Anyone On Mestinon And Midrodine At Same Time ? These Will Be My First 2 Drugs For My Oi (Pots). Start Next Tuesday, A Bit Scared

[hyperpots]

F/U today with ANS Dr.

Had Echo on first visit laying and standing plus some other physical findings. Shows Venous Pooling of blood from Head to Toe.

Had Tilt table with Isoproterinol 2 years ago, when I was told I had POTS and put on B-Blockers, but they didn't help.

Today, had repeat Tilt to see where I am now. Didn't get interpretation, but had the 30+ beats without any meds, guess it's a "Dry Tilt" Test.

I know my resting HR was 80's and I went to 130 while up. BP hung in around 110 over 80-90. So Mean Arterial Pressure is low. Not sure what that means. Didn't pass out, but all Symptoms exacerbated during test.

For me I have severe Sypathetic activity causing: Shortness of breath, chest pain, bad nausea, pupil dilation, diaphoresis, fatigue, Anxiety and Adrenaline rushes, I feel off Balance, Head Pains, and more.

My Head symptoms are far worse to me then anything even though all are bad. I swear it feels like Brain Damage ! But I know it's just Hypoperfusion as Symptoms change when body position changes.

Really weird that if I'm up walking around, things lessen, but if I'm standing still, everything goes nuts.

Sooooooooooooo

Dr. Says Mestinon will help with Parasympathetic excess and bring down Sympathetic response.

Says Midrinone will get my blood pumping the way it should be and help the pooling and Hypoperfusion stuff in the brain.

Lastly, he is considering an Antidepressant.

He wanted to look at everything and even wants one more breathing test to measure more of the ANS, but says he will do this shortly down the road. Wanted the weekend to figure out dosages, and my F/U is next Tuesday and then I get the Prescriptions.

He is confident these two meds alone might be all I need with some tinkering of dosages.

For me, it's like a guy in Pain for 5 years and a Dr. sitting with a Demerol Syringe, but says I'll give it to you next week. So, I have to continue with the pain for 5 more days. In the big picture, it's not long, but what I deal with daily is beyond ridiculous.

I can't imagine having my Life Back the way it was, and this is what he is saying I will get. I'm excited and scared to death at the same time b/c he might be wrong.

So, my pathetic posts continue for now and wondering if Anyone has been on this Combo.

I am on Nothing for my symptoms and have been treating them all of this time thinking they were Lyme symptoms. He says Lyme may have been the culprit, but certainly not causing my symptoms.

Ok, I'll stop typing and wait for feedback. Thank you everyone for helping me. Great group of people here :-)

Steven

[corina]

hi steven,

it's always difficult to have to wait when you so want your life back, but i'm sure your doctor will have good reasons to keep you waiting for a few more days. i can't remember if i were on the combo of midodrine and mestinon but do know that where midodrine helps a LOT of us it didn't do much for me. mestinon helped me regulating body temperature much better which was a huge relief (i'm a "cold" potsie where more of us can't tolerate heat). i'm also on an antidepressant (ssri) which i can't do without (it keeps my heartrate in control) so i can see why your doctor considers this.

i think you're very lucky to have found a doctor who is working so hard to find out what's best for you. try not to worry too much and have some faith. i'm not sure the treatment your doctor comes up with will give you the life you had back, but any improvement will give you a better quality of life!

take care,

corina

[lieze]

I've never tried those meds but your doctor seems great. I'm wondering where he is located?

I feel the same way about the IV iron.

What if this gives me at least partial life back.

It could be this was a big part of my problem and that I may find some restoration.

The drawback is it's expensive I'm paying out of pocket and it makes me feel very ill and with my weird reactions I worry that I will react to it one day and then I'll just end up in a mess needing my "cure" and unable to take it. Oh I can't let my mind go there.

Either way this is a process that takes some time kind of like taking an antibiotic for an infection.

It's been a very difficult thing for me to have to practice patience and it's also a balancing act because no you don't want to just be passive and not do anything to help yourself but even with the iron it just takes time to make a difference for those levels to rise and for me to make healthier blood cells.

With POTS I think if you can eliminate the surges for the most part I think your body starts to get back on that alignment better and meds can help that process. For me I think time and just slowing way down helped. Keep that in mind also if the meds don't do exactly what you think they will you might give it some time.

I have been encouraged to try one med at a time that way you can tell what is doing what-you seem to handle meds well so maybe in your case it isn't necessary?

I hope this really helps you-let us know.

[brethor9]

Hi Steven

I have been prescribed mestinon with florinef and metoprolol.....so far I have had an allergic reaction to the metoprolol and continue with florinef only....I have not had the nerve to try the mestinon yet...still trying to get over my most recent flare. Please keep us posted how you make out with the mestinon when you try it as I am very curious as I will also be trying it hopefully in the next several weeks. Glad to hear you are making some headway

Bren

[rubytuesday]

Hi, Steven,

I am a newbie. I had been seen by Dr. G after 2 1/2 years of near syncope that progressed to syncope with tachycardia and multiple medications and changes. My cardiologist and PCP told me since March that it was POTS. I graft my BPs and HRs using MedHelp monthly and take them to my appointments. When cardiologist sent my records with referral to Dr G, I was put on 'the list'. By the time I saw my cardiologist in Sept., I was so debilitated over the summer. My cardiologist had had me on Midodrine but it was making the BP too high with any activity at all and I was still having near syncope. I must have looked very debilitated as he called Dr G to see if there was any way he could see me 'sooner'.

By the time Dr. G saw me the first of Oct. he told me that had he seen me a year ago, he would have concurred with POTS. I clearly now have orthostatic hypotension--my feet were purplish black in his office (and I am tiny--non-smoker, non-drinker). Because I pool the blood so badly and it does not return to the heart, he has me on Mestinon and Midodrine (which he has already doubled and I'm still having periodic episodes). I also have to take a rather potent water pill when the fluid accumulates so bad.

What seems to have happened to me as he explained was that the autonomic nervous system was failing. No salt for me. I still have to drink a lot of fluid. My heart rate no longer gets tachy when the BP takes a plunge. He told me that I would probably need a pacemaker down the road (and I'm just entering middle age). I have a terrible time getting the compression stockings on. It takes me an hour and all the efforts of trying to cinch the foot to the proper position, I have rubbed the shin/forefoot raw. I have to wear the garter belt with my thigh highs and having hip injury find it very uncomfortable. It takes 2 of us to get the stockings off. I can only get them down as far as my ankles.

Another thing Dr. G told me was no riding my stationary bike--only recumbent stationary bike. He told me to avoid bending at the waist and raising arms above heart level (in addition to not going outside when temps are above 90, using chair in shower--no hot showers or baths, and avoidance of 'warm/closed' places and prolonged standing. He told me when standing to shivel and to stand with the legs crossed. He told me to stay seated through church services. He told me to carry my Mestinon wherever I go along with a small bottle of water as if I felt any inkling of symptoms, I could take an extra dose (similar to concept of Nitro) as it kicks in within 15 min. (unfortunately I get faint way before 15 min. of symptoms). Dr. G did tell me that the warnings were going to be less and less and that the 4th leading cause of death in elderly and cases like this is from falls. He has me on both meds to make me hypertensive as those risks (though very real) are less than those of fall (and I am a bleeder--Delta Granule Storage Pool Deficiency--I hemorrhage). He explained that once the hypertension is at a level satisfactory to him, he will start working on the hypertension.

Right now, I still have plunges (not quite as low, but the symptoms are nearly the same). Another oddity is that sometimes I may just be sitting or sleeping and suddenly pour buckets of water from my head, like a soaked mop (and then I chill). Dr. G told me there were a lot of adjustments that could be made with these meds or other trials of meds that may be needed.

So, yes, I am on both. And being new to this, it is a very scarey thing.

[mwise]

Hi Steve,

I am also on both Mestinon & Midodrine prescribed by Dr. Shields at Cleveland Clinic. I was put on the Mestinon 1st at 30mg 3xday and increased to 60mg 3xday. The Midodrine 5mg 3xday was added about 2 weeks later and I have been on both since February 2011. I had the Midodrine adjusted to 7.5mg 3xday & as needed. I have good days and not so good days, but I am working a full time desk job and doing little things around the house. I take each day as it comes. Sounds like your doctor wants to help you and that is good. RubyTuesday thank you for sharing your treatment plan from Dr. Blair Grubb. I have considered going to see him since I do live in Ohio and only 3 hours from Toledo, but I have a pretty good treatment plan from Dr. Shields who I like allot. I am open to suggestions.

[rubytuesday]

Hi Steve,

I am also on both Mestinon & Midodrine prescribed by Dr. Shields at Cleveland Clinic. I was put on the Mestinon 1st at 30mg 3xday and increased to 60mg 3xday. The Midodrine 5mg 3xday was added about 2 weeks later and I have been on both since February 2011. I had the Midodrine adjusted to 7.5mg 3xday & as needed. I have good days and not so good days, but I am working a full time desk job and doing little things around the house. I take each day as it comes. Sounds like your doctor wants to help you and that is good. RubyTuesday thank you for sharing your treatment plan from Dr. Blair Grubb. I have considered going to see him since I do live in Ohio and only 3 hours from Toledo, but I have a pretty good treatment plan from Dr. Shields who I like allot. I am open to suggestions.

mwise,

You are most welcome.

[akavella]

I currently take mestinon and midodrine combo. It has dramatically improved my ADL's and quality of life. I am back to work as a full time RN, and have hope again. I was originally started on midodrine 5mg BID, then increased to 5mg TID, then to 10mg TID, then 15mg BID and 10mg qpm. My doctor then added mestinon 60mg TID, and started to wean me off the midodrine, first to 15, 10, 10 then 10 TID which I currently take. He recently just weaned the mestinon to 60mg BID, and i am tolerating it well.

sorry that was a mouth full. my current meds are wellbutrin xl 450mg qday, midodrine 10mg TID, and mestinon 60mg BID.

When i first started mestinon, i'm not gonna lie, i was in the bathroom a lot. I had a lot of abdominal cramping and diarrhea. food went right through me. i too have the same symptoms as you, and when my bp would bottom out i would throw-up. the mestinon has tremendously helped with the nausea.

hope this helps!!!! let me know if you have any questions.

[rubytuesday]

Do I feel like a baby or what? My Midodrin was started in Sept. (can't remember the dose) Then Dr G In Oct instructed Midodrin 2.5 mg three times/day plus Mestinon was to be continued at 15 mg. at noon and as needed for sxs of near syncope/hypotension. That was beginning of Oct. By 3rd week of Oct. the Midodrin was increased to 5 mg three times/day (breakfast, noon and lunch). But I have been having now (mid-Nov.) much worsening abdominal cramps and vomiting. I'd had the problem with nausea that waxes and wanes (from dysautonomia? and I have EDS/gastric motility issues anyway). From what I read on package inserts it looks to me like it's the Mestinon.

You are on such big doses compared to me (and I'm still low/low normal BP--far from goal of getting me hypertensive) but I'm scared to call about the low BP still with the effects on low doses of these meds. I have call into PCP for tomorrow to see if perhaps adding Zofran might help me in tolerating this issue before the BP meds get adjusted again.

akavelle,

you're the bomb! Did they try to get you hypertensive, too, and then work on the hypertension. Nursing is very physically taxing and stressful work. My hat's off to you. Congrats for getting so much improvement and being able to get back in there.

[yogini]

I would go slow...ask your doctor if you can try one med first and then add the other...otherwise you will have no way of knowing which is working/.hurting you

[akavella]

yes going slow is key. it took many months to get to my dose. i feel that the mestinon has helped my nausea because it increases GI motility. i too have very low bp and even with the combo of these meds i cannot get my bp to over 90/60. normally i am in the 70-80/40-50. my norm before being diagnosed and having issues was 90/60, so yes the goal was to keep me from passing out, and to get me functioning by raising my bp. i am on high doses, but that is what has been working for my body, granted everyone is different. definitely start slow, and under your doctors discretion. one med a time is best just so you know if you can handle that med. i was first started on florinef, which i didnt tolerate, then started on midodrine, and then had the addition of mestinon. i also was started on a a very low dose beta blocker because my hr was so erratic, needless to say obviously i did not tolerate it at ALL, it nearly killed me i feel like. lol. anyhow, its a trial and error process unfortunately. best of luck to you!

[icesktr189]

I dont like BB either. Just go slow with each medication and even if you have some slight side effects, dont give up. Some might go away on their own!