gjensen Posted December 9, 2013 Report Share Posted December 9, 2013 My heart rate seams restrained of late, but my blood pressure is especially bad upon standing. Like I am trading one for the other. Today, I am horribly dizzy. Bad enough where I cannot sit up. My lips are a purple shade. I keep getting the shakes. Can't decide if this is the new drug, or a new twist. I can't even get myself to the bathroom. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted December 10, 2013 Report Share Posted December 10, 2013 Ive never tried mestinon. But know the feeling of your heart feeling restrained on the beta blocker. I hope someone can post with advise. Hang in there Quote Link to comment Share on other sites More sharing options...
Runnersmom Posted December 10, 2013 Report Share Posted December 10, 2013 My son has tried Mestinon twice with no success. The first time he tried it for five weeks and suffered from severe fatigue. The second time he tried it , the same thing happened. He also had difficulty with several of the beta-blockers. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 10, 2013 Author Report Share Posted December 10, 2013 My son has tried Mestinon twice with no success. The first time he tried it for five weeks and suffered from severe fatigue. The second time he tried it , the same thing happened. He also had difficulty with several of the beta-blockers. Thank You. I quit it to know. I am starting to think that there is more to it than the Mestinon, but is hard to say yet. This stuff takes so much time to figure anything out. There is so much ups and downs in it anyways. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 10, 2013 Author Report Share Posted December 10, 2013 Ive never tried mestinon. But know the feeling of your heart feeling restrained on the beta blocker. I hope someone can post with advise. Hang in there Thank you. Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 10, 2013 Report Share Posted December 10, 2013 I have been experimenting with mestonin for a couple months now. Have also been doing several other things at the same time so hard to say which is mestonin and which is the other stuff, but like you, I'm stopping the mestonin now to see what happens. Thought it helped some things, but in combo with midodrine and beta blocker it kept my HR so low it was making me feel really bad. Couldn't find a good balance between them all. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 10, 2013 Author Report Share Posted December 10, 2013 Chaos, I am kind of sorting through treatment myself. I hate that because I am not qualified. I was really encouraged by the Mestinon. I had improvement the next day. My heart rate was better than since this stuff started. I was walking around all excited about some relief, and them BAM! I got put down and I was on a roller coaster. Face went numb, loss my color, legs tingling, horrible chest pains, blah blah. I did not take anymore that day and started again the next. I really thought it made an improvement. The next day all of the weird stuff came back and lasted all day. Was really bad. That is when I posted my question. I took my dose yesterday morning, and I got bad again. I stopped and by the end of the day I was better, but it came back last night. Then I have struggled today. Mestinon or not? I am starting to think not. I was liking that it seamed to restrain my HR without making it too low. It was the first time in a long time that my HR at rest was normal. I am playing with one thing at a time. I can't make sense of one thing alone. I want to see improvement and then see if I can get more improvement. Quote Link to comment Share on other sites More sharing options...
Chaos Posted December 11, 2013 Report Share Posted December 11, 2013 Frustrating indeed. Were you titrating up on it at all or how were you dosing it? I was on 30 mg 3x/day and was supposed to go up to 60 mg 3x/day. Did ok on the 30mg but when I tried to increase was when things went bad and then even when I went back down, it just wasn't doing it for me. HR was staying in the low 60's even when I walk up stairs and BP was way too low for that low of a HR. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 11, 2013 Author Report Share Posted December 11, 2013 Chaos, I do not think my episodes are related to the Mestinon now.I do not know what to make of it. I am starting to wonder if you can have a failure of the auto regulation of cerebral blood flow without having any complete failures otherwise.I cannot sit upright. Ever heard of this? Now I am symptomatic laying down. I do not know what to make of it.How can someone improve blood flow to the brain and not have low blood pressure? If that is indeed what it is.I do not know. Something new is going on. I thought I was I bad shape before.I am trying to look the stuff up, but having trouble staying focused. Thankful for spellcheck. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 11, 2013 Author Report Share Posted December 11, 2013 One thing I am sure of concerning the Mestinon is that it improved my heart rate , but increased my blood pressure. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted December 28, 2013 Report Share Posted December 28, 2013 Mestinon can be helpful but works mildly and only helps dizziness not fatigue in my case. Quote Link to comment Share on other sites More sharing options...
gjensen Posted December 31, 2013 Author Report Share Posted December 31, 2013 I tried Mestinon for the third time today. I cannot take it. It instigates my spells every time. I wish that I understood why I cannot tolerate it. An example is this morning. I felt it kicking in. Within an hour of taking it, I was riding a roller coaster of fluctuating heart rate and blood pressure. By an hour and half in it my blood pressure got pretty high, was having trouble breathing. esophageal spasms, shaking all over as if I was cold but I was not, and sweating. This was just 30mg. What I did not like the most was this awful feeling that spread over me. My wife said that I acted "out there". Blood pressure got to 180/100. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted December 31, 2013 Report Share Posted December 31, 2013 Scary! Thoughts are with you. Quote Link to comment Share on other sites More sharing options...
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