Does mestinon/pyridostigmine work immediately the first time you take it or does it have to build up in your body for a few days?

[joiedevivre]

I'm wondering because when I've tried it, it doesn't do anything. 

[yogini]

Should work immediately.  did you measure your BP before and after taking it?

[joiedevivre]

I didn't measure my bp. But I don't believe my bp is a measure of my symptoms anyway. In other words, I don't believe it's a perfect measure of how much blood is pooling/how much blood my upper body is getting. Maybe it is in some sense. For example, my standing bp might range from 75-95. Within that range it seems to indicate nothing. Maybe I would feel good if my standing bp was 120, but it's never been anywhere near that. And I can feel universes  different and have the same bp. I can feel like death with a bp of 90 one day, and another not feel like killing myself with a bp of 90.  The only thing that makes a difference to me is sleep,  exertion, and my period. 

[yogini]

10 minutes ago, joiedevivre said:

I didn't measure my bp. But I don't believe my bp is a measure of my symptoms anyway. In other words, I don't believe it's a perfect measure of how much blood is pooling/how much blood my upper body is getting. Maybe it is in some sense. For example, my standing bp might range from 75-95. Within that range it seems to indicate nothing. Maybe I would feel good if my standing bp was 120, but it's never been anywhere near that. And I can feel universes  different and have the same bp. I can feel like death with a bp of 90 one day, and another not feel like killing myself with a bp of 90.  The only thing that makes a difference to me is sleep,  exertion, and my period. 

mestinon increases BP so you could tell if it had effect by measuring your BP.  i agree that it doesn't necessarily mean that your symptoms will improve on any given day.

[Pistol]

I have hyperPOTS and was ordered pyridostigmine. It immediately raised my BP and made me feel terrible. I stayed on it for a while ( do not remember how long ) but eventually was told to stop it. My effects were immediate. 

[bombsh3ll]

I tried it and it did nothing for me - my diagnosis is POTS, type unknown as UK doesn't attempt to determine underlying pathology but I do have hypermobile EDS which could be a factor. 

It did have a slight laxative effect (I am prone to constipation) but I have better laxatives which I get free on the NHS but have to buy any drugs to do with POTS myself, so was not worth continuing with just for this. 

I do not have low BP, I am looking for help with presyncope/lightheadedness/orthostatic intolerance. It did not seem to change my BP either way. 

On the plus side, I am generally very sensitive to medications like many POTS patients (I suspect this is due to low blood volume ie the same amount of a drug is distributed within a lower volume of extracellular fluid hence probably higher blood concentrations), but pyridostigmine did not have any negative effects at all for me. 

It is a short acting agent not something that builds in your system over weeks so once you reach your maximum prescribed dose you should see pretty quick whether it is doing anything for you, and if not it can be stopped straight away without having to be weaned down.  

B x

[jvherenow]

I've been on and off mestinon for over a year. The initial dose did nothing for me. I needed a pretty high dose before I had any benefit. 

[Potsie1990]

I would be very, very, very cautious. The Mestinon 30mg made me incredibly weak, almost paralyzed like within the the peak 1-2 hours after taking it. I also suffered a horrible relapse of symptoms after. I was totally fine before (treating with nicotine which my cardio, neuro and pcp approved ) and the Mestinon screwed me up so bad!!! My pots went to a whole new rock bottom! Didn’t sleep for 3 days and now have a cardiac event monitor for 16 days as my heart starting pausing for 5 seconds and I had trouble breathing at night! 

 

Not trying to scare you but please go slow in case this happens to you! It’s horrific! 

[Derek1987]

On 11/1/2018 at 3:28 PM, joiedevivre said:

I'm wondering because when I've tried it, it doesn't do anything. 

Today I just started mestinon and Lisinopril. The Lisinopril to lower my Blood pressure. My heart rate laying down between 59-64 BPM. Without mestinon, it's usually in the 70s. 

 

I actually started taking mestinon a couple of weeks ago and it was making my blood pressure go way too high so I had to wait to see my primary care doctor to get me back on my old blood pressure meds.

 

So today is the first day I've had both meds. My heart rate is lower and my blood pressure has gone from good to high. It fluctuates a lot. But it hasn't been as high as it was when I took mestinon alone. 

My concern is, does this medicine help blood get to the brain? I'm reading through these forums and I don't understand how some of you are able to work. My disability through my job is under review to go into long term. There's no way I could work now.

[bombsh3ll]

I hope you manage to get some relief on your new combination Derek.

I would really love to hear about it if someone found a solution to get more blood to the brain that wasn't lying down! Many people seem to focus on what their HR or BP is, but mine can be normal or close to normal sitting yet I am still presyncopal. 

I also had to give up work due to POTS. I am a GP and nobody wants a syncopal doctor! There is a wide range of severity with dysautonomia though and many people do manage to work, albeit maybe less hours or in a less physical role. I struggled on with it for 4 years working 2 days a week, but I really shouldn't have been, and feel some relief having accepted that. 

There are a lot of different options though for medication and it may be that you find something that stabilizes you enough to continue working. Licorice Root capsules did this for me for a while - I wasn't normal but was much more functional and my quality of life (relatively speaking) was amazing until I developed tolerance to them over time. 

Best wishes,

B x 

[Derek1987]

55 minutes ago, bombsh3ll said:

I hope you manage to get some relief on your new combination Derek.

I would really love to hear about it if someone found a solution to get more blood to the brain that wasn't lying down! Many people seem to focus on what their HR or BP is, but mine can be normal or close to normal sitting yet I am still presyncopal. 

I also had to give up work due to POTS. I am a GP and nobody wants a syncopal doctor! There is a wide range of severity with dysautonomia though and many people do manage to work, albeit maybe less hours or in a less physical role. I struggled on with it for 4 years working 2 days a week, but I really shouldn't have been, and feel some relief having accepted that. 

There are a lot of different options though for medication and it may be that you find something that stabilizes you enough to continue working. Licorice Root capsules did this for me for a while - I wasn't normal but was much more functional and my quality of life (relatively speaking) was amazing until I developed tolerance to them over time. 

Best wishes,

B x 

I'm pretty confused today. I took the pyridostigmine this morning. Initially, that medicine shot my blood pressure into 160s over 110s.But today I didn't take my Lisinopril. I was going to wait and make sure my blood pressure went up. It didn't. Laying down I was 120/70 for blood pressure with 60 BPM. I kept checking it every few minutes and it stayed in that range so I haven't taken the Lisinopril. 

I just took a shower. My blood pressure rose 120/93 with 150 BPM. Im laying down now to get my heart rate down. As usual...

 

my blood pressure is never stable. Last night I woke up in the middle of the night with hot flashes. This is a first. I also felt really nauseated and weak yesterday. It seems like the pyridostigmine might of increased my symptoms although it did slow my heart rate down.

I'm lost.