Hi,

Sorry this is War and Peace.

I'm a 35 yr old male in CO. I have been suffering from severe headaches that vary in location, often behind the eye, temple area or back of the head. I'm epileptic and started with my own neurologist and pain management dr for neck pain (diagnosis uncertain despite extensive investigation). For about six months I've had daily moderately severe to severe headaches every day. My neurologist initially thought tension headaches and tried diltiazem , then propranolol. I've been through literally all the anti epileptic drugs for epilepsy and just can't handle them, I'd rather have the seizures. He's tried venlafaxine (efexor) and nortryptiline and a pain management doctor tried an occipital nerve block, no luck, lidocaine cream on worst spots, no luck. He tried imitrex and maxalt, no luck  I tried acupuncture, massage and peppermint oil too, no luck (See a pattern here?).  The only thing that takes the edge off is fioricet but not significantly, not sure if it just helps me sleep and forget it. having taken all the fioriocet and maxalt and tried the lidocaine cream I'm allowed,

At 4pm Sat I called my neurologist in agony and he said to go to the ER. The ER doc did an exam and ordered toradol. I told him that all NSAIDs set off my asthma. I almost saw his eyes roll and he said, "Hmmm....", but he became more attentive when I said I didn't want narcotics no matter what and ordered bloods and a CT. The end result was my ESR was mildly elevated but not significantly, CRP and all other bloods and CT were normal. The doc said he was going to start an IV and see if hydrating me more would help and a shot of robaxin to relax the muscles in my neck. After the IV ran through he asked me if I wanted some dilaudid even though I said I didn't want narcotics. I said no, because it wasn't going to solve anything when I got home. He said he could try some oxygen, dexamethasone for inflammation. A few hours later, only a minimal improvement. He said he was out of ideas to help the headache, he was prepared to give me dilaudid, phenerghan and benadryl to relax me and  get me some rest and a few days of percocet and phenerghan to get me to Mon when I could get back with my neurologist. I didn't want to be labeled a drug seeker and keep my option to return and have some sympathy so I said I'd try the phenerghan and benadryl but refused the narcotics. I felt drowsy, some minimal improvement and thought maybe I could just sleep it off. He told me that if things got intolerable, to try the ER in the next city over where they had a neurologist on call and said he would make sure that direction was in the report and give it to them so I wouldn't look like an ER hopper.

Well I was discharged at 9pm and I slept a little. By 3am things were really bad again and at 6am I took his advice and a friend drove me to the ER in next city over. The ER doc checked my bloods to make sure the ESR wasn't climbing to rule out meningitis, gave me an actual shot of imitrex and when that didn't work, said that there'd been enough messing around and he would page the neurologist and he offered me some dilaudid meantime as he probably wouldn't be in till 9am at least and would start some more fluids. I was desperate by then and said I would like to but was worried it would mask things for the neurologist. The ER doc said he would give me some fentanyl, another dose of dexamethasone and fluids and the fentanyl would wear off in a couple of hours. The headache was still there bigtime but I at least wasn't thinking about it so much with the fentanyl. A nurse gave me some ear plugs and a facecloth to cover my eyes and dimmed the lights. The neurologist got there and he ordered an MRI which was normal. He did an exam and said he was going to give me some valium and high flow oxygen for an hour to see what happened. It helped but it was still very bad. He said that he couldn't decide on an actual diagnosis, it could be migraine, tension headache, cluster headaches or something else. He said he was out of ideas but happy to give me the same shot of benadryl and phenerghan I'd had the night before, afew pills of valium, some phenerghan, percocet and I could take some benadryl at home to get me through to Mon till and he was in the same group as my own neurologist and would have him call me and see about getting me referred to the headache clinic at the medical school, but the wait would be a long one. He said one option if things were intolerable was to go to the medical school 2 hrs away to their ER and try and get admitted but their answers would likely not be much better till Mon when there were more specialists and he would write that suggestion in his consult report. The headaches are tolerable atm (As I can type!) but I can tell they are going to get worse and when they do I'll take him up on his suggestion to go to the ER at the medical school.

Does anyone have any ideas where I can start with them if I do go? It just seems docs keep guessing and throwing more pills which don't do much.

Hi Mikhail and welcome.

Sounds like you've been through a tough time trying to get a diagnosis, but from our experience over the years it seems that ER isn't the best place to get a headache issue sorted out. Most doctors, even most neurologists haven't the skills and experience to diagnose complex headaches. What you need to do is to find a headache specialist. Then you can get a definitive diagnosis which will result in a treatment plan which should work for you and your headache type (or types - it is possible to get more than one).

Hello ,i am new to this site myself.. have been getting great information from alot of people but especially Batch, please beleive him about the vit D3 regimen . I had been diagnosed two years ago with Ch but it was not the headbangers yet, i had alot of pain and delt it with well with zomig. But for the last month hell came into my life witn 24-7 head pain (shadows) and headbangers eye jaw temple pain high on the scale pain (see kip scale) . I was so lucky to have found this site ,never went anywhere else since for information. I now have my oxigene at home, i am on the vit.D3 regimen(big big help) Now i have no shadows and clusters maybee once or twice a day since 2 days. I use less imitrex injectable and i am just so grateful , really if you are a CH sufferer read, read on this site. Good luck my friend.

well things are looking up for you Mikhail .. i think you must have great Doctor , you are going the same route as i am O2 like described on the site and imitrex injection, please check out the imitrex tip, it helped to take less a day so more money in my pocket because it is not cheap , but i sometimes need to take the whole shot, you will see for yourself what works. Keep us posted have a great cluster free day !!

I get the chest pain to with imitrex and my legs and arms become like jello, like i just had a few drinks and feel relaxed. I am happy you are on the vitamin D 3 regimen, at pharmacy i just found 1000ui pills , so i took take in gummy bears form, imagine on saturday had to est 50 gummy bears  to get the 50 000 ui lol glad i found the 10 000 ui on the internet. Happy things are getting there for you

Vitamin D-3 Remedy Rocks! 3yrs CH pain free.

Hoppy.

hi the gummy bears  are vit d3 1000ui  , i hate taking pills and could not find vit D3 10 000 ui , so i took 50 1000 ui of gummy bears vit. D 3. But i did find on the internet the 10 000 . so no more gummys for me. I tried the soft gell 10 000 ui and i am on the reloading two week part of the regimen. Tried like Batch said to chew them for 5 minutes.   Gagued (not sure about this word)  , i just can't... will swallow them.