Has Any Med/supp Decreased The Amount Your Hr Increases From Standing?

[Lethargic Smiles]

I am wondering if anyone has had an experience with a medication or supplement or treatment approach where it didn't just lower the standing heart rate, it also decreased the beat per minute increase comparing supine with standing. What I seem to be experiencing is medications can lower my heart rate overall, but the amount my heart rate jumps is still about the same. I'd love to hear your experiences as well as any side effects you experienced. I know there's many side effects I'd put up with if I could stand longer and/or exercise! If you just want to share your experience with me and aren't interested in my own experience (no offense taken), just skip over the rest of this post.

I haven't gone without heart rate/blood pressure medications in awhile. Without meds I'd say my normal heart rate measurements are:

• Supine heart rate: 70s
• Sitting up with feet propped up: 80ish
• Sitting up, feet on the floor: 90-100
• Standing: It depends but I'll say upper 120s/lower 130s.

Propanolol

I took Propanolol 10mg 2-3x/day for about a year up until a few days ago. Here was my experience on a "normal" health day about 2 hours after taking the medication.

• Supine heart rate: lower 60s
• Sitting up with feet propped up: upper 60s/lower 70s
• Sitting up, feet on the floor: upper 70s-90
• Standing: 110-130

Pros: It is very fast acting which is wonderful if I suddenly realize I need to take some extra. It does lower my overall average heart rate.

Cons: As far as side effects, it did lower my blood pressure which is a given with beta blockers. I take Midodrine for hypotension and I know I could be on a lower dose if I wasn't taking blood pressure lowering medicines. I also think it makes my fatigue a bit worse. I could really feel it wearing off which I never liked and on "bad" days, it was like I'd taken nothing and my heart rate would act how it does without meds.

Clonidine
It's early in the game for me to draw conclusions, but I am still sharing as it is this experience that lead me to post this! I'm currently trying out Clonidine and this is day 3. I'm starting out at .1mg 2x/day. and again, based on heart rate 2 hours after taking the medication. I know many recommend the patch, but I've got to get through figuring out a dose with the pill before my doctor is comfortable with a patch.

• Supine heart rate: upper 50s/lower 60s
• Sitting up with feet propped up: lower 60s
• Sitting up, feet on the floor: upper 80s-90s
• Standing: 120-165

Pros: I don't feel a crash like I did from Propanolol because it is longer acting. It doesn't worsen my fatigue at all. It helps with my resting heart rate.

Cons: My standing heart rate is going up to 165 which, in my experience, it doesn't do without medication. I have been having some pressure in my head since Day 1, and as of Day 3. It is tolerable most of the day, but toward the end, it is not. I feel like I can't think fluidly and it is really bothering me since I already have brain fog and fatigue. My mouth is quite dry, I thought I knew dry mouth from other meds, but wow! Yesterday, my blood pressure tanked to 87/67 which I correct with some Midodrine.

CoQ10

I took this because some people reported benefits (cannot remember dose). It didn't lower my blood pressure which for me, is a good thing. I didn't experience any of them and felt more fatigued than normal.

Exercise
Per Mayo Clinic's advice, I did the recumbent bike and weight machines 5-6 times per week. My goal was to get to 45 minutes of exercise, but I never got there. I started with 5-10 minutes and worked my way up to around 15 on the bike and 20-25 of weights.

Pros: It is a non-medication route. I did benefit from gaining back some muscle I'd lost.

Cons: I did this consistently for 4 months with no changes in heart rate measurements. I actually started the beta blocker during this time because the tachycardia got too much to tolerate. I can really only do one thing a day, so exercise was my thing for months without any benefit to my condition that I could see. For me, this required traveling to a gym (since I was doing exercise exactly as Mayo suggested), so some days, I had to wait until someone could drive me if I wasn't up to driving.

I know many people try several drugs/approaches before finding the right one for them, but it sure is frustrating! Maybe an off label use of a medication where a side effect is frequently bradycardia that could benefit those of us without high blood pressure and just want control of our heart rate. I wish Ivabradine was available in the US!! At least then, even if I still got the POTS spike in heart rate, I wouldn't be taken a medication that lowers my blood pressure and taking another medication to increase it.

[Guest Alex]

Mestinon does for me exactly what you're looking for Jackie. It rarely affects my supine HR yet it lowers my standing HR. The effect is dose dependent and doesn't last too long (a couple of hours) as the med has a short half life.

Let me know if you'd like more details about it and I'll get back to you - I have a nasty headache now

Also you can search for some of my older posts on this - I included a "my understanding of how it works" paragraph somewhere and a long list of possible side effects.

Alex

[Lethargic Smiles]

I'd love to learn more about your experience with it. If you can get back to me, when you're feeling up to it, on things like how long before you saw benefit, dosing, and any side effects, that would be wonderful, but no pressure! I will definitely do some researching when I am feeling up to it. I hope your headache goes away.

[Guest Alex]

Jackie,

my mestinon “story”. I actually take neostigmine, which is a med from the same class as mestinon. Neostigmine comes in 15 mg pills so it's easier for me to take smaller doses - mestinon comes as a 60 mg pill.

My understanding of how mestinon works: it inhibits the production of acetylcholinesterase (an enzyme involved in the breaking down of acetylcholine) thus increasing the availability of acetylcholine - a neurotransmitter used by the autonomic ganglia (the cluster of cells transmitting signals from the CNS to the peripheral nervous system). These signals are supposed to be minimal when you’re lying down, but increase significantly with orthostatic stress. It's believed that mestinon is working by lowering the HR and increasing the BP "as needed" which for a POTS person would be when standing, or performing different types of physical activities. At the same time acetylcholine is supposed to keep the parasympathetic nervous system (the rest and digest one) from going into withdrawal and from allowing the sympathetic nervous system (fight and flight) to take over during orthostatic stress.

My first impact with the med - about ½ hour after I took my first dose (45 mg back then) I got really hot, I started sweating and I felt a weird kind of energy – as if I were high. Also my vision got blurry, my eyes were all teary. Also my nose was running and I was literally drooling (I had so much saliva). My muscles were twitching (it was a subtle feeling though) and my stomach was growling pretty badly. My dr or my pharmacist warned me about all those so I knew it was OK. The subsequent doses didn't have the exact same impact but were along the same lines. In time I learned that I should have some food in my stomach if I want to avoid nasty painful stomach and/or intestinal cramps. By the way, my intestinal transit has never been a problem since I started taking this med. Also, I can almost feel when it wears out as my HR tends to pick up (it has a relatively short half-life, so whatever benefits I have last for 3-4 hours. The side effects (if any) are also short lived and I actually consider that as a plus. In time all my side effects have gone, but I have also settled for a lower dose of mestinon – I’m now taking only 30 mg twice a day and it’s my only daily POTS med.

The one thing that I’ve dealt with a couple of times since I started mestinon almost 2 years ago is something called a cholinergic crisis – you can read more about it here

http://forums.dinet.org/index.php?/topic/23954-cholinergic-chrisis-from-mestinon-pyridostigmine/?hl=mestinon

Also, here you have some articles on mestinon

http://www.stars-us.org/files/file/Mestinon%20UT%20final.pdf

http://pediatrics.aappublications.org/content/118/5/e1563.full.html

http://archneur.jamanetwork.com/article.aspx?articleid=791187

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2536749/?tool=pmcentrez

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2959129/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2542941/

Please let me know if you have more specific questions and I’ll be more than happy to help you if I can.

Alex

[corina]

Hi Jackie, for me it's the SSRI that does the trick. I tried 10mg which worked though just not enough, it kept my standing hr in the 90's where as 20mg keep's it in 70's. Tapering down made my standing hr come up again.

For what it;s worth, I've been on mestinon too which worked wonders on keeping me warm (for just an hour or 4). In Europe (I'm in the Netherlands) I started off with 10mg pills which made it easy to build up (we have 60mg's too). Good luck on figgering out what could possibly work for you!

[yogini]

High HR was my worst symptom. Paxil helped the best, but I also tried flornief, midodrine and atenolol and they all helped to some degree. What is happening to your BP in general and also when you are standing? Do you wear compression hose?

Sometimes it's the combination of meds does the trick. I would not assume that reducing your Beta will mean you can reduce your midodrine. Medicines act together in complex ways, and maybe you just need the combination of 2 meds to feel better - this the case for lots of POTS patients.

You can also try other beta blockers; another one might work better for you. I took atenolol for years. The fatigue is the worst feature, but I got used to it over time, and also learned to take it at night so that I was tired at night. A great side effect for someone who can't sleep! Your doctor can advise on what is best.

[looneymom]

Hi Jackie,

My son was on the clonidine but it dropped his heart rate too low. He takes the extended release clonidine which works better for him. Might see it you could try this. It stops working after 8 hours.

Rachel

[Lethargic Smiles]

Oh my goodness! I'm so annoyed, I typed out a really long response to everyone and my computer just shut off and lost it. Computers have no empathy for our dysautonomia suffering.

Thanks everyone for your ideas and I'd love to hear more people's experiences. We're all so different, and there's so many things out there being tried on us to see if it helps.

Alex -- Thank you for taking the time to share your story and thank you for all of those links. I plan to look at every single one of them and I really appreciate the energy you saved me by sparing me hunting down articles and discussions myself! If I'm lucky and it works for me as it does for you, I'd be so thrilled!! I'm happy to know about the potential initial side effects ahead of time because they may freak me out a bit otherwise. I'll look through those first and then see if I have questions.

Corina -- I wonder if it making you warm has anything to do with better circulation? If it does, maybe it'll allow me to achieve my goal hand temperature really fast when I do biofeedback! If it made me toes get some circulation to them and warm up, I'd be stunned. I tried a few SSRIs and SNRIs and always felt like a zombie, but that is amazing they help you so much. It was about 4 years ago I last tried them and I wasn't as symptomatic as I am now, so perhaps I should consider trying them again.

Looney Mom -- Thanks for the tip on the XR dosing. I'm concerned about if we'll be able to increase my dose enough to help my standing heart rate since my supine heart rate last night was 50. I felt fine at that rate, but I don't know about too much lower because I don't think I've ever experienced it. My great hope was to be able to eventually get to wearing a patch so I'd have a constant supply coming in.

Yogini -- Thanks for your thought out response and sharing your knowledge. My heart rate is what I believe keeps me from being able to be upright too long without getting extremely fatigued. I also think the ANS response to my heart rate, triggers my immune system. As a result, if I dare be up too long without careful planning, I wind up in bed with all my immune symptoms (lymph node swelling/fever/worse than normal fatigue).

I'd say I feel best when my blood pressure is above 98/55 but below 115/75.

• My blood pressure all on its own without any medications used to roughly be 105/65 supine, 95-105/63-70 sitting up, feet on the floor, and 85-100/60-65 standing. Of course who knows what they'd be now that I've been medicated for over a year.
• With the beta blocker and midodrine, it tends to be 100-110/60-70 standing and 105-115/65-75 supine.
• Today is only day 4 of the Clonidine and I can tell my body is definitely still adjusting to the medication. Over the past 3 days, I had readings as low as 85 and as high as 125. I'm noticing the bottom number typically seems to be staying above 75 and below 81 which is higher than normal for me. Today, the readings seem more balanced than they have in the past 3 days with a sitting in the recliner with legs up reading of 110/76 and standing one of 101/72.

In my case, I do have to adjust Midodrine with my beta blocker although I know that's not true for everyone. If I don't and just take it as I normally would, I end up with hyper or hypo tension.

I used to wear compression stockings because my feet would feel heavy within seconds of standing and within a few minutes, start to turn dark red, then purple. Thanks to biofeedback providing me with improved circulation, my feet never feel heavy anymore and my blood pressure acts the same as it would if I had them on. They only start to show signs of pooling when I've had them down (not propped up) for a few hours. This hardly ever happens because unfortunately, my level of fatigue and my immune systems keeps me at rest. I wore them for about 16 months (thigh high) and do not miss them one bit. They were very helpful and I recommend them, but I'm so grateful I don't require them anymore.

I think you're right it may take a combination of medications and/or treatments to help me. At the moment, I'm not sure if the side effects of beta blockers in general (although I know not all are exactly the same) or Clonidine are worth it or would be beneficial in combination with other medications versus just not being taken at all. My resting pulse is lower, but that isn't what I'm seeking medication for. None of it is helping decrease the size of the heart rate jump or in decreasing the standing heart rate enough for me to notice any benefit. However, I know a tachycardic heart isn't as efficient, so maybe it is worth it for the 10 or so beat decrease I get some days. It's a tough call and we are all sort of like guinea pigs when it comes to figuring out what works and what doesn't!

[Lethargic Smiles]

Alex, I looked over all of those abstracts and downloaded a few of the full articles through my library. It seems like a drug I'd be crazy not to try it because, as you said, for some POTSies, it does exactly what I'm asking about. If it doesn't work, nothing lost and I can check another treatment option off the list! I'm going to compose an e-mail to my doctor and see what her thoughts are. She's pretty open and says, so long as it isn't something that'll kill me, she doesn't mind trying things if I don't mind enduring them.

I'm suspecting I am going to discontinue the Clonidine. Perhaps I will get back on my beta blocker for a bit and let my body rebalance prior to trying Mestinon. I wonder if I'd taper down the Propanolol as I increased Mestinon or what. I'll have to research that or maybe I can see what has worked for others with a bit of forum searching.

[andybonse]

Octreotide combined with Midodrine can lower the standing heart rate effectively than either drug alone and is a good therapy.

Your hyper response may be due to splanchnic pooling due to vasodilation in that area, if you have cold hands and feet this can also show me that the body is applying extra vasoconstriction to these areas due to lack of vasoconstriction at another area.

hope that helps!

[Guest Alex]

Jackie,

glad to hear you found some of that info interesting/helpful. I hope mestinon is going to help you.

Best of luck with your doctor, and know that I'm here for you, should you have more questions.

Also, it may not be a bad idea to attach some of the articles I posted above to the email you'll send to your dr - I bet you've already thought about that though.

Alex

[Cinderella]

this is interesting for me

I actually need something to lower my resting heart rate

Jackie, it looks like clonidine is lowering your resting heart rate but it also lowers your pressure which is not something I need

is clonidine a typical pots medication?

thankx

[SarahA33]

Jackie,

My heart rate lowered a great deal when taking the following medications 3 times a day at the same time: Midodrine, Ativan, Propanolol & Clonidine. Since they are all short acting medications, I've had a lot more success when splitting them up to 3 times a day.

I Start Mestinon this week in hopes of helping with my heart rate and thermoreg stuff. Hopefully your dr. will be on board!

It can be really frustrating when you follow all the advice of your doctors and take the medications they suggest and still not have the end result anticipated.

Take care -- Sarah

[Lethargic Smiles]

Sarah -- any updates/insights on the Mestinon?

My doctor is sort of dragging her feet on Mestinon. I've been awaiting her final decision for about 3 weeks now! I sent her tons of research, so I'm sure in the end she will let me try it. It is quite annoying to have to beg to try a medication when I'm not 100% convinced it is the answer, it is just something I want to try. Oh well though. I should appreciate the fact she isn't a doctor who just gives whatever medication is asked for.

I've been researching plants indigenous people in Amazon rainforests use. I came across one called "Muira Puama" which is most popular for its ability to increase libido and energy. Interestingly, I came across information that said it is potentially an acetylcholine inhibitor. It also is thought to heal nerves. I haven't crosschecked the summaries of research with the actual research articles, so I'm not getting too excited yet.-- I am not sure how reliable examine.com is. Here's the link: http://examine.com/supplements/Muira+puama/

[SarahA33]

Jackie,

I've gotten no where with it either.

any luck for you yet? Thanks for the link. Stay Well, Sarah

[davecom]

I've certainly read about Mestinon helping a lot of people with POTS. That said, there are certainly risks.

Anecdotally, my autonomic neurologist does not want to prescribe it because he has seen it cause some arrhythmias in past patients. Further, it has been implicated as a possible cause of Gulf War Syndrome. It was given to soldiers to protect them from chemical attacks during the Gulf War and some researchers believe it caused them to develop a debilitating disease known as Gulf War Syndrome.

[SarahA33]

Dave, I mean, I had posters and everything!

Sorry to hijack Jackie.

I know how much it's helped a lot of people and I really haven't heard about any negative side affects other than GI from those closest to me that have taken it. How much of hr increase do you get from supine to standing if you don't mind me asking?

[Lethargic Smiles]

I thought the Gulf War issue was from a combination of variables, not just Mestinon alone. I could be wrong though. I read a study on it awhile ago where they tried to create it in mice or rats and failed. That's the thing though, I'm not die heart "Mestinon will cure me and you're keeping it from me!!" I am not pressing for my doctor to prescribe it if she's not comfortable, I just want an answer one way or the other. I'm grateful for her not just saying no without researching first. I have tried medications that effect so many other neurotransmitter to varying degrees, but never acetylcholine. I want to give it a shot.

Sarah, sorry about your troubles! I will be sending positive energy your way. I don't consider threads to be "owned" by anyone, so hijack away. Plus, when I am researching threads, I am grateful for 1 thread with lots of thoughts/concerns/perspectives rather than 10 different threads to go through!

In the most recent measure I did, my heart rate is about 60-65 supine, 70 sitting up w feet propped, 80-100sitting with feet on floor, and 115-135 standing. It depends on the time of day and type of day. I was diagnosed as have sinus tachycardia and POTS.

Luckily I can badger my doctor via email. So once a week for the past 5 weeks, I inquire. In our latest exchange she said everything relevant she finds on Mestinon is inconclusive or she cannot access the articles that are relevant and asked if I could provide her the articles I found that made me want to try it. I sent them to her and she said she'd look over them over the next few days. It's been 5 days. Ill email her again Monday. I even offered for her to bill me for the time she spends researching this. Oh well!

[KareBear]

I was prescribed mestinon by the Mayo clinic in Rochester MN so they must believe its benefits outweigh the risks, at least I assume so. I guess I trust their judgement since they specialize in POTS.

[SarahA33]

Jackie.. from the start of this post a little while back, how are you feeling as of today? I've been wondering

Your sweet to send positive thoughts while you aren't feeling your best. I badger my doctors with emails all the time.. I doubt she'd agree to charge you..she's probably learning a great deal from this. What kind of dr are you following up with? Cant remember if your a mayo chick or not!

[kisekis]

sorry to barge in. but since its still on the topic (drug to decrease HR) and someone has posted here about SSRI id like to discuss about it.

does it have some risk of increasing HR/worsen tachy like other antidepressant? i heard it could caused heart rhytym prob/irregularity such as long Qt, AF, palp.

[Lethargic Smiles]

Kisekis -- I've never benefited from an SSRI or a SNRI I felt like a zombie, but otherwise, no worse. Wellbutrin sort of helped with my energy, but caused hair loss (my sister had the same symptom). It is quite unique as an antidepressant in what neurotransmitters it works on and typically is used alongside a SSRI, but in my case we used it alone. I found it increased my restin heart rate a little, but it didn't increase how much my heart rate changed in response to posture changes. I now take Rhodiola Rosea instead. Maybe others can chime in with their experiences.

MedicGirl & Sarah -- I went to Rochester Mayo in August 2012. MedicGirl, when did you go? At that time, they didn't recommend Mestinon. My GP is the one who is currently helping me manage medications and IV fluids and the like, mostly based off of the advice from Mayo (I call as needed) and journal articles. Maybe I should call Mayo and get their stamp of approval on Mestinon so my GP will feel comfortable. She just e-mailed my saying she'd be more comfortable first trying to increase my beta blocker because of the negative effects of too much acetylcholine. Much to my frustration, one of her reasons is most of the research is on post-viral POTS. Uhhmmm, hello? Mine was triggered by mono! I know she's just having a mind blank, and is probably thinking of how my sister had it as well, but it is frustrating!

Sarah, I've been feeling about the same. Thanks for asking! How about you? This week I've been starting my experiment with some not too well known bark teas from the rainforest that have varying properties such as anti-viral/bacterial/parasitic/fungal and blood cleansers. They taste really gross, but I definitely have some sort of immune issue going on that needs tackled and this is an approach I haven't tried. From what I understands, the teas often offer benefits the ground up, encapsulated bark does not. My Muira Puama should be here soon which I've mentioned as possible acetylcholine inhibitor. I've also started an herbal supplement commonly referred to as "Brahmi". It is known for boosting memory (although it hasn't been empirically studied for more than 3 weeks at a time) and in some, it decreases heart rate, so I thought why not? It takes a few weeks to see any benefit, and many report it taking up to 6 weeks to see full benefit. I'm monitoring my blood pressure closely while I do these experiments as I know many herbs can effect blood pressure. It isn't like me to start so many new things at once, but I want to sneak attack the virus (possibly EBV) that I suspect has been living in my lymph nodes for the past 6 years all at once, not giving it time to adjust! I suspect whatever is living in my lymph nodes, causing them to swell, is what is weakening my ANS.

[KareBear]

Jackie, I went to Mayo in the beginning of 2008 so maybe they changed their protocol sense I went. My docs here had taken the recommendations from Mayo and followed that. They haven't changed the mestinon and florinef which were prescribed at Mayo, then all my other meds are in my local docs hands to change and adjust.

[lynnie22]

Thanks Jackie for bringing up this topic! I have exactly the same heart rates as you in all the positions. I have nothing much to add -- inderol in that low dosage which I was taking affected my HR to the same extent. I now have to lower the dosage or eliminate it after the AM dose because my BP after a brief soaring for two hours, plummets to the 60/40 range. Boy does that feel lousy!

I am really glad the biofeedback has helped you with circulation, and would love to hear more about these herbs and teas you are trying. Sounds interesting.

The only thing Mayo recently recommended to me was exercise, so we will see. They didn't recommend mestinon curiously.

[Lethargic Smiles]

MedicGirl -- Had you been taking heart medications prior to Mayo? I see Mayo is conducting a study on Mestinon, so maybe something about my case made them recommend beta blockers/Midodrine and not add in if those don't work, perhaps Mestinon. I wasn't on any blood pressure/heart rate medication prior to Mayo, so maybe they were just recommending the first line of defense?

Lynnie -- Its always neat to hear when someone has similar readings as you with how varied we all tend to be! How frustrating your blood pressure can't decide if it wants to be high or low. Personally, I require Midodrine but I don't have the high readings like you do. I do take more in the evening than in the morning. I think the Adderall I take in the mornings increases my BP a bit.

I will maybe make a new topic on the teas or maybe just link a blog post back here. I've gotten superstitious because whenever I say something is helping or even just that I think I understand how something effects my body... it's like the chronic illness gods get wind of it and strike down! So I'm keeping my mouth shut for at least another 3-4 weeks.