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rubytuesday

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  1. Ste[h555, Welcome to the group. I find this diverse field of dysautonomia to be much like the CVID that I have common but variable in everybody. I will share my 3 1/2 year journey with this. Mine started as 'neurogenic cardiosyncope' (I never knew what was happening to me and for the first three times, dismissed my incidents of near syncope trying to rationalize them, until the fourth that happened with my little grandson and landed me in the hospital with a cardiologist now involved. The TTT and 30 day event monitor and trials of Rx meds showed too many ectopic heart beats and the BP drop and heart rate racing. Treatment began in spring and I tried to continue my activities through summer and winter but the incidents only became more frequent. By the next spring, they did another TTT. Even though I did not pass out, the cardiac physiatrist began treatment for POTS. I started Florinef and Aldactone (couldn't tolerate the Florinef), then but over the summer I had more and more events (now with syncope). By the following spring, my cardiologist (after trying several meds) referred me to a well-respected cardiac specialist in dysautonomia/POTS. By the time I saw him, it was fall. I had 3 or 4 true syncope and still many near syncopes. When the specialist examined me and my records from the cardiologist, he explained to me that while I had had POTS earlier, now it was orthostatic hypotension and that my autonomic nervous system was in failure. I have been told the warnings of syncopal events would come less. I was given a lot of information about things I should do and things I must avoid. I am very thankful to know this as this will be my first summer going through this now in trying to avoid those triggers. For the times with the neurocardiogenic syncope and POTS, I was told to eat and drink salt. When the cardiac specialist saw my swollen purple feet he told me I was pooling blood and fluid and that with my situation, I need to avoid salt. I still have to try to stay very well hydrated. It is confusing and summer coming made me very nervous. I saw the specialist in follow-up this April and another Rx was added. My BP still runs low (usually) to low normal on the 2 meds. The goal is to get me hypertensive, then work on the hypertension. The cardiac specialist also told me that since my heart rate isn't responding with a surge when the BP tanks that I can anticipate the need of a pacemaker down the road (maybe due to the ANS failure). This new Rx is dropping my heart rate a little lower but I just feel tired and sometimes still get 'POTS'ish only I don't have the really high tachycardia as I'd had. Most of the time when my BP drops now, the heart rate stays between 60-80. This has been a great support group. I've learned a lot of information about dysautonomia on DINET. It is good to find answers as confusing as they may be. We have to take responsibilty for educating ourselves and others (I'm the first patient my cardiologist has had that has been so difficult to respond to treatment and he learns from my cardiac specialist through me for other patients he may have. At the last visit he even gave me a research paper about a med he had considered trying on me to ask my specialist about while he copied the three research papers the specialist gave to me of other Rxs they may consider). Blessings and good health. ruby
  2. My legs feel heavy and sometimes achey and tight around the ankles. My feet also turn reddish/purplish color. My feet have the sensation of feeling very cold. I pool blood and fluids so sometimes when the fluid pools with the blood, my toes get very very shiney and will get water blisters that turn to blood blisters on top and surrounding the toes, the calves and ankles feel tight if I try to walk or bend them.
  3. I have had a Chairi I for decades that seems to increase a little as I age but is something not routinely watched. The last MRI of my brain (supine) it was 7mm. My neurologist does not understand the significance of checking a seated MRI. I've also have constant neck pain and migraines. I do know I have some degeneration of my neck that showed when I had a CT of sinuses so to what degree and extent, I do not know. I've not had an MRI of my cervical spine for 10 years. I asked the PA at my cardiac specialist's office about the symptoms and Chiari I and she did not feel my symptoms would warrant pursuing considering outcomes and risks of some of the surgerical approaches to it. She felt strongly that it stems from my ANS failure.
  4. I know they use such agents if/when patients do not seem to be syncopal some times. I think its use varies by the practitioner conducting the study/facility. I had 2 TTTs. They did not use nitro or other agents with mine. Two different cardiac physiatrists did my tests. While I did not faint, my BP dropped and heart rate increased to the point of diagnosing my POTS. They are the ones who started me on Florinef (which I couldn't tolerate). Conditions of the room also play a factor in eliciting syncope. The lab I was in did not induce a warm enough climate to make me feel faint and I was not very comfortable in a near standing position due to a hip injury (thus I wasn't relaxed).
  5. I have sun allergy. My immunologist was very interested in other family members. My son is the reverse of me and gets beet red and swollen when he encounters cold (weather or pools).
  6. When I was first diagnosed with POTS my BP would plunge dangerously low and my heart rate would be very high. After a grueling summer drought, I got into cardiac specialist who told me I had POTS but now have OH (BP sitting was low normal/HR ok; BP standing dropped >20 but HR stayed about the same). I've been on Midodrine since and have sodium restriction as my ANS failure and EDS causes me to pool fluid/blood in my legs/feet. I need to keep the legs elevated as much as I can. My heart rate seldom gets tachy when the BP drops anymore, but I am on Rx to make me hypertensive. Although I still am not hypertensive, when I last saw my cardiac specialist, when I stood my BP jumped up. I keep a graph on MedHelp.org (not promoting any websites) that has a blood tracker. I enter my information and print the graph off monthly to take to my next cardiology appointments. It is up and down--all over the place. The cardiac specialist added Lexapro (again not promoting any drugs) which in me has helped to keep the BP a little higher (ie was running around 90/60 at night and now might run around 105/72 at night but it's knocking my heart rate from 70ish to mid-low 50s. I think that is one of the challenges in trying to find the best individualized fit for us. We all respond differently (but share so many of the same symptoms).
  7. I have a nephew who is almost 10 and they work great for him
  8. I take two 5 mg tabs when I wake up, when I eat lunch and when I eat supper (no later). GI told me I should take my Omeperazole on an empty stomach about 30 minutes before my meal. I take Prilosec 30-45 min. before dinner (my biggest meal) and Zantac at bedtime (the time my doctor prescribed it).
  9. Thanks for sharing. Good information. I never knew about the helpfulness of abdominal binders.
  10. My rheume found critically low vitamin D level in me. I have osteoarthritis and osteopenia. I was taking calcium with vitamin D daily and a medication for the osteopenia. Apparently it had not been enough. Here in the midwest, we have a lot of months with cloudy cold days (and now with the OH, I have to watch being out and about in the heat). I was on a Rx Vitamin D for awhile and then my levels came up (and have stayed up just back with my calcium and vitamin D). I have it checked periodically. Rheume told me winter is best time to check as that's when it's usually at its lower end. I have also added more dark green leafy veggies to diet. DH's PCP found critically low vitamin D in him, too, years later. He had to take the Rx as well. Who knows how long we'd been that way. Vitamin D def. can also make you more sensitive to pain.
  11. With my pooling of blood and fluid in the legs I keep them elevated as much as I can but do get up often to walk. Walking does not bother me but standing still, I cannot do for very long. I can pedal all day on my recumbent stationary bike and was doing 70 min. of treadmil in the aquaciser at therapy but when I, for instance, try grocery shopping (raising arms above heart level to reach and squatting and bending to get things on lower shelves and standing to read list or labels or deciding which product I want), I start dropping. My cardiac specialist in dysautonomia told me that whenever I am standing I should either cross my legs (but I need to hold on to something) or shevel (swaying back and forth or side to side, shifting the weight from one leg to the other). I sit through Sunday services until the very last prayer and hymn but I shevel and have done fine with that so far.
  12. A heavy meal, biscuits, gravies, dairy products, anything fried/breaded, things that are sickening sweet (sometimes even the smell of chocolate), bananas, bacon 3 way vegetarian chili spaghetti , some teas are things I can think of right off the bat. And since I'd recently had a stomach flu I cannot stand to look at a baked potato (if you get my drift).
  13. I was started on SSRI 2 weeks ago. I have OH. It is doing good (with my Midodrine) at keeping the BP up so far but it's bringing my HR down from 60ish to 55ish. It's still not hot here yet. For me, that will put things to the test.
  14. Linda, I'm so sorry you're going through this. My grandchildren have been my greatest therapy, too. My DH said in his observations I always seemed better when DS would bring his Italian greyhound over to visit (he wanted us to take the dog he'd rescued. I loved the little thing, but knew I couldn't care for a dog and when I mentioned it to my cardiac specialist, I was told flatly, no way. It was a relief having not to make the decision for myself as I wanted what was best for the dog. I could give him love but not reliable adequate care--especially in heat and cold and rain). When I'm down, I also look to distraction with an old movie or a good comedy or funny movie--no downers for me, or read a good book). Last summer (before learning about this OH/ANS failure, I honestly thought I would wither away and die. I got down to 86 1/2 lbs with my nausea and bathroom days. But they are still working on things with me. They've added SSRI, Lexapro to help bring BP up and try to even out GI issues. I do still have some nausea--seems worse at bedtime for me right now. It's also lowered the HR to mid-50s. And they tell me there are a lot of things they can keep trying. Summer coming scares me to death. I've armed myself with a cooling vest, a soft helmet, I've picked up the fluid intake and taking a Rx nutritional sustanance. I carry a phone and water with me wherever I go (but I don't 'go out' very much--maybe to eat out once/week or get my hair done every 5 weeks or to doctors and church). I feel so blessed to have DH who is able to get groceries and help with meals. I am blessed to have those grandchildren in my life. Other family cannot be relied upon and DH travels so I have to be as self-sufficient as I can. I may have a day I only shower and change nightclothes, not even feel like getting dressed when nobody's home. I rather enjoy being able to just listen to my body and roll with the flow. I had to take a disability retirement due to a bad accident that left me with permanent damage and pain 24/7 and nothing they can do to repair it/help it without giving me stuff that would make me sleep all the time--no thank you very much. I nap enough with the narcolepsy. I am so sorry you are going through this. I am wishing you peace and sending a virtual (((HUG)))
  15. Articles are: Compaative Efficacy of Yohimbine Against Pyriodostigmine for the Treatment Of OH in Autonomic Failure (authors Cyndya Shinbao, Luis E. Okamoto, Alfredo Gamboa, Chang Yu, Andre Diedrich, Satish R. Faj, David Robertson, Italo Biaggioni (that's the one my cardiologist was looking at). The one Dr. G's PA gave me were: Use of Methylphenidate in the Treatment of Patients Suffering from Refractory Postural Tachycardia Syndome (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Karnjwal and Blair Grubb): Preliminary Observations Suggesting that Treatment with Modafinil Improves Fatigue in Patients with Orthostatic Intolerance (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal and Blair Grubb); There is a third (not for ED): Erythropoietin in the Treatment of Postural Orthostatic Tachycardia Syndrome (authors Khalil Kanjwal, Bilal Saeed, Beverly Karabin, Yousuf Kanjwal, and Blair Grubb)--all are MDs save Beverly Karabin who is PhD. I didn't insert just for brevity.
  16. That seems strange to me since his PA gave me an article he'd co-authored on one of these type meds that they would consider trying with my OH. I hadn't read it but when I had a follow-up w/ my cardiologist who was looking for something to try (as we didn't know when I was going back to Toledo at that time, he'd also considered another agent used for the same thing, which I didn't know either). He looked at the articles I'd brought from Dr. G and told me it was similar to what he was thinking, copied an article on another med used for same thing and asked if I'd ask Dr. G about that when I see him in my next visit. (Problem is our ins. co. does not cover Rx's for ED).
  17. My specialist in dysautonomia was going to try DDAVP but I have allergy to it, so they added SSRI. Not knowing how it works both my cardiologist and cardiac specialist suggested the using (if these don't work) agents used for (if I am permitted to say this--meaning nothing offensive to anyone) erectile dysfunction.
  18. I was diagnosed with EDS years before POTS symptoms started. A rheumatologist, specializing in fibromyalgia (which i also have) diagnosed mine. There really is nothing more for me to do than supportive health care team that includes a neurologist, periodic physical therapy and speech therapy (for breathing exercises for the Vocal Cord Dysfunction), a good orthopedic surgeon, rheume, a hemeoncologist who wrote my treatment plan for the Delta Granule Storage Pool Deficiency, a cardiologist and cardiac specialist in dysautonomia, and for me an immunologist for IgG/IgA deficiencies, a gastroenterologist and of course, my PCP. (On occasion I've had interventional radiologist) I do an exercise program religiously but cautiously. I have enough braces and splints, compression hosery, heating and ice wraps, and DME to open a store (to support various body parts). I also saw a genetecist who told me to keep doing what I'm doing. We're out in very rural area and I'm first (known) that some of my docs have seen but they are thinking now along those lines and reading more about it and when I have some problem, may explain to me how it is also EDS related (like my VCD and the pooling of blood in my legs and feet).
  19. I can say, I know how you feel and am sorry we go through this. DH travels sometimes and when he's not out of state, he's working all day. I suppose at my age (middle age) and health issues with osteomyelitis around my pituitary (incurable) and my immunocompromised state (hypogammaglobulinemia) and life long history of mirgraines, being hit by a car with my glutteal muscles and tendon ripped off my hip bone/pain 24-7 (took them 7 years to find the 'reason' for my constant pain), and having no close immediately available family close by that I can rely on, if I'm having a bad day, I don't push things. I put my energy into cleaning the house or doing laundry at the 'better part of the better days' (my BP is usually lowest in the morning and night). The meds make me a bit drowsy which I don't need on top of my hypersomnia, but I consider it listening to my body. I read, play solitaire on the computer, watch a good show, nap, always must push myself to get in the fluids and extra calories. My DH and I often 'joke' when we are both ailing at the same time (he has health issues too and doesn't want to hear me complain) that some day somebody will just walk in and find us. He works close to home, but if I call him that I was doing something and about went down--tell him the low BP, he just tells me to 'just sit down and leave it alone (meaning whatever task I was doing). I did once have to call my 78 year old mother from another town to come to stay with me for awhile (but she has family living with her that controls her every move). I had gotten up with a migraine and my systolic was only 63 and DH was out of state. Not knowing if I'd need to get up to puke or getting up to bathroom or puke to the point of needing ER, she came. But when I had surgery on both feet (in casts) and only allowed to bear weight on my heels, using a walker DH scheduled himself a trip out of state and DM never showed up (as she'd planned). I had anticipated as much and bought a big cooler with lots of ice packs, had bread, crackers, snacks, peanut butter, dry cereal, drinks all at my fingertips since I couldn't carry hot food that would spill using a walker and only walking on my heels. I recently had a stomach flu so bad that I was calling out to the dear Lord to help me (DH had been sleeping all the while I couldn't even make it to the bathroom, puking my guts out--filling 3 trash bags. He heard me and first thing he asked was 'did you take your imitrex?' (assumed I had migraine). Then he asked if I wanted him to take me to ER (no way I could get dressed and sit in waiting room long time--any movement in bed triggered more vomiting. He brought some 7-up and more bags by the bedside and left for work. I did call him later that afternoon--still scared to move lest things start again. I asked him to bring me some immodium and pedialyte. I couldn't keep 7-up down so I asked him to pick up ginger ale too. He dropped those things off. When the immodium stayed down, I took a bentyl to help with the tummy cramps. But as soon as he'd dropped the stuff off, he was right back to work. I take spells being afraid when alone, but I know my Father is always with me. And I pray to thank Him for his love and mercy and protection--all His blessings. If a tornado hits whether DH's here or he's gone--he couldn't stop whatever would happen. I think about him being out there on the road in that stuff. Sometimes I'll take my cell phone and put it under my pillow in case of an intruder--giving me time to hide and call 911. Whether I'd have time to do that, I don't know. I rather doubt it (but I'm sure it'd get my BP up). I was in the health care profession for over 25 years and I think the good Lord has blessed me. I could always look around and see people far worse than myself. And I keep that same attitude. If I go to whining (by e-mail) to my DS who lives states away, she will always remind me that which does not break us makes us stronger.
  20. That is smart thinking, being armed with that information. I would only add that in certain cases these days, certain health insurance plans (such as the one I have) will charge you the big co-pay for an ER visit and may charge you a larger percentage of the bill if they (in retrospect) do not deem the visit as an emergency. If POTS is a part of your medical diagnosis, they might deem it more cost-effective and medically necessary for your doctor (who treats your POTS) write a standing order for you to receive the IV fluids in your hospital's Ambulatory Care Unit or Infusion Center. I get Iv Ig at an infusion center and there are patients who come in strictly for IV fluids. (Just sharing my thoughts for whatever they are worth).
  21. I was taking a low dose daily for nearly a year for arthritis inflammation (only because I cannot take NSAIDS and aspirin/ibuprofen products). It really really helped me. I stopped them when I got massive doses of steroid injections in my back/SI/buttocks over the course of a couple of months. In that period, my hair was falling out, my fluid retention was way worse, I would get hypertensive very easily (yet still have orthostatic hypotension/syncope), I looked moon faced for months (my PCP swore I looked rheumatoid to her). It seemed to take my body almost 7 months to clear all those steroids out. I've taken the medrol dose packs for bad allergic reactions/asthma attacks and they helped. I hope and pray I don't have to go back on the daily dose (as much as it helped). Another thing with me, whenever I am on steroids, for some reason, I diurese--get up to pee a lot throughout the night and sometimes it makes the insomnia worse. I don't think I had the 'mood swings' that can come with steroids, (but you'd have to ask my family about that).
  22. I've had 2 sleep studies--different years, different labs, different docs. Both showed the same, I do not get into the deep stage of sleep, I get very little REM sleep, and I have hypersomnia, excessive daytime drowsiness. Ambien made me sleep walk/talk/eat (before those side effects were made more public). It also got me to sleep quickly but it was like somebody turned a light switch on around 2 a.m. I tried Lunesta/Sonata with similar--got me to sleep quickly but awake really early in morning not able to get back to sleep. I have been on Temazepam for years. It sometimes doesn't get me to sleep at all (but usually induces some drowsiness--timing and regular scheduled bedtime helps most for efficacy). I give myself til 1 or 2 a.m. and if no sleep by then, I take Tylenol p.m. The combination and fatigue seems to help me (NOT ENDORSING any product, just sharing my experience). My first test was about a decade ago. The sleep doctor said my sleep pattern was one commonly seen in fibromyalgia (I hadn't shared with him that I had that). He was big on Melatonin which did absolutely nothing for me, no matter how much I took. The rheume Rx'd sleep aid for me--told me it was a must have. That being said, when I see the cardiac specialist for dysautonomia they always ask about my sleep (so it may be an ANS thing as well). I, too, have had bouts of severe nausea as I climb into bed. My BP usually runs lower at night (and my Midodrine has worn off by bedtime). I haven't figured things out, either. I take ranitidine at bedtime. My cardiac specialist in dysautonomia suggested a gall bladder emptying study, explaining that although my CT scan/ultrasounds have been normal (except for fatty pancreas and fatty cysts on liver) the gall bladder may not be functioning properly. I posted a question about this test and someone replied that her GI explained that ANS can reek havoc on the gall bladder too (something that gall bladder removal may not necessarily improve the symptoms sufficient enough to undergo the risks of surgical removal).
  23. That is kind of what my thinking was. I don't want surgery 'to see' if it helps. I would only want it as a last resort. Thank you so much for sharing. I just had not realized that the ANS affected the gall bladder too. Makes perfect sense the way you explained it. Thank you.
  24. Wow, good information. Question: you said one or two sips of vinegar, but someplace else you said 2-4 ounces--which is it? Do you take it straight or mask it in something? I may be able to handle a tablespoon or two and flush the burning with fluids. I'm on omeprazole and ranitadine but they don't manage the GERD and of course do nothing for the nausea. I do drink a lot of Power Ade of Gator Ade. mainly as I get tired of water sometimes. I have to restrict my sodium and I do not tolerate fried/fatty foods at all. But I don't feel pain in the gall bladder--just the never ending GERD and fullness.
  25. I just wanted to add with my orthostatic hypotension, it is not the sensation of my heart racing (as it did with my POTS) but with both POTS and OH I get bounding palpitations.
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