thericky Posted May 8, 2009 Report Share Posted May 8, 2009 I previously wrote about my wife's recent POTS experiences in this thread: http://dinet.ipbhost.com/index.php?showtopic=11838It 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, CymbaltaShe 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! Quote Link to comment Share on other sites More sharing options...
bjt22 Posted May 8, 2009 Report Share Posted May 8, 2009 I can only speak for myself, but your wife's symptoms sound a lot like mine. Blood pressure and heart rate all over the place. I have to have a beta blocker. I resisted for a long time. Yes, the beta blocker along with Catapres often makes my blood pressure lower than what it would normally go...but, it counteracts some of the huge swings in both blood pressure and heart rate. That definitely makes me feel better. Not cured...not able to do a lot of things, but there's nothing wrong with feeling better just to, well, fell better. Quote Link to comment Share on other sites More sharing options...
thericky Posted May 8, 2009 Author Report Share Posted May 8, 2009 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. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted May 8, 2009 Report Share Posted May 8, 2009 Often, its not just the question of either/or...but ALL OF THE ABOVE. Taken alone, just a beta blocker probably wouldn't help so much. However, taken with other drugs, including Catapres and Mestinon, I do get a little relief. Side effects? Ofcourse there are side effects. Sometimes we have to be patient and often side effects do diminish with time. Also, all beta blockers are different. I tried one, and that was why it took me literally years to consider another. It was HORRIBLE. Another? Not so bad, and actually helpful. Quote Link to comment Share on other sites More sharing options...
tinkerbella Posted May 8, 2009 Report Share Posted May 8, 2009 i can't take a lot of things due to allergy's. i hate beta blockers this is one metoprolol er or just plain is suppose to be one of the better ones. I just can't tolerate any. er is extended release and would not be good if one's bp drops in the late afternoon and evening.i tend to get very vivid dreams or nightmares, I should say and my Raynard's flares really bad.i had bad side effects to clonidine, but decided to take 1/2 of a pill. It's not even considered a therapeutic dose. It helps me get some sleep and will bring help bring the hr down. side effects are much less with 1/2 and I would consider going up now that it's been about one year.Ibuprofen 800 3 x a day will blunt the heart rate but you need to be on something for your tummy like nexium. I broke out in petecchiae on my lower legs so I had to stop. compression hose, Mestinon, cartia xt (raynard's) and BP Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted May 8, 2009 Report Share Posted May 8, 2009 How about an assistive device to help getting around like a wheelchair or seatcane?Compression garments and electrolytes are treatment options too. Quote Link to comment Share on other sites More sharing options...
bjt22 Posted May 8, 2009 Report Share Posted May 8, 2009 Clonidine/side effects: for what it's worth, I pay a good price out of pocket to use Catapres patches. Many people report far fewer side effects. I know this isn't an option for everyone. My insurance does pick up a small portion of the cost, but paying the higher price is worth it to me in the long run. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted May 8, 2009 Report Share Posted May 8, 2009 I had to try a boatload of betas before I found one that works, but the one I take really helps control the surges of BP's and racing heart. It still causes fatigue, but to me the fatigue is a whole lot better than the ups and downs. I still have them, don't get me wrong, but the atenolol really helps keep it less intense, most of the time.It's probably the most helpful drug I take. I can't do salt for loading, but many people do much better with the compression hose. I have never tried them, I'm not sure why. Probably because my BP, until recently, has always been really really high and never low. I worry a bit about vagotonia at this point, but not much i can do about it and I am in a holding pattern with my meds. I take atenolol, valium, hormones, and potassium. I also agree with tea rose, it helps to have something to depend on if you need to sit in a hurry. morgan Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted May 8, 2009 Report Share Posted May 8, 2009 There are other treatments current being evaluated for POTS. Because POts is caused by very different mechanisms, what works wonders for some may actually make others worse...In some POTS patients there are blood flow abnormalities that seem to be caused by an elevated levels of angiotensin II. This decreases the availability of nitric oxide and causes POTS from reduced blood flow and low bloood volume.Losarten is being evaluated in a treatment for this form of POTS. Do a search on LOW FLOW POTS and discuss this with your doctor to see if it may be of assistance.Secondly, in patients were blood pooling appears to be restricted to the stomach, ocreotide or sandostatin has been used with some success. I know at least five pOTS patients who had success with this treatment. lastly, epogen is a last resort medication that the few patients who have been allowed to try and had significant success from. For patients with excessive sympo-excitation, methyldopa is being tested by the vanderbilt research body. I know one guy in the states with POTS that was given droxydopa and it was a god send for him. These are all medications that you might want to look into and see what your doctor thinks about pursuing. Quote Link to comment Share on other sites More sharing options...
thericky Posted May 8, 2009 Author Report Share Posted May 8, 2009 Excellent! Thanks for all the advice. Time to start looking into this new list of medications. Quote Link to comment Share on other sites More sharing options...
nantynannie Posted May 8, 2009 Report Share Posted May 8, 2009 Hi Ricky,Have you looked into MCAD on this board? Just curious, because I am taking a Zyrtec every morning and it has helped significantly. It is something simple she could take one morning and see what happens, you don't need to wait a week to see if it works. I noticed a huge difference the first day I took it. Good luck!Ann Quote Link to comment Share on other sites More sharing options...
thericky Posted May 8, 2009 Author Report Share Posted May 8, 2009 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. Quote Link to comment Share on other sites More sharing options...
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