dsdmom

Maxine, How are you feeling? Are the OI symptoms abating to "normal" levels? I ask because I'm dealing with something similar right now - no temperature - but a virus took me out and has made me have an enormous flare. Wondering how you're faring...

Gwendolyn, How long were you on it before it stopped working? And what dose were you taking? Howdid you know it stopped working - did it just not help with your symptoms anymore or did it actually make you symptoms worse?

So I have been taking Mestinon for probably about 6 months and other than having some adjusting to do in the beginning I've really liked it. I'm on a low dose - have built up slowly to 20mg 3/day. Just recently I'm having more autonomic problems - and it seems to be worse when I take the Mestinon. I'm really confused because until this point the Mestinon has always made me feel better. Is is possible that something has changed and it's making me feel worse? Has anybody else had a similar experience with this drug?

Do a search on licorice on this forum to read about the different forms... I totally forgot about it and I took it for months! I think it did help a little for me but it also aggravated my reflux so I had a lot of chest pain from it (not a normal response). Good luck!

Just brainstorming here...but would you consider something like Effexor? Or something else that may even at a low dose cause the side effect of increased bp? May not be a good choice for you but just thought I'd throw it out there...

Hi all So here's the story - I have been on Wellbutrin for almost a year - 200mg of the SR (100mg 2/day). I initially went as high as 250mg but also developed severe headaches and dropped to 200mg which seemed to help. Well I continue to have headaches that can get severe and am sick of it so recently decided to drop down again to see if my headaches got better. A couple of weeks ago we dropped to 150mg but it was the XL version so only 1 a day. Not sure if it's related but my reflux got really bad while I was on it and since my mood has been good I got cocky and thought I should try getting off it all together to see how my headaches were. So over the weekend I dropped to 100mg of the SR - which is shorter acting - and I've been miserable. Almost as soon as I took the SR my autonomic system went a little nuts - and I cant' help but wonder if it got used to the XL version - can't figure out whey else it would be reacting this way since I took it for almost a year. But for the last few days I've taken just 100mg and I have lots of orthostatic symptoms, tachycardia, surges, etc... really almost how I felt coming off the prednisone. So maybe it is just true withdrawal. The thing is that I talked to my psychiatrist about this and it's annoying because wellbutrin is supposed to be pretty easy to come off of - of course she's not too surprised because she knows my body reacts so strongly to drugs now. Point of this post? Has anybody else tried coming off wellbutrin and had autonomic flares? At this point I don't know if I should just go back on it to get back to "normal" and deal with the headaches or if I should try to come off. Any advice?

I hope they did a culture so they could tell what the infection may not react to. I've had that happen - a simple urine test showed I had a UTI but the antibiotics didn't fix it until the culture came back and we could target the "right" antibiotic. Good luck!

Definitely keep your compression hose on - I did it all summer. I use thigh highs so I ended up buying some longer board shorts (the kind of shorts that dry really fast) to wear over them and some water shoes. I had no problem getting them wet - I just tried to keep the same pair going to the beach because I figured the salt water would do a number on them. Also - get an umbrella. It's amazing how much those help w/ the shade and cutting down the temperature. Especially one that has a higher UV rating. One thing I learned the hard way though was that I needed to drink all the time no matter what. There were a couple of times it was really windy and I didn't feel hot. Well my body still got slammed...so make sure you stay hydrated!

jjh Have you spoken to your docs about decreasing your dosage and seeing if you still feel a benefit? Maybe you can find some balance.

Do a search on "mestinon" to find other threads on this drug. I don't recall seeing things about weight loss but I'm curious why you think this is happening...is your gi tract on superfast mode?

Hi Jacquie - Are you still seeing Dr. Novak or are you at the BI now? Dr. Novak has me on mestinon and right now I'm on 20mg/20mg/15mg..building slowly. I started out higher but didn't do well and I hated breaking the pills into smaller doses so I take the liquid form. Originally he wanted me to get to 60mg 3/day as that was the "normal" dose but I didn't fare well with starting @ 30mg. I do find that it helps - particularly when I'm having a really bad day I notice a difference on it. Oh and as a side note to GI side effects - for me they are welcome since I have constipation issues. But I do notice that everytime I increase my dose I get some looser stools and go more often for a couple of days and then it settles down.

Yeah I'm really scared about coming off - because we are going to go very slow which is good but no matter what I do a crash is going to be unavoidable and since we'll be going slow it could take months.... mkoven do you remember how much you went down by?

I'm on 20mg of prednisone right now but started at 60 - I had weird dizziness/vision issues at first. Right now I don't know what's what - what's ans problems and what is prednisone problems. I am having a HORRENDOUS time lowering from 20mg...even to 19mg gives me terrible ans flares...so I've been putting it off since I've been on vacation. But I see my doc on the 8th and know we're going to have to get me off this....I am just not looking forward to it. Anyway, I think it is possible to get all sorts of weird reactions to this drug - it is powerful stuff. And every time I've called my doc with some weird thing - like getting really shaky, anxious or angry..he is not in the least bit surprised. Thinks that the autonomic issues make it all unpredictable.

Julie, You re the second person who has recommended IMT - I'm very curious as to your experiences with it and why your dr. recommended it. Thanks!

Momdi, I'm curious what research is now showing that mestinon might not be that helpful. Which doctors/hospital did you hear this from? Thanks!

Given your asthma and sensitivities to drugs I would be very hesitant to start out that high on Mestinon. 180mg 2/day is a big dose. My doctor had wanted to eventually GET to 60mg 3/day. I have a hard time w/ drugs so I take the pediatric dose - which is a syrup - that way I can break it up into smaller amounts. I am on 20mg 3/day now. I always think it can't hurt to start slow. Good luck.

I take Mestinon but at a much lower dose - right now I'm at 20mg 2/day. I have had to even build up to this amount - my body reacts strongly to things now so I am building up slowly. If you think it was helping somewhat maybe you can talk to your doctor about a different dosing schedule. Maybe less, more often? I also take the liquid form because it's easier to get smaller doses that way than in the pill form.

Tearose I see you are from New England. Which area would you be forming a group in?

Do a search on "mestinon" and you should find some posts about this drug. I take it and am doing ok with it but am on a much lower dose than others. Good luck!

Maxine, Good luck - you are in my thoughts.

Katherine, I'm just catching up now but wanted to send my well wishes. Hope everything is going ok.

Thanks for the replies. I do wear stockings and have been wearing them as usual so I don't think that's it. I took a Fiorcet (after advil didn't work) and it hasn't even touched it! Thinking about taking another before bed....maybe it's just some weird virus or something and it will be a couple of days. Thanks!

Over the past few days I have been getting these headaches that really are at the top of my head. The first day (Thursday) advil took the pain away somewhat but today it is doing nothing for me. I haven't been able to take a Fiorciet because I'm taking care of my daughter and that will make me sleepy, but I don't even know if that will cure it. It doesn't sound like a tension headache to me so I'm curious if anybody here knows what a "top of the head" ache is from.

MNSue, So did you not test positive for the AChR antibody?

Meg, the side effects you mentioned are things that I have read about and what makes me nervous to try it - IF my doctor suggests it. Melissa - did you have a rough time with it?