Pulse High, Bp Low - Very Weird Activity

[PupLoverKV]

Howdy,

I was recently diagnosed in September with POTS and wanted to chat here before I see my doctor Thursday. My doctor is great, she suffers from OH and is very knowledgeable with a lot of empathy, but I wanted to see if there is anything else you guys can thinking of which I should be asking her about medically. Or would have insights into some of the questions below (obviously, you aren't doctors... but if you have any experience yourselves).

I have taken Concerta for ~10 years to treat ADHD. My understanding is that this drug can help POTS for some people. After diagnosis via tilt table test on 9/2 we started me on Midodrine 5mg 3x daily, continuing the Concerta. Two weeks later we increased the Midodrine to 7.5mg 3x daily, still continuing the Concerta. Since 9/18 (when we upped the Midodrine):

1. BP slowly rose for 1 1/2 weeks (from about 90/60 to 100/70 - averages), HR variation stayed the same as when I was first diagnosed

2. BP quickly spiked quickly over the course of 3 days (9/30 - 10/2) hovering between 120-137/65-75, HR variation dramatically increased by about 80%

3. BP then started dropping again, it hovered around 110/75 for a week and has been in the neighborhood of 100/70 the past few days - I assume still falling. My HR variability is better than it was during those 3 days of craziness, but still about 65% larger swings than when I was diagnosed and a ~15bpm higher resting heart rate. The past 3 days there has been this weird pain under my left breast implant - so technically chest pain I guess but not alarming enough that it's motivated me to go to the ER.

I saw a cardiologist and he does not see anything "structurally" wrong with the heart - just would like me to do a halter monitor for 48 hours to confirm. My headaches have been consistent and daily through the whole thing and the frequency of my syncope has not increased despite the BP/HR variability.

Now for my questions (feel free to skip here if TL;DR):

• Has midodrine made anyone's POTS worse? I can't find a single example when searching the 'net. So not sure if "the POTS" is getting worse or if the medicine is making it.
• Has anyone's body gotten used to the midodrine? I thought part of it was that it is supposed to help BP. It helped, overshot, and seems to be dropping now despite the medicine and following all of my instructions (high salt, small meals, compression stockings).
• Has anyone had a problem with very high pulse that they were able to fix without a beta blocker? The cardiologist says my BP is way too low for that to even be an option.
• I literally have no clue when I should go to the ER if this does not get better. At it's worst my heart rate gets up to nearly 140bpm right now. If the chest pain was worse OR more in the center I would go - I just don't know when to go otherwise. My fear is that the ER won't know what to do with me. I really can't afford an ER copay with my current disability pay just to be told its's "anxiety" or a "migraine" like what happened before my diagnosis. I just don't know how to know when it's a "problem" that requires a visit.

Thank you so much for your help. I'm a little lost still since this all is so new to me. I've never been sick in a way that isn't getting better until this POTS.

[Guest ANCY]

Hello puplover,

Sorry that you are having to face this, hope you find this forum helpful as I did when newly diagnosed.

I am on 10 MG midodrine 5 x a day have been on and off it a couple times in the last 4 years. It does help raise my blood pressure average generally speaking but I still get huge variables especially upon postural changes. My blood pressure also still averages differently on abut a weekly bases and is influenced by water and salt intake and also activity level. One week my average could be 120/70 and the next week average 80/50 and then back up the next to 115/60.

I am also on 0.15 MG florinef 3 x a day which also helps maintain a higher bp.

There can be effects from the simultaneous use of different drugs and herbalance remedies which may be something to talk with your dr about. I have not noticed midodrine to increase my heart rate but don't know if it's possibly interacting with something else you are taking? Midodrine has a very short half life so in theory it should only be in your system for about 4 hours, does your heart rate come down at all after that period?

My cardiologist is trying me on Corlanor to lower my heart rate (resting ECG at the time was 120), which is variable and sometimes exceeds 200 bpm. Like you, beta blockers are not an option due to low bp. Corlanor I guess works differently than beta blockers. It is only approved by the FDA for heart failure but my dr wanted to try it anyway. It has helped lower my heart rate average and the frequency of the 200+ spikes has also decreased. Another perk is that having a more steady heart rate seems to have also helped somewhat steady my blood pressure swings. I have not been on Corlanor very long so still viewing results with some skepticism.

Hope your appointment is produtive, what a blessing to have an empathetic dr! God bless.

[PupLoverKV]

Hello puplover,

Sorry that you are having to face this, hope you find this forum helpful as I did when newly diagnosed.

I am on 10 MG midodrine 5 x a day have been on and off it a couple times in the last 4 years. It does help raise my blood pressure average generally speaking but I still get huge variables especially upon postural changes. My blood pressure also still averages differently on abut a weekly bases and is influenced by water and salt intake and also activity level. One week my average could be 120/70 and the next week average 80/50 and then back up the next to 115/60.

I am also on 0.15 MG florinef 3 x a day which also helps maintain a higher bp.

There can be effects from the simultaneous use of different drugs and herbalance remedies which may be something to talk with your dr about. I have not noticed midodrine to increase my heart rate but don't know if it's possibly interacting with something else you are taking? Midodrine has a very short half life so in theory it should only be in your system for about 4 hours, does your heart rate come down at all after that period?

My cardiologist is trying me on Corlanor to lower my heart rate (resting ECG at the time was 120), which is variable and sometimes exceeds 200 bpm. Like you, beta blockers are not an option due to low bp. Corlanor I guess works differently than beta blockers. It is only approved by the FDA for heart failure but my dr wanted to try it anyway. It has helped lower my heart rate average and the frequency of the 200+ spikes has also decreased. Another perk is that having a more steady heart rate seems to have also helped somewhat steady my blood pressure swings. I have not been on Corlanor very long so still viewing results with some skepticism.

Hope your appointment is produtive, what a blessing to have an empathetic dr! God bless.

Thank you! I will look into Corlanor and ask my doctor if it's something we can consider - mine may not be high enough though since it's still quite a bit lower than yours. That's a bummer that your BP is that variable as well. I guess perhaps this is something I will need to get used to. I haven't noticed a change in my HR after the midodrine wears off but can do a few more measurements to check it over the next couple of days.

Good thought on whether it might be interacting. I think the plan was that it shouldn't affect my other meds, but it may be worth a check. Between the Concerta, Midodrine, Gapapentin, Zofran and Protonix (also on Yasmin for bc) I guess I hadn't really bumped them up against each other since I noticed the change with the change in Midodrine amounts and assumed it must be that.

Just reading about your numbers makes me feel for you. I can't even imagine how badly you must be feeling. I really hope you can find your way to good health soon. Thanks again for taking the time to respond, it means a lot to me.

[SarahA33]

Hi Puplover,

Welcome to DINET. A few things that I thought you may want to talk to your doctor about. Midodrine is known to cause headaches, and I think can worsen a pre-existing condition of migraine. I experienced this in the beginning, as I suffer from chronic migraine. I am only on midodrine as a prn. I wish I had something to offer with the BP and HR fluctuations, my guess would be that it's your body getting used to the vasoconstriction (tightening of the blood vessels). We're all so different though. I hope you get this all sorted out soon, it seems like you are on the right path and that you have a doctor willing to help. Having someone in your corner who will advocate for you made a big difference for me.

I noticed you are on Yasmin for BC.. in some pots patients that can be contraindicated. Here is an article by Dr. Raj, if you scroll down to the pharmacological treatment of pots there is an explanation there: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/

[Starburst0128]

I'm on midodrine 5mg 3x day and my bp fluctuates daily but I think it will in all individuals even healthy ones. Time of day, what we eat etc. also your menstrual cycle plays a huge part in it as well. I recently (3 months) went back on the depo shot and it has changed the ball game completely for me. I was ending up in the ER every 3 weeks because of my heart rate and bp. Maybe you could speak to your obgyn about a different birth control. Crazy how much our hormones affect bp and heart rate. I know with me my heart rate is always higher when I'm very anxious and really focusing on my pots. That's great you found a doctor who can truly understand what you are going through!!!! I am starting the Levine protocol in the next few weeks and hoping that is my game changer! I hope you get some more answers and start feeling better soon.

[PupLoverKV]

I don't think it's the Yasmin. I've been on it for 5 years now. The only time I had an issue was when my old doctor accidentally prescribed Yaz instead - my hair started thinning in just one month. Before going on the Yasmin we tried every BC under the sun on me - most had very negative side effects. I used to have Depo Provera which I was very happy with - but I was on it for 6 years straight and no one will prescribe it to me any more. I can't be without BC because I lose too much blood otherwise (gross, I know, sorry)... will ask about BC but realistically, changing it would only make things much worse.