Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by icthus

  1. " I think there is a decent percentage of people where exercise will be their most effective treatment, and it looks that mayo is using it effectively for kids, but then I think the majority of people it's only important for them not to become deconditioned and it will only help on that level. Then those who push it a little to far it will activate their sympothetic release maybe my endorphins and it will trigger a flare." (RichGotsPots post above). This is one of my greatest heartbreaks. I, too, cannot exercise, try as I will. My first serious cardiac episode happened 15+ hours after I did my then daily rigorous exercise. For the next several years, many of my serious reactions occurred 12-18 hours after "exercising." Why the time delay? I LOVE to exercise, and have been fit and active all my life. Now, exercise is out of the question if I want to avoid serious cardiac events. It's so frustrating. The cardiologist couldn't believe my testimony because I looked so "good" so he ordered and attended my stress test. I lasted less than 40 seconds before he stopped the test. To add insult to injury, you don't get a discount for getting off early Sure wish someone could shed some light on why some of us are so exercise intolerant AND why the cardio-neuro response is delayed several hours - usually occurring during the middle of the night when you least expect it. CT
  2. Thanks for the reference. I googled Dr. Chelimsky and called the phone number listed at http://mediswww.cwru.edu/dept/neurology/chelimsky.html and got a voice mail for Thomas Chelimsky, so it appears that he is now the Chairman of Neurology at the Medical College of Wisconsin (Froedtert). Shall call back on Monday. Thanks so much for the reference. I hope he is accepting new patients. If anyone else has any other MD in the area that they like, please let me know. Thanks again for posting. C
  3. My great neurologist at Froedtert (in Milwaukee) moved to California. Then his replacement, who was also outstanding, moved out of state. Anyone have a great neuro who treats patients with dysautonomia with lots of serious complications - Any recommendations would be most helpful. I live near Great America (Gurnee, IL) and can easily get transportation in a range that includes Milwaukee down to Chicago - although I'd prefer to avoid Chicago because it is so difficult to get drivers willing to drive into Chicago. Thanks - C
  4. I have the same problem. I've tried SSRIs to no avail. My neuro says it's an autonomic issue, and I take clonazapam (1/2 of a 25mg tab). It remediates the problem in about 20 minutes. Until then, I have to remember to continue breathing in, breathing out. I find that sitting in a recliner with my feet up and head at about 45 degrees helps a whole lot. I'm so sorry that you have to experience this very frightening and restricting symptom. Mine usually comes on in the middle of the night, and I have found no rhyme or reason for it. I simply wake up, and not being very cogent due to lack of oxygen and slow pulse, after a few minutes, I finally figure out I'm not breathing and I'm very cold! Then I drink about 12 oz water and take the 1/2 pill, change the position of my motion bed (used to be recliner), cover up with more comforters, and wait it out. Within 20 minutes, I'm usually stable...and sleeping once again. It's sort of like a middle-of-the-night commercial break, sponsored by Autonomic Interrupters, Inc. They sponsor other commercials, too. Just read the posts.
  5. At times it gets disheartening - so many symptoms, so many restrictions. Well, I've got a new one that even surprised the physician. Over Christmas, for two weeks I ate 5-6 1" squares of pickled herring every day as a special treat. After a few nights, I started getting palpitations and heart issues of all kinds. And they didn't improve. I wrote it off as more deterioration. Then it occurred to me that maybe the herring was the culprit. As it turns out, it is. It is very very high in amines which can cause the cardiac issues. According to my doctor, dysautonomics can have metabolism issues that are skewed - sometimes the liver works, sometimes it's a little lazy. Amines involve the sulfation cycle (? - it was verbally explained so the spelling might be wrong) and my sulfation cycle is compromised. Therefore, any high-content amine foods will cause cardiac issues. Well, that explained a lot because I devour lots of high-amine foods (cheese, nuts, citric fruit, tomato juice). I've been off them for the past few weeks, and I'm doing so much better. Housebound but better. Anyone else with these issues? This link somewhat validates the amine/cardio relationship, especially paragraph 3. http://www.foodnavigator.com/Science-Nutrition/European-project-investigates-biogenic-amine-food-component
  6. My dentist just informed me of the shocking news that high fructose corn syrup (HFCS), in addition to being very hard on the liver, also contains mercury! I don't know that this relates directly to dysautonomia, but it certainly cannot help us. So, HFCS just might be another food additive we might want to avoid. 1. Washington Post article exposing research that confirms mercury is in most HFCS and the general population is at high risk of toxic levels of mercury ingestion. http://www.washingtonpost.com/wp-dyn/content/article/2009/01/26/AR2009012601831.html 2. You Tube - Univeristy of Calgary School of Medicine showing effect of micro amounts of mercury on neuron growth in the brain (i.e. ability to maintain intelligence) 3. This is a site that lists foods that have HFCS. It is basically all processed foods and drinks that have sweetness (pop, cereal, cookies, bread, etc) http://www.accidentalhedonist.com/index.php/2005/06/09/foods_and_products_containing_high_fruct
  7. I've had the same experience, and I also get no relief until the percussion blasts forth from the mouth. Something triggers it. Would love to know what.
  8. I second the Craig's list suggestion. You can find all kinds of great stuff there. The listings are posted for only 7 days, so there is great turnaround - everyday new stuff. Also, while I have no experience with Harvard specifically, my experience at other university campus towns is that there are lots of ways to find used furniture with students moving and and out constantly. There are also volunteer organizations sponsored by the unversities to help international students matriculate into our culture, so to speak, and often they know where good used furniture is for sale or even donated to students. So ask around. There are a lot of options. And welcome to Harvard. What fun!
  9. Great to hear from you. Thanks for posting!
  10. Have questions about Shy Drager. Please e-mail me if you might be able to help. I've done lots of internet searches but just need some hands-on advice. Thanks.
  11. Dear Ernie - I am so very very glad that you posted this update. I have had you on my mind for several days, and I am so thrilled to hear the good news. I have heartfelt rejoicing for your recovery, and I shall pray that you continue to improve. How exciting. Dancing! I'm so happy for you. Please continue checking in every now and then just to say "hi" - it's so great to hear from long-time friends. - Cathy
  12. Once I became more housebound, I tried yoga from the internet. Found some appropriate sitting and lying positions that didn't require putting head down or standing-to-sitting movements. In only a week of 15 minutes of yoga, I saw tremendous improvement in posture. But I also became breathless, exhausted, and reactive after the 15-minute stint. Any ideas why this limited version of yoga would cause a dysautonomic flare-up? Any suggestions on how to evaluate yoga positions so those of us who are extremely exercise restricted so we could still do some yoga and gain benefit from it?
  13. I do an acupressure hold that brings my body back to warm. It's simple. I just hold the outside edge of the back of the knees, just inside that tendon on the outside edge of the back of the knee. To do this, I either sit and bring my legs up to the sofa level and hold both knees with both hands OR lay down in the fetal position and hold both knees with both hands. It usually takes about 5-10 minutes and I'm warm again! I don't know why it works but it does for my dysautonomic temperature regulation problems where I get bone cold - hands, feet, nose, cheeks, extremities. Totally cold to touch. It doesn't work for the normal cold that is from the outside temperature where just my hands are cold from holding the steering wheel, or from going out to get the newspaper without a coat, or my feet are cold from walking barefoot to the bathroom, etc. For me, doing this hold works when, for no reason at all, I get bone cold - in the middle of the night, when reading a book, as a precusor to a major dysautonomic event, etc. This bone cold is independent of environmental/room temperature. My temp regulation just shuts down. Holding the back of the knees restores warmth. Just a thought. I'm so sorry. And life is so hard. I just went to Menards to return a few things and buy some paint. I returned the few things and couldn't make it to the paint department. I had to come home. If only they had the automatic wheelchairs. Ah. So disheartening. A simple, quick trip that is not doable. If anyone tries the hold, let me know if it brings any relief. It would be interesting to see if it works on others who have temp reg issues.
  14. Maggie - I am so sorry you are going through this. I had the same thing happen a few years ago. I had some pain one night, thought it was the flu, went to the doctor who thought the same. And 10 days later, I found myself in emergency surgery. I had lived with a ruptured appendix for at least 10 days and had both peritonitis and septicemia (spelling?). They also took out 50% of my large bowel. Stayed in ICU quarantine for another 11 days which included a blood transfusion. It was quite an ordeal. The doctors felt that for me, the dysautonomia neural issues masked the normal pain receptors for a ruptured appendix, which is why it wasn't diagnosed at the onset. I should have died but survived due to the wonderful care of physicians and nurses. And I was alone in the hospital (husband died of accident 3 years earlier). At any rate, I just want to encourage you. Afterwards, I had some large bowel flatulence (ahhhhhh!) for a little while until my body got used to the absence. But I did recover and air quality around here improved as well. Take it slowly. You're body knows what to do. I chose to enjoy a more fluid diet and avoid "difficult" colon foods for a while until all was restored - which did happen. The most difficult obstacle was getting over the discomfort of the incision which was on the midline and over 7" - really don't know what they did down there but that recovery was the toughest. I hope your incision was more modest! You've been through a lot. It's so unusual to survive when the appendix is ruptured long before it is removed. But alas, I did and now you have! God is so good. I'm so glad you have come through. You have indeed been blessed. Cherish this wonderful gift you've been given - restored life - and I hope you and your daughter become even closer through this recovery time. With love - Cathy
  15. My doctor wanted to put me on a low-dose antibiotic because there are some who actually respond really well to this treatment. I'm one of those. Every time I go on an antibiotic for another reason, I have a few good weeks that follow. The same holds true for goldenseal tea - I usually have a good night if I drink that tea. BUT... I've been told that the goldenseal tea can only be taken moderately, and then it even must be stopped for a period of time. Also, I declined the low-dose antibiotic because there are other side effects that made it not a viable option. That said, if your doctor does put you on the antibiotic, you might consider seeing how your symptoms are during the next few weeks after you stop the meds - if there is improvement or not. Just a thought. Hope you get well soon.
  16. Hi Maggie - I'm 58, I guess. It changes every year, for which I am very thankful as the alternative isn't so good for my family! Your post says you are looking for support. Me too, only I'm not sure that what even means. What are you looking for? A fellow quilter - of bygone days Cathy I just reread my post. 58. ahhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh That is soooooooooooooooooo olddddddddddddddddddddddd! I was just 25 a few years ago, or so it seems.
  17. You can add me to the list of those who live in or near Chicago. I'm near Great America.
  18. curious - I have low-flow pots. I just had a 1/4" slice of sweet raw onion on my sandwich tonight for dinner - because raw onions make me feel better. How does nitrate-rich foods affect nitric oxide?
  19. I'm trying to figure out why some dysautonomics/POTS patients are exercise intolerant and some have unexplained angina. OK, so maybe I should get a day-job, but then again, I can't and my physicians aren't shedding light. So I hit the research, and I don't know what I'm talking about. So if anyone can shed light, I would be so grateful. Research shows that... 1. ACh contricts the vascular system but also causes NO to be released to countereffect the ACh-induced vasoconstriction - resulting in no vasocontriction (heathy situation) 2. ACh is released during the night and during exercise. 3. ACh induces hypotension 4. ACh-NO relationship is faulty in some patients so that sufficient NO is not released resulting in an ACh-induced vasocontriction that is not "corrected" 5. Some types of angina are caused by the LACK of nitric oxygen 6. According to my neuro, Low Flow POTS is vasoconstrictive and hypotensive. Hypothesis For some of us, the ACh-NO relationship in point #4 is causing our exercise intolerance and/or unexplained angina at night because our ACh release is not simultaneously stimulating the release of NO. We are flooded with the necessary ACh but without the counter NO resulting in vasocontritive and hypotensive symptoms. This causes resultant cardiac stress from lack of sufficient blood flow. Parenthetically, this could also explain why our blood pressure drops really low during the night (point #2). If my hypothesis is correct, are there any reasonable medications/treatments that could increase the NO release upon autonomic release of ACh?
  20. I can give an update, but it's rather disheartening (no pun intended). First of all, I followed up with the EP the next day for a 12-lead ECG and it showed the normal (for me) stuff. Then, a few weeks later I had an ESOPHAGEAL SPASM in which the entire throat occluded. AHHHH which, according the the follow-followup of the neurologist was misdiagnosed as anaphylaxis but was really the spasm, even though there was total occlusion. AHHH. And the neuro added that the prescribed epi-pen "would give me a 'real trip' to the ER if that's what I wanted." Sarcasm or attempt at humor was not appreciated. I was not the one who diagnosed anaphylaxis and prescribed the epi-pen, and I'd never heard of esophageal spasms before - at least with any measure of understanding. (For those of you who don't know about it - the throat tightens, swallowing and breathing become difficult. Google for more info, though none of the sites I found talked about total occlusion) The neuro said my heart and lungs don't communicate well per the valsalva and deep breath tests. In addition, I am hypovolemic, hypotensive, vascular constrictive, and probably categorized as low-flow pots. These heart episodes go along with all that. And esophageal spasms do also - in about 40% of the patients. Total occlusion, though, is rare. Well, thanks. And he remarked that I'm still here. Did it really occlude? Well, no, I like to exaggerate because I like to waste $$$ blathering on to a doctor and exaggerating will sabotage his ability to assess, which is exactly what we are all wanting. Ok, I'm a little upset. At that point, my driver, who sat in the appointment with the great one and me, spoke up and said she came minutes after it happened and saw the high school student who witnessed it all and then she gave physiological remarks about my condition. At that point, the neuro sort-of believed it happened. OR... should I get an affidavit from the student and his mom!!!! I'm sortof angry, as you can "see." So how did I get out of the occlusion? I told him I was trained in acupressure and after a moment of prayer had the presence of mind to do the "high ones", and showed him. With that he changed his attitude and asked specific questions. Then he remarked that holding the high ones "as I call it" (ahhhhhh) was excellent. It diverted the concentrated energy in the throat area down to the legs, dissipating the event by moving the energy away from it. He told me to do it whenever I feel the throat tightening. If anyone wants to know what I did, pm me. His treatment - see a psychiatrist for dealing with all this. Right. I have a great life as long as I don't have to talk about the details of my symptoms. Who wants to live through those things again and again. I've reinvented myself based on my limitations, and I'm very content with my life. It's only when I'm with him and talking about this stuff that I get edgy. I just want to live. Anyway... According to him, as far as VARIANT ANGINA, it goes hand-in-hand with LOW FLOW POTS and ESOPHAGEAL SPASMS and there are no clear answers as to treatment when presenting with those three things. The neuro said nitro is absolutely out of the question. He never went any farther because time ran out. And that's the only reason I went to see him. OK - wait another 9 months and try again. If any of you can give insight, it would be so appreciated.
  21. I've had some life-threatening events over the past few weeks. Idiopathic anaphalactic shock, suspected variant angina, and no one knows what kind of POTS I have - possibly low-flow. If they give me mestinon for the angina, it might be contraindicated if I have too much acetylcholine. It goes on and on way over my head. And both want me to go to Vandy. This might as well be the moon. I'm from the Chicago area, and I have a driver to get me there, but how do I proceed? Also, I've had several near-death (minutes before being restored to breathing, etc) events and I'm very concerned their testing will be fatal if I do indeed have variant angina and/or MCAD - which is supposedly difficult to diagnose but all symptoms indicate it. Prattling on. My two wonderful doctors have both told me - independently - that I need to go to Vandy. What's the next step? What doctor? EP, allergist, endo, neuro - do they work together or do I have to do all the coordinating? etc.etc.etc. OR should I stay with Froedert in Milwaukee - they have a neuro clinic and I like my neuro there - and they have EP's on staff. And Froedert is only 1 hour away. Also, I'm currently in a place where any encouragement would be most appreciated. I'm just a little overwhelmed and somewhat alone - not married. Thanks for your input
  22. After I read one entry in my search that said tachy symptoms became much worse after going off mestinon, I'm a little concerned. The MD wants me to try mestinon for low BP, but before I swallow, did any of you have negative side effects from taking mestinon that did not go away after a few weeks of stopping the drug? Also, is there anyone who thinks the mestinon might have done more harm than good? Thanks for your replies.
  23. Thanks for all your input. I took your advice and "boldly" asked if the EP could do an EKG to rule out heart attack, which he kindly agreed to. I found a driver, went in (25+ miles away) and my heart is ok. Interestingly, they said that the typical patient presenting with a heart attack generally does not "get better" when they walk around. That's it for me! When I have these episodes, for some reason, a very slow and steady "geriatric walk" around the room usually seems to quiet the symptoms to some degree. It's still a terrifying experience to have. I live a few miles from Great America, and I can't imagine any of their rides being more rivoting, if you will. When I left the office, I ended up tearing up - the stress of "Is it or isn't it" is so pressing. And as you all know, even with the good ECG, you still leave the office in the same compromised state that you walked in with. It's not fixed. Life is hard but at least it's good. Thanks, thanks, thanks for all your input.
  24. Ok Ok, I just reread my post and it sounds like I have some sort of Don Quixote symdrome gone awry!
  25. I tilt my bed. It helps tremendously. So much so that I take wood blocks to tilt beds when not at home. I tilt between 3 and 4 inches. Even with that, I tend to slip down the bed during the night. I'm afraid that for me, tilting 5 or more inches would find both me and my ocvers slipped totally off the bed by morning!
  • Create New...