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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.