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didgens

So my son's Jan/Feb cluster period is here now

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found his O's tank in his bedroom sunday morning.   Here's an interesting thing about it.  The night before I smelled something VERY strong in his room ,, it was nauseating ,, I realized it wasn't emanating from his room .. but actually was something Outside ??!! in the neighborhood,, I told my son and he said to shut his windows.. In the morning ( the morning of his headache) I could still smell it, some friends came over to go for a hike with me and one mentioned that it smelled like Bark ??!!  I don't know what it was ,, I walked around a few neighbors homes but I couldn't find what it was ,, I know they were trimming hedges around the corner ?? maybe a pesticide ?  im definitely going to pay attention to this in the future

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I also noticed either that day or the day before the city gardeners were trimming all the public area hedges.. I believe CHF posted a link here about a man that would get CH's when exposed to a certain flowering tree ? or bush ? if im not mistaken.  I don't know if the pungent smell might have been given off from the chain sawed hedges ? or some fertilizer they put on the grass..

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I seem to be posting on my own post .. anyway for those that missed it .. here is the link that CHFather first posted.. im going to go around the corner and break off some of the branches I saw them "chain sawing" as state garderners will do to public areas and see if that smell that was so pungent and coming into my sons room was in fact this plant. 

http://www.oregonlive.com/health/index.ssf/2010/03/oregons_suicide_headache_tree.html

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Well if anyone is going to find what explains things by hook or by crook, it's going to be Didg.  8-)

This is most likely entirely unrelated, but your first post and its mention of a bark smell reminded me about how I smelled a strong "diesel fumes" type odor coming from somewhere in the neighborhood once, only to find that it was actually a bunch of decorative bark that had been laid down, and for some dumb reason, I mistook its natural smell for toxic fuel fumes (!?).

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didgens,

What if you brought a piece home?

I would not want to give someone a cluster, but in the desire to find a trigger, I would break it open and crush and sniff to see if it affected me. Now, that's me.  :o Any trigger that I can ID for sure gives me one more weapon in my arsenal.

With chain saws, you have odors from the gas and oil both. For some, that can be a trigger. Then add the sawdust which floats around and is aromatic itself to the mix. Diesel is a trigger for some, like paint thinner is. Diesel smell that Jeebs mentioned would come from the making of the mulch - the grinding method.

Just trying to throw out ideas that might help track down the actual trigger so he is not having to be too restrictive in his young life.

I know one sufferer can smell blacktop in the air and get an immediate hit. He catches the slightest hint and detours around it to avoid a hit.

Hope the odor is gone today and your son had a good night!!

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Hi Spiny, CHF, Jeebs ,, well I must have looked awfully odd to my neighbors walking around sniffing the plants in the neighborhood yesterday.  I walked around the corner to the sidewalk that borders the neighborhood and started smelling crushed leaves ,, stems etc from the bushes they just trimmed to no avail ,, I could not replicate the smell that overpowered the neighborhood Saturday into sunday.  I was actually going to ask my son if he would be willing to risk bringing on a CH with a smell test but I never found the culprit.  THe strong smell was only sat night - sunday evening ,, then it disappeared.   However that being said ,, I was driving back from the YMCA with is about 3 or so miles away and on a different street ,, caught a wif of the same thing ,,, I am now thinking that it might be a "weed killer" chemical that the city gardeners lay down after trimming and working in an area ,, more to come of this ..

also I am interested in the doctors that were in the article above ,, the ones in Italy that were going to try to examine the molecular structure of this bay laural and see what in it the brain might be reacting to.  I'd be interested to see if anything came of it since the article is a few years old.

Thanks CHF for the kudos on God member status ...

off to vegas this weekend ,, maybe I can win enough money to just sit home and do research on this and lung cancer .. I seem to spend most of my day researching one or the other anyway !!!  ;)

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I found a link to publications made after this article were published by Dr. Silvia Benemei from the University of Florence.. im hoping they are in English ,, I havnt tried to read one yet.

http://www.researchgate.net/profile/Silvia_Benemei/publications/2

here is a thought though ,, lets say the CH is brought on by something inhaled (an allergen or irritant of some sort),, it hits the sinus passages or back of the throat and causes a cascade reaction and Voila a CH is born.  ( I know I know it doesn't explain why it happens an hour after falling asleep ? or does it ,, maybe that's when our mouths fall open and we start to snore or breath with our mouths open,, anyway I digress).. We know that using a SPG block can stop the pain and relieve pressure for a while ,, but what if there was some kind of an inhalant/mouthwash etc that would coat that area keeping any kind of irritant from being recognized by the skins surface to begin with thereby stopping the process before it starts. those that are episodic know that something at a certain time of year is a trigger.  hmmm .. and hmmm 

thanks  more later

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so I read one of these papers published by this doctor that said that this plant contains a strong camphor-like odour that when extracted from the leaf oil and administered to laboratory animals, affects respiration, heartbeat and blood circulation eventually causing death. This is because the leaves contain a volatile constituent, the monoterpene ketone umbellulone.

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of course I have no idea what that is so I will have to look that one up along with

" It is well known that a variety of agents, cinluding alcohol, histamine, and trinitrine (?), can trigger cluster headache attacks, although their ability to produce such an effect is usually confined to cluster active periods." 

don't know what trinitrine is

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what I have learned

Monoterpene Ketone Umbellulone

Monoterpene   -   something found in tree bark. it doesn't change from season to season (per one study I found). its found in pines and other trees. found in tree resin.   

Monoterpene Ketone -  can be added to food in the form of Menthone - peppermint oil  ( added to chewing gum, gelatin, baked goods). 

other monoterpene ketones are Thujone which produces a camphor-like smell. excessive consumption of Thujone leads to confulsions with brain and liver damage.   found in the plant Tansy ( I wanna say what I was smelling was a camphor smell)

fenchone ( a tree oil) - also camphor like smell.  bitter tasting can be found in fennel oil.

and of course the Umbellulone -  or ketone from the laural or "headache" tree

what if it has nothing to so with sunlight but everything to do with trees ?? we all know what trees do in spring and fall ,, maybe they give off something each season to bring this on ? or when these ketones are used in food or other applications .. more research 

and does anyone on here live in the desert ,, you know where there aren't any trees at all ??

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Some of you may remember that my son has, like clock work, reacted to what I believe are the fumes left from our Fourth of July fireworks that we can light off here in the street ?

Well I just found a camphor oil link --  what the what ?????

Modern uses include camphor as a plasticizer for nitrocellulose, as a moth repellent, as an antimicrobial substance, in embalming, and in fireworks. Solid camphor releases fumes that form a rust-preventative coating and is therefore stored in tool chests to protect tools against rust.[9]

Some folk remedies state camphor will deter snakes and other reptiles due to its strong odor. Similarly, camphor is believed to be toxic to insects and is thus sometimes used as a repellent.[10] Camphor crystals are sometimes used to prevent damage to insect collections by other small insects. They are also used as a cough suppressant. Camphor oil was one of the ingredients used for ancient Egyptians mummification[11]

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Update - last night we had some pretty strong winds around 10 PM  when they started to kick up I smelled that smell again ! I got up and went to the window and sure enough It was comming from outside. I went to my sons room and told him to close his window because I could smell this whatever it is and he said " mom that doesn't have anything to do with it". Sure enough at 2:30 this am he's in getting his oxygen that's 2 for 2.  Please any comments. ??!!

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I know that with the decorative mulches they soak them in some type of insecticide to deter critters of all types...but never thought about a natural substance being a trigger.  You have looked at weather patterns and such as well?  I know some trees and shrubs DO put out some really strong substances that does trigger allergies. But we have been having some crazy weather stuff going on as well. Did't you say that your son gets them around the same time each year?

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Yes ,, October  -   Jan/Feb   -  Late  June/July

We have winds and fires here now .. so will have to see,, I havn't had a chance to talk to him since I got home from Vegas.  I did smell that smell again but it didn't seem to trigger one that evening.   interestingly enough one of the Gals I spent the weekend with's husband is a Neurologist, she said I could have some interesting conversations about Cluster Headaches with him if I wanted to. I think I will have to drive over some afternoon and chat with him. Although I told her I doubt theres much he could tell me that you all haven't already told me or I've found on my own.  sigh  :-/

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And so I will continue on my blog here. Yes I came home from Las Vegas to the smell of fire. My youngest said there was a big fire in Ontario east of us the smoke smell was very strong. I was concerned my son would have a CH because of this. I went to work and the smoke smell on campus and in particular in my office was so bad I had to breathe through my shirt until the air came on. My son is a student on campus, low and behold around 11am between classes he was hit. I am now 99% convinced it is some particulate he inhales. 

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anti seizure medications are used to treat camphor overdose.  anti seizure medications are used to treat CH's.  I think im going to take my son and get a blood serum allergy test done to see if they can specifically test for this.

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I hope you don't mind ,, I'm making this thread my own little repository of information to refer back to..  lol

Naphthalene is a carbon-based chemical that is most commonly used to make mothballs. It has the chemical formula C10H8, and is known within the scientific community as a polycyclic aromatic hydrocarbon. This chemical is found in nature but scientists can also synthetically create it in a lab. In addition to mothballs, it is used to make insecticide, many resins and solvents, and a range of lubricants and household products. Many cigarettes contain it, too. People who are regularly exposed to the chemical often experience negative health consequences. ItÂ’s usually considered safe for use in small amounts, but when ingested or constantly inhaled it can lead to nausea, headaches, and organ damage.

Main Sources

In most cases the compound starts out as a white solid with a very distinctive smell. It is sometimes also marketed as naphtha, nafta, tar camphor, or moth flakes, depending on the purpose for which itÂ’s being sold. The original sourcing for this compound comes from nature. A few substances naturally contain naphthalene; it is found in trace elements in many fossil fuels as well as in the ash of timer and tobacco. Scientists frequently isolate it through a straining and filtration process, and it is sometimes also created synthetically. Man-made copies usually have the same chemical attributes but are often easier and faster to isolate.

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Hi didgens,

If it is this cut and dry, it could explain the seasonal aspect many people experience. Maybe it's not their hypothalamus, but the plants coming into bloom, or the neighbours trimming them, or someone spraying them....

But, I doubt it is that cut and dry, at least for everyone. We all have triggers that others don't have - alcohol is a prime example. A trigger for most people, but not for me. So this may be a trigger for your son, and I hope you find a solution.

I do know that strong smells will trigger migraines for me, and sudden cold can trigger a migraine or a cluster.

I read an article once (which I can't find now) talking about how migraine sufferers are generally more sensitive to things - smell, light, sound, weather, etc. - and many of these things can be a trigger. I did find this article, https://www.excedrin.com/stories/can-smells-cause-migraines/ which talks specifically about smells that may interest you.

As a migraine sufferer, I experience a lot of similarities with migraines and clusters - particularly in regards to my heightened sensitivity. So I don't think I'd be far wrong in thinking if something is true for migraine sufferers, it may easily be true for cluster heads too. You may find more information about smells being a migraine trigger than you will for it being a cluster trigger, but at the same time, you may find some of this information applies to both.

Cluster headaches clearly need more scientific research.

If you're son starts getting attacks on a nightly basis, could he stay at a friends one night and see if he doesn't get attacked? If you can't effectively block the smell getting to your son in your home, maybe remove your son from the smell? Might provide an interesting test to your theory.

MG

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