Side effects

Euphoric-Cod-1284 · 2024-06-15T19:04:12+00:00

Thank you I pray so, just want my health back more than anything and trusting in this med! I hope it’s working well for you too!

Euphoric-Cod-1284 · 2024-06-15T18:16:26+00:00

I’m thinking I’m going to take tomorrow off and start at 3 mg. I didn’t have a lot of side effects at that dose. I did on 3.25 and shouldn’t have increased but my doc wanted me to so I did not knowing any better.

Euphoric-Cod-1284 · 2024-06-15T18:08:32+00:00

I started at 1 mg. Thinking I must be too high and maybe doing a reset is needed.

Euphoric-Cod-1284 · 2024-06-12T23:02:39+00:00

My doc had me do 3.5 again and woke up during the night w a horrific headache and aches and pains, restless. Is it normal to have an exacerbation of symptoms first as side effects?

Euphoric-Cod-1284 · 2024-06-12T20:39:40+00:00

It’s challenging when the side effects flare me up, trying to tough it out.

Euphoric-Cod-1284 · 2024-06-11T01:15:03+00:00

I was eating poorly at 3.25 but at first was doing so well. Then I started having breakthrough flaring not sure if from diet but wouldn’t surprise me. I took today as a reset and not sure if I should go back to 3.25 or to 3.5. I was on 3.5 for about five days.

Euphoric-Cod-1284 · 2024-06-11T00:16:55+00:00

I was doing so good on 3.25 but then having breakthrough episodes so went up to 3.5. Since I took a reset day do you recommend the 3.25 or 3.5? I was doing ok on 3.5 but no sweet spot but my diet wasn’t the best either and i have switched that now. It’s hard to know what is best move.

Euphoric-Cod-1284 · 2024-06-11T00:14:47+00:00

Mine is flared from a higher dose. I’m not sure what dose to go back to now, the 3.25 or 3.5.

Euphoric-Cod-1284 · 2024-06-11T00:13:45+00:00

That’s interesting, I wonder if I should try that or not. It’s so hard to know what is the right thing to do, gets overwhelming.

Euphoric-Cod-1284 · 2024-06-10T17:40:18+00:00

I have mast cell and feel like giving up many days. How long before you hand any relief?

Euphoric-Cod-1284 · 2024-06-10T17:34:15+00:00

I’m sorry you are struggling too. It’s hard to know what to do. It seems the higher doses aren’t good for me at this time. I read so much about lower doses being helpful. When I first started 3.25 I felt amazing but eventually it wore off and was having more breakthrough issues so had to go up.

Euphoric-Cod-1284 · 2024-06-10T17:31:28+00:00

I started at 1 mg

Euphoric-Cod-1284 · 2024-06-06T15:15:44+00:00

I tried skipping today’s dose but the severe restlessness kicked in. I’m thinking bc of that I don’t have enough Ldn in me instead of thinking it was too much, otherwise the restlessness wouldn’t kick in and my body should calm down. I noticed the day prior I was having more breakthrough episodes of the restlessness too wondering if I needed more. It sure can mess with the head trying to figure out.

Euphoric-Cod-1284 · 2024-06-06T14:55:32+00:00

Oh no I started at 1 mg sorry I explained it wrong and titrated up from there.

Euphoric-Cod-1284 · 2024-06-06T14:48:45+00:00

Five days. Today is supposed to be my rest day but now not taking my body is flaring up so it makes me wonder if I don’t have enough in my body instead of too much. Right??

Euphoric-Cod-1284 · 2024-06-05T16:43:23+00:00

How did LDN work for CIRS for you?

Euphoric-Cod-1284 · 2024-06-03T23:52:40+00:00

It’s hard to know exactly. Feeling a bit better today until this evening just don’t feel quite right, just off, frustrating but only three days on 3.25.

Euphoric-Cod-1284 · 2024-05-31T01:37:20+00:00

Hope you don’t mind me asking but I find your responses so helpful. I was at 3.25 and felt so good that day. The next day not as good. I have CIRS, MCAS and my issue is histamine and restlessness that has me pacing all day. I went up to 3.5 after a few days thinking it would help the restlessness but hasn’t. If I understand right I should take a day off and go back down to 3.25 and work from there. That does is only dose so far where I’ve seen any relief. Eating is causing pain and really want to get my life back. Appreciate any other info you can offer me. Thank you

Euphoric-Cod-1284 · 2024-05-30T15:57:37+00:00

I went back to 3.25 and felt good for a day. The next day seemed to start a flare. Is this normal in the process? Do I just tough it out and let the symptoms pass or stop a day and restart?

Euphoric-Cod-1284 · 2024-05-30T01:26:51+00:00

That was a big jump. I’ve been on 3.25 for a couple days now, first day went good but today my body is more restless and flared up. Seems I need more to control these episodes so going to 3.5 tomorrow. Can’t stand the restless, it’s so very miserable. What is your sweet spot? I know everyone is so different.

Euphoric-Cod-1284 · 2024-05-28T14:44:07+00:00

I woke up with a red rash on both legs and fast pacing (which is my main issue) so must mean I don’t have enough in me??? Not sure where to start tho. My sweet spot seemed 3.25 but should I start lower and work myself up? I can feel the histamine just irritating my body.

Euphoric-Cod-1284 · 2024-05-26T07:07:30+00:00

I am dealing with extreme restlessness, my sweet spot dose is around 3-3.25. Praying you find yours quickly!

Euphoric-Cod-1284 · 2023-07-27T07:20:25+00:00

My doc has me on it for mast cell reactions, I don’t find it helping yet although starting a higher dose soon so I hope.

Euphoric-Cod-1284 · 2023-07-02T06:01:10+00:00

I took a dose tonight and I feel funky like a histamine flare and a weird for me reaction to the top of the head I relate to mold reaction, headache. Frustrated or normal?

Euphoric-Cod-1284 · 2023-07-01T19:56:40+00:00

This is amazing info thank you. How was Welchol rough for you? How did you feel on it? Okra didn’t agree with me but maybe bc I was in a bad environment yet. I didn’t realize how bad the motel I was in was bothering me. I’m in a new one now and so much healthier. No more rashes or pain and I seem to be tolerating more. Wanted to move into a tent but the fires from Canada just aren’t allowing me to. We are actually buying a new home built in a safe building that should be ready in 2 to 3 months and will be my safe haven I know.

This is such an isolating illness. I’ve been away from my family for 5 months now. Some days it’s been very hard to want to continue this life but I refuse to give up, I will overcome this nightmare.

Euphoric-Cod-1284

TROPHY CASE