Jenn202 Posted December 19, 2005 Report Share Posted December 19, 2005 Hi Guys - I am in a dilema about taking POTS meds and I have been this whole year and trying not to take any more drugs so I thought I would get your opinions:My MAIN problem is blood volume and fluid/electrolite balance issues. Dr Grubb recommended Mestinon as a first trial..... I have not taken it b/c I am not sure it would do anything for Blood Volume. I have a Mild form of POTS but its not enough that is causes me problems where I feel I need meds to control.I guess Grubb's theory was that Mestinon acts as a vasodilator and would help restrict my Veins...My Question is: For those of you taking Mestinon have you noticed improved Blood Volume and less dehydrayion issues?Thanks to anyone who can help Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted December 19, 2005 Report Share Posted December 19, 2005 If I were lucky enough to have Dr. Grubb as my doctor, I would do exactly as he recommended. If you don't think you are sick enough to take medication, talk to him about it. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted December 19, 2005 Author Report Share Posted December 19, 2005 All I am wondering is if the people on Mestinon on this board have had improved blood volume.....I have a complex history and there is much more too it than that I dont want to take Meds prescribed by dr Grubb.Anyway if anyone has any experiences I would appreciate it,,,, Thanks! Quote Link to comment Share on other sites More sharing options...
yogini Posted December 19, 2005 Report Share Posted December 19, 2005 Jenn,I looked into taking Mestinon. I think it increases the BP by squeezing the blood vessels in the upright position. I don't think it increases blood volume. That's why the BP goes back down when you lie down. Dr. Grubb may have been thinking it would help your POTS symptoms, not specific to blood volume. Although I haven't met him, he sounds very approachable. You may want to call his office or shoot him an email with your question/concern.-Rita Quote Link to comment Share on other sites More sharing options...
DancingLight Posted December 21, 2005 Report Share Posted December 21, 2005 jenn,i am sorry i do not have any helpful tips on this for you! this is a difficult question...and i hope others will have some info for you.this is definitely a difficult decision...love, em Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 21, 2005 Report Share Posted December 21, 2005 Mestonin is a treatment used for M.Gravis and I dont think it has any effect on blood volume as such. Quote Link to comment Share on other sites More sharing options...
d4g7 Posted December 21, 2005 Report Share Posted December 21, 2005 I was told by my neurologist that it helps to keep the blood in the upper part of your body, rather than pooling in the legs and gut.She never mentioned anything about Mestinon increasing blood volume - she prescribed Florinef and Sodium Chloride for that. Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted December 21, 2005 Author Report Share Posted December 21, 2005 Thanks for the replys . I think that possibly Grubbs Idea was to keep the blood in the upper part of my body.... Still deciding...Anyway Thanks everyone! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted December 21, 2005 Report Share Posted December 21, 2005 hi jenn - 2 things i'm going to reply to:first, the issue of whether you feel that your POTS symptoms are enough to merit taking meds at all. at first when i read this i was like, "well, then don't take anything. i would LOVE to feel that well." but....i know there's a lot more to it than that. and also wonder if - at times - we even know what "normal" is such that by not giving the meds a try you could possibly be missing out on feeling tons better than you even knew was in the realm of possibility. so....it's obviously a decision that you - in combo with docs - can make, but i can see rationalizing it either way. along these lines, it's also important to remember that starting a med doesn't mean you have to keep it up. usually a two week trial of mestinon is considered plenty for a thorough trial, though in literal terms it's in and out of your system in 24 hours.second, about the mechanism of mestinon itself. like others have said, it does not directly have any effect on blood volume. but that doesn't mean it still couldn't help. most treatments used for dysautonomias at the current time treat symptoms rather than underlying causes to at least some degree. so..what mestinon does do is increase the activity of certain neurotransimitters. the theory - as others have mentioned - is that the increase in these neurotransmitters is helpful in vasoconstriction, and thus limiting blood pooling for some. it's effect can be felt in other ways too which can be good or bad or neither depending on the person.hope this helps....and good luck with your decision...i can understand it either way. melissa Quote Link to comment Share on other sites More sharing options...
Gena Posted December 22, 2005 Report Share Posted December 22, 2005 Jenn,I'm kind of in the same boat you are. I usually feel well enough to get by with all the standard non-pharmaceutical treatments for dysautonomia. However, these past few months I crashed very hard from all the stress at work and went to my cardio at Mayo again. He gave me a low dosage midodrine to try (it acts as a vasoconstrictor). He said I could just use it whenever I felt I really needed it along with a beta blocker if I needed that too (ie. for those pots hole phases) and then I could decrease it and stop anytime.He said he'd rather that I do salt, fluids, etc. and just take meds for the bad times, since I function pretty well without them. That made me feel better, because I didn't want to be stuck taking meds all the time either.I am not sure if you can just take mestinon on an as needed basis??? Anyway, the midodrine didn't really seem to help me, and I even upped my dosage and didn't notice any difference in my BP. But at least I have the midodrine and a beta blocker on hand to try again when things get bad again...which I hope isn't anytime soon!The mestinon might make a world of difference in how you feel, so it's probably worth a try. Gena Quote Link to comment Share on other sites More sharing options...
DancingLight Posted December 22, 2005 Report Share Posted December 22, 2005 Jenn,The more I think about your dilemna the more I wonder if it's like Mayo? Weird analogy...but you know, one of those things that at some point you will try b/c you need to know that you did and it might make you feel better? Does that make any sense??? If you do decide to try it, I like to do it when ideally I don't have a lot of other things to deal with (like holiday company or whatver) b/c that just stresses me out more if I have a bad reaction to the med (which is always for me??? haha!). There's no timeline for needing to do it right now...so maybe after the holidays and things settle a little?Sometimes I have to try something just to know that I tried it...and I know we are both always looking for ways to feel better...to feel our fullest and best. I would hope so much that it would help you and work for you and help you to feel better!More later alligator!Em Quote Link to comment Share on other sites More sharing options...
Gena Posted December 22, 2005 Report Share Posted December 22, 2005 I agree with Emily on all of her points, especially about making sure you're not stressed out about other things when trying a new med and not during the holidays when there aren't any doctors around to answer any questions you might have.I was nervous to try the midodrine I was prescribed. I had a little scalp tingling, which was an expected side effect, but nothing else. I think sometimes, like Emily says, you have to try it, just so you know you did. It may help and it may not, but at least you gave it the old college try! Best wishes and Happy Holidays.Gena Quote Link to comment Share on other sites More sharing options...
Jenn202 Posted December 23, 2005 Author Report Share Posted December 23, 2005 Thank You Gena and Sunfish - Gena - I like the idea of taking meds when needed...... I am not sure mestinon can be taken like that since I believe it has to build up in your system.......I am still on the fence... I just hate to add another drug to my body....... Thanks for all the great thoughts and suggestions!! Em - Sorry forgot to add you to the Thanks You's...I didnt see your post until I hit the reply button! Shows you where my brain is at!! LOL Anyway, yes you make sense about giving it a try....... I might go ahead and try it after the holidays...maybe give it 2 weeks...... I have to think it through......Thanks again.. I appreciate everyone taking time out to brianstorm a little for me... HAPPY HOLIDAYS!! Quote Link to comment Share on other sites More sharing options...
ariella Posted December 25, 2005 Report Share Posted December 25, 2005 Jenn,This is very unscientific, but I used to be a very cold POTSy and mestinon is helping for that. So, if the coldness had anything to do with blood volume, well, I don't know, could be it did somehow help. I never had a blood volume study done.If you decide to try mestinon, be sure to take it with dry crackers and the like until you get used to it. It can be rough on the belly for the uninitiated. When I started, (albeit for myasthenia originally, not for POTS) I was started at a lower dose than I am currently being maintained at.Happy holidays to allAriella Quote Link to comment Share on other sites More sharing options...
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