kay1964 Posted May 4, 2014 Report Share Posted May 4, 2014 Doctor In penn fl put me on clonidine hcl 0.1 tab twice a day and florinef o.1 daily.servre headaches after two weeks.he informd me that most of his pots patients toloerate it very well, but then he also feels I have mast cell.he stated to try for at least another 3 weeks, to see if the headaches went away.cardiologist took me off of that and the clonidine.only wants me on propranolol.has sent referal to toledo ohio to Dr Grubb.says we introduce nothing until then.just got out of hosp this week due to passing out hitting my head.sent me home with med bracelet so next time ones around me will know whats happening. Husband very worried.told waiting list for dr grubb long.my cardioloist took pics of my servre flushing and feet and legs servre bloood-pooling.and all my records hopeing it will rush the system.in the meantime trying to stay out of heat going to infusion center twice a week. Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 4, 2014 Report Share Posted May 4, 2014 Hi Tammy. Welcome to the forum. Sorry to hear you're having such a rough time of it. It's hard when you are getting conflicting advice from different doctors. Is the doctor in Penn. FL knowledgeable about POTS? Is your cardiologist?I haven't seen Dr Grubb but from what I've been seeing on here, it looks like it's taking over a year for people to work their way up the list at his office- even with pretty severe symptoms. Maybe it's less if they get in with his nurse practioner (or PA?) Beverly K? Hopefully someone in his practice will respond. But that may not be a quick solution for you, unfortunately.You mentioned that you've been diagnosed since 2007. Have you seen any other POTS specialists since then? Or tried other meds?Personally propanolol worked great for me, but I also needed midodrine along with it. Since propanolol drops BP along with HR, I needed the midodrine to raise my BP enough to keep it out of the danger zone.Unfortunately with this, it's mostly trial and error on a personal basis because we're all so different. If you have Mast Cell issues, the conventional wisdom is that beta blockers (like propanolol) aren't a good option for you. However, I have an MCAS diagnosis and absolutely LOVE my beta blocker so it's not across the board that it fits. I was also put on Florinef which caused me a lot of headaches. They did eventually resolve after about 4-6 weeks, but I never felt like the florinef was that helpful so stopped it after about 6 months with my POTS specialist's approval. I also tried clonidine but that dropped my BP way too much and also caused tremendous HAs so that only lasted about 3 days.The most important thing is having a doc that you can work with, who will listen to you and adjust meds based on your symptoms. If you are passing out and hitting your head then it seems like perhaps you're not on the optimal med regimen quite yet. I know my POTS neuro says that med changes need to be done slowly, one at a time and given time to take effect and stabilize as the ANS takes awhile to adjust to anything you do for it. It's probably best to trust your gut on this one and go with whichever doc you felt had the best understanding and experience with POTS and was most willing to work with you based on YOUR symptoms and YOUR situation. While being on the list for Dr. Grubb is great, I'm really worried about you continuing to pass out for the next year or more while you wait if your cardiologist isn't willing to do any more for you than just the propanolol. Best wishes! Quote Link to comment Share on other sites More sharing options...
LastUnicornLady Posted May 4, 2014 Report Share Posted May 4, 2014 I'm so sorry you're having a rough time, Tammy! That's a difficult place to be in. I haven't been diagnosed with MCAS, but I know that a lot of POTSies (whether they have MCAS or not) are sensitive to medication. For me, it was Midodrine. I had severe nausea and palpitations. I had some headaches when first starting Florinef, too, and they eventually went away for me. Every person is different, but I hope this is the case for you. Florinef has been the only thing that helps me to function.Good luck on seeing a specialist! My thoughts go out to you, as they do to all POTSies. Quote Link to comment Share on other sites More sharing options...
kay1964 Posted May 5, 2014 Author Report Share Posted May 5, 2014 Thanks so much for the posting back.Yes I seen a pots doctor at vanderbilt went there twice.locally I have gastrologist,cardiologist, and an endocrinologist, and a neurologist.and my allergist.im keeping my cardiologist in the driver seat until I get to ohio.after vanderbilt vists my husband and son found doctor in penn fl.he was very helpful in explaining pots.dsyautonomia, as he called it stem into many other conditions and causes.which would entail many other test.his own condition of pots make appt very difficult for him to keep.also he is not taking any other patients and I have 30 year old son who is also suffering from dsyautonomia. He had tilt table test my doctor ordered it and with out med induced went to 150 from his lying at 72.he was put on pindolol and lexapro, and gabapentin for pain.we know hereditary dsyautonomia is there.we are also going for genetics testing.i wanted dr grubb in my doctors driver seat.my cardiologist agrees.i am more med sentative than my son.i have been on Paxil, zyrtec, tried also lyrica and cymbalta.see thourgh the years I was told, mitral valve, then cfs to anxiety, panic attack and many gastro poblem.the more surgeries I had in my life the worse I got.my meds includes my beta blocker, my stockings, staying hydrated. Staying mobile.encouraging my son to also join the forum. Quote Link to comment Share on other sites More sharing options...
kay1964 Posted May 5, 2014 Author Report Share Posted May 5, 2014 Thanks, chaos and anabanana.my brain fog ans sympathic system had me going other places in my post.will ask my cardo to try midodrine.the problem is agin med sentative. Plus gi issues I get build up I think than I just go all over the place.even my beta blocker hav to be careful with.not only low bp like 70 over 50 but also gi problems start.but my cardo says we don't treat numbers but the patient.but I myself back off from taking it when I know bp is low.my heart rate at any given time on standing is 140.i know it sounds crazy but any meds I take I feel.the beta blocker is the only med I really have tried to stay on because it lowers the hr on standing.but that helps only one thing.hav flushing, ect....others...so hard to understand why if my son also suffering from the same form of dsyautonomia why meds intake don't effect the same way? Quote Link to comment Share on other sites More sharing options...
Chaos Posted May 6, 2014 Report Share Posted May 6, 2014 As to why meds affect you and your son differently, I would suggest two possible theories....one being that you have just enough differences in your genetic makeup that they cause you problems and not him. For example, maybe you have more homozygous mutations in your detox pathways whereas he only has heterozygous mutations there and therefore can handle meds better. The other theory would be that female immune systems are much, much more complicated than males' and somehow that is all coming in to play here. Watching a video by a doc who is researching Gulf War Illness, he was describing how vastly more complicated the female immune system is, mainly due to the fact that in order to sustain a pregnancy the female immune system has to completely change so that the body doesn't attack the fetus as foreign and kill it off. It's really very amazing and complex really but makes it that much more understandable as to why there could be so many more autoimmune problems in females compared to males.And perhaps a third theory...maybe he just hasn't had enough time to be exposed to enough stuff to develop sensitivities yet? Quote Link to comment Share on other sites More sharing options...
blueskies Posted May 7, 2014 Report Share Posted May 7, 2014 Hi TammyKay,Just saying hi and welcoming you to the forum as I haven't done so yet. I'm sorry to read that things have been so tough for you and that your son is also having problems.blue Quote Link to comment Share on other sites More sharing options...
blueskies Posted May 7, 2014 Report Share Posted May 7, 2014 Hi Chaos,All three theories make sense.I hope my adult kids don't develop this. So theory one is encouraging.2nd theory makes a lot of sense given the pots female to male ratio. I love the explanation.3rd theory really makes sense too. Good thinking, 99.blue Quote Link to comment Share on other sites More sharing options...
looneymom Posted May 7, 2014 Report Share Posted May 7, 2014 Hi and welcome to the forum. I have been on this medical journey with my son for over 4 years. Like you, he does have some sensitivies to medicines. What Chaos said really makes sense. Our doctor and I have discovered to start on the lowest dosage of medication and then try to build up. Hope you find the answers you need and it's good to hear that you have some doctors in your corner. I've heard many good things about Dr. Grubbs. So hopefully you will have a good appointment with him. Quote Link to comment Share on other sites More sharing options...
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