Friday, July 1, 2011

Cluster Headaches - CH Syndrome

 Update June 2011 - So we are out of remission of 3 years, sigh.  We are finding one thing that might be helping - Fenugreek pills - 4 pills every four hours. You can do 6 pills or more if you like. This keeps all congestion away.  Then with Sinol, and a special rubbing technique, they are not as bad and they are short.

2012 - Gluten is also a known substance for causing all kinds of havoc in the head.  Its a protein that if it gets in your bloodstream, it can lodge in your head, and depending on your dna/genetics, it can cause many issues.  My husband is mainly gluten free now, and rarely gets headaches of any kind.

2014 update - He has been gluten free for over 2 years now, and he has been in remission for that long as well.  Try making gluten free a part of your lifestyle!  Google Paleo for autoimmune diseases and it might really help you!

There are also many essential oils that can at least help somewhat.  Frankincense is considered especially helpful.  There are also many blends that might help from all the different companies.  Try Native American Nutritionals, Butterfly Express or NHR oils from England (the best in the world).

Update November 2008:
Well, this year we have successfully staved off 4 beginning ones by using this combination. Thought I'd pass it along:
2 Hawthorne pills
2 Cool Cayenne pills
2 Omega 3 1000 mg pills
washed down with Yogi tea's Calming tea combined with yerba mate and other green teas
I've also ordered Sinol - a nasal spray with capsaicin pepper - its suppose to be very promising. We shall see.

Sinol update: This is the best thing we've tried. So far its stopped at least 3 from forming, and seems to have cut short several. Following the directions is useless though - He usually does it twice, then blows his nose, then does it again five more times or so. Then 20-30 minutes later if he's in the middle of one, he'll use it again several times, and will continue to use it intermittently until the pain is gone.
*legal precaution* - I am not a doctor nor do I advocate using a product more than what is recommended. This is just an experience-sharing and what works for him.

For those who suffer migraines: Cluster headaches and migraines are completely separate.
Here is a great resource for migraines:
Spearmint: A new natural anti-migraine remedy

Here is a list of homeopathic remedies for migraines: 

2007:  To our friends and family:
Kevin is a seven year sufferer of cluster headaches. *Thankfully* he is an episodic sufferer, and gets them for six weeks in the fall/winter. One of the hardest parts is waiting for them to hit, and praying that they won't. They are very debilitating, and very depressing for him, so if you could cheer him up, give him a call, whatever, that would be great....If he has to leave in the middle of an activity, then at least you will know why. Most people don't quite understand what cluster headaches are, so the following is a great letter that explains it.

From the website:

As we all know it is very difficult to explain what it is we go through....
Many look at us as if there is no way in hell something can be that debilitating.

Here is a letter that you can give your employers, colleagues, professors, fellow students that will explain in very simple language what it is that we go through.
How CH is a misnomer!!

It is known to us as "Simon's Letter"
Simon is a UK CH'er who had the wherewithal to develop this perfect letter.

Here are some helpful websites on Cluster Headaches:

The episodic type, the most common, is characterized by one to three short-lived attacks of periorbital pain (Fig. 6-1) per day over a 4 to 8 week period, followed by a pain-free interval that averages 1 year. The chronic form, sometimes called chronic migrainous neuralgia, which may begin de novo or several years after an episodic pattern has become established, is characterized by the absence of sustained periods of remission. Each type may transform into the other. The cluster syndrome is genetically, biochemically, and clinically different from migraine; propranolol is effective in treating migraine but has not been shown to be effective in cluster headache. Lithium is beneficial for the cluster headache syndrome and ineffectual in migraine. Nevertheless, the two disorders occasionally blend into one in occasional patients (Solomon, 1986), suggesting that their mechanisms bear some degree of commonality.

What we have used in the past that sometimes works (most-times doesn't)

Taurine - in energy drinks - Red Bull

Magnesium supplements

Homeopathic pain relievers - Calming tonic, arthritis pills, etc - can lessen the peak

Benadryl - can sometimes knock him out


This year, we will be trying the above, plus:

a good quality magnesium supplement

Acidoliphilus and a good multivitamin like Garden of Life (at least it will keep him healthy when the pain hits)

and we might try Ambrotose or some type of glyconutrient.

*suggestions are always welcome
*we have no access to oxygen and have yet to try that route


Murdock Scott said...


As a 17 year cluster suffer I am hoping for your continued success with your regimen. I have tried several parts of it individually, Like the Sinol. (I found it pretty useless myself, but everyone is different)

Knowing what people with Clusters (and their loved ones) go through, I just wanted to say that I understand.

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cluster headaches are worst painful type of headache.Migraine belonging in cluster headache.