I apologise for this being war and peace.
I’m not even convinced the headaches I have are migraines. I have temporal lobe epilepsy in addition. The headaches are severe with muscle weakness, fatigue and sound makes them worse but the location varies all the time. Nausea is only there when the pain is bad and I have no visual disturbances.
My regular neurologist tried diltiazem (carvedilol), propranolol, and literally every antidepressant and I’ve been on literally anti-epileptic drug under the sun for epilepsy. I saw another neurologist who said he was a headache specialist and all he did was prescribe fioricet. It works almost every single time but I know about the risks of rebound headache and it makes me really tired. I see a pain management doctor for neck pain (Diagnosis never found despite several investigations), and he tried imitrex and maxalt with no results whatsoever, and rubbing lidocaine cream onto trigger points and putting lidoderm patches on neck with no result. He commented, “Headaches are one of the most frustrating things for you to go through and for me to treat.” I’ve tried peppermint oil too. The headaches are so regular I can tell the time by them, they happen at noon and 8pm although I may have them in between too.
On Saturday for the first time I went to the ER after trying the maxalt, fioricet to all the doses I was allowed and after calling my neurologist who said to go. The doc there said, “hmm….”, when he ordered toradol and I told him I couldn’t take NSAIDs (All NSAIDs cause me to have breathing difficulty), but when he let me finish I asked if we could try dexamethasone and I didn’t want narcotics under any circumstances he started getting more attentive, started an IV to see if rehydrating would help and ordered a CT scan to be sure there was nothing serious. After that he tried injecting lidocaine into a trigger point in the back of my neck. When that didn’t work he tried IM robaxin. When that didn’t help he asked me if I wanted to try dilaudid even though I said I didn’t want narcotics. I wasn’t sure if it was a trick question but I said no. He said that he didn’t know what more to do to actually treat the headache and but he could either give me some dilaudid, or basically make me sedated and see if sleeping it off helped. At that point I was happy to sleep, he gave me phenerghan and benadryl and discharged me, suggesting that I go to the hospital in the next city if some rest didn’t help where they had an on call neurologist.
I was desperate when I woke up after 3 hours and I had a friend take me there at 6am after trying the maxalt and fioricet again. The ER doc looked at the last report. He did an exam took bloods, noted my ESR was mildly elevated but that could be a number of things, but the bloods were normal other than very mildly low potassium. He asked the lab to test C Reactive Protein (Much later it was normal) started IV fluids, tried an actual shot of imitrex on top of the maxalt and when it didnt help, he said there’d been enough messing around, he would page neurology and asked me if I wanted some dilaudid while I waited. I was desperate by then and said I’d like to try it but I was worried it would mask things for the neurologist. He then said that he could give me some fentanyl and it would wear off by the time the neurologist got there.
The neurologist went through my history, did a neurological exam and ordered an MRI. It was normal. He discussed doing a spinal tap to rule out early warning of meningitis but said at that stage he didn’t think it was necessary as the neurological signs didn’t support it. He said he wanted to try some valium to see if some deep relaxing of the muscles helped. It helped a little but not very much, though it may have just taken my mind off it. Next he tried an hour of high flow oxygen which didn’t help much. He said he didn’t know what else to offer but he was happy to repeat the phenerghan/benadryl shots, increase my fioricet dose for today and tomorrow prescribe me a few valium and phenerghan to get some rest through the day and tomorrow and he would call the medical school tomorrow to see if he could get me referred to their headache clinic but the wait time would be a long one. I accepted that. He said he couldn’t make up his mind between migraines, tension headaches and cluster headaches but the picture didn’t fit any of them.
He said he really sympathised but he cautioned me against coming back to the ER again unless I started showing signs of meningitis (which he gave me a list of, and I’m a veterinarian, I highly doubt it is) because he didn’t think they would be able to do much for me and there would likely be a limit to how many times an ER doc would be likely to repeat the treatment I’ve been given. He said he would liase with my pain management doctor and he was from the same practice as my own neurologist and would talk to him and see if they could figure out a treatment plan in the meantime and ask my docs to call me tomorrow rather than me have to go through going there. He said an alternative option is if things are really bad later is to call him, he would call the medical school and try to get me to get admitted but that’s 150 miles away and I can’t drive there. Right now the headaches are tolerable but getting worse. I give the docs I saw at the ER 10/10 for trying and sympathy but wondered if anyone has any actual suggestions?