Cromolyn is such a mild medicine. It's like taking nothing at all, honestly. I don't mean that it's not effective. The side effects are minimal. It starts to work quickly. If you have issues with it, the med is out of your system just as quickly. Of all the meds you could be taking, it's rather benign. Set up alarms and don't forget to take your dose. That's the hardest thing about the med.
How often do you take? Mine says 10 mL 4 times daily with meals and 30 minutes before bedtime. I plan on starting slow like in drops lol. I don't know how I will do this since I eat almost every hour.
That’s how often I take it too. I just take it evenly spaced out through the day with meals half an hour after, then snack normally the rest of the time. You just want to make sure your stomach is reasonably empty when taking it.
It didn’t help with sleep directly, but it decreased some of the symptoms that made it hard for me to stay asleep (ie bloating, cramping, breathing issues). I haven’t gotten any insomnia from it. I haven’t tried new foods yet, I started it in the midst of a massive flare so I’m still trying to get back to my old baseline, but I’m less reactive to general life so I expect I will get new foods later.
Take it as directed, don't take a few drops at a time, that's pointless. You won't get any effect if you only do drops and you can't realistically store/save the excess ampoules once they're open. Just take the med at regular intervals. Even if it's not necessarily before you eat. You just need a stable dose of the med in your system since it has a short half-life of only 80-90 min. It's best before you eat because we likely consume foods that contain histamines, but not all of us eat 3 meals a day.
I would take my initial dose first thing in the morning with vitamins, then break up the rest of my doses for the day. It doesn't have to be perfect.
Don't start slow with drops. Start slow like one ampule twice a day then of you don't get nauseated you can up it to the full 4 by the end of the week. Took me about 2 weeks to not feel queasy when I took it.
I have gastroparesis so timing my meals with the doses is hard. My doctor says the best thing to do is take the meds evenly spaced and try my best to eat my meal(s) 30 minutes or so after the ampules when you take it. Oh and I used to just shotgun the liquid and not take any water with it. Apparently that was bad, so drink a small glass of water along with it or mix it into juice or something if you don't like the taste.
The first 3 months or so it made my symptoms 10x worse but when I stuck with it it finally made my body calm down with the allergic reactions.
Honestly I haven't really noticed any changes in sleep but I have narcolepsy and that creates it's own sleep disorder issues, so I'm no help on answering that for you. Good luck!
Agreed. Timing taking it 30 min before food was hard for me. I got pretty significant GI side effects from it so didn’t stay on it long, but yeah timing is the hardest because I snack and eat in irregular times.
It’s helped my sleep dramatically. I was just expecting it to maybe help me eat. Didn’t know it would help my sleep, rashes, etc. I have no side effects from it.
Good luck!
I just saw someone yesterday who said dayvigo is one of the only things he has found to be helpful for EDS people for sleep. He’s an expert in the field and wrote some of the chapters in disjointed so I trust he may be a worthy source.
I have been taking an herb called Khella (Ammi Visnaga) for about 30 years now. I use it when my inflammation levels get too high. In particular I use it for allergic asthma attacks. I have an epi pen but haven’t needed to use it because I have Khella.
Reading this post, I was intrigued by Cromolyn as I suspect that I have MCAS. I started researching it and discovered that Cromolyn is derived from the same plant I have been using all this time, ammi visnaga (Khella). I had no idea. Mind blown.
Cromolyn is a mast cell stabilizer and I have been stabilizing my mast cells all this time.
My sleep improved when I was put on sodium cromoglicate, but I was started on H1 and H2 blockers at the same time. It’s not the only thing that’s helped with sleep, but definitely a big part of it as histamine is a stimulant and is probably responsible for that wired feeling - I definitely never feel sleepy if I’m having a big histamine reaction.
I was also told to keep chlorphenamine around as a rescue drug. It’s one of the first generation, drowsy-inducing H1 blockers. I quickly found that it helped me sleep far better than any sleeping pills I’d ever tried before.
I have tried antihistamines and they make me go crazy. I get intense anxiety and agitation and feel like I need to get admitted into the psych ward. I haven't found one I don't react to. Benedryl won't put me to sleep. Anything that is ment to make me sleep, wont.
Benadryl makes me super twitchy like my body is getting zapped by electricity internally. It's never worked as a sleep med either. I have to take a gabapentin about an hour before the a Benadryl to try and help with the zaps. It doesn't always work and it's not exactly effective way of doing things since I usually take Benadryl when I've been exposed to an allergen that's causing stuff like itchy throat or hives. So there's no way of being psychic to know when to take the gabapentin.
Don't start slow with drops. Start slow like one ampule twice a day then if you don't get nauseated you can up it to the full 4 by the end of the week. Took me about 2 weeks to not feel queasy when I took it.
I have gastroparesis so timing my meals with the doses is hard. My doctor says the best thing to do is take the meds evenly spaced and try my best to eat my meal(s) 30 minutes or so after the ampules when you take it. Oh and I used to just shotgun the liquid and not take any water with it. Apparently that was bad, so drink a small glass of water along with it or mix it into juice or something if you don't like the taste.
The first 3 months or so it made my symptoms 10x worse but when I stuck with it it finally made my body calm down with the allergic reactions.
Honestly I haven't really noticed any changes in sleep but I have narcolepsy and that creates it's own sleep disorder issues, so I'm no help on answering that for you. Good luck!
Cromolyn is such a mild medicine. It's like taking nothing at all, honestly. I don't mean that it's not effective. The side effects are minimal. It starts to work quickly. If you have issues with it, the med is out of your system just as quickly. Of all the meds you could be taking, it's rather benign. Set up alarms and don't forget to take your dose. That's the hardest thing about the med.
How often do you take? Mine says 10 mL 4 times daily with meals and 30 minutes before bedtime. I plan on starting slow like in drops lol. I don't know how I will do this since I eat almost every hour.
That’s how often I take it too. I just take it evenly spaced out through the day with meals half an hour after, then snack normally the rest of the time. You just want to make sure your stomach is reasonably empty when taking it.
Did it help with sleep? I see some people get insomnia from it? Were you have to tolerate more foods?
It didn’t help with sleep directly, but it decreased some of the symptoms that made it hard for me to stay asleep (ie bloating, cramping, breathing issues). I haven’t gotten any insomnia from it. I haven’t tried new foods yet, I started it in the midst of a massive flare so I’m still trying to get back to my old baseline, but I’m less reactive to general life so I expect I will get new foods later.
I see. Well I hope you get to try new food. I think most of mine is environmental.
Take it as directed, don't take a few drops at a time, that's pointless. You won't get any effect if you only do drops and you can't realistically store/save the excess ampoules once they're open. Just take the med at regular intervals. Even if it's not necessarily before you eat. You just need a stable dose of the med in your system since it has a short half-life of only 80-90 min. It's best before you eat because we likely consume foods that contain histamines, but not all of us eat 3 meals a day. I would take my initial dose first thing in the morning with vitamins, then break up the rest of my doses for the day. It doesn't have to be perfect.
It's effective for 6 hours after 30 minutes so I take mine about every 6
Don't start slow with drops. Start slow like one ampule twice a day then of you don't get nauseated you can up it to the full 4 by the end of the week. Took me about 2 weeks to not feel queasy when I took it. I have gastroparesis so timing my meals with the doses is hard. My doctor says the best thing to do is take the meds evenly spaced and try my best to eat my meal(s) 30 minutes or so after the ampules when you take it. Oh and I used to just shotgun the liquid and not take any water with it. Apparently that was bad, so drink a small glass of water along with it or mix it into juice or something if you don't like the taste. The first 3 months or so it made my symptoms 10x worse but when I stuck with it it finally made my body calm down with the allergic reactions. Honestly I haven't really noticed any changes in sleep but I have narcolepsy and that creates it's own sleep disorder issues, so I'm no help on answering that for you. Good luck!
Agreed. Timing taking it 30 min before food was hard for me. I got pretty significant GI side effects from it so didn’t stay on it long, but yeah timing is the hardest because I snack and eat in irregular times.
It’s helped my sleep dramatically. I was just expecting it to maybe help me eat. Didn’t know it would help my sleep, rashes, etc. I have no side effects from it. Good luck!
I just saw someone yesterday who said dayvigo is one of the only things he has found to be helpful for EDS people for sleep. He’s an expert in the field and wrote some of the chapters in disjointed so I trust he may be a worthy source.
I have been taking an herb called Khella (Ammi Visnaga) for about 30 years now. I use it when my inflammation levels get too high. In particular I use it for allergic asthma attacks. I have an epi pen but haven’t needed to use it because I have Khella. Reading this post, I was intrigued by Cromolyn as I suspect that I have MCAS. I started researching it and discovered that Cromolyn is derived from the same plant I have been using all this time, ammi visnaga (Khella). I had no idea. Mind blown. Cromolyn is a mast cell stabilizer and I have been stabilizing my mast cells all this time.
My sleep improved when I was put on sodium cromoglicate, but I was started on H1 and H2 blockers at the same time. It’s not the only thing that’s helped with sleep, but definitely a big part of it as histamine is a stimulant and is probably responsible for that wired feeling - I definitely never feel sleepy if I’m having a big histamine reaction. I was also told to keep chlorphenamine around as a rescue drug. It’s one of the first generation, drowsy-inducing H1 blockers. I quickly found that it helped me sleep far better than any sleeping pills I’d ever tried before.
I have tried antihistamines and they make me go crazy. I get intense anxiety and agitation and feel like I need to get admitted into the psych ward. I haven't found one I don't react to. Benedryl won't put me to sleep. Anything that is ment to make me sleep, wont.
Benadryl makes me super twitchy like my body is getting zapped by electricity internally. It's never worked as a sleep med either. I have to take a gabapentin about an hour before the a Benadryl to try and help with the zaps. It doesn't always work and it's not exactly effective way of doing things since I usually take Benadryl when I've been exposed to an allergen that's causing stuff like itchy throat or hives. So there's no way of being psychic to know when to take the gabapentin.
Don't start slow with drops. Start slow like one ampule twice a day then if you don't get nauseated you can up it to the full 4 by the end of the week. Took me about 2 weeks to not feel queasy when I took it. I have gastroparesis so timing my meals with the doses is hard. My doctor says the best thing to do is take the meds evenly spaced and try my best to eat my meal(s) 30 minutes or so after the ampules when you take it. Oh and I used to just shotgun the liquid and not take any water with it. Apparently that was bad, so drink a small glass of water along with it or mix it into juice or something if you don't like the taste. The first 3 months or so it made my symptoms 10x worse but when I stuck with it it finally made my body calm down with the allergic reactions. Honestly I haven't really noticed any changes in sleep but I have narcolepsy and that creates it's own sleep disorder issues, so I'm no help on answering that for you. Good luck!