jpjd59 Posted June 8, 2012 Report Share Posted June 8, 2012 Okay, so my daughter went to a new cardiologist today who supposedly knows about POTS. She said that my daughter has hyperPOTS (normal blood pressure, high heart rate and high NE levels). She said that she has blood pooling in her feet. She said that any meds/herbs that my daughter takes should constrict the blood vessels rather than dialate them. She also suspects a mast cell disorder. Before she prescribed any meds for my daughter, I explained to the Dr. that my daughter cannot take anything that causes depression/suicidal thoughts because of severe reactions she has had to other meds with these side effects. She sent my daughter home with a prescription for Singulair for the mast cell problem and said she would recommend for my daughter to take Clonidine as the next round of meds for POTS.When I got home I looked up side effects for Singular and it has depression/suicidal thoughts as a potential side effect. Does anyone know of a H1 antagonist med that doesn't have this as a side effect?Also, when I looked up Clonidine it said that it dialates the blood vessels. Does anyone know anything about this?Pam Quote Link to comment Share on other sites More sharing options...
issie Posted June 8, 2012 Report Share Posted June 8, 2012 Clonidine definitely dilates. I'm on it and having issues with edema. But, it calms down the sympatetic response and I don't have as many surges that the high NE causes. I also have pooling - but, haven't found anything that constricts to be tolerable to me. Whereas, things that vasodilate I'm okay with. So, it depends on the person. It may be that there will have to be two types of meds given - one to counter-act the other. It seems like something that shouldn't be done ---but, with POTS they do it all the time. So, you won't know what will happen until you try it. I'm only on 1/4 of a pill 2 times a day and started out with only 1/8 of a pill. It actually, made a difference at that low of a dose with me. But, I'm super sensitive to meds.Just because there is a warning on a drug doesn't mean that every person will be affected that way. But, they have to CYB themselves or they could be held liable. I do okay on Claritin for the H1, but am still trying to figure out what to do about an H2 - cause I'm not tolerating any of them very well. I have EDS, MCAS and HyperPOTS.There's a lot of trial and error with this type and you have to try a whole lot of things. Do a search on clonidine and mast cell activation disorder in the forum.Issie Quote Link to comment Share on other sites More sharing options...
arizona girl Posted June 8, 2012 Report Share Posted June 8, 2012 When I told Dr. Grubb that I'd had adverse response to clonidine, (I had to keep taking more and more for it to keep my bp down) he prescribed labetalol, I take 50 mg and add more if needed. It is a pediatric dose. Labetalol is an alpha/beta blocker and works for patients that are hyperpots. My blood pressure also goes up on standing. Your daughter's doesn't do that? It is interesting that she has elevation in Norepi and not high blood pressure too.Perhaps you could ask the doc about labetalol. A lot of people on here seem to have mast cell issues. Though I don't think I have that when I'm feeling off and having stomach issues I take zantac w/benedryl. Usually have of each pill and it seems to help. I just have problems with dry eyes, nose and mouth, so benedryl makes that worse.I'm so sorry your daughter is having such a hard time, hopefully you all are on the right track now. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted June 8, 2012 Report Share Posted June 8, 2012 The original proband with Hyper POTS and NET deficiency did not suffer from blood pooling. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.