Ok guys.. How's everyone doing? Hope you're all well. So anywho here's my question .. As the title says *medicine or drug free* who here is on meds and who's just trying water and salt as their "treatment" if you're on meds what are the names and have they honestly helped you and if so by how much? I've heard of people having almost complete symptom free days cause of the right combination of meds and I've heard of meds making people worse. I'd like to hear some more stories. Again don't forget to mention the name. Hope to hear some good replies :)
I have yet w/ the help of EP and Cardio found a "Good" med for me that I can tolerate well. So, right now....I am oddley enough takind Dogoxin for the Tachycardia.
Otherwise, I try so hard to stay hydrated and to "Up' my salt intake somewhat.
To be honest..this alone has not helped me w/ my near syncope or syncope! The Digoxin though has helped w/ my Tacky - Heart...Lol
then of course, I am on quite a few other meds for the Multip0le Sclerosis..But that does not count as to your question :)
I want to preface my response with a HUGE caveat ...
Please realize that each of us here has different forms of dysautonomia, and even among those with the same overall diagnosis, there may be differing causes or differing progressions of the disorder or differing levels of severity; trying to compare medication regimens from one dysautonomia patient to another may not be very meaningful at all because we're so diverse.
That being said, here are the medications I take that are most relevant to dysauto (I'm on quite a few others as well, but they're less related to the dysauto):
Midodrine 10 mg every 6 hours (i.e. 4 times daily)
Fludrocortisone 0.1 mg 1x daily
Klor-Con M20 2x daily (for hypokalemia)
Ondansetron 4 mg every 8 hours (i.e. 3 times daily)
If you want to know what I take for these dysauto-related issues, let me know and I can add those:
-non-migraine headaches/other pain
-prevention of menstrual cycle
I am also waiting on insurance approval to get a central line (mediport) implanted to begin regular home IV normal saline treatments. Up to this point, I've just been receiving IVs on an as-needed basis at the hospital.
As far as non-pharmaceutical treatments go, I am on a fluid- and sodium-loading diet (4 L/day and 5000 mg/day, respectively), I wear custom fitted Rx graduated compression stockings (40-50 mmHg), and I also did phase II cardiac rehab (I would be in phase III right now, but that's a long story).
Thanks a lot for your replies guys :) tonya- as far as "upping" your water and salt intake does it ever help you at all? For me I find that it helps only when it wants to *weird*.. Heiferly- I do understand that everyones different as far as diagnosis treatmeant and outcome but its always encouraging to hear what helps someone :) I see you're on midodrine. I've heard good stuff about that med. Too bad their taking it off the market :/ but that's great that you're gunna be getting the saline treatment. For me iv doesn't do much but I'm glad it works for you:). Question .. I posted about blood pooling once before. Not too sure if you'd know but since I don't actually get the redness in my feet is my blood still pooling? Is it even worth me getting the compression stockings? I'm still trying to find a doctor who understands and is willing to help me find the right treatment so thanks for helping in the meantime :) hope everyone had a great day! x0x0
Ah, the blood pooling, that's a tricky question ...
Funny as it may sound, the redness isn't the best way to figure out the blood pooling situation. There are a couple of different tests that doctors use to assess this. One of them is radionuclide hemodynamic testing, and unless you've got a nuclear medicine technician, some injectable nuclear stuff, and this really HUGE machine (that I don't know what it's called LOL) hiding around in your basement ... yeah, don't try this it home. :-p That test isn't available at many hospitals in the US at all, and in fact after I had it, my local hospital was very curious about it and wanted me to describe more about it because not only is it not common in the US, but it's not well known even.
Okay, so moving on from that, we have something called strain gauge plethysmography (don't ask me to say that three times fast):
In a nutshell, a special device can measure if your calf gets bigger when you stand for a while, which would indicate that blood is pooling in your calf. Cool beans. Here's some more on that from one of the country's top experts in dysautonomia. Unfortunately it's so technical it makes my head hurt to try and read it. :-/
On the bright side, I think this type of testing may be available more widespread, so maybe you can talk to your docs about it. Or you know, print out that page of medicalese for them to translate. :-p
Oh, and regarding IVs not doing much ... I just thought I would ask ... how low was your BP when you got IV treatment and what did they use as a measure of how many IVs to give you? Which is to say, did they decide *beforehand* "you're going to get X bags (liters) of IV saline" or did they just keep going until your BP got up to a certain level and/or your HR went down to a certain level and/or your symptoms alleviated to a certain point? And how many bags of IV saline did that end up being, either way? I'm just curious if the differing protocols is part of the reason why some people have less success with it, or it's something else.
As for the midodrine, we don't know for certain that it is getting pulled off the market; it's just a possibility at this point. We'll most likely know more in September. So keep your eyes on that thread!
No, to be honest...I will agree w/ you in that the "Uppage" of the sodium and fluids only help when it feels like it. So I know what you mean!
it depends on what day of the week and what hour of the day. For example, I thought I would ride w/ hubby tonight to grocery store and about half way through it......Yep! He had to take me to the car Fast, fast, as I was fadding. My pulse was racing like a race horse and then the spots in my eyes started to appear.....You know how it goes right?
Anyhow, I really hate when this happens. it is hard to predict when it is going to rear its head or not. I suppsoe I should jump in my scooter right? I already use a cane for my balance issues due to my MS. Any suggestions Heiferly?????
Heiferly- haven't you ever felt like you become smarter when you got sick? Lol I sure do *knowing all these medical terms!* anywho my bp was about 90/50 and I only got a bag of iv and they sent me home. Maybe it was cause I didn't have enough not sure. But oh ok that's great that its not for sure *the midodrine* cause I know alota people who depend on that stuff! But yeah I was wondering about the blood pooling cause I know that's like a big symptom with pots along with the tachycardia *which I def have* .. Speaking of tachycardia .. Does your heart rate lower as soon as you sit/ lay down? Mine does. Like literally within seconds its gone from 120 to 40s. Kinda scary...
Tonya- I hope you get better! I def know what you mean. Today was 'moving day' and I myself saw stars a couple times and it wasn't up in the sky either! Lol. Just tried doing too much too fast now I'm wiped out but I'm in bed relaxing so I'm hoping tomorrow will be a better day for the both of us! Take care :)
I know there's already a disclaimer in the sidebar and I say this all the time but:
I am not a doctor and this does NOT constitute medical advice.
That being said, your BP was 90/50 and you got 1L and they sent you home?? WAT???? After that one bag (and *before* removing your IV line), did they take your orthostatic pressures to see what progress you had made from that one liter? (I.e., they should have taken your lying down, sitting up, AND standing pressures.) And if so, what was your standing pressure up to?
Hrm, maybe I'll approach this a different way to avoid even the pretense of giving out medical advice. Don't even answer that. I'm just going to tell you what they do at my hospital; it's ranked as one of the top 20 in the country for heart/heart surgery, so I trust them on cardiology. They do the normal triage stuff (BP, HR, temp) but the BP they get off me there is always garbage because I have "white coat" BP at the hospital (it's artificially high when I get there because I get nervous). I bring a slip of paper with me with my last few recordings from home and/or my doc's office and/or my home nurse showing the low BPs (and high HRs if relevant) that brought me to the ED in the first place. They do an EKG immediately; if it's normal, I wait eons to be seen. If it's remotely funky, I get myself speedy-deliveried into a room in the ED. I tell my spiel to the doc, sometimes get another EKG (I couldn't tell you why I need a second one, but they do use more leads on that one, so maybe they're getting a more accurate one if the first one was funky), and the nurse comes to insert the line for the IV. She draws blood from the line, takes my BP to get a "real" starting BP (by now my "white coat" stuff is usually over as I'm settled into my room), and starts the first bag of saline. For me (because they already know how many bags I usually take, your mileage may vary), they usually start off ordering at least two and then the orders are to play it by ear from there. So after the second bag, they see what my lying down pressures have been. They are usually aiming for hypertension. This makes sense if you think about it, because my BP is going to drop when I stand (again, this depends on what yours does ... I'm talking about ME here). So if they know mine is going to drop approximately X/Y when I stand up, then they want it to be extra high when I'm lying down so I still have room to stand up without being so hypOtensive that I faint or even *feel* faint. Part of the idea here is to get me SO tanked up that I'm not back for more tomorrow, too. So I don't think they're aiming for barely enough to get me walking out the door like a drunken sailor. Sometimes after a bag or two my BP is still actually going DOWN, LOL! (I guess it's still the "white coat" wearing off? I dunno. It definitely weirds out the docs.) Anyway, once my lying down BP is around maybe 130/90, then they're ready to try sitting and standing me up. If those orthostatic pressures look okay (and I feel okay and don't start falling down or anything while they're taking them), then the rule is that I have to make a clean lap around the emergency department (with a person on either side of me to "spot" me in case I start to go down) to make sure I can actually get around without my BP suddenly dropping out on me or any sudden return of symptoms. If, and only if, I clear that, do they declare me ready for discharge and remove my IV.
That has taken me as many as six bags (6 L) before (which was in addition to the 4 L I took in orally that day, as I kept on drinking throughout). If it's going to be more than a couple of bags, they move me from the ED to a sort of intermediate ward that's not-quite-ED and not-quite-admitted where it's quieter, you have more privacy, and honestly, it's pretty much the same as being on a ward where you're admitted except you can only stay there for 23 hours or less (after that they have to decide to either admit or discharge you). Also, if I need more than a few bags, they start running them more slowly at a controlled rate over a greater number of hours through the IV pump rather than as gravity drips. And if I decide I'm ready to try walking (instead of taking wheelchair) to the bathroom, and that goes south and I pass out or almost pass out (whether or not that includes taking a header into the toilet ... which I don't recommend, btw), that's usually a sign to them that I need more fluids, regardless of what the BP cuff is saying.
My medical non-advice is uh ... at least make sure they're checking your orthostatic pressures before they boot you out the door, and if you still feel symptomatic, you should definitely speak up!! One liter of IV saline isn't a lot. :-/
Have you tried wearing a polar monitor? You know those chest strap things that runners wear that send a signal to a watch with your heart rate on it? They can be set to beep at whatever threshold you set them to (or at least some can); I had mine set to beep to warn me when my heart rate got over a certain point so I would know I was "heading south" so to speak. It's not exactly a super-early warning system, but it gave me a little more lead time than my own Spidey-senses did. :-p I haven't been wearing it lately, but I probably ought to.
Other than that, I don't really have any magical notions about predicting when I'm going to have an acute episode. I mean, you know some days are just bad days from the get go, but other days start off okay and then all of a sudden I'm just Not Okay. (I actually say these words on those occasions "I am NOT OKAY." I wonder if that's unnerving to other people. Hmm.) I guess that's why I like having my rollator walker so much. Whenever I have that, there is a chair within a few inches of me everywhere I am. I pretty much always have that or my wheelchair now except when I'm out with Mr. McDreamy, and the only reason I can sometimes get away without when I'm out with him is because he's strong and agile enough to catch me. I imagine there will come a point when his poor back will give out (or his will or good graces?) and that will no longer be an option, but for now, it seems to be *his* preference to occasionally take me out unencumbered. Who am I to complain if he wants to test his reflexes? :-p
Well ladies, this is one insomniac who needs to at least pretend to get some sleep. See you on the flipside!
When you described your experience you could have been talking about me. I am not glad that it happens to you but is somehow comforting to me to know that others go through the same thing I do. I get so down on myself when these things happen and for some reason end up feeling like somehow its because I am a weak person.
Someday I hope drs can find a way to help this terrible stuff. I also never know if its due to autonomic dysfunction, ms, or just plain panic. seems it all runs together.
Medicines did not work well for me due to side effects- chest pains with midodrine and other side effects with florinef. The doctor told me there are a lot of patients the meds don't work well on and encouraged me after the medicine failures to try to treat naturally by eating a lot of salt and to use compression stockings if I felt they helped. I paid a great deal of money for a pair after being measured for them and had so much trouble with them, I think I only wore them twice and they got a run in them on that second time, I think.
My worst times comes in the night and early morning and after eating a larger meal or doing more active walking or upright activity. You really don't want to drink too much at night or you have to get up more! Especially for someone with interstitial cystitis like myself.
I sometimes eat salt from a shaker off my hand when I feel like I'm out of balance with the water and the urine looks dilute. It's a certain feeling I get occasionally that I've never had to describe. Thankfully, that feeling doesn't happen very often. Adjustments in living is the other component- like not doing as much vigorous activity in an upright position, sitting on the edge of the bed before getting up, a shower chair, etc..
Sorry, I didn't answer your question about tachycardia. I don't do well sitting up, so my HR goes down *some* from standing to sitting, but it's still in the range of tachycardia when I'm seated. If I go from standing directly to lying down, yeah, it settles pretty quickly most of the time (not always, but I'd say the majority of the time unless I'm in a really bad flare). But my docs are no longer calling what I have "POTS," so I don't know if I'm the best person to compare with or not. I'm pretty close to POTS in many respects, so I don't think this will be that far off the mark?
I *can* tell you that the graphs of tilt table tests on "typical" POTS patients show heart rates returning to normal quite rapidly once the table is put back flat from upright, so I think that is the way most POTS patients likely are. However, your gap of 120 to 40 ... so like 80 bpm is rather large and probably a bigger difference in terms of bpm than most POTS patients have between lying and standing. Thirty bpm is the diagnostic minimum, and I'd say the average hovers closer to that than to the large jump you're experiencing. (Not because your 120 is unusually high for a POTS patient, but because your 40 is unusually low for an average resting heart rate for a POTS patient. A number of POTS patients may have lows such as that from time to time, but it isn't their "normal" resting heart rate while lying down, or if their resting heart rate is that low, their standing one isn't as high as yours ... hope that makes sense.)
My numbers are something like 65-80 lying down while sleeping overnight only, 75-95 lying down while awake and/or during the day, 100-120 while sitting up, 115-155 while walking/standing, 14?-16? can be the last number I see before I lose consciousness in a faint. I don't recall ever seeing anything in the 170s whilst conscious. I've had episodes of bradycardia down into the high 30s or low 40s, but these are rather atypical for me.
Been on the meds rollercoaster for a little over two years. I've learned quite a bit about patience. I'm on the beta blocker bisoprolol fumerate, the SSRI zoloft and my doctor just added the supplement L-Arginine. I had little or no problems with the beta blocker, the Zoloft was another story, nausea and the mental side effects that the drug give extreme caution about, it took my body almost a year and a half to adjust to it. the arginine is the most recent addition last week, I've had no negative side effects, and I feel less fatigued and have more energy since I started last week. With this combo, I'm able to work as a kindergarten teacher with only being slightly symptomatic.
L-Arginine increases nitric oxide, which helps dilate blood vessels. Do you know if this was your doctors intention for prescribing it? My son is supposedly deficient in arginine, (he has severe orthostatic intolerance) but he is also deficient in growth hormone, which is a huge producer of nitric oxide.
My son won't take supplements, but if you feel that your energy increase is due to the addition of the arginine, I have to wonder if getting arginine into my son would also increase his energy. I can only assume from all the info I have been reading this year, that his symptoms are most likely from his hormone and amino acid deficiencies causing vascular dysfunctions (in spite of his endocrinologist's disagreement). I am hopeful he will have major improvements when he starts growth hormone replacement.
Can you explain the link between the arginine, nitric oxide, and orthostatic intolerance more? I'm really confused now.
Nitric oxide dilates (widens) blood vessels. This is the opposite of midodrine, one of our most common treatments for orthostatic hypotension, a vasoconstrictor (tightens blood vessels). It seems to be that widening the blood vessels would increase the pooling of blood, worsening orthostatic intolerance. From what I can see, arginine is supposed to lower blood pressure (which I would think would increase orthostatic intolerance). Obviously I'm missing something here. Can you fill in the blanks?
It is not just you who is confused. Dr. Bell's book explains that if you have the problem of dysregulated nitric oxide, your blood vessels both over-constrict and over-dilate.
We need nitric oxide, in the proper amount, and released at the proper time, to dilate blood vessels and allow better oxygen transport when running, exercising etc. (I think NO exists for something like 3 seconds when released, and is then converted to superoxide, which is a vasoconstrictor.
Overproduction of nitric oxide also overproduces it's toxic byproducts - superoxide and peroxynitrite, which could lead to cellular oxidative stress if you are unable to get rid of them safely (such as having a deficiency of glutathione). These byproducts of nitric oxide can interfere with energy production within the cells by inhibiting oxidative phosphorylation. A significant deficiency of COQ10 (such as happens to people taking cholesterol-lowering drugs) or glutathione would disrupt normal oxidative phosphorylation; normal cell function. Nitric oxide byproducts can cause a huge loss of glutathione, as it is used up in removing these byproducts from your body. (My son's first anesthesia was Sevoflurane, which causes a huge release of nitric oxide, and results in significant glutathione loss. I assume "healthy" people recover from this readily, but it was soon after this, about two months, that he began to show signs of orthostatic intolerance and nerve dysfunction, which I assumed at the time was due to his adrenal insufficiency).
NO also lowers blood pressure by stimulating the release of norepinephrine. However, overproduction of NO can cause the adrenal glands to compensate with adrenalin to constrict the blood vessels.
Arginine produces NO by activation of an enzyme called nitric oxide synthetase; NOS. There are four known forms of this enzyme - inducible NOS (iNOS), endothelial NOS (eNOS), neuronal NOS (nNOS) and mitochondrial NOS (mtNOS). iNOS is increased with infections, to increase blood flow to an infected area. nNOS is produced in neurologic injuries. The dilation effects of arginine vasopressin (also known as anti-diuretic hormone) are mediated by nitric oxide.
Growth hormone produces a huge amount of nitric oxide. This is what really has me confused. Since my son is very deficient in GH, arginine, glutathione (and many other nutrients, such as vitamin E), I would expect a vasculophathy involving blood vessels over-constricting when he tries to walk. But then, NO byproducts induce constrictive effects. Many adolescents experience symptoms of orthostatic intolerance during unusually massive growth spurts. I would think this could be due to excessive release of nitric oxide, which for some reason their bodies can't keep up with, causing over-dilated blood vessels.
There are many other mediators of nitric oxide. Lysine and vitamin B12 both reduce nitric oxide.
I pressed "post comment" by mistake. I wasn't finished, but perhaps I should be, since I think my explanation is probably just as confusing as before! (I'm very tired).
Anyway, everything you said about arginine and nitric oxide was correct. It is (supposedly) the dysregulation of nitric oxide and it's toxic byproducts that can lead to orthostatic intolerance, or at least play a role in it's development.
I tried to get my son into a heart clinic for an echocardiogram, to see just what is happening with his thoracic blood vessels when he stands up (he really does have very severe OI), but they didn't understand why I wanted this done, and instead referred him to the genetics clinic without seeing him, as there was some discussion about his hypermobile joints and whether or not he has Ehlers-Danlos. I personally think he has connective tissue problems due to the severe loss of GH, but we'll see.
I'm sorry if I didn't explain the link between nitric oxide and OI very well. As I said, I'm confused too!
I am medicaded withhh florinef and midodrine, while they are not a miracle for me, i am happy not having such near syncope since added midodrine. I continue to use salt and water also.
my bp is still low, but we have room to 'uppage' my doses:)
thank you all for such incredable support on the forum and iindepth information!
be well today, amo
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