Symptoms Worse Lately - Still Don't Want To Start Mestinon/? About Midodrine

[iheartcats]

Hello,

I've been struggling along lately & my symptoms have been worse. Higher HR in morning/while standing, dizzy, fatigue, and trouble sleeping.

I'm working as much as I can (I have FMLA, but don't get paid for the days I have to take, & really can't afford not to work).

The weather changes seem to be bothering me a lot this year, and whenever I feel like I am fighting a cold my symptoms get worse. Last year when I had the flu I was down for days, so I know that's common. I just hope to avoid a major flu this year.

Anyway, I'm feeling down because I was working so hard to get better. My EP really wants me on Mestinon, but he wants me on the 180mg Time Released once a day. I am really, really reluctant to take that high of a dose. But he's really adamant about that dose. I have asthma so am seeing a specialist first before I even try it due to the possible complications.

I don't know how to convince my doctor to let me try a lower dose at first. I have an appointment with Dr. Grubb next Spring, but if Mestinon could help I don't want to wait that long. Should I bring up my concern with my PCP and see if she'll prescribe a lower does of Mestinon in the meantime? Or just demand a lower dose prescription from my EP? I can't cut the Timed Release version, the pharmacist said, so I never got it filled.

Midodrine is helping a bit, and I am going to increase my morning dose from 5mg to 10mg this weekend. My BP has been about 105-120/80-87 in the AM already though and the nurse doesn't want it to go over 170/90. I don't know how much the extra 5MG of Midodrine will affect it (and I wonder WHY is my second number always so high compared to the first number?) The BP seems to fluctuate a lot and it scares me.

Any advice would be helpful.

[mkoven]

Can you increase the midodrine by a smaller increment? I take 6.25 4x a day. If you have a 5mg pill, it would mean splitting it in 4, which I do with a pill splitter. I feel the difference between 5 and 6.25. I can't go higher without dropping my heart rate into the 40s. My bp, with both midodrine and florinef is usually around 115/75.

[iheartcats]

Can you increase the midodrine by a smaller increment? I take 6.25 4x a day. If you have a 5mg pill, it would mean splitting it in 4, which I do with a pill splitter. I feel the difference between 5 and 6.25. I can't go higher without dropping my heart rate into the 40s. My bp, with both midodrine and florinef is usually around 115/75.

I have 10MG pills now, but I think I can split them into '4' - so I can go from 5MG to 7.5MG fairly easily. Maybe I'll do that - I hadn't really thought of splitting into 4, but I bought the 'name brand' as they cut in two easier.

I think I'll try that. 7.5/5/5 rather than 10/5/5. I can always go up if I need to.

Thanks for the suggestion!

[goldicedance]

I take Mestinon 180 time release. I take it before bedtime at Dr. G.'s suggestion to help minimize stomach upset. I have found that it does help.

Is it possible to split the 180 time release into 2?

Frankly, I would give it a try.

Lois

[Sunfish]

first, after quickly glancing through your post as well as all of the replies, i just wanted to quickly reaffirm (as you mentioned in your initial post) that you can NOT split the 180 time release tablet. doing so will in fact mess with the time release formulation such that, on a minute-by-minute & hour-by-hour basis you will get MORE of a dose as opposed to less. this is the case with almost all time release medications and as such they should never be cut, split, crushed, etc in any way. when in doubt it's always a good idea to check with your pharmacist (just as you already did)...when it comes to manipulating pills they actually tend to be more knowledgeable than many physicians.

moving on though to the bigger issues at hand i have several thoughts. i'll throw them all out & you can see if any stick....

i guess i'm not sure why your doctor is so opposed to your starting with a smaller dose? i can't tell from your post if you've brought up the issue directly or if it's just that you're certain that s/he is so adamant about your taking the 180 time release that you haven't bothered to address the issue? if you haven't done so i would certainly encourage you to do so as it certainly can't hurt. and the discussion, even if your doc doesn't budge, might help you to understand your doctor's position, i.e. if s/he tells you that s/he has had 200 patients similar to you and they have all needed at least the 180mg daily. i know it's unlikely that your doctor has that many patients similar to you but am just trying to make a point so hopefully you get the idea .

since you mentioned that you're already planning on seeing another specialist in correlation with starting the mestinon b/c of you asthma, perhaps this person could be "on your side" so to speak in regard to starting with a lower dose? in saying this i'm assuming that your prescribing doc is on board with &/or behind the recommendation the see this additional doc, but if that's the case & this person then suggests, or at least supports, your starting at a lower dose with the hopes of working up to the 180mg dosing, then would your current/ prescribing doc not follow suit? while i don't think it's likely to be a concern, if it's presented as a "just to be safe" precaution related to your asthma/ breathing then i would think that your initial prescribing doc would be supportive? as i'm thinking out loud & writing this it seems that this might be the easiest approach to take?

i've just reread your post to clarify (for me) the different doctors involved. seeing that your EP is the prescribing doc for the mestinon & the one who wants you to be on the 180mg time release i would, if you haven't done so already, at least try to see if s/he will let you try with a lower dose, making it clear that you will work up to the higher dose s/he wants you at as long as you don't have any problems. if it happens that this doc is someone that you can't readily get in &/or communicate with, that you see only every 6 months & can't get messages to/ from in between, etc, then i think it would be very reasonable to see if you PCP would write a Rx for a lower dose with the understanding that you will then work up to the 180. if your EP is someone who you can communicate with &/or get in to see fairly easily though then it's probably NOT a good idea to have your PCP write a script as it could be seen as going being the back of your EP. all in all my thoughts on getting your PCP involved are directly related to how things tend to operate with/ between you & your PCP & EP with issues/ meds in general & not just this one. hopefully this makes sense.

one additional note about the mestinon, whether you decide to push for starting at a lower dose or go ahead & try the 180mg time release, is that in either form it is still a fairly short acting medication, meaning that if you don't do well with it you won't be stuck with it in your system for days on end. while it's obviously true that the extended release formulation will last longer than the regular short-acting type, even the extended release will be out of your system entirely in less than two days, with most of it out in a day. without looking it up i may be mistaken in which case it would be entirely out in a day and mostly out in 14-16 hours (i'm too lazy to check at the moment but don't recall whether the extended release mestinon is intended to cover a 12hr or a 24hr period). the standard formulation lasts 6-8hours & would be totally out of your system in probably about 12hrs or so (an estimate). i suppose the shorter half-life could be another "argument" for starting with a lower dose, or even the "same" dose broken into the short/standard release tablets, but all in all no matter what tablet you try none of the mestinon formulations have a long half life compared to many medications, something that's always a comforting thing when considering any possible side-effects of a new med.

if you're not where you would like to be health wise, and it sounds like you're not, then i wouldn't wait on your appointment with dr. grubb before you make changes of some sort, whether it be the mestinon or something else. whatever change(s) you make may or may not help but if you don't try you won't know. changes don't always have to be medication as there are lifestyle things to try as well, but the things you're mentioning are things that dr. grubb is likely to bring up as well so the more you have already tried then you'll have that much more information to bring to your appointment to dr. grubb. b/c even if things don't work that in & of itself is information that may help shape what to do next. one thing to keep in mind is that it is generally most helpful to only make one change/ adjustment at a time, whether a medication change or something else; obviously there are exceptions to this rule, but in most instances it's the best way to identify what the specific thing is that is helping, hurting, or doing nothing at all.

regarding your midodrine, you most likely have a decent amount of room before you reach the blood pressure numbers your doctor has given you as an upper limit. obviously we're all different & you're wise to be aware of your readings as you increase your dose, but it's very possible (fingers crossed!) that upping your dose will greatly improve how you're feeling. as others have mentioned midodrine IS a pill that can be split so you aren't limited to 5mg increments for your dosing either, something that might be helpful for you now or in the future. additionally it might be helpful to consider the possibility of taking different doses of midodrine at different types of day, though you would obviously want to discuss this with at least one of your doctors first. just as an example, i take a higher dose of midodrine first thing in the morning than i do for my subsequent doses during the day (15mg vs 10mg), though at times i add extra at other times as well depending on how i'm feeling (& related to my BP).

i know i mentioned it earlier but if you're making changes to your midodrine doses it's probably a good idea to NOT make any other changes at the same time, including starting mestinon at any dose. that said, since midodrine has an even shorter half life than any form of mestinon, you wouldn't need to leave too much time between trying different "new things" in order to know what was doing what. to be fair you'd probably want at least a few days of your day-to-day life/ schedule with any new/ different treatment/ adjustment in order to account for the day-to-day differences in our bodies/ symptoms (aka it's hard to judge what anything is or isn't doing based on only one day), but unlike some meds (i.e. SSRIs) you don't need weeks or months to see how your body might be handling the new addition/ adjustment.

last but not least i'll throw in my own experience & history with the meds at hand. i already reference my current midodrine dosing. for the most part i've taken varying doses of midodrine since first starting it almost 10 years ago; if you know anything about me you know that i'm far from "well" but if i had to pick one med that's been most indispensable to me over the years midodrine would probably win. mestinon, on the other hand, is one of the meds that i'm not as confident of as far as how much it helps me. i started it while a research patient at vanderbilt and, at that time, it definitely helped me GI-wise (in the same way that for some it causes unwanted GI side-effects) as well as, in combination with other meds, with orthostatic issues, which was objectively shown on testing at that time. i'm less sure of it helping with either any more but considering the instability of my health situation, since it's not hurting my docs & i haven't wanted to rock the boat. at some point we may decide to play around to see if it's still serving a purpose but for now i take it solely based on the fact that there was proof of its efficacy years back. for what it's worth my midodrine dose is 180mg daily. i cannot take the 180mg extended release formulation as all of my meds must be liquid or crushable (for J tube administration) so i take my dose via three 60mg (liquid) doses; if my GI issues didn't get in the way i would gladly take the once-daily 180mg version.

let me know if you have any addition questions. good luck with your decisions, conversations with doctors, medication changes/ adjustments, & with juggling your job with FMLA the best you can (something i know is NOT easy). you can only do what you can do, so while it's often easier said than done try to not be too hard with yourself.

hope this helps,

melissa

[iheartcats]

Sunfish,

Thanks so much for all your input - I'm really having a hard time lately, sometimes my rate gets to 140BPM and usually my 'max' was 120BPM. 140 is where I start getting pain in the chest and I know it's not a heart attack, but still very uncomfortable. And I try to just get it down on my own because I know going to the ER is overall useless with POTS! They think heart attack/beta blocker/etc if you're lucky.

I see my EP about four times a year, and he is available via email/phone. My PCP handles my other medications (allergy, asthma, etc) but knows what is going on. She will prescribe my Midodrine if I need a new script before I see my EP. I think you are right about the asthma doctor. If he feels I should start at a low dose of Mestinon and work up to 180, I think my EP will agree. I have talked to me EP about the lower dosage and he doesn't want to do that if we don't have to. He wants me on 180mg as that's what he sees work best on people.

On the one hand, I'm glad it has a short time in the body. If the Mestinon really messed with my breathing, he said worst case I'd end up in the hospital a couple days. No one wants that of course, but that's 'worst case.' If it gives me bad asthma, it should be out of my system in a day or so and I can be back to normal. I hope it doesn't, but the asthma/Mestinon issues sounds like it's really variable by individual.

So I'm holding out on Mestinon until I see the asthma doc later this month. But I will give it a try if he gives me the 'ok.' I can't wait until March to see Grubb without doing anything else.

With my symptoms being a bit worse, I have been given the ok to up Midodrine up to 10mg. I'm starting with 7.5 in the AM, then 5, 5 (4-5 hour intervals). I can move to 10, 10, 5 but I feel more comfortable doing it in steps. I'm supposed to keep my blood pressure under 170/95 and so far I have. My 'new' dosage has been around 115/75 to 125/89. It does vary a lot, sometimes lower even.

Well, thank you so much for this. I hate that my symptoms have been worse, but I have been under a lot of stress and the weather changes where I am have been crazy (we're talking 30 degrees to 70 degrees virtually overnight) and that does bother me. I'm hoping med dosages can at least get me back to my more 'tolerable' baseline!