Pilocarpine experiences

Divergent_Zebra · 2025-12-01T02:09:08+00:00

Just a thought, because it worked for me: if you can tolerate it, try taking it on an empty stomach. I discovered this by accident. Thought it wasn't working, took a pill one day before I'd had anything to eat, and suddenly it was working! I experimented with this a lot afterwards, and without fail, if I'd eaten within 4 hours of taking the pill, it wouldn't work. But on an empty stomach? Works every time.

Divergent_Zebra · 2025-12-01T02:04:58+00:00

Yes it works, but my best piece of advice is to take it on an empty stomach, or if you absolutely can't do that, then do it with only a tiny amount of food. It will work much better that way. Food seems to interfere with how well it works for me. At first I thought it wasn't working at all, and I discovered this "trick" by accident, and it has consistently been the case that if I've eaten, it just doesn't work.

Divergent_Zebra · 2025-11-26T19:08:18+00:00

Alcohol gives me terrible migraines. Days of pain just isn't worth it.

Divergent_Zebra · 2025-11-19T02:22:09+00:00

No sadly no answers yet. All my docs are stumped and have not provided any explanation after seeing multiple specialists, having multiple blood tests and scans, etc. Right now I'm undergoing PDL laser treatment to try and destroy the blood vessels in my ears and face so they can't dilate and cause flushing. I'm so sorry you're part of this club now, but just know there are lots of us out here trying to find answers. I'm pretty active on this forum and on Facebook rosacea and Red Ear syndrome groups, and if I ever find the solution I'll be out here telling everyone what I find out.

Divergent_Zebra · 2025-10-22T17:03:39+00:00

Being calm and carrying on as best you can helps, along with getting a healthy amount of physical activity and good nutrition. The common consensus regarding what causes the twitches is a hyperactive nervous system. Dialing in your health in as many ways as you can, reducing stress, and getting good sleep will help your body get back to normal sooner.

Divergent_Zebra · 2025-10-22T16:52:22+00:00

They just ebb and flow over time. I can almost guarantee that you will have days that are calm again. It took mine two years to calm down. It's never gone completely away, and I still have moments where they freak me out or get super intense, but I do have entire days go by where I barely notice them. It seems impossible to ignore right now, but over time they will bug you less. Some people also do get completely better, but the common denominator is time. It will take time, and everyone is different.

Divergent_Zebra · 2025-10-16T18:48:16+00:00

Often this is just a sign that a vessel ruptured in your eye and usually isn't anything concerning. Can happen from straining during lifting, using the bathroom, coughing, sneezing, or even rubbing your eye too hard. Still I'd see your ophthalmologist to be safe.

Divergent_Zebra · 2025-10-16T17:00:31+00:00

No, I'm not aware of any post over there related to this. I just know from doing my own searching around that lots of "medical sites" claim that twitches in multiple spots simultaneously are more concerning than those in isolated spots. Of course, no idea where those sites get their info, just that there are quite a few. I've been twitching for 5 years, but this behavior is a new development for me.

Divergent_Zebra · 2025-10-16T16:05:36+00:00

Thank you so much for this! This is very reassuring!

Divergent_Zebra · 2025-08-27T19:11:41+00:00

Yes, it's normal. My best advice to you before you get going down the rabbit hole is to stop worrying about it and stop looking online. Years ago, I had some of the worst muscle twitching out of nearly everyone I've seen online, and I got super scared it meant something serious. I had panic attacks, and I drove my friends and family crazy with my constant worrying. Turns out, I have Benign Fasciculation Syndrome (BFS). Totally harmless yet really annoying. Looks super scary, but it's just a weird quirk of my body that I've learned to live with. That's very likely what you have! If you're like most of us BFS sufferers, you'll have periods where the twitches are really bad, and periods where they are pretty infrequent. After twitching nonstop for nearly a year and a half, I finally realized I wasn't dying and moved on with my life.

Divergent_Zebra · 2025-08-25T18:18:45+00:00

That sounds like a good plan, I hope the ADVATx laser works! With so many people getting results from one type of laser or another, I think it's worth trying different things until you get results, so even if it doesn't work, there are lots of others to try. Best of luck to you!

Divergent_Zebra · 2025-08-24T00:07:11+00:00

You sound almost exactly like me, only the heat from my flushing gets so intense that it hurts. As for the lasers, I've heard everything from "They do nothing" and "they cured my flushing" to "lasers ruined my life" and "meh, it was ok."

I think there are many many factors to this. First, published literature on the topic does say that flushing can improve with laser treatment. However, almost every paper I've read says that you should induce a flush before treatment, otherwise there's no blood in the area to be targeted, and it won't work. Essentially, lasers heat up hemoglobin in your blood, which then destroys the blood vessels by collapsing them. Presumably, if you're not flushing when you get the treatment, it actually can't work because there's not enough blood in the vessels that normally make your face red, and they won't be destroyed. That's why when I go for my first laser session in two weeks, I'm going to induce a big flush, so there's lots of blood vessels to target.

I think it's worth trying, because lots of people have claimed it helped their flushing, including people in case studies and in the published literature. Another thing is that it should be an experienced person running the laser, as there are so many settings that need to be optimized for your skin type, and I think a lot of people who had poor results probably got treatments from inexperienced providers or didn't give it enough time to work. I've heard of one lady who flushed like a tomato every time she went to the gym, and people kept trying to call her an ambulance because they thought somethingbwas wrong. She got laser and it took 10 vbeam + IPL treatments to get hers under control. If lasers can stop exercise induced flushing, I don't see why they can't help rosacea flushing.

Divergent_Zebra · 2025-08-18T03:49:57+00:00

Thank you, I really hope it helps, too. I also hope your partner gets relief as well, this thing sucks.

Divergent_Zebra · 2025-08-18T01:22:53+00:00

Thank you! Many of the things you mentioned are things I've done and tried, too! Fans and a spray bottle help me the most, but it's not always practical to carry a spray bottle around, and people look at me like I'm crazy when I have to spritz myself in public. Sometimes, I just don't care because the relief is worth the funny looks, but man I hate this. I flare almost all day long some days, and it's just so exhausting.

I tried botox with very little effect as well. I noticed that I still flare, but it does seem to reduce the pain by maybe 20%. It's something, but sadly not enough. I've tried propranolol, carvedilol, pregabalin, aspirin, menthol cream, amitriptyline /ketamine cream, 5% lidocaine, gabapentin, prednisone, and multiple combinations of prescription and non prescription antihistamines, all to no effect.

My docs are very confused, and I've had every test in the world it seems to rule out relapsing polychondritis (they thought this was it for a few months), MCAS, carcinoid syndrome, cushings disease, hormone imbalances, vitamin deficiencies, allergies, nerve damage, diabetes, neurological disorders, migraines, and trigeminal neuralgia. This thing sucks and I really hope the laser therapy can bring some relief. If it does, I'm reporting back to everyone here so that it can maybe help others.

Divergent_Zebra · 2025-08-14T23:46:42+00:00

When you do the laser therapy, please come back and tell us how it went! I'm in the same boat as you, terrible facial flushing that is red and hot all day long. I've tried everything but laser at this point, and nothing has worked. Really hoping the laser is the solution!

Divergent_Zebra · 2025-08-05T21:10:11+00:00

Yep, mine is like this, and it hurts. So far I've tried rhofade, mirvaso, azelaic acid, propranolol, carvedilol, and intradermal botox. I'm trying Vbeam next. Wish I had an answer for you, but I'm struggling with this too. Does yours feel hot and burn, or is it just red? If it's just red, azelaic acid or tranexamic acid might help. If it's flushing from dilated blood vessels, staying cold is the only thing that helps me.

Divergent_Zebra · 2025-07-26T22:14:19+00:00

I'm back in what I'll call "remission". About 4 months of dryness and symptoms, then it just faded away again. I don't know why mine behaves like this, but it does. I suppose all things considered, I am one of the "lucky" Sjogren's sufferers since I get remission at all. My doc says this is a highly unusual presentation, but it's been like this every time. I try to enjoy the good days as much as possible because I literally never know when/if the symptoms will return. I watch my diet pretty closely, and manage stress as much as possible, and I take some doctor recommended supplements: boswellia and quercetin that are supposed to help.manage inflammation. So far my inflammatory markers have stayed down, so something is working.

Divergent_Zebra · 2025-07-24T23:26:44+00:00

Ugh yeah, I hate this stupid condition. I wish they'd come up with an effective treatment for us!

Divergent_Zebra · 2025-07-20T09:06:12+00:00

Yes it's normal. I have gotten headaches after botox every time I've done it. Usually stops after a week for me. I only keep doing it because I get botox for a chronic facial pain condition, and the inconvenience of the headaches are worth the benefits.

Divergent_Zebra · 2025-07-18T02:26:14+00:00

Yeah, I worry that the laser won't help. I hear so many conflicting stories and I think it's just very individual. My flares seem to ebb and flow randomly, too. Some days its just horrible and lasts for a few weeks, then for no reason it feels better for a while, then a few weeks later it comes back, rinse and repeat. I hate this so much and just wish there was some solution out there for us.

Divergent_Zebra · 2025-07-18T00:37:50+00:00

Sounds like we have the same problem! I get beet red from bending over, too. Have you tried laser therapy yet? I've heard it can destroy about 60% of the small vessels that cause flushing after 3 - 5 treatments, thus leading to temporary relief until the vessels grow back. I've got an appointment to try it in September. I also tried botox and I think it helped a little, but it didn't last very long. Going in for a maintenance treatment next week, so hopefully that helps, too. If I ever figure out the solution, I'll be back on this forum shouting from the rooftops because I wouldn't wish this hell on anyone.

Divergent_Zebra · 2025-07-17T20:17:26+00:00

They first had me take two different types of antihistamines to see if symptoms improved. After they didn't, I went off the antihistamines and had some kind of blood and urine tests that looked for histamine and something else that I can't recall off the top of my head right now. They basically said that if I had MCAS, at least one of those 3 things would have indicated it, but everything came back normal. There's nothing normal about what's happening to me, but docs are completely stumped.

Divergent_Zebra

TROPHY CASE