I am a 38 year old female. I was diagnosed with low BP and tachycardia. My BP is 80/60 most of the time, and 90/30 during excercise(had a treadmill test). All the tests (ekg, stress, and echo) show my heart is fine. Every morning my heart races to 160 and then I am extremely weak all day long. I'm on Midodrine for low BP and Lopressor for tachycardia. I also have bradycardia(I think that is low HR). My pulse is 42 on a regular basis. It seems that the two meds are fighting eachother and I'm so weak all day. I have conflicting directions from my cardiologist, EP, and GP. I am so frustrated and always feel sick. I'm going to a diferent cardiologist next week for a second opinion. Any input would be appreciated.
Have you been diagnosed with Dysautonomia? Your symptoms, and current treatment seem to indicate some type of Dysautonomia. How long have you been experiencing bradycardia?
If your new Cardiologist isn't able to help you further, I would recommend making an appointment with a Cardiologist at an academic teaching hospital. There are also doctors that specialize in autonomic testing:
One drug your doctor may recommend is Florinef. How much Lopressor are you taking? If you feel that the bradycardia is related to the beta blocker, then you may want to ask your Cardiologist about lowering it. Rarely, Midodrine has been known to cause bradycardia a small percentage of patients. Though normally, it is well tolerated, and helpful. Have you had a Tilt Table Test?
I have not been diagnosed with Dysautomia. Others in the forum seem to think that's what I might have. I have had bradycardia since before taking Midodrine or Lopressor(over a year). I am also currently on Florinef. I thought the Midodrine was suppose to raise my BP and HR. I am on 75 mg of Lopressor a day and 5 mg of Midodrine(not enough I'm afraid). Anything less of Lopressor does not controll my tachycardia, which still goes up to 100 every morning. I am in Las Vegas, NV and it seems the closest autonomic specialist is in Scottsdale, AZ(from your websights). I have not had a Tilt Table Test, yet. I'm hoping the new cardiologist will suggest that. It seems to be the only test I haven't had. I really need relief from this chronic fatigue and weakness. Sometimes it gets so bad that my stomach hurts and my chest is heavy. I was just in the hospital for 3 days. Upon my release, the doctor told me to stop the Lopressor. The next day my tachycardia was up to 160 again and I was extremely weak all day, as usual. Can you describe how to consult with a doctor on the Expert Forum? I can't seem to find how to post a question on that sight. My next task is to look for an academic teaching hospital for a cardiologist close to home. Thank you for your input.
The reaction to Midodrine I described above is extremely rare. It isn't something you would have to worry about unless bradycardia was a new symptom. It only happens to a very small percentage of patients. I only mentioned it because I thought it may have been a new symptom. So sorry to be confusing!
Unfortunately, I am not certain when the Heart Rhythm Expert Forum will be opened for questions again. I will try to find out for you as soon as I can.
In the meantime, our health pages contain information about Dysautonomia that may be helpful to you. Based on your symptoms, I would recommend focusing on topics such as POTS, (Postural Orthostatic Tachycardia Syndrome), and NMH, (Neurally Mediated Hypotension).
If the tachycardia (rapid pulse) is based solely on time of day or time since waking up it might be something different than your average POTS condition (where the heart speeds up after standing). POTS *severity* will vary based on time of day and other conditions, though. Does your heart race shortly after waking up even if you stay laying down?
One thought that comes to mind would be a pheochromocytoma, which happens to get "stimulated" when first moving around in the AM... just a thought. They say when they get "pushed" and such, they can release a surge that triggers symptoms.
I do believe my heart starts racing even before I get out of bed. I've never taken my BP still laying down, but my entire body starts aching before I even open my eyes. Today I laid in bed for an hour before getting up, and felt very sick from my chest to my ankles. I'm just assuming my heart is racing at this time. All the symptoms for Dysautonomia are present; extreme weakness(CFS), tachycardia, IBS, bradycardia, low BP, dizziness upon standing(OI), POTS(cardiologist diagnosed). And everything began right after an extreme trauma to the head and chest. What do you think? What exactly is pheochromocytoma?
A "pheo" is a non-cancer tumor that secretes things like norepinephrine & adrenaline (normally the job of the adrenal glands). They can sit there building up these "catecholamines" and then if pushed physically release a rush of them, causing sudden symptoms. Probably not the case, but sometimes they can get triggered by certain movements and result in repeated but mysterious probs.
If symptoms started after a trauma, then some specific things that are part of "autonomic" and hormone regulation come to mind. The pituitary and hypothalmus glands are central to much. They can get hurt to various degrees and affect various "master hormones". Deficiency of some push you toward fatigue, some dehydrate you, others are more indirect like growth hormone and such (which show up mysteriously when deficiency is sudden and in an adult, rather than persistent and in a growing child). There would also be potential for specific glands to be hurt, adrenals, thyroid, parathyroid. Some of those things can cause POTS-like symptoms.
Were "endocrine" issues thoroughly tested for you as well? Did they do some MRI's and such to see if there happened to be any signs of subtle damage? The first order of business is treating the major trauma issues, then allowing a decent period for some healing to occur... but there can be more subtle things left over that might be worth investigating.
I should add that injury can cause autonomic damage itself... I'm not mentioning the glands & hormone thing as a substitute or as being more likely... just as another potential thing that creates similar symptoms. If there were a distinct hormone shortage, it would tend to be more directly treatable, too. That's the reason I mention it, not because it is any more or less likely than dysautonomia.
I'm confused. I've been diagnosed with POTS already by my EP. Is that a 'symptom' of Dysautonomia, or a 'type' of Dysautonomia? And is Dysautonomia a result of the wrong levels of some hormones? Should I see a neurologist? I have not had a brain MRI. Though my GP did recommend it. I'm having a hard time getting my insurance to cover that, only due to dizziness and fatigue. Also, I'm hoping this information won't deture your taking me seriously, but my trauma to the head was ECT's. None of my symptoms(tachycardia, low BP, etc.) were present, even a little, until I had those. I started getting sick and losing weight before I was all the way finished with my sessions. I had to stop before completing them due to headaches and nausea and overall weakness. You can see how my history could cause doctors to look the other way. I was looking at the treatments for Dysautonomia, and I'm already on more than half the meds and lifestyle changes(many small meals, lots of fluid, extra salt intake, etc.). That's why I ask if POTS is actually a 'type of' Dysautonomia or just a symptom. It seems I am being treated for it already, between all of my doctors. I'm even on anxiety meds from my psychiatrist. All I want is to feel healthy again. Is this too much to ask?
POTS is a type of dysautonomia for sure. There are some things like Addison's (which is a shortage of cortisol) that can create similar symptoms though. I don't know if ECT has much likelihood to cause an injury like an impact can... I assume not, it is essentially a series of mild seizure episodes.
For Addison's I believe a doc would check cortisol and/or do an "ACTH stimulation test" or similar (an endocrinologist I believe). I had a moderate head injury and there can be symptoms directly from that as well, usually resolving after months or years... common things are fatigue and mental clouding/slowing and such (I still never know which of my symptoms are directly from my head injury and which are indirect from POTS/OI or if there's much difference). Other than finding a specific hormone or something out of normal ranges, one is stuck just treating symptoms rather than having a full "cure". But for a decent number of people, POTS eventually subsides.
I can understand your frustration but you are actually being treated better for your POTS symptoms than I am! Fludrocortisone, beta-blocker (like Lopressor) and midodrine are said to be the things to try. My doc won't do beta-blockers for me at this point (because my heart rate is already low) and didn't mention midodrine for some reason (but I shall try to bring this up myself). I had years of "you're just dehydrated" and "it's just anxiety"... which is certainly frustrating.
It does sound like the docs are attempting to address your dysautonomia... just have to keep working with them and see if they can pin it down better. It is just tough because you have to try different things and adjust based on how it goes. I've only been given fludrocortisone thusfar, which didn't work any magic for me either. Have they mentioned anything they can try next... or are they insisting that you stick with the current approach for a while longer? I don't have any experience with the beta-blockers (as they're contraindicated for me) but perhaps there are others that could be tried?
One other thing... as far as I know a beta-blocker needs to be gradually lowered in dose or you can have even worse tachycardia from stopping it. I could be wrong (somebody please correct me on this... or anything else of course :)
I have bradycardia too, by the way :) I was clocked in the ER doing 40bpm on EKG... odd because an ER visit would usually raise your heart rate! I would recommend taking BP & pulse at various times of day like before getting up. You can offer this info to the next cardio in case they can make something of it. Don't press it on them, but offer it (some docs need to handled with kid gloves :).
You won't believe what I just read. One cause of POTS is electrocution! It all makes sense to me now. Now if I can just convince my doctors I have CFS, I can be treated for this. The tachycardia is controlled by the beta-blocker. You should be on that is you have tachy, even though it lowers your BP. That's what my EP said. I guess one is worse than the other. Like I said, the Mididrine does work for low BP and HR. It is short lasting, so I was told recently to take it on a as-needed basis, like 2 times a day when symptoms occur. When I thought dysautomia was another disorder than POTS, I made an appt. with a new cardiologist. Since I've found POTS IS a form of dysautonomia, I'm sticking with the cario. and EP I have. I AM being treated for the symptoms already. You're right. There is not much else I can do. Thank you for telling me the symptoms sometimes subside. That gives me hope, for the CFS(not diagnosed yet) is seriously extreme. I can't work due to the weakness. The next step for me is a tilt table test,
though it won't show anything that myself taking my own BP has shown, I'm afraid. And yes, people have told me I'm dehydrated and simply have anxiety for years, also. It is frustrating. I have tried drinking gatorade, eating small meals with extra salt, drinking plenty of water. Sometimes it seems that does make me feel better a little. But, like I said, the tachy is definitely controlled by the beta-blocker. I should mention that it's been a year and a half since my treatments, and no relief yet. I guess I still have hope. As for the beta-blocker being stopped suddenly, it was worse the next day than ever before. I think that was a bad call on my doctor's part. I'll tell him on the 2nd when I see him for a follow up appt.. Your HR at 40 IS low. Mine was 42 in the ER. The doctor said that was normal for a runner. I said,"I don't excercise and I smoked 2 packs a day until a month ago!' He didn't seem concerned. That upset me a bit. Anyway, good luck. I hope suggesting midodrine works for you. Actually, let me just say that the midodrine worked for the 1st couple of weeks, but then taperred off effectiveness after that. The cardio. stated that your body simply gets used to it after a while. That's a bummer. I will try to remember to take my BP before getting out of bed. That's a good idea(hard to remember when you're asleep!). I had a heart monitor for 3 days, in retrospect, they should have peeked at my HR before getting out of bed then. I didn't mention it though. I think I'll try to get appts. every 2 weeks instead of monthly with all of my doctors until this is under control.. Do you have ant CFS symptoms? After the tachy being under control, I'd say that's the worst to deal with. Also, do your legs always ache? I just got out of the hospital. They did CT scans of my stomach and chest. All of the heart tests, too. It's crazy how one can be so healthy, yet feel so awful! Like I said, good luck with you. It's been nice talking to someone with the same problems. I really appreciate this. Thank you.
Ritalin, (as well as other stimulants), are occasionally used off-label to treat Dysautonomia. They can be used as vasoconstictors, and have the added benefit of easing symptoms of fatigue. Here is a link to our health pages showing other various treatment options for Dysautonomia.
I checked out the pheochromo. sites and it appears I don't have as many symptoms for that as I do dysautomia. High BP is one, and I have low BP. Thank you for your interest, though. Do you know which doctor would prescibe me Ritalin? My EP, Cardio., or GP? Like I stated, this fatigue is so depilatating that I can't even work. I got hired recently at a job (on a good day) and now I can't make it to the training. This is upsetting, especially in these economic times. I also checked out the Treatment site and I am already taking more than half of the meds, and changed my eating and fluid intake on my own. Thank you for your input.
Reading through your post, you wrote that your doctor told you to take Midodrine 2 times a day because it's short acting. Was this a typo on your part, or is that correct? Midodrine only lasts 4 hours, so I should think you would be taking it waaaay more often than twice a day. If the Midodrine gets your BP up, you should (in theory) have less tachycardia. So if your doctor really told you only twice a day, you may want to call back and get that clarified. I might have some other thoughts for you later, but am totally in a brain fog right now :)
Thank you so much. I called and the nurse said to only take 5mg twice a day. I know it isn't enough, but I see the cardiologist on the 15th of September. When I go in and he sees my blood pressure is still low, or I report to him that it only works for a short time(he should know that), then we'll see what he says. Even soon after taking it, my BP is like 95/70. Better than usual, I guess. By the way, my tachycardia is only in the mornings, directly after waking up. It doesn't wake me up, but begins right after waking. Maybe because my BP is so low from sleeping. I don't know. I just want to feel better, you know?
Docs don't have specific understanding of POTS so there's little way of knowing for whom it will subside. That happens for some and sadly doesn't for everyone. Either way, don't let *anything* take your hope away. I like "Shawshank Redemption" for a deep and entertaining look at hope :) Perhaps we can build a POTS Resort in Mexico that we can all escape to after slogging through the sewer of diagnosis & trial-and-error treatment :) Or you can start a new theme hotel-casino in Vegas with special "reclining slot machines" and such! Turn your troubles into millions.
You're definitely on to something with the CFS issue. Researchers acknowledge a crossover from each (POTS with CFS and CFS-P). The symptoms cross over, as do various theories about causes, as do several approaches to treatment. Fatigue (mental & physical) is my primary issue too. I will definitely press the issue of beta-blockers... I might have to take them cautiously and see what happens. I am optimistic about midodrine (not sure why my doc didn't "offer" it... I'll have to investigate).
BTW, probably best to go light with acronyms and research with some docs, they can usually make the best use of direct reporting of specific symptoms. If they log "patient claims to have CFS" it is less useful than "patient reports frequent fatigue, exercise intolerance, etc." They get uneasy if they're left out of the loop :)
Also, be "steady" when reporting that a treatment isn't cutting it. POTS is frustrating to them too, so do your best to form a team with them to tackle it as best you can. This isn't going to happen every time, but it's a goal at least. (The doc that didn't advise SLOWLY decreasing the beta-blocker might be a different matter but probably best to let stuff slide as best you can... at least until you've gotten closer to a solid treatment).
Everyone says that the process is very "trial & error". Harden yourself in preparation for bumps in the road, but keep on going. In my opinion, if you let your doctor know that you are aware of the fact that the treatments have pros and cons and even bad reactions (and demonstrate some fortitude in facing the challenge) the doc is more likely to keep working positively with you (rather than shutting down the process and driving you away... which does happen to lots of people with this illness... having to make several doctor changes is the norm). It sounds like you are doing this well, and that the docs are addressing autonomic issues so just stay on track and don't get discouraged... even if you do end up switching a few docs or taking a few detours (that's apparently the norm for this stuff, sadly).
It's true the tilt table will just confirm observations already evident from "supine" to "upright" measurements. I'm concerned about that myself! Others with more experience can probably add to this... but there are possibilities that they can observe some details that help guide treatment, and even give some meds during tilt table and see how your body responds. It also helps generally, to have a specific "medical sign" documented since much of the "syndrome" is cloudy.
The ER doctor's comments make me laugh. I had my 40bpm attributed to being "such an athlete" too! I do exercise as best I can, but not enough to explain that! The funniest thing to me is that my low heart rate is "explained away" by my being in such good shape... and simultaneously, my "orthostatic intolerance" is from my being "deconditioned". And they tell me I'm "just dehydrated"... as I am holding my "Camelbak" that I always have full of water. Gotta laugh :) Keep in mind that an ER will only focus on typical severe issues... so a chronic and confusing condition is never their forte. But it is funny/frustrating anyway.
Please keep us posted. I am hoping you end up being a solid success story... and if things get rough the folks here are always up for helping as best they can.
Sorry to ramble, but one more thing. I have a "tremulousness" that feels like a racing heart (often in the AM) but my actual heart rate is slow. Is there a chance you have a similar thing? Make sure to take actual measure of heart rate (stopwatch or some device) so you know for sure what the pulse is at those times. Also, as meds & food wear off through the night, thing can happen in the AM. Just another thing to keep in mind when sorting it all out.
I will definitely check my HR in the AM again. Before the Lopressor, my HR was up to 160 in the morning for an hour or so. Even though I still feel ill in the morning, since being on the beta-blocker I haven't checked it in a while. That is a good call. I'll let you know more in the morning.
If you can, get an automatic digital BP/heart rate monitor from a drug store and record your values at different times, like as soon as you wake up, when you sit up, going up stairs, etc. That can be very helpful. If you get one that goes on your wrist, you might even be able to tolerate wearing it at night so you don't even have to move when you first wake up. They range in price around here from $30-80.
I have a terrible amount of fatigue as well, but I have had an undiagnosed autoimmune disease for the last 14ish years. That's almost certainly the cause of my dysautonomia, but I think it's also the cause of the fatigue, because my lymph nodes always swell at the same time I get exhausted.
Funny thing; I woke up this morning to take my BP, HR and had to get out of bed to take it! That didn't work as well as I had planned. Anyway. it was 92/71 and 93. The HR is high for me. It's usually in the 50's or low 60's. I was in the hospital last week and regularly before getting out of bed it was 90/65 and HR of 49 every morning around 5am(they wake you up so early!).
I'm definitely going to get the HR monitor for my wrist. I already have the portable one, like I stated. That seems way more convenient.
The one thing I'm greatful for is knowing what I have now. I've been to the hospital so many times, worried I was dying(seriously). Now I feel more relaxed knowing it isn't life-threatening. You know, that we'll just have to live with it.
Hashed out a couple more details on the theme-casino: Complimentary Gatorade or NUUN rather than cocktails... waitresses are RN's to give an IV saline as needed... keep the gamblers going (plus nurse outfits are kinda cool). Won't be all the flashing lights... they tend to get a little too stimulating. For a grand prize... no shiny new car, just an expense-paid trip to Mayo/Vanderbilt/Cleavland Autonomic Center. We'll host all the American Autonomic Society conventions, of course. If you run up a bill you can't cover... no worries, no broken knee caps, you just get volunteered for the latest experimental autonomic medical studies. Rooms would have all beds raised slightly head up... showers with seats. I have not figured out how to handle the polyuria issue... that get's a bit tricky :) Oh yeah, padded floors... for the fainters... lawyers will insist on that.
OK, I've more than exhausted that joke, probably should have quit while I was ahead!
As for the tilt table, there's not a unified standard to it exactly! Some do it just 5 minutes "upright"... others give a really long time (30 or 45 minutes). Some do provocative drugs (isoproterenol and others), mostly looking for fainting if it doesn't happen right away... or I've read some do this to assess reaction to a couple potential treatments. They should do EKG during test to see if an arrhythmia is involved (other than "simple" brady or tachy). I don't know which approach is best or exactly who does what, but it varies a lot.
I have a wrist BP monitor myself. It works ok but I worry that it isn't as consistent with readings as the arm kind. You have to make sure it is at "heart level" otherwise it can read higher or lower than actual. I'm gonna get an arm band one and see if readings are steadier (of course, my BP is unstable to begin with :)
No, please, keep going with the casino. I can really use it right now. We should put your plan in the Health Pages for this forum! Could we get a dunk tank for "uninformed" doctors?
I got the arm band monitor thinking that it would be more accurate, and it's not. But then, the automatic one the doctors strapped on had more errors than my cheapo drugstore one! Now I wish I had the wrist one because at least it's more portable. Maybe we could swap :) Somehow, I think the shipping would be more than the cost of a new one though.
Weney, sorry I forgot you already had a monitor. The brain went on vacation without me.
Yeah, I got the wrist one on sale pretty cheap. Figured I'd use it on the go, then had a rough patch and wasn't out very much. Now that I know how key BP is for me, I figure I might splurge on a "Cadillac" model rather than being frugal but haven't picked one yet. I like being able to download readings into computer... that helps. I had a "manual" one for a bit, if you get good that can be accurate... but it takes skill. I never got very good at it when I tried.
I do know that unlike the Tiger exhibit or the Dolphin shows like at other casinos... we will have these guys on display... not as exciting as Siegfried & Roy but more "to theme":
OMG! That is hilarious! That's how I feel sometimes. HAHAHA.
My husband says the wrist monitors sre not accurate at all. The monitors that go around our chest are the best bet. I have even heard they can alert one if there is an irregular heart beat. I believe they are the ones you can download onto your computer.
Also, I want to thank you guys. I have learned more in the past few days than I have in the last year and a half. My husband thanks you, too. He says there is an an improvement in my mood from just being more informed and knowing I'm not alone.
For our casino...Salt water taffy as hordourves(sp?), cool water jacuzzis, and Tilt Tables for 21 tables...
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