Many CFS/ME patient use low dose naltrexone (LDN) with some modicum of success. You start at a 0.5mg dose and slowly work your way up to 4.5mg in 0.5mg steps. I've been excited to try this med since I first heard of it a year or so ago. I even got a scrip from my now retired CFS doc but it was for 1.5mg which caused me sleep problems. When I went to see my new CFS doc (whom I'm not going back to but that is another story for another day), I talked her into giving me a scrip for 0.5mg dose.
Last week I tried my first pill. I took it just before bed. I then slept for 8 or so hours and woke up with "one of those" headaches that I knew would escalate as the day went on. Sure enough it developed into a migraine.
Now, I'm not new to migraines, having suffered from them on and off for 30 years or so. However, I have an odd type called ice pick migraine due to the fact that the pain is a sharp stabbing pain in the side of my head. I usually have them just over my right ear but occasionally have a milder version over my left ear. These are excruciatingly painful but I very rarely get nauseous from them and never have aura. When I first came down with CFS/ME my migraines became a regular monthly visitor and I had to start Celebrex to control them and my daily headache. Apparently the CFS migraines were linked to brain inflammation. Anywho.....
The LDN migraine was totally different. It was along my occipital ridge at the base of my skull. As it intensified the pain spread around to the front of my face and involved my jaw and teeth. Instead of it being a stabbing pain this was constant. As the day wore on it escalated to the point of photosensitivity, sound sensitivity and full blown nausea. I skipped all my first line defenses of magnesium +B6 doses with a side of espresso, and the Excedrine migraine meds and went straight for the Tramadol and ice packs. This controlled things enough that I could lie down and binge watch Elementary which has more dialog than flashy action sequences.
For the migraine day and the following migraine hangover day I stopped all meds and supplements while my system calmed down and returned to "normal". I got on the LDN facebook group and started asking questions. The basic answer I got was "oh yeah, that is normal. Just tough it out and keep taking the LDN. The headaches will go away in a couple of days." They must have missed the migraine part of my post. This was hands down the WORST migraine I've had in decades. There is no "riding this out" or "tolerating it" until my system acclimates to the new med. It is simply just too painful.
So now I'm scared to take it again. They told me to titrate it down to a smaller dose. Other than cracking a capsule open and using a wet toothpick to pick up the dust, I'm at a loss as to how to reduce my dosage further. I would love for this to work for me. I really really want it to work for me. At what point are the side effects bad enough for me to give up on something entirely? So the bottle is on the kitchen counter, mocking me daily. Daring me to try one more time. Was the migraine a fluke or was it really induced by the LDN? Can I reduce the headache intensity by reducing the dosage even more? Why didn't I get a headache with the higher dose? I need to pick a week that I can lose to pain and recovery before I can try it again. Right now I'm just plain too scared. It f'n hurt!
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