Jump to content

Tachy Phlegming

  • Posts

  • Joined

  • Last visited

Everything posted by Tachy Phlegming

  1. (Somehow my mailbox is hard to clear out and I wanted to see if I could respond not as publicly.)

    If you're taking votes (and haven't gone to the doctor yet), here's one vote for Mestinon.  I started 15 mg. at first and got up to 2x a day.  I have taken up to 3x a day.

    When the med works, it's terrific.  If it doesn't, you'll know rather quickly.  (In many ways I have had a similar presentation of illness to yours). 




  2. The goal is to lower tachycardia at least. It's given off-label for that. My sense is that it can have the effect of evening out labile blood pressure (although the literature I think only says that it's supposed not to get too low on Mestinon). If you have problems with being too hot or cold, some of us would tell you it helps either with the temperature regulation or with the symptoms we get from being too hot or cold. It can help with breathing ... I needed it. I don't think I necessarily would have known I needed it just from reading. I really would not have wanted to go straight to 60 mg a day because I had so many problems with other meds -- (but had I actually been forced to take it that way, it would not have been the disaster almost every other drug I had tried recently had been).
  3. Can you ask to try it at a low dose at first? Like 15 mg.? You may be able to tell something even from that. Usually they will start you at 30 once or twice a day and then go up to 60 twice or three times a day. You can have trouble with a ton of other meds and not that one. Especially if you're scared but plan to try it, you might want to try it during a "good" hour (I think most people on here would prefer to try meds when they feel slightly better rather than worse if that is an option).
  4. I've seen this happen. What I saw was that once it was characterized as sepsis, they don't change the treatment protocol nor the reason for admission to the hospital even when the cultures come back clear. If you have some other treatment you use for exacerbation of autonomic symptoms, they generally still will not want to treat for anything except infection.
  5. When I was in the ER and had it, the doctors totally didn't care. They just kept taking it until it went down (guess that works just as well as any med). And a cardiologist years later who told me my blood pressure was high told me at the end of the appt. he'd give me a beta blocker through his receptionist. Five minutes later, the receptionist told me he refused to give me any meds for either that or tachycardia -- just because he didn't want to, no other reason. I know the theory but I walked out only imagining that in practice even daily high bp doesn't need to be treated if, if ... you're like me? unless you have a certain gleam in your eye? Yes, I had used the scary word dysautonomia and asked to be referred to a specialist after the appt. and was happy with the specialist that many months later. But even despite saying that word, I still thought I should have been allowed to try whatever that cardio was giving out that day to any of the rest of patients for high bp and tachycardia. (I had said I wanted to try something else but that I was very willing to try the beta blocker). I am perfectly conventional and look just like someone without any disease by the way -- I assume it was the bare mention of that word .... I look at what kJay wrote and just think, wow, that's so far off from conventional medical wisdom. But I've got to say, I've ended up having to come to around the same conclusion she has because I've been treated so terribly (and yes, the meds I have work well on a lot of symptoms but imperfectly on bp). I don't like it -- but what choice do I have? Mostly, most of the people on forums will advise going to the doctor just because we're supposed to be attuned to not knowing if perhaps someone has something else etc. -- but if my experience is typical, again, not by any choice I've made, I've ended up having to do things and think the way kJay suggested. I think I've seen a total of one stroke reported on this forum by the way, I think during a pregnancy (if someone has kept count and heard more reports, maybe chime in ...)
  6. If you just can't afford it, maybe you need to speak to your physician about returning POTS and letting him give you a less expensive and agonizing condition in exchange. Tell him particularly that you need a condition that is like a walk in the park because that is indeed what you seem to need right now. Do you really think you are developing other serious primary health conditions? Or are they secondary to POTS. You are not necessarily doing the wrong thing by ignoring some of the other stuff and even refusing some of the tests either because you don't think they'll show anything, because you're tired, or you can't imagine it would help to treat those instead of your primary condition -- especially if you aren't getting adequate treatment for it. I remember going to the doctor and wondering why they were bothering with yet another cholesterol and diabetes test when neither of those could possibly be in any way connected to the condition I actually already had which, at the time, was severely damaging to my overall health and completely untreated. I suppose there is nothing to add to what you have said but I can at least say I've had some of the same thoughts ...
  7. Depending on what works in terms of meds, you might want to consider using lying down for a certain amount of time/number of hours at least as one method to get the reading down on a regular basis. It's not a great method for getting things done in life but in the absence of a med that doesn't give you awful side effects and which you can take all the time, it's worth considering. It's a little scary using salt to lower it but I think I've had that happen to me too. That high, I probably would wait for it to get lower first but later somehow carefully check for a pattern if it you can keep it from getting that high on some salt. It would be helpful if some med worked on your pulse though... 120 is too high -- can't imagine he feels very good, I'd have asked.
  8. That sounds like a very sound type of theory and very much better than some of what's out there. Here's an article on some sodium channelopathies for those who may be interested. I don't know that it covers exactly NaV 1.7 but it explains how these disorders work (oh, and hey, maybe someone can figure out from this article why this way of thinking about disease is so alien to doctors because I haven't figured that one out). http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1180550/
  9. I found it to be rather nice. But my understanding is that these supplements anyway are supposed to be things people just decide to take if they really want to and then continue if they end up making them feel better. People shouldn't be bugging you to take it if you don't want to and are on a ton of other meds with which you've read it might interfere. It's also not known as a great cure-all for everything that ails you whatever minimal positive effect she thinks it will have. Maybe tell her you'll take some other herbal supplement which does "everythng" to distract her from the Melatonin. You might try to interest her in oregano oil. I imagine it does absolutely nothing and you therefore might not mind trying it but I think there are websites you can find for her to read which will tell her it will get rid of some or all of whatever you have.
  10. You can look at this for the color of the urine: http://en.wikipedia.org/wiki/Rhabdomyolysis but it might not be part of the problem.
  11. It might not have anything to do with a genetic trait involving enzymes and toxins -- but rather with (even gangolionic) acetylcholine receptors. The academic literature is a little confusing, so here's a link of anecdotes from a myasthenia gravis forum (neuromuscular nicotinic acetylcholine receptors): http://www.dailystrength.org/c/Myasthenia_Gravis/forum/15876076-alcohol-and-myasthenia-gravis
  12. You got the morphine after you had almost all of these symptoms right?
  13. How long had he been on the Mestinon? Did he say that he noticed that it made him feel better? Or anything negative about it? How much Mestinon how often? Something needed to be done if he had slurred speech but if he was on a high dose, he may have been able to continue it at a lower dose.
  14. Nobody even suggested anything like Giraffe's protocol? Would they or did they refuse to let you self-catheterize? .
  15. Have you looked up Bethanechol (specifically for urinary retention) or meds for "neurogenic bladder"? You'd have to look at risks etc. and be careful about trying anything I imagine but if you've needed a catheter and don't have one, doesn't any doctor want to trial a med aside from a pain med in order to help you?
  16. Were you on Prednisone at all when you took Singulair in 2006? While I too might bet that the combination doesn't cause CSS and the story is exactly what you wrote above, if you indeed took both at the same time, doctors will --because of those studies (even if they're wrong) -- be required to take the idea that you probably have that disease very seriously.
  17. What a mess that steroids don't work for you. It would have made your life a lot easier (probably actually even without knowing what you had). Oh, and one more thing. I assume you never tried Singulair, and particularly not while you were on Prednisone. There are a number of studies which show people "get" Churg Strauss while on both -- and if that happened, it might be fairly easy to have CSS diagnosed.
  18. Oh my. So you get both questions even if you're a guy. I had thought that if I were male, I might not get even the anorexia question. (Maybe next time someone asks the pregnancy question, consider saying yes with no explanation. )
  19. It doesn't seem to be 100% one way or the other. What I always think I've seen is in a fair number of studies is that it raises it during and immediately after but that smokers can have lower bp than others. Even that might not be a causal relationship because how would anyone figure out if people with lower pressure decide they want to keep smoking whereas others don't? http://www.hindawi.com/journals/crp/2011/264894/
  20. It will be interesting to see what they say. I think you're the only person on here who has ever brought up the topic of Wegener's granulomatosis (and I don't know that any of us really understood why you looked for or found anything like that at the time). If you thought what you had was maybe that too, well, maybe what you have is in fact Churg Strauss Syndrome. http://www.cssassociation.org/patient-stories-reader/items/solving-the-mystery-of-my-wifes-illness.html (if you haven't already read the patient stories on that site, read a bunch of them). Have you ever tried Prednisone?
  21. You may not fit into his model of what he is treating. If it's :"OMG what?," a cardio might agree with you about that med. Vanderbilt may be more helpful. Are you still a little better off on the Pyridostigmine?
  22. You asked for random thoughts. I thought of a program I saw about a disease with diurnal variation. Unfortunately, I have completely forgotten what condition it was. But I typed in diurnal variation and mystery diagnosis and came up with a condition characterized by low dopamine. At first glance, it may seem to fit, but while you look through it and think about it, just realize it may not be your problem. It may be a starting point for the types of things you need to think about to figure out what you have however ... http://www.npr.org/blogs/health/2011/06/18/137204964/genome-maps-solve-medical-mystery-for-calif-twins
  23. I never have wanted to discuss my condition with these people really. Yes, I have enough in common with them, having received some of the same wrong diagnoses and yes, they suffer plenty, so it's not as if you're talking to someone who doesn't have a lot of what you have. I'm just very curious as to whether their doctors have discussed the autonomic nervous system with them, the organs it affects, why some of their serious conitions are "atypical" and why they have so many of them. Or why their doctors haven't had that discussion with them. Spinner posted today "I dont consider myself to have POTS because i rarely go into the classic symptoms, but ive got everything else associated with dysautonomia." I think we'd have more men here and more reasonable treatments if more men could get to the intellectual realization he has.
  24. I think of my social circle/people related by family I've known and know some people I'd think personally have autonomic problems,including some men. The men generally seem to have bogus but somewhat serious diagnoses of different organs for which they receive heavy-hitting meds which eventually work. The blood pressure and pulse problems of the men are often totally ignored or put down to something else and the presentation isn't POTS. You try to have a discussion about the autonomic nervous system with them and they're generally pretty uninterested. "Where are these conferences full of ladies held? Sounds like something I'd be interested in" --that's about the right attitude. I prefer talking to men so if I'd had a choice of a patient group, I might have chosen a condition from which mostly men suffered.
  25. I think it is for at least some of us. I hate standing in one place for any amount of time and on at least one occasion (in hot weather), almost fainted just standing whereas I hadn't been close to that while I was walking right before that (for hours). I didn't check numbers but I think pressure will drop or pulse can go up to compensate if you stand in one place.
  • Create New...