thericky

It's definitely the heart rate that is her worst problem. Without medicine, it races as if she just ran a marathon. It pounds, gives her headaches and chest pain, and ultimately exhausts her very quickly. High blood pressure also gives her an overall throbbing sensation. She checks her BP and HR regularly throughout every day... after getting up, before and after activities, before bed. For the last few days, both have been higher than in a while. Good idea to go back to the beginning and try to figure out which medicines are doing what by slowly adding them. It would be nice to know exactly how each helps her so we could tweak the dosages. We've considered doubling her Toprol dosage as she used to be on twice as much as she is now.

Michelle was on Toprol only for a long time and doing okay. She wasn't well enough to go out and do things but she could function around the house. Then a hospital visit prompted he to try some new medications. After piling on Florinef, Midodrine, and Cymbalta with some success, we figured adding Toprol back in might make it all work. And it did... for a week or so. Now it's back to craziness. What's weird is that her blood pressure was actually low for a while, which is why she's on Midodrine. But now her blood pressure is high, presumably from taking too many medications that raise it. But we're not sure which one to drop or alter the dosage of. Too many variables! She doesn't have any problems when lying down. While she's not supposed lie down on Midodrine because it will make her blood pressure skyrocket, when she's off of it at night and lays down for bed, she feels fine. Whenever she's feeling bad, lying down usually does the trick. Her next doctor's appointment isn't for a couple of weeks, so we'll probably play with the dosages between now and then (we have the doctor's permission to do so, within reason). Then if nothing works, maybe we'll try a different beta blocker and/or cease one of the other medicines to try to bring her blood pressure and heart rate back down.

I'm writing about my wife Michelle's current condition with POTS, which has gone from bad to worse to good to bad. Previous posts (for those who want more detail on her past): http://dinet.ipbhost.com/index.php?showtopic=12348 http://dinet.ipbhost.com/index.php?showtopic=11838 She recently found the combination of Florinef, Midodrine, Cymbalta, and Toprol XL gave her the ability to leave the house and do things (other than visit a doctor) for the first time in around 2 years. It was a wonderful week or so where her heart rate was consistently in the 80s and blood pressure was mostly normal. Heat still triggered minor POTS episodes, but nothing major. This all happened within a few days of getting back on Toprol after being off of it for several months. Unfortunately, that period has vanished and now she seems to be back into heart rates of 120+ and blood pressure is high. Questions: 1. Does it sound like her body got used to the Toprol or one of the other medicines and it's no longer working? Has anyone else become accustomed to a working medication to the point where it no longer worked? 2. Since feeling worse, she hasn't been consistently taking her Midodrine as her blood pressure is now high and doesn't want to make it even higher by taking it. But I wonder if a consistent dose of Midodrine is what was helping in making her feel normal? Or does that not make sense? 3. What would you recommend we do now? Trying a different beta blocker is just about the only thing we can think of. Thanks, Ricky

Broken Shell: Thanks for the great response and I'm sorry to hear you're having a bad day. Both Michelle and I are night owls, so our schedules are different than most. We generally rise anywhere between 11am and 1pm and go to bed at around 2 or 3am each night. But going by that natural schedule, Michelle goes through the same ups and downs described by a few people above. It's very interesting to learn that cortisol levels are higher in the morning than at night. While Michelle was in the hospital a few weeks ago, they found that her cortisol level was low and gave her injections to raise it. The injection resulted in her feeling terrible and ultimately the cortisol level returned to "normal." But now that I know that the level changes throughout the day, I wonder what time they determined that her level was low versus when it was normal. Perhaps a low cortisol level is a good thing for POTS? How do you get this test done? Did you get it from a lab or your doctor? I'd definitely like to have Michelle try it just to see what the results are.

Yes we brought up MCAD with her doctor once and he said it's a possibility... but that we'll move one step at a time though. It's on the list of things to test/medicate for. We decided that she is going to try re-adding Toprol to the mix and see what happens.

My wife has POTS and has said on many occasions that as the day moves on and she grows sleepy, she starts to feel a bit better. She feels more relaxed and her symptoms seem to calm down. But when she gets up in the morning after a good night's sleep, the cycle starts all over again and she has a racing heart rate and needs her medications to make it through the day. What does the body do when it gets tired? Is there a way to replicate this end of the day relaxed (and somewhat symptom-free) feeling for the rest of the day?

Excellent! Thanks for all the advice. Time to start looking into this new list of medications.

Forgot to include Clonidine in the list... Michelle did try that briefly a while ago and it gave her some bad side effects, though it's been so long neither of us remember what they were. It is nice to hear that someone else has the same feeling about the beta blockers. It's not quite "right" but if it works, it works.

I previously wrote about my wife's recent POTS experiences in this thread: http://dinet.ipbhost.com/index.php?showtopic=11838 It got very long so I suppose it's time for a new one, with a new question. Quick summary... My wife (Michelle) has been dealing with POTS for around 3 years now. Over the years, she has tried the following medications: - Toprol, Florinef, Midodrine, Mestinon, Cymbalta She is currently on Florinef, Midodrine, and most recently added Cymbalta for the last couple of weeks. That combination seems to be just a little bit effective, decreasing her pounding heart, balancing her blood pressure, and decreasing her racing heart rate... sometimes. None of it is a good enough treatment to allow her to leave the house though. She only goes out to visit the doctor due to these symptoms + severe heat intolerance. Her blood pressure still goes low and high often and she still gets a speeding heart rate daily. Toprol alone was roughly as effective as the current combination - we've just been trying to find a better option. So what's the next step? Should we add Toprol back in along with the others? We've been following the Dr. Grubb playbook and kind of reached the end there. Her doctor is willing to prescribe anything reasonable, but we're not entirely sure what to request next. Any thoughts are helpful. Thanks!

Thanks for the reassurance that adding a beta blocker to the mix is a good idea. I don't think the doc will put up too much of a fight. Your explanation about a normal autonomic system versus Michelle's system definitely made sense. It seems that every time I start looking up information about POTS, I stumble onto entirely new things that I had never read before, leading to even more questions. So here we go again: 1. I didn't realize there were two main types of POTS: neuropathic and hyperadrenergic. It seems like something we should have figured out a long time ago but never did. It's clear that Michelle's doctor is treating her for the neuropathic variation. However, she exhibits some of the symptoms of both types, so it could go either way. She does not have any nausea or vomiting and only recently started flushing, though it's quite common now. Her main complaint is tachycardia accompanied by a pounding sensation from her shoulders upward. Is it possible that we're barking up the wrong tree and should be trying to treat the hyperadrenergic variant of POTS instead of the neuropathic version? Or does it sound like we're at least looking at the right type of POTS? 2. I hadn't read anything about mast cell activation until tonight but found some research (http://hyper.ahajournals.org/cgi/content/full/45/3/385) that linked it with POTS in several patients. I know some on this forum have MCA. What I don't quite understand is how we could possibly tell if Michelle also has MCA. Is a visit to a specialist required for that? 3. In reading a recent paper by Dr. Grubb (http://circ.ahajournals.org/cgi/content/full/117/21/2814), I see he does not agree that beta blockers are good for POTS patients, despite the common use by people on this forum. He even lists beta blockers under the "Drugs That Can Cause or Worsen Orthostatic Intolerance" category. He does mention that for the hyperadrenergic of POTS, he will sometimes use an alpha/beta blocker like labetalol. So why do beta blockers seem to help so many with POTS and yet Dr. Grubb does not recommend using them? Going by the Dr. Grubb playbook, it looks like an SNRI is the next step for Michelle. As much as hopping back on the beta blocker sounds great, I think it's better that we try something new in case it works even better. Cymbalta is recommended by Dr. Grubb (and I have seen several post on here that they take it), so perhaps that's the one to try. As for starting a new thread... should I? Most forums I frequent would rather see an ongoing topic contained within one thread to keep it organized.

Melissa - Thanks for that long response. You make some excellent points. We'll hold off on ANS testing for now while we try everything else. No point in diluting what we're trying to accomplish. Also, I had no idea that Midodrine was a spin-off of Ritalin. Very interesting. I believe our next course of action will be to replace Ritalin with a beta blocker, probably something other than Toprol XL. I've read a number of posts on here from people who have had great success with a couple of other beta blockers after having limited success with Toprol, so we'll hopefully learn from their attempts. Michelle increased to 10mg of Ritalin daily and has felt much worse, so we're going to stop that ASAP. It does appear to be raising her heart rate. Here are a few more questions that have come up while we've been discussing what to do: 1. A lot of talk lately (mostly fueled by Dr. Rieders) has been on Michelle's blood pressure. However, her main complaint is her tachycardia. The doc insists that by treating the low blood pressure (which isn't terribly low to begin with), we could help her tachycardia. However, although taking Midodrine has brought her blood pressure to normal levels (almost always between 110/70 and 130/90), it hasn't really helped her high heart rate at all. Beta blockers seem to be the immediate answer to fixing her tachycardia. But other than that option, are there other things we could try to help her heart rate? 2. Michelle has never tried an SSRI or SNRI and we're considering it. Cymbalta seems to be the drug of choice for many on here. What exactly does Cymbalta (or other SSRI/SNRI's) do to help a POTS patient with tachycardia? 3. Another random symptom Michelle has been having nightly is one of her ears suddenly turning red and hot for an hour or two. Sometimes it's the left, other times it's the right. Could this be anything POTS related? 4. Finally, Michelle often experiences a strong pounding sensation from her heart pumping, which is independent from tachycardia. What is this? Blood pressure too high or something else? Whenever we check her BP, it seems fairly normal, though it does drop when she's standing. Thanks! Next doctor's appointment is Friday, so we want to go in prepared to tell him what we'd like to try next.

After being asked many times if Michelle has had a full ANS test, we have come to the conclusion that she has not. In fact, we weren't really sure what exactly that meant until I just looked it up. I found a place in Stuart, FL that does it but that's 2 - 2.5 hours away. Where can I find a list of places that do full ANS testing? I hope to find one closer to Orlando.

Actually, she does have flushing, chest tightness, occasional trouble eating, and recent cognitive fog. How would we go about seeing if she's allergic to something?

It's good to hear that people take Toprol with Midodrine/Florinef. We're going to give the Ritalin a few more days just to see if it does anything. Next doctor's appointment is a week from tomorrow. Broken Shell: While she was in the hospital, I believe they did endocrine and cardiac testing, though I don't know if she got a FULL endocrine work-up... enough to note that her cortisol levels were temporarily low (they were back to normal after a day's treatment). Miriam Poorman-Knox: Michelle has had her thyroid checked a couple of times, most recently while she was in the hospital, and no problems have emerged there. Mack's Mom: She's taking 0.2mg Florinef twice a day and it seems to be working well. She tried 0.4mg all at once in the morning and it gave her some odd side effects. She tried 0.2mg just once, skipping the nighttime dose, and it made her feel worse, so 0.2mg when she gets up and 0.2mg 12 hours later seems to be the right dosage for her. We've never considered an allergic reaction, though I'm not sure what she'd be having a reaction to. As far as we know, she has no allergies.

Sorry everyone for not posting in a few days. There really isn't all that much to say. I do have a few new questions for all of you, which I've bolded below. We visited the doctor again last week and decided to try Michelle on Ritalin. So far, it doesn't appear to be doing much of anything. Bad side effects on day one but those have since gone away completely. She's considering not taking Midodrine for a day or two just to see if Ritalin could potentially be a less expensive substitute. I doubt it'll work but it's worth a shot. Does anyone here take Ritalin in place of Midodrine? I finally purchased a blood pressure / heart rate meter so we could document what's going on with Michelle. We've tried a number of scenarios and, so far, the results seem to be that the Midodrine/Florinef combo is definitely raising her blood pressure and lowering her heart rate a little, which is good, but it's not working enough. Her heart rate is 140-150 without the medicine and 90-120 with the medicine (usually around 110). Blood pressure is pretty normal while on the medicine. Michelle has been wearing her waist-high compression stockings, but we've taken her BP and HR with and without them and they don't seem to be helping at all. We'll keep trying for now. In addition, the Midodrine/Florinef combo isn't helping the severity of her high heart rate. On Toprol XL, her heart would get fast but wouldn't throb as much as with the current meds. And Toprol XL still wasn't a cure by any means... but it was better. So here are my most important questions today: - In general, is it possible that we're focusing too much on blood pressure and heart rate and not considering some other biological oddity that's going on with her? All doctors seem to do when we visit is take her BP and HR and very rarely test anything else. They're pretty focused on the idea that her low blood pressure is the cause of her high heart rate. However, from what we've found using the BP/HR meter, even when her blood pressure is normal, her heart rate is still very high. So is there something else we could be testing for that would be the cause of her increase heart rate? - Also, does anyone here take Toprol XL with Midodrine and Florinef? The doctors keep saying that taking a beta blocker goes against the physiology of what's happening with her body, but so far it's the only thing that has made her feel somewhat better. Would there be anything wrong with using Midodrine/Florinef to raise her blood pressure in conjunction with Toprol XL to lower her heart rate? - Finally, just curious, for those of you that take Toprol, how much do you take? Michelle was up to 50mg twice a day and it was helping her get around the house (but not helping enough to get her OUT of the house). Thanks, as always. And Erika - While I'm not glad to hear that you have POTS, it is nice to know that there's someone in Orlando other than my wife that has it. I will private message you with answers to your questions.

Hello, This is Michelle (with POTS), Ok, I just had a major episode of problems. I took my third dose of Midodrine 5mg at 8:30pm (late for most but I stay up late) and I had major problems. When I was eating dinner I got really warm. Then I had some major chest pressure and I couldn't get a full breath of air. I then got a major upset stomach, which caused me to have to "go" several times. Also, I started having some base of the skull to shoulder "pain". It was a lot like when you get a bad headache and you can't move your eyes with out them hurting, only I didn't want to move my head or neck for the same reason. It was the sensation between having a stiff neck and pain. Almost if I could crack my neck it would feel better but that's not what I need. All of this has been going on for the last 2 hours. I still have some neck issues and slight chest pressure. Does anyone else have any similar problems. I know that eating can cause some people to have issues but does any of what I'm going through sound familiar? I'm currently too scared to shower for the evening in fear of making all of these symptoms get worse. I'm ready to pull my hair out but I know that I need to stick with it. I appreciate all of your help that you're giving to me and my husband. It's been a very rough week for us both and we can't express how thankful we are that you are here. *Hugs* Michelle

Hard to say what's going with everything today. Michelle felt okay most of the day - she was able to walk around, do the dishes, fold some laundry, etc. and only got a little tired. She was taking 5mg of Midodrine every 4 hours, which seemed pretty good... some goosebumps here and there but nothing major. She also took 0.4mg of Florinef earlier today and then 0.5mg of Florinef a couple hours ago. In the end, it left her feeling somewhat bloated so she's going to back to a smaller dose tomorrow. Tonight was her first real dinner since leaving the hospital and her body wasn't too happy about it. She had chest pressure, neck ache, and trouble getting a full breath for around an hour after dinner. It's still going on now a little. These are the same symptoms she had before when the Midodrine was wearing off (after 3 - 3.5 hours) but this time it happened just 2 hours after her most recent dose, so we can only guess that the dinner caused her system to get all out of whack. Not much else to say right now. We're going to give it a few more days on this dosage of Midodrine (and she's wearing the compression stockings).

The doctor actually did prescribe 1mg Florinef daily! It seems like that's too much, so Michelle just took 0.4mg for now to see what happens. She was taking .2mg twice a day, so trying that same amount all at once shouldn't be bad. We'll see how she feels. She called the doctor's office and they said he regularly prescribes 1mg Florinef to his patients. She also has gone up to 5mg Midodrine every 2-4 hours (depending on how she feels), so we'll see how that goes as well. She woke up feeling relatively good today - hopefully that will continue. I understand what you're saying about an hour's drive not being that bad... but if we can get the same kind of care 15 minutes away, then that's even better. We'll give it a shot and if we feel that it's too difficult from the other office, we'll gladly drive the hour to see him. I'll post again tonight to let you know how today went.

We drove an hour today to Summerfield, FL (north of Wildwood, south of Ocala) to meet with Dr. Rieders. He was the doctor that was calling the shots over the phone while Michelle was in the hospital. Evidently he's had experience trying to treat POTS in the past. So we obviously hoped that the trip would be worth the long drive... and it was! Dr. Rieders is great. He said Dr. Grubb is his "hero" for the work he has been doing on POTS and he is willing to try any reasonable medication option we can come up with. He admitted to us that he doesn't have any magic way of treating POTS and also doesn't have the tools available to him that doctors at Mayo do, but he definitely does have the desire to find a treatment that works for Michelle - which is great! Even better is that for follow-ups, we can visit a closer office with another doctor who will relay information back and forth to Dr. Rieders so we don't have to keep driving all the way to Summerfield every other week. One of the first things he asked us was if we had visited DINET before and I told him that I had been for the last few days and that you all have been very helpful. So after running through a long list of medications that people here have recommended as well as those recommended by Dr. Grubb, we decided to stick with Midodrine and Florinef for a week with an increased dose and frequency. Michelle noticed that around 3.5 hours after taking 2.5mg of Midodrine, she'd start feeling terrible again... that's when it was wearing off. So Dr. Rieders is having her take 5mg every 2-3 hours (or "as needed"), which we'll start tomorrow. He's also upping the Florinef to 1mg instead of .2mg. We're going to try that for a week and see how it goes. In the meantime, we'll try it with and without compression stockings to see if they're helping or not. Michelle is also getting a small pedal bike exercise thing to strengthen her leg muscles. Lots of trial and error to come, so I'll continue to keep you all posted on how it goes.

Thanks for the long replies! So far, things are not going so well at home. Midodrine seems to be doing very little. Her heart rate isn't sky high but also isn't good. She's on her third home dose and not feeling well at all. Last dose for today. Either it's not enough or it just isn't the right medication. I hope when we visit the doctor tomorrow he doesn't simply increase it to 10mg and send us home to wait and hope again. She can't live like this when she knows that Toprol at least lowered her heart rate and enabled her to be fairly normal around the house. The pacemaker is a distant thought at this point, especially after reading your posts. Just doesn't seem right for her. I have a list of possible medications to talk to the doctor about tomorrow. Hopefully he knows what he's talking about. If not, maybe we'll look into the Jacksonville Mayo specialists.

Another update... we're home! But still unsure as to how long after taking Midodrine Michelle can lay down and/or go to sleep. Some say 4 hours, some say 6, and some say 8. Any thoughts on this? Midodrine was a hard drug to find... had to call around to 5 or 6 places before one pharmacy had it in stock. Anyway, appointment is on Thursday with a new EP so I'll let everyone know how it goes. We're essentially back to square one. Ugh.

Looks like today *might* be the day for Michelle to leave the hospital. She is currently on Midodrine 2.5mg 3 times a day (4 hours apart) and Florinef .2mg. She is also wearing the waist-high compression stockings (thanks for letting us know that she shouldn't wear them while she sleeps - she was wondering about that!). We took a walk through the hallways and her heart rate slowly worked up to around 120bpm before she felt like she needed to sit. She didn't get much sleep last night and hasn't been eating anything (she has an IV) so she's tired. BUT, the good news is that a couple of days ago her heart rate shot up to 160-180 just by standing up. So it seems like something is helping... not sure if it's the Midodrine, compression stockings or both. It is frustrating to have tried the "default" POTS treatment of Midodrine/Florinef a couple of years ago with no success only to try it again now with limited success. It's definitely not a cure and I'm not sure it's going to work better than Toprol did. Only a trip home with rest and food will tell us that. They want her to follow up with the EP in his office later this week to go over it all more completely. For those of you who are on Midodrine/Florinef - How much do you take and how often? Can you take it 4 hours before sleep?

Another update. My wife (her name is Michelle, by the way) was given Midodrine at 5pm. They said it was supposed to be 4pm but they were late... 4pm from now on. She was then given Florinef at 9pm. Now, I've read all over the place that it's dangerous to lie down or sleep within 4 hours after taking Midodrine. However, the nurse here is telling her that she can't sleep for *8* hours after taking it! Is the excessive? Or does it have to do with the fact that she is also taking Florinef? If 8 hours is the case, she can't go to sleep until midnight every night, only to wake up 8 hours later for another dose of Midodrine, after which she can't sleep anymore. That doesn't sound like a good plan. It seems like everything I read points to taking Midodrine 3 times a day, 4 hours apart, and not 4 hours before bed. Does this sound right? Good news is that there don't appear to be any major Midodrine side effects... yet. We don't know if it's helping anything though.

She is still wearing the compression stockings and hasn't complained since the initial struggle getting them on. I think she'll get used to them as long as they show signs of helping her. I was sick with a bad cold (possibly the flu) last week, so perhaps I gave her a touch of that which caused her current situation. But she hasn't shown any cold-like symptoms, so who knows. I just looked for an autonomic nervous system testing facility in Florida and it looks like there's one about 3 hours from here in Stuart... not exactly around the corner but I'll keep it in mind for the future. If anyone knows of one in Orlando, please let me know! The pacemaker option has been mildly considered for a loooong time and we're both very apprehensive about it, mostly because we haven't read of a single POTS patient actually benefiting from it. So most likely it won't happen.

I'm sorry to hear that there are so many spouses that don't stick by their wives/husbands! How could I not support my wife in one of the most difficult times of her life? If I had millions of dollars, I'd start a POTS research facility myself. Maybe I'll start playing Powerball. The hospital stay is getting worse by the day, in terms of her happiness. It's getting VERY frustrating. Unfortunately, the EP who knows (something, hopefully) about POTS is in another hospital and is reviewing her file. She may get transferred there tomorrow or the next day, depending on what he decides he wants to do. It's about 30 minutes away, so not too much of a commute. They gave her a first dose of Midodrine a little while ago (no side effects yet - woo hoo!) and Florinef is coming soon. But those do nothing for he high heart rate. Unfortunately, the EP has said to not do anything about her high heart rate until he decides what to do next. Another EP study may be in order (oh boy - already been there once) and she needs to be off heart rate meds to make that happen. To top it all off, I just purchased the waist-high compression stockings for her and they're the most uncomfortable things she has ever worn. They took some MAJOR pulling to get on and now they're digging into her stomach area. Supposedly they get easier to deal with after a few days... we'll see about that. No idea if they're helping yet. You make a good point about the fluids versus losing blood. I'll mention that to her. She was on Jolessa birth control, which let her have her period just once every 3 months, so that was a big help. But they told her to stop taking it while she was here in the hospital... and that made it happen right away. The cortisol is no longer an issue. We're done with that. Moving on. The most annoying thing is that every step along the way is taking FOREVER. The EP was supposed to review her file today but now he's not doing it until tomorrow, which means absolutely nothing happens with her until then. Just waiting... and waiting. Finally, to answer your question, we're in Orlando, FL, USA. Thanks for your help!