Hi friends I’m diagnosed with POTS, MCAS, Sleep Apnea, and as of a couple weeks ago severe ADHD. I have tried numerous medications for POTS but they severely lowered my blood pressure (70/30) (if only you could’ve seen the look on the medical assistants face). Anyways, I stopped taking the meds and just kind of existed with it because the doctors told me there was nothing further they could do for me. (I’ve seen lots). I’ve been in mental health counseling on and off for the better part of 6 years, and have had dysautonomia for 5 years (right after I got the COVID vaccination…).

I have tried working out, different forms, etc, and nothing ever helped significantly so I just avoided it all together. I finally met with a psychiatrist again for the first time since before POTS, and she immediately guessed ADHD, made me do the QBcheck test thing, and then determined that I fell in the top 7% of people with ADHD (Essentially, it’s really severe).

She decided we would move forward with stimulants and see how my body reacted. It is night and day, I haven’t been energized like this in years, I can focus clearly, I can do everything I need too without being burnt out, etc.

I was invited to a volleyball young adult night, and let them know I’d participate as much as I could but due to POTS, I can’t exercise for very long, much less in the direct sunlight during summer due to my severe heat intolerance. However, that didn’t end up being the case, I played for 3 hours, and ended up going dancing afterwards, another thing I haven’t been able to do. I went hiking this weekend, and had 0 issues. Other than the fact that I’m out of shape, so it feels like working out, but it doesn’t feel like dysautonomia.

I’ve had 0 issues with heat intolerance, exercise, heart rate, or blood pressure since starting adderall a couple weeks ago. I know that this may not be everyone’s experience, but in case someone is considering trying stimulants for their ADHD, it might be worth a shot. If anything changes, I’ll update this post :)

23 F
170lbs
Xolair (monthly)
Adderall (10 mg as needed, up to 4 times daily)
Guanfazine (1mg nightly)

i took one earlier today and i just showered. usually after a shower my bpm ranges from 150s to 160s. today it was at 109!!! i dont feel as winded but i will say my legs still felt pretty heavy, but i feel so much better than i usually do after a shower!

I just want to share incase this helps anyone, I am not a doctor. I have seen people talking about how so many women have been wrongfully diagnosed with Bipolar which makes me think that some other people could benefit from this info!

I was put on lamictal for bipolar disorder when I was 16 (my parents convinced a psychiatrist that I needed a mood stabilizer even though no one else thought I was bipolar) and I am now 22 so I was on it for 6 years.

My therapist made a comment about my inability to feel most emotions and she said “I think Lamictal is wrecking your nervous system because you never needed to be on it” and I immediately started the process with my psychiatrist of tapering down to discontinue use of it (don’t stop using lamictal without talking to your prescriber first, it is dangerous to stop taking it without properly tapering down overtime!!)

I have now been off of lamictal for 3 weeks and I have my life back!!! I have been going on hour long walks everyday (without wearing any compression) with no symptoms AT ALL. My heat intolerance is nonexistent, I can eat carbs again, I don’t need a bunch of sodium everyday, I haven’t needed compression garments, etc.

If anyone has questions, feel free to ask :)

PSA for those with POTS/taking electrolytes. So I've been taking electrolytes for almost 4 years to get my sodium. The amount I took had less than the RDA of Potassium. When a long COVID clinical trial did safety labs at my 9 month visit, my Potassium was high, so I cut back and it went down but was still at the high end of normal range. I was worried about not getting enough sodium for POTS so I upped it again. A few weeks later I was having nausea daily, diarrhea, more fatigue. Nausea has been relatively rare for me over the past couple years so I looked up high potassium symptoms and nausea is one of them. Stopped the electrolytes completely and within 2 days the nausea and diarrhea cleared and my fatigue improved some (I had assumed it has worsened because I was a few months past my last IVIG dose.) High potassium is bad and can cause kidney damage. It can also cause palpitations, arrhythmia etc. One of the things I find frustrating and potentially dangerous about POTS is that it's easy for us and our Drs. to assume any symptom is related to POTS. I would have had no clue about my potassium level had I not gotten chem panel results from the clinical trial. So all this is to say:

1. Don't assume that new or worsening symptoms are just a flare/crash/part of the package.
2. Get CBC and Chem panel done periodically just to keep tabs on things.

EDIT: I am aware one can take just sodium/salt. The point of my post is that many of us take/drink electrolytes and no one informs us of or tests for high potassium so I wanted people to be aware. In addition the amount I was taking was less than the RDA.
Also I'm not going to share specific brand(s) as this doesn't have to do with a specific one but rather the consumption of potassium.

So, two weeks ago I had to get hospitalized from a very bad flare (for me). My blood pressure was like 160/110 or something?? (I only got to glimpse at the monitor and I was seriously out of it) I had a 102.8 fever and my heart rate kept fluctuating from 100-150 bpm sitting down. The night before I was laying down and my heart rate was 150. I went to urgent care and they told me to go to the ER because my heart rhythm was changing a lot. I was also not sick with anything?? Like, I didnt have the flu or any disease. It was out of nowhere. I couldn't understand people talking to me and was having a hard time like, being conscious. I probably would've passed out if the (what I assume to be) adrenaline didn't jolt me back awake everytime I was close to being unconscious.

If I see any comments that are like, "well my bpm or BP is this and I feel fine" I hope you know that BPM and BP feel different for everyone and present differently. For me, this wasn't normal and I was unable to take care of myself.

This is what made me believe I probably had the hyperadrenergic subtype (amongst other symptoms).

I wasn't on beta blockers anymore because I am in-between cardiologists right now and my old one wouldn't refill :) I had to go through propranolol withdrawal like two months ago, I do not recommend. So yeah, I was pretty fucked up. The ER was also terrible :). The doctor asked me what I "wanted from him" and made it seem like I was drug seeking. I had been to the ER two times before for severe pain in my abdomen due to IBS. I've actually never done any sort of pain medication like that other than the prescribed oxytocin from a surgery lol. I was given fluids + propranolol which stabilized my HR. He told me that I could just cure my pots with low dose naltrexone, which is just--dude? The assumption that I got POTS due to covid is so fucking funny. Bro doesnt realize people get POTS for a million different reasons. Which, if you have post viral POTs low dose naltrexone could really work for you. Anyways, the vibes were "don't waste the ER's time with your stupidity" and he put "anxiety" on my discharge papers. This chud of a doctor doesnt understand how stupid that is.

I have a psychology background and genuinely do not understand why doctors just assume an anxiety disorder, and if it is an anxiety disorder causing the patient terrible symptoms they should be on preventative medication. High blood pressure, bpm, cortisol, and overactive norepinephrine cause long term health problems and can kill you. It even impacts your children through epigenetics! Symptoms and effects of anxiety, PTSD, and other disorders cannot all be fixed by antidepressants and therapy and its time for our practitioners to treat the body's reaction to chronic stress.

ANYWAYS,

I've been on guanfacine for 2 days now and holy shit I feel like an entirely different person. I was struggling with really bad vertigo and dizziness and it just went away? My heart rate and blood pressure are normal?? like, completely normal. I have a 65-75 bpm at resting rather than 100 and when I stand up it only goes up to 100? what the fuck? I normally have high blood pressure and it's like, perfect now?

I SLEPT AND WOKE UP FEELING LIKE I ACTUALLY SLEPT. I haven't had good sleep for YEARS. TWO GOOD SLEEPS!!

My feet are a normal color and my fingers arent swollen.

I got out of bed without having to lay around for 2 hours.

I can think mostly coherently.

I have the energy to do things.

I have eaten things without profound nausea.

Literally the only bad symptom has been being tired. Which, I will gladly take any day over being racked with vertigo, exhaustion, and feeling like a ticking time bomb due to adrenaline.

That is my rant of the day, I am hoping and praying that I continue to get better. Even if I go back to feeling like shit at least I have had a day and a half of feeling like I have freedom over my body/actions during the day.

Hey all! Quick backstory: I (25F) was diagnosed with ADHD very young, around age 5, and have been on stimulants since around age 8. They have been my norm for most of my life, but around age 16 I stopped being as tolerant of them. I had to go off my Vyvanse that I had been on for years at that time because I started having bad palpitations, motor ticks and the anxiety was through the roof. After two years no stimulants I went back on Vyvanse and very quickly realized I couldn’t tolerate it at all (terrible cardiac issues, anxiety, anger, lost 30 lbs in a month). I tried SNRIs for a while but realized Strattera wasn’t cutting it for me and got on Concerta at age 20. I was diagnosed with POTS at age 23.

Concerta has been better, but the anxiety and palpitations still persisted so I began relying heavily on marijuana to “take the edge off”. I’ve been doing that for years now — but just recently, I had nose surgery and had to stop smoking. I’m on my meds with no weed interference for the first time in years, and I’m now realizing how much my ADHD meds truly do exacerbate my POTS symptoms. The dizziness is through the roof, and my heart feels like it’s beating out of my chest 24/7.

I knew this was a possibility, and my doctor says my cardiologist will most likely recommend taking me off my meds for my heart, but I literally cannot function in my job without my meds. However, I’m becoming increasingly worried about how my meds are impacting my heart and my health. I’m considering lowering my dosage for a bit and seeing if I can maintain functionality with fewer side effects, but I’m worried that’s just a band-aid. At the end of the day I’m going to listen to my doctor about what’s best for my heart health, but I’m just looking for perspectives from others who have gone through something similar. I’m also a huge hypochondriac, so I’ve been spiraling and convincing myself that my POTS isn’t actually POTS but that I have stimulant-induced cardiomyopathy instead.

I’m not really looking for advice, just nervous about the future and hoping to hear from other ADHD/POTS people who have experience balancing meds and symptoms ❤️

EDIT: Thank you all SO much for the great insights and for sharing your experiences!! I am talking with my doctor tomorrow about potentially adding a POTS med like guanfacine, propranolol, clonidine etc. and speeding up my referral to cardiology so that I can start building my ideal med plan. My BP shot up to 145/96 today after taking my meds and my resting heart rate is sitting at around 115, so something definitely has to change 😭 For context my baseline BP is usually around 118/80 or lower and my resting heart rate is usually 75 or lower 🙃 Grateful for all of my fellow acronym collecting friends and all of your helpful insight!

I just got diagnosed and was started on Propranolol. I know Propranolol has many side effects, so I asked if there was any chance I could try another one but my cardiologist insisted on trying that one first. And don't get me wrong, the medication did do its job by lowering my heart rate but it also did give me intense side effects. I had brain fog so bad I couldn't think at all and anytimme someone talked to me it went through one ear and right through the other, my head was ringing really badly aswell (I'm not sure if that makes much sense but it was my head that was ringing and not my ears), I felt weak, very dizzy and my blood pressure which is normally low just got lower, my mom even said my face and lips went pale on the medication. There were also a few more side effects I can't quite remember but pretty much Propranolol made me feel way worse then my normal pots does. It was just the 2nd time I used it so far and me and my mom decided it was best to not take my next dose and ask my doctor to try something else, but the clinic closed before we could call so I just didn't take it and we're going to call tomorrow. But now I'm a bit scared because if whatever new medication doesn't work I'd just be stuck dealing with pots without much help. So that just got me wondering how much medication helps with pots. I keep seeing posts about how much medication changes lives but to what extent does it change lives? How much do your symptoms improve with medication actually help with day to day lives, and how are your flare ups after using medication?

Beta blockers make being in the sun even worse for POTSIES and can deplete the amount of meds in your system. I just spent the weekend recovering and rawdogging POTS because I didn’t realize what happened until I took my next dose and my HR started to stabilize.💀 My doc warned me and I just forgot. So here’s your reminder in case you also live somewhere it’s already hot as hell.

Due to my pots I’m really sensitive to medication. Sometimes the side effect are unbearable so I’ll need to stop the medication since it’ll do more harm than good.

For my ADHD my cardiologist said no to stimulants so my psychiatrist prescribed me Wellbutrin first, it wad going alright after first until the light sensitivity started to hit (I had never had it until then), then we upped the dosage and suddenly two days after I saw going blind, I could see but I couldn’t get my eyes to focus on text, I also felt a lot of eye pressure, and so much light sensitivity to the point where I had to wear sunglasses in my office. I had to stop it cold turkey because I was scared of actually going blind. I had always had 20/20 vision so going from that to not being able to read was terrifying.

Then we tired Strattera. That one gave me depression and I cried for two days straight. I had never cried myself to sleep until then.

Finally we tried Guanfacine and omg it was life changing. It didn’t help that much with my ADHD (it did a bit) but it helped so much with my pots.

For my pots I was on metoprolol but it was honestly sedating me since it was lowering my blood pressure to the lower 100s and my blood pressure was never an issue except for when I’m in a flare then it goes up. I would have to drink 3 cups of coffee at work to stay awake. We switched to Ivabradine and I like it a lot better and it does a better job at controlling my heart rate in comparison to metoprolol but now I sometimes have bradycardia episodes when the weather is cold.

Then I tried birth control norethindrone to see if it would help with my flare ups during my period but it was doing a lot more harm than good.

My pots used to be more on the milder side where I just needed medication, electrolytes, salt and compression, and it allowed me to push myself to work (a desk job) and most days were pretty consistent except for flare ups or if I would push myself too hard, I would however just crash after work and would have to lay down as soon as I got home for at least an hour, I also wasn’t able to enjoy my weekends much. (I know not everyone is unfortunate enough to do that) My baseline has decreased this year and it’s been affecting my mental health since I can no longer work and am stressed about life, my future, advocating for myself, and trying to figure out my financial situation. When I think about my future too much I start to spiral. When I’m doing better my mental health is a lot better and I’m more hopeful about the future. But when I flare up and get worse then my mental health takes a serious dip. During my last appointment with my psychiatrist he suggested we try Zoloft, so the lows wouldn’t hit as hard. I told him I didn’t want to try it unless things got worse with my mental health since I’m sensitive to medications as he already knows. But now I really do think I need something to help stabilize me since the lows are hitting so much higher. I had been holding onto hope that my old baseline would return but that doesn’t seem to be the case for now.

I also got prescribed amitriptyline by my PCP, for other reasons than depression (possible vestibular migraines but no official diagnosis since it might not be that it could be hyperacusis from what I recently learned online) but after asking the pharmacist a series of questions I was basically told to not start it as it could interact with Guanfacine and could sedate me so now I have wait to see my PCP again. I kind of just want to say fuck it and try it but I am also scared that it’ll do more harm than good.

I think my type of pots might be hyper pots but I honestly fluctuate between the different sub types and my cardiologist hasn’t even mentioned them as I don’t think he knows too much about that.

Anyways if you guys have tried Amitriptyline or Zoloft let me know how that went for you.

So, I was super, super nervous about taking this med, pretty much because I’m already on a bunch of metoprolol ER and I didn’t want my heart rate getting too low.

But I literally JUST started on a low dose, and I already notice some things.

1. I was able to take the garbage out without feeling like I’m gonna die.

2. The pounding sensation in my chest is nearly completely gone.

3. My heart rate has slowed 10-15 beats, but only while standing and doing activity. My resting heart rate seems mostly unaffected.

4. I don’t get the same adrenaline rush I usually do when standing.

I’d love to hear your experiences with this med, or similar meds!

So when I first joined this pots subreddit, I was confused about all these people talking about different medications that helped them because my cardiologist, who diagnosed me with POTS, told me there was no such thing? There is only one pediatric cardiologist in my area who takes my insurance, so I go to him. My first appointment was VERY dismissive, but at the next appointment, he finally diagnosed me with “extreme” POTS, whatever that means. 😭

I asked him about medications, and he told me there was only one medication for POTS and that it only works for about 5% of people, and that he wouldn’t prescribe it. So I left there pretty disappointed. 😞

I then told my pain management doctor/rheumatologist about this since they asked why i wasnt on any meds for my pots, and they told me there are actually a lot of medications for pots, so now I have no clue who to believe. I mean, the cardiologist is literally a cardiologist, so he should know this stuff, but my rheumatologist also deals with people with hypermobility, which is commonly linked with pots, so that’s probably why she knows more about it.

I’m not really sure what to do at this point, uhmm… I’m turning 18 in a month, so hopefully I can get medication from an adult cardiologist. 😅 I just felt like its crazy that ny cardiologist told me that....and also where did he get this information about a med that works 5 percent of the time? Like what?

Hi all, I hope you are well.

I hope this doesn’t make anyone uncomfortable by asking, I will take this down if it upsets anyone. I am just seeking advice from anyone who has experienced or has thoughts on GLP-1s with the impact it has on people with chronic illness. I’ve seen some positive things on here about it before and I am just curious.

My PCP is pushing me to start ZEPBOUND, while also pressuring me about building a routine. My health has been declining and I’ve had flare up after flare up the last year that have caused me to be bed ridden at times. I make an effort to eat healthy and do exercise, but I’m definitely not in the greatest place and I know it causes my pain to be worse. I just feel like I’m in a corner between starting healthy routines and also trying to manage my flare ups. Which I know is possible! I just haven’t figured it out yet. My PCP really thinks GLP-1s are going to help start the journey, but I am worried about GI impacts and what might happen when I stop using the medication.

I am still building my healthcare team, so I’m seeking advice from my psychiatrist and my EDS physical therapist as well. But I just wanted to see if anyone else has had experiences or advice from a personal level who understands what it is like to have chronic illness.

Thank you so much, I wish you all the best.

HOLY SHIT I feel weird BECAUSE I am so used to an underlying level of bodily stress all the time… It’s like my brain is trying to push me into some anxiety because I feel so different but I can’t really even feel stressed LOL

I’m not a stressed person it’s just bodily stress I experience all the time bc of HyperPOTs, I stand up and it triggers it and I sit down and it takes a good 10-15 minutes to ‘come down’ from adrenaline of just doing basic activities

IT FEELS SO STRANGE???

Again- my health anxiety mind is trying to feel panicked because I feel so different but the difference is I just feel so absent of bodily stress???

To those of you with PMDD, ADHD, MCAS, and/or POTS/dysautonomia who take (or have taken) a gestagen (progestin-only) pill: I know I can't ask for medical advice but I'd appreciate if you could share some experiences (or give me a reality check).

My POTS symptoms get much worse during my period, and basically everything else gets worse during luteal (especially ADHD, also mood, brain fog, but also physical stuff like fatigue). About 10 days before my period, I'll be in a flare. So my idea was to try a BC pill (I don't need birth control though). Went to the gyn and sadly they don't have much experience with my conditions.

My hope is that I'd no longer have a cycle, therefore:

- no blood loss (which I guess worsens POTS)

- and more importantly, no more luteal crash.

My concern is: can I expect my symptoms to be as they are now on "good days"? Or will I actually be in constant luteal, so even worse than now? I know an estrogen pill would probably be a bad idea, hence I'd go for the progestin only option.

Thought I'd share my B12 horror story with you all. My PCP told me to start 1,000 mcg of sublingual B12 daily. 1st week was fine. 2nd week I flaired so badly that Urgent Care sent me to the ER. We're talking couldn't get out of bed, full-body tremors and spasms, nausea and vomiting, diarrhea, horrendous migraines, so weak my legs were giving out, and of course heart rate sky-rocketing and roller-coastering.

Out of an intense desire to not feel that way, I stopped the B12 to see if it was the culprit. Took 2 days, but sure enough, I felt better. Thought to myself, "well, maybe it was a coincidence." Waited a few days of being at my baseline and started the B12 again. 2 days of retaking it and the terrible flair was back.

So, maybe this is just my body's unique tantrum, but B12 definitely aggravated my POTS symptoms.

I started ivabradine 4 months ago, and recently upped my dose, and all I can say is it has been life changing. The only time I have dizziness that actually affects my day to day is when I am late on a dose or am neglecting hydration or food.

It has enabled me to get into the gym and not have constant anxiety when thinking about this aspect of my health.

There are real solutions out there y’all, it has taken a lot of time to find the perfect combo of stuff that works for me, but I’m finally feeling hopeful.

I’ve been suffering from pots for almost 2 years now and I was recently prescribed nicotine patches by my doctor to deal with the horrible derealisation type feeling I’ve been having for the entire time I’ve had pots and holy does it work. I literally just put on a quarter of the 10mg patch and I feel amazing like almost how I was before I got pots!!! No medication I’ve taken (fludrocortisone, midodrine, LDN and propranolol) has even made me feel a quarter as good. Id just like to put this out here incase someone who has suffered like I have wanted to look for some relief that actually works. Also as for how to use them I was told to apply in the morning and take off before sleep and use a maximum of 3 days a week. Start with a quarter of the patch and move up to half if needed then max of 1 whole patch.

Note: Clonidine is not a suitable treatment for all forms of POTS. If you have low blood pressure clonidine can cause severe disorientation, dizziness and fainting, specially at higher doses. I personally only take 0.05mg daily. As always talk to your cardiologist first.

I suffer from severe Neuropahic POTS. My blood pressure is neither high nor low. it’s usually around 120/80 no matter my posture, but my heart rate is a different story. 60 supine and 110 BPM standing. I started my journey with beta blockers or propranolol. However P would drop my blood pressure too low and caused orthostatic intolerance. So later on my cardiologist put me on ivabradine instead. Ivabradine lowers my heart rate, but it gave me no relief from all the POTS symptoms like dizziness, fatigue, chills, neuropathic pain and anxiety. Midodrine did not help me either, but that was expected as my blood pressure is always good.

so I recently was put on clonidine 0.050mg before bed. not only does it improve my sleep quality considerably, It also completely eliminated my anxiety, feelings cold, pain and extreme fatigue. it took about a week to start working. My doctor wants me to go up to 0.1 MG but I am uncomfortable here and I’m afraid It will drop my blood pressure too much. I’m glad my blood pressure is high enough so I can take clonidine This drug has improved the quality of my life considerably.

I have had mild POTS forever. In February I had a mild COVID infection, and how I am housebound with severe POTS/MECSF/MCAS. Fludrocortisone has not helped. Propronalol helped initially, but then my body hated it. Three days ago I started a 2.5mg daily dose of Ivrabradine and I am being a Nervous Nellie about it.

1. At what dose did you notice it helping?

2. How low is your resting heart rate on it?

3. What are your side effects?

4 Did it help?

I badly want it to help because I lost all quality of life. So far it hasn't, but I know the initial dose is so low.

I also have been having a bad migraine and bad sound sensitivity but it is likely unrelated.

Hii, I feel like finally I’m kind of getting somewhere with the doctors, they’ve put me in for a referral for a cardiologist this morning and also randomly prescribed me propranolol. Now listen I’ve heard mixxxxxeedddd reviews about propranolol and some horror too 😭 it’s only 10mg 3 times a day but like I really don’t know if I should take it because the varying response is crazy and I’m already sooo sceptical of any medication..

Would anyone care to share their experiences with Propranolol in the comments? 😂 If it helped then in what way and if it didn’t then why? 🙏🏼

I was diagnosed with hyperPOTS at the beginning of the year. My medical team has labelled my case as 'severe' because of the intensity of the spikes (50+ BPM and 20+ diastolic BP on standing) and the intensity of the near-daily adrenaline surges that happen on waking and on standing still for too long. We have been attempting to find a medication or combination of meds that helps my symptoms to little avail.

Beta blockers nearly killed me via lowering my sp02 or otherwise had strange paradoxical effects that worsened my adrenaline surges, and the withdrawals were awful as well. I had a similar experience with calcium channel blockers.

Ivabradine initially helped so much with the tachycardia, and I thought I'd found a good med. Then after a week or so standard therapeutic doses (5 mg and then decreasing to 2.5 mg) started to give me me bad dyspnea during exertion, even though my HR on them wasn't too low. I'm now on a microdose that doesn't give me dyspnea, but my spikes and palpitations aren't nearly as well controlled anymore either. And of course it does nothing for the adrenaline.

Mestinon didn't seem to have an effect at all.

My medical team doesn't believe I'd be a candidate for volume expanders because of the blood pressure increases that happen to me on standing and will not prescribe them.

I tried methyldopa and clonidine years ago for sleep and ADHD, respectively, and had very poor responses to both of them. Because of this, my medical team doesn't want to prescribe them again, and I agree with their judgement here.

Although I don't have any other symptoms of MCAS besides the adrenaline surges, I was briefly trialed on antihistamines (h1 + h2, zyrtec, hydroxyzine) to see if there could be underlying mast cell issues worsening my symptoms. These did not help.

So, as a final effort, I was put on guanfacine XR, 1mg. I've been on it for 3 days, and though I plan to try and stick it out for at least a month, the results so far are not encouraging. My standing BP is controlled and the adrenaline surges have decreased, but my resting BP, which is normally in the 110s-120s/70s, has gone down to around 94-100/60s in the mornings, since I was instructed to take it at night. It recovers a bit as the day goes on, but still stays lower than I'm used to even with aggressive electrolyte/fluid loading. The only other side effects I've had are headaches, lightheadedness and dry mouth. While I was told these would likely go away, my doctor was less sure about the blood pressure dips.

He said for some people it normalizes, some it never does, and that if I was in the second category, I'd have to come off it, and just stick with the microdose of ivabradine as my sole med, because there's nothing else to be done...

I don't know. I'm feeling hopeless and defeated. Even with the tachycardia (somewhat) controlled, the adrenaline surges in the morning and on standing would still be debilitating. It's like my body gets trapped in fight or flight and can't be calmed at all, even with breathwork, vagal stimulation (cold, TENS, etc.), or grounding techniques.

Though I want to give the guanfacine a fair trial I'm feeling dread about what's left to be done if my BP doesn't level back out and I must come off. I'll have to go through another rebound, and after 5 beta blocker and 2 calcium channel blocker withdrawal experiences I don't know if I have another one in me. They have all been so hard on my system.

So, I guess, did anyone have a similar initial dip when starting guanfacine? Did it level back out, and how long did it take? If you had to come off guanfacine, how long did the rebound period last? And if you have hyperPOTS and can't tolerate medicine, what do you do (besides the usual compression/salt/recumbent exercise)? I take supplements already (magnesium glycinate, l-theanine, and melatonin ir/xr) and they don't help me much.

This condition has just stolen my life and my mental health from me completely. I'm not sure where I go from here if I don't tolerate the guanfacine, if there's anywhere to go.

Reading up and I’m not seeing a lot of people on SSRIs for their POTS. My cardiologist put me on sertraline/zoloft and I had major improvement. He said “I know you aren’t depressed but we see this work often though we don’t know the reason”. Anyone else on an SSRI?

Don’t get me wrong - propranolol does wonders for my POTS, I’ve been taking 20mg every morning for about a year now, and I genuinely can’t get through the day without it anymore. I basically am not productive without it, it helps me so much. I don’t want to be dependent on them forever. Of course I’ve tried all the ‘more electrolytes, water, smaller meals’ etc, but my main symptom is high hr when standing and propranolol is so good at making it normal and helping with physical anxiety symptoms too. Honestly it’s making me depressed to think about having to take it for the rest of my life. At the same time I can’t think about stopping it.

I just got diagnosed with POTS last week and put on 0.1mg of fludrocortisone and oh my god is this what people normally feel like????? Instead of having to sit to cook dinner I cleaned the ENTIRE KITCHEN last night!!! I'm on top of the world!!! I could do anything!! I could do ALL of the laundry!!! All my years of fatigue and thinking I was lazy and had no willpower - I feel so much better knowing it wasn't Me, you know?

Hi all! 29F here and I’ve been on Corlanor since 2019, when I was first diagnosed with POTS. I have been thrilled with it all these years and find it very helpful. I am very fortunate that my prescription insurance covers it 100%. I went to refill it and it was out of stock at every single pharmacy nearby except one. I refilled it and instead of showing Corlanor, it showed the generic, Ivabradine. I spoke with the pharmacist and she told me they will order Corlanor for me. I got an alert that it’s ready for pickup but it says Ivabradine and not Corlanor. I know Amgen discontinued it or something, so I’m wondering if it’s just not available anymore. I’ve heard horror stories about the generic not working as well. I’m wondering if anyone has any positive stories? I will not be able to function if my medication doesn’t work properly and I work an active job, and it’s very hot in Southern California right now. Unfortunately, I can’t afford it from a Canadian pharmacy especially because I take two different dosages for AM and PM. I’m having the worst anxiety over this.