Tachy Phlegming

I mostly take mine for symptoms (I'm generally taking something but there are some I lay off for a few days.) It depends on the weather and a few other things (including bp or pulse numbers). I think I might be more concerned if my numbers varied in a consistent manner and I always took meds regularly (I'd be far more worried about rebound effects) Like everyone, I sure hate it when I can't remember when I've taken something. If the med is in a closet, I generally haven't taken it. If I leave it out, it either triggers my memory that I took it ...or not ...if it doesn't, I won't take it ...until some hours later when I feel like dirt, I see numbers I don't like, and figure it's enough time. I have a box but use it really when I know I'm going to need to take a med regularly during the week because I haven't felt so well. I am just thrilled to have my meds. I know I lived years without them so I can't be worse than that ... if I don't take them, relief is hours away.

This does not appear to me to be one of those "take it, it's good for you" diseases. Unless you have one or more physicians insisting that it's all in your mind (that happened to me), I think you'll find yourself needing to continue to seek treatment until you find one or more medications which make you feel significantly better. While most people on here seem to either feel significantly better or worse on beta blockers, having nothing happen is just that -- nothing. Look through the medications listed as treatments on this site and read through a ton of posts until you get some idea of how each med treats symptoms. The reason to do this is that a lot of these meds are prescribed off-label for us and not every doctor is familiar with what a particular med can do for this disease. Then find the associated research and see if you can get someone to trial you on what you think will make you feel better. Don't neglect trying to figure out if standing (probably not), walking, sitting or lying down for more than you would do normally -- makes you feel better. Given that you also said you have difficulty with heat, keep very cool. Make these experiments a little extreme (days at a stretch if it's lying down, a lot of walking if that helps) -- if whatever you're trying doesn't seem too unpleasant at first. If they really had to do tests to figure out what you actually need before giving you anything which works, it would be a lifetime of tests and your suffering so do what you can to try to feel better in as short a time as possible.

1. An abnormal result doesn't mean discussion or treatment if it's not a "favorite topic" of doctors(catecholamine testing and interpretation is not a "favorite topic"). There are certain kinds of lab values and tests which may not used for diagnosis or treatment. These include results obtained from blood pressure monitors, Holter monitors, tilt tables, and, apparently, 24-hour urine tests. Has anyone (else) on here had abnormal blood pressure, pulse rate, tilt table test results or catecholamine test results ignored? The instruments and reagents used for these tests might ultimately be phased out due to cost because, really, what's the point? (Reading this forum, I often wonder if tilt tables are used as ping- pong tables or if they're written off as diagnostic devices) 2. People on here should really realize that you can find pheochromocytoma more easily post-mortem. There are a lot of other advantages to doing things post mortem as opposed to when someone is alive. It is far more economical. It's easier and less risky to remove these tumor(s)then. It's exciting. The patient can't talk and the person performing the autopsy has no idea that a patient complained bitterly. It is therefore a total surprise. And rare. (on the flip side, endocrinologists are less than thrilled about trying to find it. [if you've never heard a subconscious groan from an endocrinologist, it's quite an experience]). --- At any rate, I hope that helps and that you're happier about why your results weren't discussed!

I have leg weakness too. It feels more obvious at some times than others. Mestinon can help remediate the problem.

I once was looking in the mirror and saw a bright red horizontal line move down my body, starting at my head and moving straight down- weird I waited for a high HR and all of the rest of the symptoms that accompany an episode for me & they didn't come. Julie, you really need to investigate other possibilities as the cause for that episode -- and also as remedies: it may be that Himalayan cinnamon sticks are either the source of your problem or "the cure." (Sorry to those who are more interested in Himalayan salt). For everyone else, you can see the type of problem with red stripes (I am sure) she is talking about at around 3:56 in this first video. Then, a very famous doctor discusses the cure. http://www.youtube.com/watch?v=lHg0SaQH-40

In the first place, a. when you wake up in the morning, and before you get out of bed, is your pressure okay? Or at least lower than it is when you get up? (I'm hoping that that is the case). b. Also, when you drink 4-8 ounces of water does your pressure go up or down? c. Is your breathing affected by the beta blocker? (Do you know?) Because your doctors are not helping you, I think that secondly (unfortunately), maybe you need to develop a "personal theory" of what you probably will respond best to. Then you need to ask for it, (I guess aggressively and by showing a doctor an article which makes you think a particular medication will help) -- and then ask to try it at low doses. If you get a med, maybe start it when your pressure is the lowest you can get it (if you try a low dose of something at a systolic pressure of 140 or 160, that's safer than at a crisis level which is too high [or too low]). To get started on this, you need to do research. Here are two articles which may be a good starting point: http://www.nature.com/nrneph/journal/v2/n8/full/ncpneph0228.html http://www.heart.org/HEARTORG/Conditions/HighBloodPressure/PreventionTreatmentofHighBloodPressure/Types-of-Blood-Pressure-Medications_UCM_303247_Article.jsp You should try to get much more detail on any medication you are thinking about. As an example, I am providing links to articles on Clonidine which you should probably have at your disposal anyway because that is what you mostly use. What is in the articles is the amount of detail (on any medication you discuss) that you want to have at your fingertips ... When you start a discussion with a doctor however, you might want to start with the simpler points. I've selected some of the details I'd start with in a discussion of Clonidine ... Clonidine can cause high pressures either intitially or in some people generally. http://bja.oxfordjournals.org/cgi/reprint/aei086v1.pdf (p. 4) http://books.google.com/books?id=1jz_3ttYQrIC&pg=PA218&lpg=PA218&dq=loss+of+sympathetic+nerve+terminals+clonidine&source=bl&ots=Kmw00fqxIB&sig=jRsVegTcix5iVwmaiy1WPbyvggk&hl=en&ei=g4BxTOCBE4j6swPry7WLDQ&sa=X&oi=book_result&ct=result&resnum=2&ved=0CBgQ6AEwAQ#v=onepage&q=loss%20of%20sympathetic%20nerve%20terminals%20clonidine&f=false (see bottom of p. 218) I am assuming you are certain that at the dose you are at, it lowers yours. (If it lowers your pressure or has some effect you're not totally sure of, you'll have rebound high pressures if you come off of it so if you're thinking at all about coming off of it, you have to really research it and be careful). http://journals.lww.com/anesthesiology/Citation/1991/03000/Alpha_2_Adrenoceptor_Agonists__Defining_the_Role.29.aspx (p. 597) ----- As far as heart attacks, it appears that you're only really allowed to have one cause (autonomic problems). I guess the easiest (and maybe quite erroneous) explanation for now is that lack of control of your high pressures (in the context of an autonomic problem) is the primary cause of the heart attacks and spasms (i.e., the other contributing factors may not resulted in heart attacks and spasms without an autonomic problem). At any rate, the above may provide a decent starting place for you to a.) think about how to research and b.) do research -- in the absence of a "professional" who cares enough to do the research for you (his job? ).

I really think you might want to ask for a trial of Mestinon (pyridostigmine). It does act on the autonomic nervous system but it acts as an acetylcholinesterase inhibitor. This is not the usual explanation I have read but the following article shows that ganglionic acetylcholinesterase production is normally supposed to go down in response to heat stress: http://www.pnas.org/content/76/11/6012.full.pdf Writing out what might be at issue in any case or most of our cases would take a bit of doing but with this little amount of knowledge (and knowing that people with dysautonomias use this medication), you might at least be able to understand that this medication could possibly help. This medication has definite effects on pulse (lowers it) and blood pressure (raises standing blood pressure) but I wouldn't concentrate on that aspect of the medication when thinking about trying it (although you might want to think very seriously about balancing it out at some point with a medication which lowers blood pressure at times when you see that you have high blood pressure). Some people with autonomic problems end up doing quite well on it. Given my own experience with the med and the fact that I think some of my presentation is pretty close to yours (heat intolerance -- and I would avoid opiates because of the risk I know I have with them), I think you might well be one of those people. Huperzine A is an herbal acetylcholinesterase inhibitor which is commercially available but I think it might be better to get a prescription for the pyridostigmine for a variety of reasons. (And by the by, despite the explanation above, I don't think you'd feel that the medication reduces your heat intolerance but you might feel that it helps with some of the other problems you have which seem to be related or exacerbated by heat).

Is the second time a charm with this pheochromocytoma test? Or third? Or sixth? Or are they pretty sure that you had a "high adrenergic state" then and now they have some suspicion that that state morphed into (or that you subsequently developed) pheochromocytoma? I guess they're doing the sensible thing. I guess pheochromocytoma patients are super common and people with autonomic problems are like one in a million. Mestinon is an acetylcholinesterase inhibitor and there are articles about how it lowers heart rates in POTS patients. (There are also some on how it elevates standing blood pressure). There would be some other reasons to use it other than the effects on pulse/blood pressure and I asked maybe more for those ... in fact, this medication really did an awful lot to improve my quality of life but it may be hard for you to get if they're doing the simplistic analysis they appear to be. I'm pretty sure my blood pressure goes to normal when I lie down and usually gets higher as I stand longer (you sound a little different) but it's really quite complicated by weather phenomena, whether I cool my body down with wet rags or a vest, and maybe even hydration status (I may not be drinking enough and that may help lower the highs and raise the lows [think of the implications of that for a medication which could increase blood volume for example]). So I'll use various fixes throughout the day. I have a real belief that if I feel better with the medications I'm on, my health is inordinately better. Nonetheless, it can be hard to get what you need because nobody is evaluating for us whether compensatory mechanisms are at work for any given symptom/laboratory measurement and nobody specializes in patient care/management of these diseases the way they do with diabetes and essential hypertension. Out of curiosity, do you feel better on the diuretic or notice a difference with a different dose?

Here's another idea: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1071178/ The article suggests that the way to distinguish is that one is treated by cold the other heat; I don't know if that is always the case. I also think the condition in this article usually takes longer to heal than just getting out of the heat exposure for 15 minutes -- but if you're asking a doctor, you might ask about both conditions anyway just to be thorough.

I have labile pressure. You might want to make sure your lab results for pheochromocytoma are negative before seriously thinking about longer term treatment. Assuming they are negative, this is what I do now ... I'm now on Clonidine and when my pressure gets high, I take 1/2 tablet first, then another 1/2 if it doesn't go down enough (that happens fairly frequently). I take my pressure to figure out if I want to take it. It took me 3 or 4 tries to see that it worked. It didn't seem to lower my pressure quickly if at all at first. I think it may take even up to an hour to kick in. It can raise pressure in certain circumstances so you should watch for that (that would depend on some of the mechanism of your autonomic problem -- so when I was worried about that the first two times [i thought it rose in fact and a doctor had to tell me to take the whole pill; I still do half at first but now do add on], I took metoprolol) -- you might want to ask your doctor if you go on that med and don't see a drop in pressure, if you can do that. But a few trials showed me that it worked. I also take Mestinon. I do a lot of this depending on symptoms. I am imagining you don't get good control if you medicate following instructions (e.g. a set amount at a set time every day) but I should also say the doctor didn't tell me exactly how to take these and I'm at a point where I do some of my own thing (bad self-reliance happens when you get no treatment for a number of years and self-treat with over-the-counter meds for complications in total desperation. If a doctor doesn't tell me how to take a medication now, I'm okay with that). And I do think what I'm on (now) are good meds for me at least with symptoms I have now ... and meds which help with a lot. You can either make up your mind ... or follow instructions if that's the place you're at in your treatment. If they think you have an autonomic function problem, that's good. A tilt table test is no fun. Do you feel okay on the Metoprolol (I mean does it make anything worse)? If it's not a good medication for you, you should ask to see if you can try somethng else.

When anyone who is not like me tells me I'm "like" him or her, I make sure that person knows I don't think he or she is "like" me. I don't really dare to ask but honestly, if I'm normal, I want to know why anybody goes out on a hot day and why anyone would ever sit with their legs down and why anyone would eat those things that make make people so sick that they have to stay up all night or urinate all the time? Why don't people wear cooling vests? Shouldn't everyone wear one? Why do people have such slow heart rates? Is that a disease? How do they fly? With regard to diseases, I should say -- aw, come one, every "normal" person feels like he's dying most of the day and there's no real difference in perception of disease between the "normal" state of a normal person and the "dreaded disease" sick state of a "normal" person so what are we talking about? ------ As far as the trite references, the person who tells me (in some other language) to "be healthy" should know that I understand it as a reference to my name that she wants me to change (the word for "healthy" would make a nice name) -- because otherwise, there is no way for me to follow her advice. What's wrong with "Try to enjoy life even though you're suffering in the conditions the rest of the population lives in."? And "You're a pretty woman but you sure look green/grey/awful" and "That sounds terrible"? I think we'd be a lot better off if we lived with our own kind ...

I never understood that the reason I hated the way I felt when I did that had anything to do with a medical condition. I thought everyone felt awful when they did that. If I have to do anything low to the ground now, I sit on a low stool. You might try to find a way to get one with wheels (I've never seen one but if you can think of a way to get one ...) if your "job" is to pick up things on the floor. Otherwise, it sounds like either delegating the job to those people whose heads are closer to the ground or sliding on your backside to get to each new object is the way to go. (For anyone who gets greyed out, honestly, it's better to have only the floor look bad than the entire world).

OMM? http://www.jaoa.org/cgi/content/full/108/2/87 If he hasn't heard of POTS, maybe explain to him that sometimes it progresses to MSA. That seems to be something neurologists know about and know something about how to treat. You might also mention NCS so he gets an idea of other autonomic problems and remembers what he studied. And you might just say that your body compensates for low bp by raising your pulse, you are somewhat more (at least to all appearances if not in actuality) functional and that is the big difference. Tell him that you've been on Mestinon. They usually have had patients with Myasthenia Gravis so they may be interested. Explain to him the mechanism of how that works. Tell him about the small fiber neuropathy. Then ask for some of the tests you may want. If you think you need a rotating schedule of medications (as it seems from your posts), explain that they work for a time and then you get no benefit but you think it might be good to go on and off some (pick out what you think will work). If you want to know more about the mechanism of what is wrong, pick out what you think might be wrong and ask if he can order tests for it. If you think you need to know about EDS as a possible problem (even though they found small fiber neuropathy), ask about that and whether he has treated patients with that. Some of the people on here check one thing out and not another because they find one -- but it's a syndrome so it's hard to know whether really some of the other possibilities need to be checked. If you think there's something else going on, ask if he can order a test for it. I guess try to go in positive, encourage him, and tell him you were looking so forward to the appointment and had a lot of ideas for how he could help (and if he doesn't know something, you probably do know what needs to be investigated and he can look it up after the appointment if he needs to). If he can't help, ask if he knows someone who can.

It tends to regulate my bowel problems and I was quite sure that it would before taking it -- based on the medical research out there. Mine were getting very severe and I believe headed toward UC (frequency, urgency, some pain, skin changes). My guess is that the people who have stomach problems with this had (as of the time of taking it) normal bowel function (or a different kind of problem) to begin with.

I thought it was pretty funny when I read that neither your doctor nor you realized that before you took it (again). Maybe I always find it interesting that when people with this disease take a medication, whether or not they know what disease they have, the medication which usually works one way in other people affects us differently, and then we have to figure out why. (Obviously I didn't find your suffering a laughing matter). It's such a nuisance that reactions can vary depending on whether you have a real active disease state. It shows that it's hard to get good science with this disease sometimes and also makes it hard to figure out what to do. I wonder if it's a good test for NET deficiency.

Ask about it and ask to see if they'll let you try what you want if if they don't want to let you, find out why. If you need to, apologize about asking. One good thing to say is that all (maybe it's only seemingly very many) POTS patients are like this, they are very careful about trying new medications because they are so sensitive and their reactions are so unpredictable (and therefore, they also do a lot of research to try to figure out what they think they may not tolerate). (Obviously they are also miserable enough to want a medicine which will work to eliminate symptoms and go after that too). Honestly, at this point, I have difficulty between distinguishing how I relate to food and medicine. If I had a pharmacy available the way we have grocery stores, I would hardly feel like it's a big difference. I feel that my autonomic nervous system makes me need to drink at certain times, take medicine at certain times, avoid foods or medications which give me bad reactions, or take medications which let me eat or drink differently. All of my choices are either to control highly variable pulse and blood pressure or to get at the same nervous system which controls blood pressure and also digestion. When I think about that and the fact that I can't get a medication by myself, I get a little more brave about asking. You need help. This is the person who is supposed to help you. You may be a nuisance but you don't have a big choice if you want to feel better.

I think I'd like to see myself described with an epithet or as agitated. First of all, it would be nice if a doctor could look and say "aha, b***" and know you have POTS. "Agitated" also seems ok. I think I was also "pleasant."

For easy breathing, reduction of bloating, and other GI problems, I too have found that there is nothing comparable to Mestinon (except related substances/medications).

This article may be clearer: http://www.ncbi.nlm.nih.gov/pubmed/9344473 This would mean that if this is the underlying problem you have with autonomic problems (it would appear to be a possibility in some people), one treatment might be hydralazine (in addition to whatever hydralazine does if your blood pressure spikes.)

http://www.sciencedirect.com/science?_ob=A...417783132c561d1

Standard.

One local doctor said he had seen these truncal tremors before but not for about 15 years. That would of course mean that you couldn't have them because when something is so rare, it can only be seen once by any individual doctor in his whole career. Or maybe it doesn't have to do with the fact that he saw it last 15 years ago. It would appear that you just do not not have that "Je ne sais quoi," that (very elusive) quality that makes a doctor want to diagnose and treat you. You might ask the doctor what was so special about that other patient that made it okay to say he/she had "truncal tremors" without the belittling reference to when the doctor last saw them ... If he gives you an answer, please write in to the forum to tell us what that patient's great secret was.

http://archinte.highwire.org/cgi/content/a...act/146/12/2377 http://www.medlink.com/medlinkcontent.asp

Kudos to anyone without a medical background who has been able to wade through POTS articles and stand up for yourselves to doctors... I'm not sure I could have had I not been a nurse. It would appear that "falling" for doctors would help more than "standing up" to them. Right, nurses are better "predisposed" to get medical care for dysautonomia(s) than other segments of the population.

I seem to have the same pattern as carinara except that I measure lower when I wake up. So far, what I have tried to lower the highs has felt terrible including the one which looked so promising from the description of what it does. How many blood pressure medications do you guys try before finding what works? And do you go back to the specialist or your regular doctor? Do you explain that it feels like trial and error or do you just get one, and then go back when it feels awful? I thought when normal people went in, they just got some blood-pressure lowering medication and never complained about how it felt. High blood pressure was a silent killer and blood pressure meds treated people equally silently ... ----- I'm frustrated like carinara and given my dilemma above, I was just hoping today that someone civic-minded on here could create a blood pressure donation bank (thread): For systolic pressure, I have 40 mm Hg to donate for standing activities during the day and would like 10-20 mm systolic Hg for sleeping. For diastolic pressure, I have 20 mm Hg to donate for standing activities. I would like to donate my excess blood pressure to potsgirl as it is my understanding that she is at the top of the critical list for blood pressure donations for standing. For anyone who wishes to respond that it is impossible to donate blood pressure, here is my response in advance: http://en.wikipedia.org/wiki/Pun.