kitt

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Have flown all over the world in the last five years, (to China in biz class) but a trip to Hawaii from the east coast (although in first class) made me fell as though I'd arrived in the back of a pick up truck, and took days to recover from. Why is first class upright, when biz class is lying flat? From the same coast and for the same cost? It pays to investigate the legs of the trip. Flying back from Hawaii to the east coast with different stops in Biz class was a breeze. Laying flat on Delta. In simple terms, first class is awful, and Biz class is wonderful. To Hawaii, Europe, or China. Biz class is the way to go, and it's not a problem as you can lie almost flat or recently, completely flat. To Europe though from the east coast is not nearly as difficult. East coast to Europe is not a huge problem, but at this point I would only fly biz class, so that when I arrived I was coherent and functional. Bon voyage.

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And you've had a complete cardio workup? I know your passed the TTT, but it's possible to pass a TTT on a given day and still have pots. Did you wear a holter monitor for any amount of time? What about your BP, what were their comments on that? Have you considered buying a heart rate and BB machine at the drug store, and keeping track of your pulse and BB sitting, and after standing for 20 minutes throughout the day? Just doing that could give you enough information to know if you have pots. If you pulse goes up 30 beats after standing 20 minutes, and you get this information consistently, and make notes, you can take that information and at least know for sure if you have pots and pursue that avenue. Realize you're on a deadline.

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The study was still open in 2012. It's interesting that Vandy is keen on Methydopa, as you say Buster. I started it yesterday, and am tolerating 250 mg. 2 times a day so far with no issues. I've only had three doses, but usually I don't tolerate anything new. My only concern at this point is to quiet the sympathetic aspect, as my NE is over 1400, and life without sleep for months on end has been a living nightmare. If it can do that for me, I'll be thrilled. Have tried Clonodine, and Mestinon already, so am hoping. Am especially hopeful because I have CFS also, and the study has been going on so long, I can't believe they haven't learned quite a lot by now. If I didn't have the extreme hyperadrenergic aspects, I wouldn't have tried it. The side affects are 'possible side affects', but I agree, they concerned me too. Thought the fact that they're testing saline along with this is interesting.

I had heard Vandy was doing a trial on Methyldopa, but did NOT know that it is on patients with both POTS and CFS. Wish I had learned of this when it was still open. Interesting reading about it. Noticed they also are studying the effect of saline in this same study, This is a very long study. 2007 until July 2013. http://clinicaltrials.gov/show/NCT00580619

Am wondering if anyone is currently taking this, or has tried it in the past. Have filled a script for this and will start it this afternoon. Have tried Clonodine, beta blockers, and recently Mestinon. Had different problems with all. Feel like my primary concern at this point is to reduce the catecholamines, particularly norepinephrine. Am having far greater problems with excessive NE (lack of sleep!) than being concerned with heart rate and BP. The side affects of Methyldopa are awful, am almost afraid to start. Any thoughts would be appreciated!

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I've had a nasty reaction to a very low of Mestinon too. Disheartening. I had high expectations for this. Had bad reaction to a very, very low dose. Ugg. Not too many options left, with the exception of Methyldopa. Have tried two BB's, Clonodine, and Mestinon, without success. Am hyper pots, but feel there has to be something out there.

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I wouldn't blame the Clonodine, even though both of my very weird episodes were on Clonodine. I couldn't handle Clonodine for other reasons. I'm not on an SNRI, so can't add inmput. Please share your experiences with sleep with me! Are you able to sleep with a high NE? As for meds, have tried 2 BB's, and both caused my BP to go dangerously low, Clonodine made me feel even more tired, and currently am trying Mestinon at a 'micro' dose. Don't hold out a lot of hope for it, Please share your sleep experience. Thank you K

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Kelly, Yes, 30 mg. a day is my prescribed dose of Mestinon. My cardiologist studied with Dr. Jeffrey Goldberger at Northwestern U. Dr. Goldberger is a longtime researcher of dysautonomia and has been Vice President of the Dysautonomia Foundation and on the board of directors. He has authored dozens of papers on dysautonomia. My cardiologist has been on this journey with me from the beginning, and has done all the testing and seen my negative and extreme response to two low doses of BB's and a low dose of Clonodine. Perhaps because he witnessed my extreme and somewhat bizarre reactions to very low doses of bb's and Clonodine, he choose to prescribe Mestinon as he did. Seems like a wise decision based on my responses. I know what the standard dosage is. I've done the research. But some of us have a hyper response to even small doses of medication due to immune and neurologic predispositions. What concerns me is a poster on Dinet who claimed her Mayo doctor said Mestinon was NOT indicated for hyper-pots patients. I'm also trying to understand if other patients had difficulty titrating up to a higher dose. It's not where you start the dose, but where you end in terms of mgs. I've had this experience with almost every drug I've ever taken. Hyper sensitive in the beginning. Thank you for you input. So you're going to stay off Mestinon after going off of it? Lower fatigue would be a gigantic benefit for me due to having CFS , yet when I titrated up a small amount my fatigue increased. I queried posters about Mestinon before this appointment, and there were two types of responses. Some felt it was a 'shrug drug' (great term!) and others felt they couldn't live without it! On the basis of people who 'loved it' I felt I should try it. Rama and several others. Hope they'll chime in. Am trying to determine if others had difficulty titrating up and if anyone else was told it was contraindicated in hyper pots? I see the doctor at M.D Anderson tomorrow after doing a slew of blood testing and a24 hour urine collection for N-Methyl-histimine and 11-beta-Prostaglandin F2 to test for Mastocytosis. Am hoping for a negative response, but have MCA at the least and hope to get a lead for that. M.D. Anderson does not treat MCA and only agreed to do a work up for systemic Mastocytosis after I 'applied'. (No one can make an appt at M.D Anderson to see a doctor without sending in paperwork.) That's 'off-topic' but I appreciate input from anyone with experience with Mestinon. I appreciate the responses, and if anyone else is a 'freak' who has an extreme reaction to even very small doses of medication I'd appreciate your thoughts.

I started Mestinon a week ago. Started slow at 7.5 mg twice a day. Felt it helped with my sleep at night, one of my biggest problems since I have a norepinephrine level of over 1400. The adrenaline with that high of an NE makes it impossible to sleep more than one, sometimes two hours at a time, and I have great difficulty falling back asleep. Felt as if Mestinon inhibited the excessive sympathic activity, and was really pleased, as I was able to sleep for longer periods. I felt a bit more energized during the day, which is an issue for me since I have a CFS with hyper pots. On Sunday night I switched the Mestinon to 15.mg 2 x a day, and felt like I've been 'hit by a truck' everyday since. Have spent my days in bed which is not normal for me. Did anyone taking Mestinon have a hard time 'getting started'? Anyone notice time being a factor, or were you 'up and running' right off the bat? Thanks for your feedback!