mountain girl Posted February 16, 2010 Report Share Posted February 16, 2010 I will definitely talk to my doctor before going off of any meds, but I wonder if anyone has ever found they felt just as good without the pots meds. I have been going for cranial manipulation therapy for about four months and do feel it is helping. I have been taking a beta blocker for about a year and a half, along with Florinef. The beta blocker made my bp go so low I could not tolerate it so was put on the Florinef 3 days after the beta blocker and did feel better then. i have been on Midodrine but did not feel it helped me and did not like the way it made me feel. Recently started Ritalin, but it makes me feel more chest heaviness and terrible headache. I am trying it again for the third time because I think it may help with the fatique, but I am not sure it is worth it due to the other side effects. When I say I am trying it again, I mean I tried it for two days, got a terrible headache and stopped it. A week or so later I started it again and felt I had more chest heaviness. The dr ordered 5mg 3times a day, but knowing how I react to meds I started with 2.5mg twice a day, and still had the side effects. My dr tells me because I had only had the pots for about a year before I started seeing him and having the cranial manipulation, he thinks I may be "well" in 6months to a year. He thinks the cause of my pots is biomechanical because of neck pain, and if the cranial manipulation can get things back how they need to be, that it may be possible not to need the meds. He says meds are a bandaid for the pots problem, and therefore if the cause can be determined, the better I guess the patient can be treated. I know the cause can not always be determined. I took the Ritalin 2.5 mg this morning, and so far no side effects, but it did not occur the last time til the second day with taking it twice a day instead of once. Did anyone else find their body "got used to" the med the longer on it? Plus all the side effects I read about it are scarey! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted February 16, 2010 Report Share Posted February 16, 2010 I don't know anything about Ritalin, but, my gosh, what a smart doctor! I look at all the possibilities as to why I developed POTS out of the blue, and I am always wondering about a few things--fluid balance and mechanics. I have to admit that around the time my POTS developed, my neck was doing some really loud popping/cracking noises, way up at the base of the skull. If you could have POTS related to cranial issues, then I could see where someone like me with weird upper neck happenings could have it related to the POTS. Alot of people here are EDS, which would mean they very well could have upper neck instability. Some people were saying on this forum the other day that it is possible our pituitary(and apparently other brain structures) might not be getting the blood flow needed to function properly. Well, if we are somehow compromising our blood flow into/out of our head, then there are structures in the neck(carotid body??) that tell us about our blood pressure and then tell the body from there to adjust. What if all that is somehow messed up and confusing everything?Sorry I got a little off topic from the Ritalin, but I wholly believe your doctor when he says we need to get to the bottom of WHY our bodies are acting like this.Maybe this is something we need to investigate further. Quote Link to comment Share on other sites More sharing options...
Shimoda Posted February 17, 2010 Report Share Posted February 17, 2010 Any chance your doctor is Goodkin?Also, yes. I feel like the underlying cause needs to be adressed, or the meds will have minimal effect. With the exception of the betas, I feel much better without the drugs in my system I think. Even with the betas, I'll feel much better when I'm on it. But for instance, often when I wake up before the morning dose, my HR will go through the roof and I feel worse than I ever felt before I got on the betas. For me, the meds are nearly useless with regards to POTS. I've practically tried everything twice, and almost all did more harm than good.Also, the cranial manipulation...do you really think it helps? It's incredibly expensive, and I wasn't sure if it was working or not. Just wondering. Quote Link to comment Share on other sites More sharing options...
mountain girl Posted February 17, 2010 Author Report Share Posted February 17, 2010 Yes, you guessed it, my dr is Goodkin. I have been doing the cranial manipulation almost 4 months, and it is very slow and while I do not see big improvement, I do think I am some better and my family thinks I am some better which for me is good feedback, because they live with me and I think sometimes when I feel bad, I forget that I ever have good days. I keep a journal too, just a few lines about my day, what I've done and how I have felt, which I think helps me track everything. I wish I was more familiar with this website to know how to e mail someone when it seems our cases our similar, but I have not figured that out yet. I am going to give the cranial 6 months to a year, which is what Dr. Goodkin suggested. Thanks for your feedback about being on meds versus not and everything else. Quote Link to comment Share on other sites More sharing options...
MommytoSJEA Posted February 17, 2010 Report Share Posted February 17, 2010 I do find that I feel so much WORSE on my meds then not having any at all. Yeah Im a mess if I dont take them, but Im a train wreck on the darn things. My docs just say "we need to find the right combo of meds that works for you" We've been trying to find the right combo for 5 yrs! I am highly sensitive to all the heart meds and BP meds that they have tried me on though. Hoping to some day soon right the right onesKelli Quote Link to comment Share on other sites More sharing options...
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