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        New Message Board Archives >> 2006 General Board Posts >> maybe we're looking in the wrong direction
        
(Message started by: JenniferD on Sep 18^th, 2006, 5:58pm)

Title: maybe we're looking in the wrong direction
Post by JenniferD on Sep 18^th, 2006, 5:58pm

Sorry for the length of this, but I need to talk it out.

I got hit from 5:30 to 12:30 today, with breaks of no more than 10 minutes, then bam! started again each lasting 45+ minutes. All were low levels but aggravating and tiresome after hour upon hour.

Feeling somewhat better but worn out, Darryl and I have been discussing this whole episodic shit that has been f'ing up my life for 21 years. Oct '85 I went to FL and got hit with 10's the entire time. At the time we thought it was due to my hitting my head sharply and was given pain killers then once home, some doc ran some tests, don't remember what they were.

I don't recall having CH like headaches for the next couple years, thru much stress and 2 pregnancies. I remember being told I had sinus infections, but not much else.

We moved in '90. I spent the next 6 years going thru sheer hell, cycle after cycle after cycle of 8+'s, even 2 in the spring - I am normally fall episodic. Of course, being told I had sinus infections, sinusitis, y'all know the drill. Finally diagnosed in '96.
However, from '97 to '99, I had no CH at all. Then starting again the next year, like clockwork back to fall. Now here's what I never "saw" before. We got Charlotte, our g. retriever in '90. I left my husband AND my dog, in '97. When the ex moved, the kids and I took Charlotte- he moved in 2000, surprisingly, when my CH came back regularly.

Darryl and I have been talking a lot about how allergies may affect all of us differently, how JUST MAYBE for each of us we are showing allergic responses and those chosen few of us develop a CH response. So I started poking around online and this is what I found, I offer this for your consideration.

I will post a couple of paragraphs, but you can read the full article

Unraveling the relationships these disorders have to each other poses many interesting questions. For example, can allergies or asthma trigger migraine? Clearly, these associations appear to be popular beliefs. For example, it has long been assumed that allergies are part of sinus disease and that sinus disease, in turn, results in "sinus headache." In fact, most participants in the American Migraine Study II who had diagnosed migraine also reported having "sinus headaches." However, whether sinus headache and migraine are distinct headache disorders or related to one another is a mater of debate.

This debate was the topic of a recent study presented at the American Academy of Neurology meeting in May of this year. Dr. Curtis Schreiber evaluated a group of people who reported they had recurrent attacks of sinus headaches. These individuals were self-diagnosed and had never been evaluated by a physician as having either sinus headaches or migraine. They reported headaches that were frequently one-sided and usually located in the area of the sinuses (around the eye or in the face). In addition, they often experienced nasal congestion and a clear nasal discharge during their headaches. Finally, many reported that changes in the weather could trigger attacks. It appeared that these factors are what made them believe their headaches were sinus-related.

The importance of this study is that it suggests a more than casual relationship may exists between migraine and "sinus" symptoms such as face pain and nasal symptoms. The nerve that conducts the pain impulses from blood vessels during migraine also has branches that go into the sinus cavities. It is possible that an allergic response activates this nerve system (the trigeminal nerve) that in turn develops into migraine. Conversely, it may be that in some migraine attacks the sinus branch of the trigeminal nerve is activated in the same manner as the trigeminal branches that supply blood vessels are activated. This activation could result in nasal symptoms being observed during migraine. Clearly further research is needed in this area.

The full article: http://www.achenet.org/articles/21.php

I have to wonder if we are looking for our culprit in the wrong direction. Are we all allergy sufferers, whether we recognize those allergens or not, and for whatever reason, our bodies respond severely where others do not?

Title: Re: maybe we're looking in the wrong direction
Post by JenniferD on Sep 18^th, 2006, 6:08pm

Sorry, you know this isn't like me to do this, but I have to continue. I think, if we have allergen A, which by itself poses little to no response/threat and allergen B, which may cause some to severe responses. However, when the 2 (or more!) allergens get together in the wrong combination, like me and chocolate and whatever mold or pollen or whatever occurs in the fall, our bodies go into overdrive in response.

Also, we also know to point the finger so to speak at our hypothalamus, but that doesn 't explain to me why some of us are cyclical, and some are chronic. I DO know that some people have seasonal allergies, some people have allergies constantly. Doesn't seem to me rhythmic/cyclic changes have anything to do with that. Our bodies are responding in the extreme to what surrounds us and creates the allergic reaction in the first place. So what makes us so special that 1% of us go haywire?

Title: Re: maybe we're looking in the wrong direction
Post by andrewjb on Sep 18^th, 2006, 10:23pm

very interesting.iam sure air freshners and associated chemicles are a trigger for me.

Title: Re: maybe we're looking in the wrong direction
Post by jon019 on Sep 18^th, 2006, 10:47pm

Hi Jennifer,

My ch started at age 26. Approx same time a whole host of allergies I never had before started too. Cooincidence? Don't know, but interesting.

Early in ch life, antihistamines "seemed" to help. Don't know about that either. Probably also cooincidence.

Thanks for the article,

Regards

Jon

Title: Re: maybe we're looking in the wrong direction
Post by unsolved1 on Sep 18^th, 2006, 11:43pm

on 09/18/06 at 22:47:22, jon019 wrote:

Early in ch life, antihistamines "seemed" to help. Don't know about that either. Probably also cooincidence.

Wish we all knew ! Histamine infusions have helped me many times ... but also failed a few times too. :-/

UNsolved

Title: Re: maybe we're looking in the wrong direction
Post by jon019 on Sep 19^th, 2006, 1:13am

on 09/18/06 at 23:43:49, unsolved1 wrote:

Wish we all knew ! Histamine infusions have helped me many times ... but also failed a few times too. :-/

UNsolved

Hi UNsolved.

Perfect handle, we all could use it!

Have read your story re histamine desensitization. Never been offered to me but I would not be adverse.
Have the impression that although histamine is the agent used, the theory is to swing the body to react LESS to the histamine. Sorta like holistic theory or allergen therapy (a little dose at regular intervals until it no longer causes the negative reaction). Do I have that right?

Anyway, an antihistamine would do the same, only from the complete opposite direction. It is really intriguing either way.

Regards

Jon

Title: Re: maybe we're looking in the wrong direction
Post by unsolved1 on Sep 19^th, 2006, 3:48am

on 09/19/06 at 01:13:30, jon019 wrote:

Have the impression that although histamine is the agent used, the theory is to swing the body to react LESS to the histamine. Sorta like holistic theory or allergen therapy (a little dose at regular intervals until it no longer causes the negative reaction). Do I have that right?

I'm not sure about the 'holistic' part of it ... but the other part sounds right. I get little doses of histamine @ regular intervals over 11 days to desensitize myself to histamine. Whatever it is ... it's worked many times for me, stopping the attacks for weeks at a time. Best thing I've tried so far (and believe me, I've tried alot!)

UNsolved

Title: Re: maybe we're looking in the wrong direction
Post by Yorky on Sep 19^th, 2006, 4:26am

on 09/19/06 at 03:48:44, unsolved1 wrote:

i think my doctor told me....histamine is a chemical(?) produced naturaly by yhe skin...this in turn affects a chemical called 5ht which is found in the head

Title: Re: maybe we're looking in the wrong direction
Post by BarbaraD on Sep 19^th, 2006, 8:05am

My doc said when he was in med school (back a lot of years ago) they called them "histamine" headaches. Could be a relationship there. I suffer from all kinds of alergies. Have had the shots, but didn't seem to help the headaches.

Hugs BD

Title: Re: maybe we're looking in the wrong direction
Post by georgej on Sep 19^th, 2006, 8:51am

on 09/19/06 at 03:48:44, unsolved1 wrote:

So are the histamines produced by the body, to which a sensitivity exists, an autoimmune response, or a response to an external allergen? It's hard to imagine an external allergen that would fit the bill--it would have to be near-universal in distribution. After all, there are people from all over the world here.

We seem to vary widely in our immune responses as well--while there are some who appear to be allergic to a broad spectrum of allergens, there are others (like me) who have no known allergic reactions to either medications or environmental factors.

I've speculated over the years that there might be an AUTOIMMUNE component to CH, since some of the symptoms resemble an immune response--an allergic reaction to something my body produces. But what would account for the seasonal component?

I've never been able to pin it down to any allergen, either environmental or internal.

I'm episodic. Like many others of my CH slant, there is a definite seasonal component--spring and fall. But near as I can tell, it seems to be related to day length, rather than anything else.

Interesting discussion so far.

Best,

George

Title: Re: maybe we're looking in the wrong direction
Post by seasonalboomer on Sep 19^th, 2006, 10:03am

Jennifer,

Let's say, for instance, it is some kind of build-up of unknown, but seemingly omnipresent allergens that surround us. And only affect a small slice of the population in this way because of some special receptors of ours that are sensitive to them.

Okay, well, then what do you do? The information, in all likelihood, becomes as actionable as knowing that you've got a dodgy hypothalamajingy. So, the direction you still have to look is at how you deal with CH. Finding preventatives and abortives that work and have acceptable, or no, side effects that the user can live with.

I guess I've simply arrived at an acceptance that I can't change "it", being CH. It exists, and whether it was because of genetics, chemical exposure, chickenpox or divine retribution, it will still exist. It's just easier for me.

Instead I focus on how I can develop an action plan for what exists. What's worked, what hasn't, what is working for others. How do people's life-views help them fight like hell and try new things. CH is wrought with negativity, how can it not be? But, the stories of positivity that I've harvested from this site have turned my whole life-view with regard to CH.

I don't want you to perceive this as some kind direct rebuttal to your thread. Finding out "why" might be nice. Hell, it would be great. I'm simply saying that for some (I guess I'm really saying "me") life is easier without knowing "why" and focusing on "how".

Scott

Title: Re: maybe we're looking in the wrong direction
Post by kcopelin on Sep 19^th, 2006, 6:04pm

And yet, I'm all for exploring possibilities. Yep-CHs used to be called histamine headaches. ANd yep, antihistamine and histamine desensitazation both help some folks. Could this be an auto-immune issue. Which is kind of what allergies are-body encounters a benign substance and goes to Code Red. Hmmm....
Keep digging folks-we'll figure it out before the scientists and doctors will.
kathy- allergic to cats, ragweed and needles.

Title: Re: maybe we're looking in the wrong direction
Post by unsolved1 on Sep 19^th, 2006, 6:30pm

I don't know of anything that I'm allergic to. Or maybe I'm allergic to everything and it's causing all these 'headaches' !! Who knows ??

Maybe we should try living in a bubble for awhile [smiley=huh.gif] [smiley=laugh.gif]

UNsolved

Title: Re: maybe we're looking in the wrong direction
Post by Jonny on Sep 19^th, 2006, 6:34pm

Someone should email Prof. Goadsby and tell him hes barking up the wrong tree.....LMAO ;;D

Title: Re: maybe we're looking in the wrong direction
Post by JenniferD on Sep 20^th, 2006, 8:31am

on 09/19/06 at 18:34:56, Jonny wrote:

Someone should email Prof. Goadsby and tell him hes barking up the wrong tree.....LMAO ;;D

He can bark up any tree he wants cuz at least he's barking. The rest of them are all pissing on the base of the tree and calling it treatment :D