u/WillowKings

So I have a neurological condition called NDPH (new daily persistent headache) which means I have a migraine 24/7 constant the same one from when it all started in November.

I’m also extremely reactive to meds and being tested for MCAS currently as I respond really badly to a lot of drugs.

I was put on LDN as a lot of drugs either haven’t worked or I’ve had really intense reactions- from fainting to hospitalizations to convulsions.

I was excited when reading about it and knew ahead of time there’d be side effects like all drugs. I have a pretty high tolerance for side effects and really fight hard to trial drugs as long as possible.

She started me on 1.5mg at a compound pharmacy- she didn’t want to do lower, I’ve asked twice. But taking it has really really really messed with me- I feel so incredibly sick, faint, my BP is incredibly low and my heart rate is high. I almost fainted at my doctors office- I’ve cardiology and had scans done priorly and I’m 100% fine and have no prior blood pressure or heart rate issues or family heart issues.

I feel so sick and dizzy and terrible- to the point I’m struggling eating, functioning. I feel so wrong. When I skip doses I feel better after about 24 hours. I constantly feel like when I take it that I’ll faint and almost did today during my blood draw.

I’ve told my neuro it’s helping my head but it’s so so terrible for the rest of my body. I’m already massively underweight and in threat of possible feeding tubes and I’m already pretty unfunctionable so feeling this bad feels impossible.

She doesn’t want to drop me doses and it’s a capsule like compounded capsule and ik I’ve read on here it could be the filler in it or the dose is too high- and I’m trying to figure out can you dilute a capsule?

Is it even worth me continuing to try? My neuro really really wants me on this and to try it for a month and I’m trying so hard but this feels so terrible and I do not want to end up back in the er for fainting or drug intolerance. I just don’t have the money for that or the veins for another IV with how many blood draws and hospitalizations I’ve had.

I’m chronically ill and I’m currently in a really terrible flare up and may need to be hospitalized myself given my neuro’s response tomorrow when she’s in office. The pain’s bad enough I cannot see great on and off and I’m nauseated so I’m not safe to drive- this is a typical severe flare for me not new.

My mom has cancer and she’s been by my side through all 4 hospitalizations this year already and I couldn’t fucking pick myself up to go to with her to the er. I hate myself so much- she’s my whole world and I was trying to push through and my head is just exploding and I was trying to hide it bc she’s crying and puking and in severe pain and my dad doesn’t know shit about her medical history or meds or cancer. But my dad said I couldn’t go, that it’s not safe with my health and I’m in too much pain to be an advocate for her.

So here I sit at home, panicked and guilty and sick and trying to convince myself not to get in the fucking car and drive there bc my dad is SO clueless and uninvolved in both our medical lives. I hate being chronically ill- she’s always there for me and I couldn’t go for her. What kind of daughter am I?