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.

Mikhail,

This sounds like another cluster headache horror story...  Have you tried a prednisone taper?

The next time you see a neurologist or go to the ER ask for the lab test of your 25(OH)D.  This is the first metabolite of vitamin D3 that's used to measure its status.

The normal reference range for the serum concentration of 25(OH)D is 30 to 100 ng/mL.  In over five years, cluster headache sufferers with active CH who go in for this lab test average less than 30 ng/mL.  As CH'ers we need to keep our serum 25(OH)D up around 80 ng/mL.  That will require a vitamin D3 dose of 10,000 IU/day plus the cofactors.

If this is the case with you, start vitamin D3 repletion therapy at 10,000 IU/day.  You'll also need at least 400 mg/day magnesium, 12 mg/day zinc, 1 mg/day boron and vitamin A (retinol) at RDA.

Scroll down the first page of the following link for the complete anti-inflammatory regimen. 

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Better than 80% of the CH'ers who start this regimen experience a significant reduction in the frequency, severity and duration of their CH...  60% experience a lasting pain free response as long as they stay on this regimen.

Check your PM inbox at the upper left corner of this screen below the date.  Click on the bold words "You have 1 new email"

Take care and please keep us posted,

V/R, Batch

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).

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
======================
LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

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.

Thank you guys for the info. Today the headaches are moderate, evidenced by my typing being fine.

My neurologist said he has no issue writing scripts for the VIT D3 at the 10000  suggested and write scripts for the minerals and Vit A suggested, if not covered I'll get them over the counter.

It so happens my vit D3 was measured for other reasons six months ago by my Primary Care Doc, it was 12, he started at 10000 a day and tapered it down to 2000 a day, 2 weeks ago the level was 18, which he had said was fine.

I actually was on long term prednisone for Addison's Disease (Adrenal Gland failure) I was switched to hydrocortisone and the doses were significantly lowered, and thinking back, that's when the headaches started. Curiouser and Curiouser...

I called my endocrinologist to discuss and he is happy to do a prednisone taper and keep me on maintenance prednisone instead of the hydrocortisone.

My neurologist called the med school (Seems all the specialists listed on the sites posted are affiliated with the planned clinic at the med school to refer me to anyway.) They said they have a lead time of three months, put me on a cancellation list but next time things are severe, if I go to the medical school ER before 6am on a weekday, and they do their initial workup to rule out life threatening causes, they will try to get me seen before their clinic starts. Meanwhile they suggested oxygen therapy and imitrex shots to see what response there is. My neurologist is happy to prescribe that, he's just never prescribed this and doesn't know if my insurance (CIGNA) is going to approve it.

Thank you guys again.

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'm blessed in having a great neurologist. Before him every doc said I was faking my seizures since I was 12. I was having three seizures a day. After seeing my new doc he did some more specific EEGs and found I had temporal lobe epilepsy which rarely shows except during a seizure and needs special EEGs to detect it normally. He referred me to a neurosurgeon who implanted a Vagal Nerve Stimulator which stopped the seizures. Its relatively recent as a common treatment for epilepsy, and he told me if these are clusters its possible to adjust the stimulator to help treat them but that would be the realm of the headache clinic at the medical school.

My insurance approved the imitrex and I got it in vials.  I called my doc after getting chest pain after the first shot which happened when they gave it to me at the ER too. He said the same as the ER doc, that's not unusual in people who haven't used the shot before, and without other signs of cardiac problems its probably okay. The insurance company said they need something written from him for the O2 so waiting on that but he has already filled out the paperwork and faxed it. I started on prednisone and vit D and the other minerals/vit A suggested.

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 :)

Vit D3 and all the other elements of Batch's D3 regimen can be got on iherb.com     They post worldwide and the prices are very reasonable. A lot of us CHers on this site purchase our regimen on iherb. The vit D3 can be got at 10000iu per softgel

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

Hoppy.

shadia wrote on Sep 15^th, 2015 at 1:06pm:

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 :)

I've just read your other post about imitrex and weight gain. Eating 50 gummy bears might not be the best idea, especially if they are full of sugar!

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. :o  Gagued (not sure about this word)  , i just can't... will swallow them.

I am not a doctor, never played one on TV, and I have no medical training, but.... am I the only one who noticed that:

- Imitrex injection didn't provide immediate, noticeable relief?
- High flow O2 didn't help (even at likely low flow rates)?
- Pain center is in different places?
- Timeline looks very long for CH's?

Mikhail, your symptoms present as complex headaches - that's why nobody is nailing them with a "name." You are wise to avoid the narcotics, because temporarily masking the pain will not help find the root cause.

If I did play a doctor on TV, I would want to see an MRI with an MRA layer to start a differential diagnosis by ruling things out.

Some Neuros are headache specialists some are not. You need a good specialist at this point. 

Just my 2 cents in world where pennies are worthless.

Marc