncope - massive brain fog - and more for two months this fall, i.e., a very bad M.E. flairup. And my POTS is still screwed up afterwards. My sympathy on the shingles - it's ****.
  25. Well, the cardizem was a very bad move for me. You can see on dinet.org that they are CONTRAINDICATED but drs. keep pushing them on me, over and over, even when they claim they have read the dinet.org pill section. I have hyper adrenaline POTs and have been unable to keep my BP low enough with beta blockers, alpha blockers, clonidine and saline IVs. While in the hospital trying to stop coronary spasms/very high bp, an on-call cardiologist insisted he put me on Cardizem. Within two days I had tachycardia and endless throwing up. Again, it opens blood vessels in the legs and leads to swelling and pooling, which is most of us means POTS symptoms. So I would go back to the good doctor with a list of meds from this website that WORK and a list of those that don't. Might help a tad. Any pointers as to HOW to deal with cardiologist that are totally clueless when you are in an emergency situation? My cardio was unavailable, my med records clearly showed I needed labetalol (trandate), atavan and saline but instead I got TWO DIURETICS and Cardizem. I had to check out with the spasms unresolved to keep them from hurting me further. Been sick for over a week cause of it. I asked the cardio for a letter today to keep in my wallet for ER visits. Any ideas folks?
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