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Hi everyone, I haven't been here in a while, but thought I would ask about people's experiences coming off of mestinon, especially if you've been on it long-term. I've been on it for several years, I was at 60 mg 3x a day, then was on 60 mg 2x a day for a couple of years, and have been on 30 mg 2x a day for the past 8-9 months. I've been having increasing muscle cramping and twitching over the past couple of years, especially in my right leg, and I'm wondering if the mestinon isn't contributing. I also lost a lot of weight, though, over the past few years, becoming clinically underweight, so there may be some muscle wasting, too. But I am interested in trying to go medication-free, and this is my last one. I'd love to hear others' experiences with stopping this drug. Did you do it cold turkey or taper?

I understand that, and I'm not asking for medication advice. Sorry if it came across that way. I want to know if others have done this and, if so, what they experienced. I'm not looking for a lawsuit. I'm just scared and wanting to talk to others who may have been in this situation.

I can relate to this, too. It still comes and goes for me. I certainly push myself and have done so in the past. This helps immensely, because in the future you can look back and think, "Well, if I did ___, I can do this." I also wear a medical alert bracelet with my DX, med, and ICE information. I don't know how much it would help if something actually happened, but I feel much more confident when I'm wearing it.

Hi everyone, The brain fog has been bad lately for me and I think I may have accidentally taken two of my mestinon pills this morning instead of one. Although then I'm second-guessing myself and wondering if I took any at all! It happened when I was filling my pill case.. I've got to remember to put all the pills in and THEN take them, not try and take them as I'm filling it Gahh... Has anyone accidentally doubled up on mestinon? My pills are 60 mg and I usually take one in the morning and one in afternoon/evening. This would have put me at 120 mg at one time. Has anyone been told this is dangerous?

I agree with angelloz, the fewer medications, the better. What kind of food do you eat on a daily basis? I had terrible acne, and going completely gluten-free and avoiding dairy has helped IMMENSELY. Accutane is certainly a scary drug, even for people who are otherwise healthy. I haven't taken prednisone, but I was on another steroid for a bit and could not tolerate it. I'm not surprised that you are having a flare-up, but I am sorry to hear it. Your attacks sound very much like mine, and if you have anxiety, there may be a nasty feedback loop of adrenaline from the POTS triggering panic, which triggers adrenaline... I get stuck in this sometimes myself, although less lately. I take a teeny tiny dose of Xanax when the panic gets really bad. If you don't have access to that, you might want to try Natural Calm, which is magnesium-based, to provide a bit of relief. I find that cooling down helps somewhat in those intense attack situations, as does going outside if possible. Hang in there. I am really sorry to hear you are having these episodes as I've been there and I know it's awful (and that's putting it mildly). Definitely call your doctor to discuss these things.

I went completely Paleo for a bit and had a difficult time. For me, I need the grains and carbohydrates and did not do so well with higher amounts of protein and fat. I still like the science behind the Paleo/Primal way of eating, but honestly I feel better eating some bread and rice and oats, so that's what I do. Sweet potatoes and pumpkin are also good sources of carbs for me. And of course the salt and fluid stuff like everyone else mentioned And definitely coconut water! That stuff helps me more than anything else.

One thing that I find very helpful for falling asleep and getting more restful sleep is using calf compression sleeves or compression knee socks. Maybe it's the increased blood flow that helps. Whatever it is, it's my new routine! I also wear PC glasses in the evening, which blocks the blue light that can interfere with sleep patterns.

Yes, I used to have this so often. I would wake up with a surge and my body would be freaking out. Usually accompanied by bowel movements, tremors, rapid heart rate (of course), horrible anxiety/panic, etc. I do have panic disorder and anxiety, which I believe are a direct result of having to much adrenaline/norepinephrine in the system. I would get these in high school as well, and my mom and I thought they were just "panic attacks." I still have cycles of them sometimes, but they are fairly rare for me now, thankfully. I have always had vivid dreams and nightmares, too. I hope you get some relief soon. It's hard to get out of the cycle when you go to bed dreading what will happen.

If you've really been malnourished for days, it can cause a lot of stress on your body, and it wouldn't be surprising that you would get heart palpitations. Also, I don't want to be too preachy, but there is pretty much zero nutritional value in what you were eating. If you have POTS, the sodium content of the ramen might be helpful, but if it's the instant stuff, the processed nature of the ingredients and the preservatives probably make it a moot point. Might I suggest cooking some rice in chicken broth? That's a standby for me when I have trouble with my appetite, and it's quite cheap. I toss in some carrots and chunks of ginger root, too, occasionally, and when I feel I can handle more. Toast is another good one, especially with nausea issues. Salty crackers may help, or chicken noodle soup. Applesauce is a good way to get some other nutrients in there, and it's comforting when it's heated up. All the best. It will get better.

Hi everyone, I hope this kind of post is allowed. I was wondering if anyone was planning to go to the Dysautonomia Dash in Greensboro, NC on October 22? I'm planning to do the 5k run and would love to meet up with anyone else headed that way. I've never met anyone else with dysautonomia in person, so I'm pretty excited

I ALWAYS do non-epi but still had an effect the last time--although the dentist seemed slightly less-than-capable, so I'm wondering if they gave me epi anyway :/ Prior to that, before I was diagnosed, I got the epi shot and my heart rate skyrocketed and I nearly fainted in the chair, then had a lovely episode of "everything go through the gut NOW!" It was pretty awful, and, if you get tachy, it can be dangerous. Definitely discuss your health concerns with them beforehand. My old dentist was amazing and researched POTS on her own to make my experience better. I'm so sad I had to move away! Going to the dentist is even worse for POTSies. All the best!

I'm also sensitive to bright lights and fluorescent lights. In fact, I had an episode in the middle of a job interview due to the lighting (I think--although I'm sure nerves contributed to that situation) and I also quit a job previously because of the constant noise around me, the fluorescent lighting, and the bright green walls. It was altogether too much stimulation for my system to handle. I also dim my computer screen and wear PC glasses that block blue light when I'm working on the computer and when I'm in a situation where I know I'll be under fluorescent lighting or "weird" lighting. You are not alone!

I'm also going to suggest thyroid testing. Make sure she has a full panel done, because a lot of the standard checks will turn up nothing, even though so many of the symptoms match thyroid disorders. The depo is interesting. For some people, any form of birth control can make depression and/or anxiety symptoms worse. I think this has been the case for me and am now trying to do without BC after being on it for over a decade. I would also take a close look at her diet. For me, dropping gluten and dairy and refined foods made a HUGE difference. She may have some food sensitivities that are contributing to these symptoms. I went full-on Paleo for a little while and really saw improvement. You don't have to go to that extreme, but I think it can be very effective to limit anything processed or refined for a while to give the body a blank slate. This should give the body more energy to heal other issues since it isn't dealing with a barrage of other stuff to process. Probiotics, magnesium, and vitamin B complex helped me quite a bit as well. Does she take supplements?

I've found compression calf sleeves or knee socks are helpful during travel Also coconut water! And don't forget to wear sunscreen, although that's not dysautonomia-specific, haha.

Thank you Lily! I really appreciate the advice. I think you're right, my rational and emotional sides are at war right now. Part of the problem is that my job is boring and I often go on auto-pilot, and then I find my mind wandering to other things. Maybe if I find a good audio book to listen to while I work, that might help. I'm also worried that if my knee continues to hurt and I can't exercise normally, my body will become deconditioned and my POTS symptoms will get worse--yep, there goes my anxiety running away with me again. It doesn't help that I'm forced to live with my parents right now. They were watching my cat while I was overseas, and since she had the episode the day I got back, it's impossible to move her because my place is 2 hours away and the car ride would put undue stress on her. I like my mom but my dad is... not a nice person and takes everything out on me and my mom (by the way, I'm 31, not just-out-of-the-house). I can feel my mental health declining while I'm here, but there's nothing I can do since I want to protect my cat and let her live as long as possible Perhaps I should take more nature breaks or avoid being here in the evenings when my dad is here. I think I'm grieving for the "normal" life I had just 3 weeks ago. I want my routine and my running and my place and my "healthy" cat back. Sorry, I know this is sounding like a pity party here. Usually my go-to anxiety remedy IS exercise, but it's extremely difficult right now. I'll try writing things down in a journal, maybe it will help to just put it on paper. By the way, yes, I think I probably have been re-injuring it ^^; I've been exercising every day still and I know some days I overdid it--jumping jacks, 2-3 mile walks, etc. And a couple of days ago I was lifting heavy bags of rocks, which I don't think the knee appreciated. The physio said I had damaged the fat pads under the kneecap and they were probably inflamed and it would take 1-3 weeks to heal. I'm wondering if I also have a bone bruise going on in there, or, *gulp* a fracture, even though I can bear weight on it, bend it, straighten it, lift it, etc. It's just still a bit painful and continues to swell slightly on top. Thanks statesof, that's a good idea. Today I'll try monitoring how long I'm letting myself think about this stuff and try to focus on other stuff. Unfortunately there's nothing I can do about any of it right this minute, and logically I know that's reason enough to let it go for now. Tomorrow the doctor will give me more information. I'm trying to tell myself that I can worry after I find out what the issue is. I'm also dealing with guilt from not going to the doctor before this, but my mom and boyfriend just kept telling me it was fine and to take it easy, and I was trying to trust what the physio told me. And who knows, he may have been spot on and I've just been pushing it too much in the meantime. I took a meditation course in college, and I think I'm going to try to tap into those techniques today while I have a little quiet. I work online and my parents are out now, so I have a quiet house for now, thank goodness. Maybe some gentle, knee-friendly yoga, too.

Hi all, I'm having kind of a panicky day today. I hurt my knee about 2 1/2 weeks ago by falling up some concrete steps--on the first day of vacation, which was excellent timing Anyway, I was in Ireland at the time and saw a physio and, although he didn't do any x-rays, he was pretty sure about what the problem was and gave me a tentative diagnosis (he's a friend so we weren't at his office) and told me to treat it gently but normally. I did that, but it's still hurting.. I know knees take time to heal, but I'm really paranoid and want to get back to exercising like I normally do, so I made an appointment with a Dr here in the USA now that I'm back. I'm going tomorrow and I'm terrified. I'm so worried they're going to say something is seriously wrong and I need surgery, and the prospect of this is making me freak out. I've been through a tough time this year and also recently learned my cat has probably 2 weeks max to live.. it feels like things are piling up and I'm so scared of this. How can I calm down? I keep telling myself a knee injury isn't the end of the world, and even Olympic athletes and marathon runners come back from them, but I'm terrified of how my body will handle any kind of treatment. This of course makes me feel more panicky and it just becomes a vicious circle of nerves, fear, and panic! I have anxiety and panic attack issues anyway, which I know the POTS feeds. Argh! Just need to vent a bit and put these thoughts out there. I don't really have friends I can talk to about this. Thanks for listening.

I don't have any advice, but I'm wishing you all the best! Sending much positive energy your way

I have heard that coconut oil makes some people nauseous, and not just POTS people. I regularly listen to The Paleo Women podcast, and one of the hosts has this issue. She had a hypothesis about the cause, but I can't quite remember--something about the structure of the fats, perhaps. You are not alone!

That is awesome! I've also been able to increase my exercise level over the past several years, although lifting weights does seem to be tough on me, like some others. I'm a firm believer in exercising improving our symptoms (done carefully and over time, of course). He is a great inspiration for all of us!

RobinB, yes, I take mestinon 60g twice per day (morning and night), vitamin B complex, magnesium 500 mg a day, and vitamin D supplements currently. I also take Xanax when the anxiety gets the better of me--I have horrible anxiety issues. Honestly, I think I pushed myself to see how far I could take it because I had some major life event stresses going on, and I sort of became obsessive about it. I wouldn't necessarily recommend that route, although I do recommend backpacking, especially starting out slow with a group of experienced people. My hiking friends (who I met through Meetup.com) REALLY helped with exercise motivation at first, especially since several of them have their own medical issues. Good luck!

I did strict Paleo for a few months a little while back (I think I made a post about this) and now follow a gluten-free part-time Paleo plan. I have suspected for years, pre-POTS even, that I had Celiac disease, and I think going gluten-free has proven that I am, based on my results. I am at the very least intolerant to gluten. I keep grains fairly low these days still, generally in the form of brown or white rice or a gluten-free whole-grain seeded bread. I also avoid dairy besides butter. Going Paleo helped me immensely--it contributed to an increase in exercise tolerance (although my pushing at it persistently was also a huge factor), and seems to have reduced my brain fog. I still have POTSy days, but they are typically much milder compared with what I had when I was still doing gluten. I have also switched to only eating pastured eggs as I've noticed that eggs from chickens who eat wheat/grain products give me side effects. My skin is also better than it has been in my entire life. I'm 31 and struggled with severe acne, oily skin, dry patches, and dandruff since I was 10. You would never know to look at me now that I had an acne problem. I'm still a bit oily, but the dry patches have gone (except in the dead of winter) and the dandruff is mostly non-existent. I run 5k races, exercise every day for 40 minutes to 2 hours, go on multi-day backpacking trips in the mountains, do yoga, lift weights, do HIIT and Tabata classes. I eat very clean. My diet is a lot of the same stuff every day, but I'm a routine-oriented person so this actually works out well for me. I recommend the Balanced Bites podcast, the Paleo for Women podcast (also applicable to guys!), the book Practical Paleo, and anything by Chris Kresser. I even considered seeking an NTP certificate because of the changes this lifestyle has brought me

Definitely talk to your doc about it to rule out anything more serious, but it can be a common side effect of POTS. I get it from time to time, although it's a very dull pain and usually goes away quickly. I did a heart ultrasound, EKG, ECG, and 30-day halter monitor to rule out other causes of my various heart symptoms, though.

I hope you're feeling better now. I'm having one of those days today. My brother got married yesterday and I spent the three days leading up to it helping out and running errands, and my adrenaline was super high. I also overdid it on the dance floor, which was so much fun, but I'm really regretting it. Today I'm crashing bigtime and feeling like absolute garbage. I'm so nauseous and having palpitations and my energy level is zero. I wish there was a way to speed up recovery, but the best thing I know to do is rest and wait it out. Is there any food that sounds appetizing to you during these times? I can't stand the thought of food, but I hate to skip meals because I'm underweight.

It's so frustrating to get the "It's all in your head" non-diagnosis. I know many of us on this forum have been there--I can't tell you how many times I've been told "Just calm down. Just do deep breathing. Try meditating and you'll be fine. Just do ____ and you'll be 100% OK!" But you know your body, and it certainly sounds like it is not all in your head! I agree with those above who have suggested the TTT. For me, it was a smoking-gun POTS diagnosis and also gave the doctors insight into other issues I have, such as neuro-cardiogenic syncope. Best of luck finding someone who knows about dysautonomia in-depth.. I wish I could offer some names, but I'm on the other side of the pond. Distance aside, though, I'm rooting for you.

Below 120 is awesome! It's a good day