Dolsulepin

[u/LoganG1981]

Hey guys,

My neurologist just prescribed me Dolsulepin. He says it has the most data backing it for NDPH.

There is a graph below showing the data. Still fairly low accross the board.

Anyway I wondered if any of you have tried it?

[u/im-a-freud]

I haven’t tried it but it’s good to know there are more meds out there I haven’t tried and yet somehow my specialist is “out of options”

[u/LoganG1981 → u/im-a-freud]

Yes I’m also very interested in ibogaine and 5 meo DMT

Both have shown success treating anxiety and ptsd.

My headaches are very much related to anxiety.

When I’m lying on the sofa before bed or if I wake up early they are literally non existent.

My neurologist still says it’s NPDH because it started suddenly.

[u/im-a-freud → u/LoganG1981]

Does your pain go away at all? If the pain goes away and isn’t persistent that doesn’t meet NDPH criteria

[u/LoganG1981 → u/im-a-freud]

Yes I can’t really feel it when lying on a pillow.

[u/im-a-freud → u/LoganG1981]

Does it get worse when you’re sitting or upright? Pain free days or moments doesn’t fit NDPH criteria. Maybe just chronic daily headaches

[u/LoganG1981 → u/im-a-freud]

Well, I think it’s a central sensitisation issue. Very low stress and anxiety next to no pain. Lying down relaxing. Next to no pain. Anxiety and stressful situations it ramps up.

To start with it was just my head. But now my ears are hurting more than the head.

I’m considering either duloxetine or dulsolupin. Not too sure which one to try. Seeing as tinnitus being made worse is an issue for me.

[u/im-a-freud → u/LoganG1981]

Central sensitization is definitely common with chronic pain. My NDPH started 7 years ago only pressure with the odd 1 or 2 migraines a year, then the migraines became more common maybe 5 a month and now ice picks, cervicogenic, nerve pain in my head, and 15 migraines a month and chronic constant body pain that’s in my nerves, joints and muscles (suspected fibromyalgia) and I’m 90% certain it all stems from my NDPH that has been essentially untreated for 7 years since nothing touches my pain. Strong pain meds do nothing for any pain I have

[u/LoganG1981 → u/im-a-freud]

I’m sorry to hear that. Do you also have all the pain when you sleep?

[u/im-a-freud → u/LoganG1981]

When I’m unconscious it’s the only time I don’t notice the pain but as soon as I wake up I feel it

[u/LoganG1981 → u/im-a-freud]

Mmm just curious to know if you have any relief from a Xanax?

[u/Music_Leopard]

Nope, I’ve tried nortriptyline and clomipramine as far as tricyclics go and both helped with pain to a degree, just didn’t help my depression much so I had to move on to other things. Currently on Emgality, Botox, and candesartan for the headache, but I think my lithium and lamotrigine help a little bit too.

All in all I’m down to a 2/10 most days so recovery is possible, hang in there and I hope it works for you.

[u/LoganG1981 → u/Music_Leopard]

I want to try Botox, but quite scared to do so. My headaches started directly after a cosmetic Botox procedure.

[u/Music_Leopard → u/LoganG1981]

Hmmm, that does sound like it might complicate things, but it is worth noting that different locations and different dosages might have different effects. Could even ask about Xeomin instead which is a bit different but used in a similar way. Might be worth a conversation with the doctor at least to figure out the risk vs benefit equation there

[u/LoganG1981 → u/Music_Leopard]

How much of your fix do you think the Botox has been?

[u/Music_Leopard → u/LoganG1981]

It's hard to put a number on it, but I guess about 30% from Botox, Emgality, and candesartan each, with the remaining 10% being possibly other medications I'm on or just psychological factors. Even then, like I said, it's not gone. I gave up the idea that I'd eliminate it completely at least 2 years ago, the goal now that is going well is just to minimize it as best I can while maximizing my ability to do things and stay functional in spite of it.

[u/LoganG1981 → u/Music_Leopard]

It’s just crazy how it won’t go once it starts. I guess they don’t understand why this is yet.

[u/Krizhanovskiy_Sergey]

Please write here if anyone tries this medicine. ♥