I am utterly confused as to what is going on in my head. On April 3rd I started getting splitting headaches, one sided, waking up at night. My doc told me it was episodic ch, me predisone, and I have done two tapers. Also got an occipital nerve block. While they did help with the the severity of the pain I still have a bad headache. I've read so much about ch but now I'm worried I may have something else wrong. For other ch sufferers do you seem to have a dull headache all day long with sudden ice pick jabs in the eye? I do not have any other symptoms like the droopy eye or nasal running. And starting yesterday I felt a jab in my opposite eye. But I'd say 95% of the time I am feeling pain In the left side of my head behind eye and top of skull and temple area.

I have a Mri In 2 weeks and a neuro appointment right after but I've been out of work and worried this pain may Never go away. I'm on the d3 for 5 days now and can't see much real improvement.

The nighttime terrible headache is gone, I'm dealing with a mostly mild to moderate all day continuous headache with jabs in my eye. My diet has been nothing but veggies and potatoes and the like. I'm just wondering maybe this is how the end of how a cycle feels? This is my first time and it's been about a month I've been doing my best but the depression is getting to me. Any advice would help.

Hello Brian,

Sounds like CH.  Many of us have had a "fiesta" brain mri to the rule out other issues.

A lot of people have variations in how the pain presents. I don't get the nighttime attacks but have two or three waves during the day that slowly build up and slowly subside with a typical 4-6 on the Kips scale. Mine last hours, when I'm in cluster i sometimes only get a couple of pain free hours a day.

I've been diagnosed and confirmed by multiple experts at Stanford.  I have other features like the alarm clock nature, nose/eye, and annual bouts.

How old are you, and where do you live?  It's critical to have access to headache doctors with deep experience with cluster, even if that's not your primary neuro. I have a local neuro with very little cluster experience, I see the experts at Stanford a couple times per year and they set the plan. The local neuro does the prescriptions

Nerv, I am 23 and live in Buffalo,NY. Luckily we have a lot of great doctors around.

I see, I don't get much pain free periods a day either. I'm 4 weeks in so if this a true cluster headache I'm praying its almost over.

I just find it odd I have no symptoms like the puffy eye or nose running.

My Mri is next week, so we can rule some things out when that's done. I haven't been having attacks which is good just this long lasting heading with the occasional ice pick jab type pain in the eye, could that be attacks on experiencing just a low pain rage?

Hey Brian,

Thanks for the update.  We all want instant relief when we start a new CH preventative...  That's normal.  In the case of the anti-inflammatory regimen, we all react/respond differently.  A few of the lucky CHers respond within the first 24 hours while the majority respond within the first week to 10 days.  Some take longer up to a month... 

This appears to be a function of the starting 25(OH)D serum concentration and quite possibly magnesium status.

The best course of action is to take the vitamin D3 with all of the co-factors.  Starting the 2-Week vitamin D3 loading schedule has also helped many CHers new to this regimen.  Many CHers have found increasing the Omega-3 fish oil by doubling the daily dose makes a difference with a clear reduction in the frequency of their CH.

Pollen is still a problem this time of year.  Many CHers, myself included, have found that taking 25 mg of Benadryl (Diphenhydramine) every 12 hours works like a charm to kick start this regimen.  Just be careful not to drive while taking Benadryl, it will make you drowsy.  If you do need to drive, take 50 mg Diphenhydramine when you're done driving for the day.

The best I can offer is stick with this regimen for at least a month after you've completed the vitamin D3 loading schedule and dropped the vitamin D3 intake to the 10,000 IU/day maintenance dose then go in for another 25(OH)D lab test.

If the CH beast is still jumping ugly at that point and your 25(OH)D is up around 80 ng/mL (200 nmol/L), please let me know...  There are a few other things to try.

Regarding the constant headache pain...  CH attacks generally have a fairly well defined start and end point with a pain free stretch in between attacks.  The exception is called a shadow.  It's a dull relatively lower level CH that never seems to go away and just hangs there for hours... I called them Klingons... 

If you've oxygen available, you can blow shadows away by hyperventilating with oxygen at 25 to 40 liters/minute. Alternatively you can try the latest method I developed, hyperventilating with air for 30 seconds followed by a very deep breath of 100% oxygen that's held for another 30 seconds. 

You keep repeating this sequence until the CH pain is completely gone.  Most CHers who use this method of oxygen therapy find relief in 4 to 6 minutes (4 to 6 complete cycles of the above procedure).

Hope this helps...

Take care and please keep us posted.

V/R, Batch

Thanks batch. As far as the shadows, I seem to be experiencing something like that all day which is why I am wondering if I am suffering from something other than cluster headaches. I don't have bad "attacks" but that may be because I finished a pred taper and it may have taken those away??

Brian,

It took nearly 4 weeks for me to get the benefit of the D3 regimen. Even at that, I still have shadows every day, and often for most of the day.

Before I started the D3,  I was chronic, that is several attacks every single day and/or night.

Where I am now is as good as it is likely to get for me, but that's 90% better than I used be.

As Batch says, stick with it. He knows what he's talking about.

Peter.

Hi Brian,
Have you tried slugging back a RED BULL or similar? the one that contains Taurine, this is known to alleviate shadows, also, over the counter pain killers work well in some folk.

Hoppy

Hi Brian,

This is kind of sounds like what happened to me. My cluster headaches simmered down to be replaced by paroxysmal hemicrania which eventually morphed into hemicrania continua. The pain levels are lower for the last two, but it became a case of death by a thousand cuts. My head hurt almost all the time with spikes of pain that seemed to happen at random times. It might be worth your while to ask your headache specialist (please get one if you don't have one already) about indomethacin responsive headaches. My specialist had me try it and the pain levels went down considerably after about three days. I'm still on it three years later and can tell when I miss a dose.

There are some stomach issues that may occur with this drug, just so you know. I personally have experienced none of them, but there are OTC meds that evidently can help if your stomach takes issue with the indomethacin.

I still have the occasional poke in the eye, but life's a lot better than it was.

I hope you find peace from the pain.

Hi Brian. I felt compelled to reply to your original post as soon as I saw it. Your situation seems to be EXACTLY like mine. I could have wrote it myself. I experienced my first official CH this year on February 5th and I have not stopped having them since then. BUT in between attacks, I have this constant, dull, achy feeling in my head and behind my eye. It almost feels like an internal bruise leftover from the major headache that was there previously. The residual pain is bearable and I can function but its just annoying enough to piss me off. I, too, am hesitant to say this is CH only because I do not have an absolute cut off point in regards to the pain after the headache is gone and I have only ever experienced one headache every 4-5 days, never a "cluster" on the same day. Needless to say, I am starting the Vitamin D3 regimen, my vitamin D level was 18 and I am trusting that it will be beneficial overall, not just for the headaches. Feel free to PM me if you would like!  :)

Hi there,  Whenever I have had a CH attack, it's usually followed by an "ordinary" headache ( my favourite kind)  which will stay with me all day if not treated. But I can usually take care of it in a couple of hours with a couple of doses of over the counter pain relief tablets.
I thought it could be rebound headaches from the CH meds, but I often don't use any now as I have 02.

Not every one gets all the symptoms, so the fact that you don't have a droopy eyelid etc, doesn't necessariliy mean it's not CH.  But, there are many other nasty "headache" types that mimic CH, but are something entirely different. They all respond to different meds which is why the correct diagnosis is vital. I spent 5 years taking nasty drugs for conditions that I didn't have, because I was undiagnosed.
To finally get the correct diagnosis - a name for it - and the correct meds which actually worked, was such a relief.
The MRI will put your mind at rest, then it's down to your neuro to sort out what headache type you actually have.
Maz.