Hoppy wrote on Feb 22^nd, 2016 at 7:04pm:


Why the snarky comment? What do you want me to say? That it's more dangerous than my research is telling me it is, without any evidence? What the heck do you want?

Anubis wrote, maybe there are variations of CH that we need to identify?



Primary Headaches That Resemble Cluster Headaches

Cluster headaches are a type of primary headache. A headache is considered primary when it is not caused by another disease or medical condition. Other primary headaches that resemble cluster headache include:
Chronic Paroxysmal Hemicrania. Chronic paroxysmal hemicrania is very similar to cluster headache. It causes multiple, short, and severe daily headaches with symptoms resembling those of cluster headache. As compared to cluster headaches, the attacks are shorter (1 - 2 minutes) and more frequent (occurring an average of 15 times a day). This headache is even rarer than cluster headache, tends to occur in women, and responds to treatment with the anti-inflammatory drug indomethacin (Indocin, generic).
Hemicrania Continua. Hemicrania continua occurs mostly in women. The pain, which can range from mild to severe, occurs continuously on one side of the face. Periodic attacks can last from days to weeks, and may resemble migraines. It is usually treated with indomethacin.
SUNCT Syndrome. SUNCT syndrome (short-lasting unilateral neuralgiform headache attacks with conjunctival injection and tearing) causes stabbing or burning eye pain that may resemble cluster headaches, but attacks are very brief (lasting about a minute) and may occur more than 100 times per day. Red and watery eyes, sweating forehead, and congestion are typical. This rare headache is more common in men than women and does not respond to usual headache treatments.

Causes

Cluster headaches, like migraines, are likely due to an interaction of abnormalities in the blood vessels and nerves that affect regions in the face.

Abnormalities in the Hypothalamus

Evidence strongly suggests that abnormalities in the hypothalamus, a complex structure located deep in the brain, play a major role in cluster headaches. Advanced imaging techniques have shown that a specific area in the hypothalamus is activated during a cluster headache attack.

The hypothalamus is involved in the regulation of many important chemicals and nerve pathways.

Hoppy

lancashire Lad wrote on Feb 23^rd, 2016 at 5:08pm:


lancashire lad, what research benefit would that be? I'm not a doctor. I won't get anything out of it if my treatment routine works except for the satisfaction of knowing I helped somebody. I'm not expecting anything. You can do whatever the heck you like. Don't try 5-7 days of 10,000iu D3 and 3x2 400mg Ibuprofen daily if you really don't want to, although why somebody with such a painful and debilitating illness as CH wouldn't bother to try something that simple just on the off chance it worked is beyond me. I'm just patiently waiting for any reports of the effectiveness/ineffectiveness of my treatment approach to slowly filter in. I can see from your condition that CH is but one of the medical conditions you're dealing with. If what you're already doing is keeping you 100% pain-free, then of course I wouldn't expect you to try what I'm taking. But if you're still getting CHs, I think you'd be pretty silly not to chug down some D3 and Ibuprofen as per my suggestion, just as a test. After all, neither are even prescription drugs, at least in Canada where I am, although the 10,000iu D3 dose is prescription, but 5,000iu D3 is not.

What I can also tell all of you is that it's not just my CHs that have stopped because of the D3+Vimovo. It's also done away with the arthritic (inflammatory) pain I started getting in my right hand around the time I went from episodic to chronic, and, oh what the hell, I don't care anymore about propriety, it also completely cleared up the hemorrhoids (yet another inflammatory condition) I've had since I was in my late teens that preparation H never got rid of, either. So that's 3 inflammatory medical conditions that are now gone with the D3+Vimovo.

Hoppy wrote on Feb 23^rd, 2016 at 4:05pm:


No Hoppy, I'm not talking about CH analogues, I'm talking about the possibility that bona-fide CHs themselves could have sub-variants, although I'm pretty skeptical about this right now.

Lancashire lad wrote, For what its worth Hoppy my CH attacks lasted between 15 -80 mins, 3 -5 per day. I can cope with all HA's but not CH

Peter, if I caught my CH in time in the early days with Migral, then Zyprexa, and finally using 50mg Imigran tabs, they would abort it in about 5mins, otherwise it would climb to a kip10 and then fade away in about 20mins, without meds it would last for an hour and then fade away, this would happen twice a day through the months of Spring and  Autumn, CH same time in the morning and in the arvo, and some times one would wake me from my sleep, to late for meds! I just had to ride it out  ... I went to see a bone cracker back in the 80s! It didn't stop me from getting CH's, but instead, I inherited a sore shoulder which is still with me today 

Hoppy

Hoppy

I suspect you know that shoulder pain can be associated with the trigeminal nerve or trigeminal neuralgia, I know several times in the period of few months my shoulder felt like it had been sprayed with a deep heat pain relief spray, I hadn't put anything on it or changed my med regime, very strange thing referred pain and associated symptoms.

I know you are a staunch supporter of getting the Right diagnoses a la Goadsby and Sjaastad schools. I don't agree with the emphasis on getting the diagnosis correct before treatment commences.

Goadsby and Sjaastad had a public falling out over the strict language of a particular HA diagnosis in a leading HA Journal, I wrote to both of them and chastised them saying the most important thing for me (as a patient) is to stop the pain. To his credit Sjaastad wrote back with a kind reply but I think Goadsby's must have got lost in the post.

And its the difference in our views that I suspect has held back the science, I am not over exaggerating.

The point being that in Primary (HA's) (I don't like that term either) the diagnosis points towards a set of treatment(s) that should be applied and a trial and error period of finding the treatment that brings most relief.

I know from bitter experience that my HA's probably have a single cause, even the so called Secondary one of  Cervicogenic. But the “experts” would have me believe each one needs to be treated independently.

I will repeat to emphasis my point (I'll also exclude Cervicogenic) The Primaries I have are Migraine, Hemicrania Continua and CH, for each the precise cause is not known but there is a recognised and accepted drug therapy regime(s) for each.

Not one expert can tell me that there are multiple causes or a single cause but they can offer me three different therapeutic approaches based on each diagnosis.

This is nonsense because if my HA's derive from a single source (which I am convinced they do) then the emphasis must be on tackling that problem and until they have that ability then give me some bloody pain killers that work.

An Irish neuro I came across who also doubted the established approach told me that it is such a complex subject and overlap of diagnoses that finding something that works rather than following a rigid diagnostic path is usually the most efficient method of treatment, if somewhat unacademic.

You have a pain system that has loads of different chemicals, enzymes and neuro transmitters sloshing about, nerve roots swapping pain signals and different parts of the brain looping information back and forth trying to make sense of the chaos.

Nerve Root Irritation is most likely my problem, solution remove the inflammation (with and anti inflammatory) on the nerve and deaden it by preventing it from sending messages (amitriptyline).

There are lots of other approaches many of which are involved with reducing the pressure of blood vessels on the nerve that is inflamed. This is not to be confused with neurovascular approach to the problems.

Peter

Hoppy

I am sorry to say that you have the classic symptoms of being knackered.

No hope I'm afraid.

Batch wrote, The pins and needles, like a slight prickling or crawling sensation is called paresthesia.

Does this sensation extend across your upper chest to the shoulder or is it just localized at the base of your neck?  Any shot up lymph nodes under your jaw or on the back of your neck?

Batch, just localized to the shoulder at the base of my neck to the right, I also have the same feeling in my little finger on my left hand. I'm not sure what to look for, for shot up lymph nodes.

Hoppy

Being serious for a moment Hoppy if your lymph glands have been swollen for while and you don't think you have an infection it would be a good idea to see the doc and get a blood test.

The shoulder thing could involve the trigeminal stuff but whilst you are at the docs have him check it out. If if a bad Chiro caused the problem a good one may be able to put it right but from personal experience you need to be confident that any chiro / osteopath knows what s/he's doing.

Best wishes

Peter

*** 7 month update ***

Hi all!

Still not one CH, and I mean zero. Zilch CH's since I first started this regimen. I feel like I have my life back. I can drink/have sex, stay up a bit late once in a while (though that last one is probably the most dangerous risk in terms of keeping me CH-free), all without a single CH.

I continue to take melatonin basically almost every night (though I cut the dosage down to 5mg pills from 10mg) and/or the occasional Trazadone (or half Trazadone) as a sleeping pill if I can't seem to fall asleep. I'm becoming increasingly convinced that making myself sleep deeper with the melatonin and regularly, with the occasional Trazadone is also contributing greatly to my pain-free status. I have even started to become quite cavalier with the D3, sometimes going a couple of days without taking one 10,000IU pill, and especially cavalier with the Vimovo, often going for well over a week without taking one with a D3. But I still find I feel the need to take a Vimovo 500/20mg every now and again (maybe once every week/week and a half) with a 10,000IU D3 to keep the inflammation levels in my body from building up again. Like yesterday, it had been almost 2 weeks since my last Vimovo, and I felt just the very slightest hint of a shadow, so I downed one with a D3, and that did the trick.

Still able to drink as much alcohol as I like (sometimes 2-3 beers, wine, mixed drinks, etc.) without so much as a hint of a shadow!

Hope all of you in the northern hemisphere are enjoying your summer!

Mike NZ wrote on Jun 9^th, 2016 at 9:25pm:


Thank you, Mike!