Achilles2323 Posted January 16, 2013 Report Share Posted January 16, 2013 what is a dangerous or low heart rate thats not safe?i started new meds today and told my doctor i dont feel 2 wellmy heart rate has been 49-59 the whole dayi was on atenol klonopin and doxazosin for a weekjust started midodrine today and my heart rate has been lowernot sure what 2 make of this Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted January 16, 2013 Report Share Posted January 16, 2013 What was your normal BP? When do you take your next dose of med?I know my doc told me @ night I can drop down that low. If it was Myself. I would do a set of postural signs and call them in and let my doc know what was going on before I took another dose of medication. You might be just extra sensitive to whatever you're taking. I like to play on the safe side. Let us know how you are. Many of us are med sensitive. Good Luck! Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 16, 2013 Author Report Share Posted January 16, 2013 its my heart rate that is lower then usual ....usually 60-75know its 48-59 on this new medand i feel colder then usualusually coldbut not like thisi emailed him and he said to keep taking it.it was my first dose ever of midodrine Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 16, 2013 Report Share Posted January 16, 2013 Ach, before starting meds what were your bp/hr both standing and supine. I've been reading your posts and trying to understand what your symptoms have been and why they diagnosed you with pots.All pots is, is a rise in heart rate on standing. If you normal is in the 60-70's when standing you wouldn't have pots.My resting hr can be in the 50's when supine or resting. It was going into the 100's before treatment. My swings are not as wide now.What are medical symptoms are you having? Anything at all that you think is not normal? Not just your bp/hr.Knowing these things would give a clearer picture on whats going on with you and maybe what direction you should go in to rule out underlying causes. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 16, 2013 Author Report Share Posted January 16, 2013 so when i was in the hospital for a weekmy heart rate went from 80 to 160 just from standing up so they did a lot of blood and urine test and by exclusion they said i have POTSthey could not find ne thing else wrongsince then i was put on atenlol klonopin and doxazosin and it has kept my heart rate under control i dont have that super high heart rate when standing'they just started me in midodrine because i was very lightheaded weak and dizzyi just took my 2nd dose of midodrine but after my first dose my heart rate was 45-59 my heart rate on the meds usually was 55-75 but i have not seen that all day the upper endso as of knowi take atenlol 1x a daydoxazosin 1x a daymidodrine 2x a dayklonopin 2 x a dayall effect heart rate and bpi have not seen this low heart rate / bp in my life Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 16, 2013 Author Report Share Posted January 16, 2013 since the midodrine only complaint is lower heart rate and feeling very cold/chills Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 16, 2013 Report Share Posted January 16, 2013 Okay, so your only symptom was the excessive rise in hr. Your blood pressure didn't change at all?My experience with atenenol was that it stayed in my body to long and I was waking with brady and hypotension. I also wonder why you are on two bp meds, as both doxazosin and atenenol lower hr/bp. Klonopin is a benzo and can be addictive or become tolerated requiring more and more of it. It is sometimes used in pots, but is an anxiety drug. In my opinion it may not be the best choice, many here have had trouble coming off of it.Did they start you on one and it wasn't enough so they added the other? Also have you gotten in the habit of taking your waking bp/hr as soon as you wake up while still supine and not moving much. This will be your baseline bp/hr that you would compare your standing/active bp/hr to. It is important to know these things.Also do you know exactly what they ruled out during your hospital stay? Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 They essentially indicate that you have no evidence of secondary causes of hypertension. Specifically, these tests looked for hypothyroidism, hyperthyroidism, Cushing’s disease, hyperaldosteronism, pheochromocytoma and renal artery stenosis. all ruled outand probably more but i am not sure they did a lot of urine and blood test there24 hr urine test as well Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 around 4 different doctors told me it was POTSi am not sure why i am on the meds i am on but i am just following doctors ordersbp rite know sitting 120/82 heart rate 45 Quote Link to comment Share on other sites More sharing options...
khaarina Posted January 17, 2013 Report Share Posted January 17, 2013 How much Midodrine are you taking? Midodrine can cause bradycardia, especially if you are on too high a dose too soon. It happened to me when I tried going from 2.5mg to 5mg. Also, Midodrine wears off after 3-4 hours. If you are only taking it twice a day, that only gives you 6-8 hours effectiveness. Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 17, 2013 Report Share Posted January 17, 2013 Playing with your fonts and colors I see! Okay well it's good they ruled those out. Those would be endocrine causes for your symptoms. Did they also rule out cardiovascular causes. You had a ttt and other cardiovascular tests?In another post you mentioned you had significant arm/leg pain. One of the most common causes of pots is autonomic neuropathy, which is caused by damage to your small fiber nerves. Damage to these nerves can also cause pain. The test to determine if you have this is a skin biopsy for small fiber and/or a qsart test. Both if possible. The blood vessels have sf nerves that constrict the blood vessels upon standing. If the sfn nerves are damaged then the blood pools in the lower half of the body and causes a rise in heart rate to try to get the blood back up the brain.If you have sfn, a common compensatory reaction is a rise in catecholamines, usually norepinephrine. This is the body's back up system to constrict the blood vessels. However, if you have this reaction you probably also have high blood pressure on standing. If you don't have this reaction you may be hypotensive on standing.Are you following me? Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 atenlol 12.5 1x day atenlol 1150ammido 2.5 2x a day mido 1130 am mido 6pmdoxazosin .5 1x a day doxi11pmklonopin .25 2x a day klono 3pm klono 1130pmkeep in mind i am very very sensitive to meds Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 also Dear Anthony: I reviewed your tests from LIJ and will summarize them below: Thyroid stimulating hormone (TSH) 1.08 uIU/ml (normal 0.27-4.20)Plasma rennin activity 0.46 ng/mL/hr (normal 0.15-2.33)Serum aldosterone 2.7 ng/dL (normal 0.0-30)Serum cortisol 9.3 ug/dL (normal 6.2-19.4)Random urine metanephrine / creatinine 147 mcg/g Cr (normal 29-158)Random urine normetanephrine / creat. 119 mcg/g Cr (normal 53-190))Random urine total metanephrine / creat. 266 mcg/g Cr (normal 96-286)24 Hr urine metanephrine 291 mcg/24 (normal 44-261; normal with hypertension < 400)24 Hr urine normetanephrine 169 mcg/24 (normal 103-390; normal with hypertension < 900)24 Hr urine total metanephrine 460 mcg/24 (normal 190-583; normal with hypertension < 1300)Urine vanillylmandelic acid 4.5 mg/24 Hr (normal < 8) Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 i am sure they ran other test as well so they really think it was just POTSthey could not find anything else as i was in the hospital for 1 weeknot sure what else 2 do or check for Quote Link to comment Share on other sites More sharing options...
arizona girl Posted January 17, 2013 Report Share Posted January 17, 2013 If you reread my last post there were several other areas to consider. The test that you posted were looking at your endocrine system, and is not typically the first round of testing for pots. Usually, they start with cardiovascular testing. You'd know if you had cardiovascular tests. Then there are a wide range of neurological tests as well.Just because you were in the hosptial a week doesn't mean that the hospital you were at knew the right tests to do. If you didn't have a ttt, ekg, a stress test on the treadmill, or ultrasounds of your heart, you did not get a cardio workup. If they did not do mri's or ct's you most likely did not get a neuro work up.In my experience a diagnosis of pots, is the first step and requires further investigation to look for cause. More often then not there is an underlying cause. Right now they are treating your symptoms, not your cause. If cause can be determined then treatment will be directed at cause and your symptoms will either go away or improve. You may still need symptom treatment however depending on the damage that was done that may not be corrected.As far as the meds, you are right on, most of us are sensitive to meds and need to start with baby doses. Also many of us only start one medicine at a time so we can determine which med causes what improvements and side effects. I'm kind of surprised that your were put on that combination at the same time. Trust yourself, not the doctors, you know how you are feeling and if something is working or not. Quote Link to comment Share on other sites More sharing options...
khaarina Posted January 17, 2013 Report Share Posted January 17, 2013 I agree with Arizona girl. If you feel the meds are too much, you should definitely make that clear to your doctor. Don't let him blow you off, docs can be good at that. If he still doesn't listen, get a second opinion. I've seen 20 something docs (including specialists) since I got sick 2 years ago. Many of them knew very little about dysautonomia and some had never even heard of it. Unfortunately for us, finding the right doc is hit or miss. I also agree that starting on several meds at once can really complicate things when trying to figure out which med helps what symptoms. If your doctor hasn't explained exactly what each med is supposed to do for you, you may want to ask him that. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 they did do ekg and ultrasounds on my heartsaid it was finei had a poor mans ttt i layed down sat up and stood up and they checked my bp pulse and had me monitored the whole timethey did ct scan about 2 months ago before i had any symptoms of pots Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 yea he told me midodrine would help with my lightheadedness Quote Link to comment Share on other sites More sharing options...
megsmit6 Posted January 17, 2013 Report Share Posted January 17, 2013 I work in the ER and a dangerous heart rate is different for everyone. You have to take in account meds and dx. My cardiologist loved my heart rate to be in the 50s. But of course that is low for me but 50s is my new normal since being dianosed with POTS in July 2012. He just had to adjust my beta blocker so today I have been 49 or so but it will be like that till my body adjusts. Give it time. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 ok i will give it time and c wut happens Quote Link to comment Share on other sites More sharing options...
Katybug Posted January 17, 2013 Report Share Posted January 17, 2013 My pots neuro and my cardio are very strict about only changing one thing at a time whether that's meds, diet, vitamins so we know exactly what the results are, good or bad.On another note, have they tested you for Lyme and Lyme coindections such as Babesia, Erlichia, Bartonella (there are others too) . If I remember correctly you had a sudden onset that they thought may have been viral but Lyme /coinfections can be a culprit. I don't know if you spend time outdoors or not that you could have been exposed to a tick but only 50% of people ever get the bull's eye rash and often people don't know they were ever bitten. Even a walk in Central Park is exposure. Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 this is what i wanted to look for -Viral or Bacterial Infection-Electrolyte Imbalance - BMP-Lyme Dse - IGM & IGG -Celic Disease - IGM-Tumors -Food Allergies-IGE-Parasites-Nutritional Deficiencies - Hair Analysis -Cancer-Iron Levels /serum iron and Ferritin Levels /d3 levels/Potassium / Calcium / Magnesium Levels /Vitamin B12 - CHECK ALL-GERD-burning throat and hard to swallow - TEST-STD-just to be sure, check. - TEST-MONO ACTIVE-possible cause?-MONOSPOT / EBV-Hyperadrenergic state-muscle Pump Defects-Autonomice neuropathy-Mast cell Activation Disorder-Blood Clot /- D-dimer / ultrasound-Autoimmune Disease-Achr auto antibodies-Net deficiency -Multiple Sclerosis -Fixing an aorta problem-Pelvic vein congestion-Beta adernergic sensitivity but my doctors seem to think my pots are not from any of these.should i go to another doctor? Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 17, 2013 Report Share Posted January 17, 2013 Anthony,That is one long "wish list" of tests for sure I am not the right person to advise you on the medications you are on, but you have to realize that there is no magic cure for POTS or we'd all be taking it I went through a process of trial and error for more than a year, and I'm still not 100% happy with my current treatment plan, so I'm working with my dr and trying to adjust it. Now, just because someone reports a certain side effect, doesn't mean you'll have the same reaction. I might have said this before, but you won't know until you've tried it...unfortunately. Moreover, it usually takes a while for your body to adjust to a new medication, so sometimes it’s worth hanging in to see if you really benefit from a drug or if the side effects outweigh the benefits. When it comes to doses, it’s been said before, a lot of us are sensitive to large doses, and generally speaking, as a rule of thumb it's probably best to start low and gradually build up from there... I learned this the hard way, I actually did the opposite - I started high, got hit with major side effects and then lowered the amount. We live and learn. Back to your “wish list” - I've read about people have had POTS/dysautonomia for a long time and haven't been able to find the reason for their onset, or the cause of their problems but with proper treatment they are living full, productive lives. For some that means learning to manage the symptoms - be it by taking meds, or by using alternative measures (proper hydration, adjusting the salt intake, use of compression garments, exercising, herbal supplements, acupuncture, biofeedback, meditation, breathing exercises etc). You've started a thread about possible causes for POTS the other day, and I guess you noticed that there are so many possible causes, just like I'm sure there are conditions that can mimic POTS but turn out to be something else. Figuring out what caused your POTS may take a while, and I'm not trying to disappoint you but it may be that you won't ever find the cause. That doesn’t mean you can’t or won't get better.Please don't take this the wrong way but it looks to me that you have to first of all find "a" doctor that specializes in POTS/dysautonomia that can properly diagnose you via a real TTT (not the poor man's version). Also - like arizona girl suggested, there are certain tests that you should have for a proper diagnosis. Those tests are designed to rule out other conditions that might be the cause of your symptoms. By the looks of it, you had some of those tests already, now you just need a dr to put everything together and start you on a treatment plan that addresses your symptoms and if possible the root cause of your problems - if that can be found. Keep posting here; as I’m sure you noticed, there are a lot of people willing to help and share their experiences with you, but none of us can replace a good dr – either one that is specialized in POTS already, or one that is willing to learn.Best of luck,Alex Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 i really appreacite all the help on hereits awesome its so hard for me because i have a wedding in 8 months that needed to be payed off but i lost my 2 jobs because i can barely get out without feeling lightheaded or dizzyi just wish it would go awaychristmas day i was perfect and healthy and know i cant even do muchi just dont understandi am gonna start a physical therapy soon i am praying thats gonna helpi have an appointment with a POTS specialist next monthhe was bookedhis name is DR Wiemer Quote Link to comment Share on other sites More sharing options...
Achilles2323 Posted January 17, 2013 Author Report Share Posted January 17, 2013 has any 1 ever had Brain SPECT Imaging??? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.