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Whooligun
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I'm probably not the only one here who has doubted wether or not they are really cluster headaches.  I think we all know we have them, but in our constant efforts to find cures or causes, we have come across a million possible reasons.  Do I have TMJ?  Migraines? Cancer?  Bad fillings?  Eye issues?  Sleep Apnea?  Etc.

The one thing that always makes me second guess myself is my huge sensitivity to light and sound during an attack. I wear sunglasses around the house, and feel like an idiot sitting in the back of my class wearing a hoodie and sunglasses. 

I have read numerous times that light/noise sensitivity is not CH related.  I was wondering how many people here are light/noise sensitive. 

And has anyone looked into all the mercury filling claims?  The dentists claim their safe, but those against them are very convincing.  Could they be the reason???

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I have never been light sensitive at all when in a CH attack. As for sound: I don't care music or even talk radio, as long as I don't pay any attention to it and it remains in the background.

Someone talking TO me though brings a sudden very sharp additive pain shot.

When in an attack, I cannot and must not focus attention on anything in particular. The neighbor here has some sort of a pressure machine (?). Walls are cardboard :-P The other week, swaying to the beat of my CH in my kitchen, I hear the Pshhhhht of his dumb machine (a coffee machine??), and 3 times... that was 3 heavy pain slashes in my head. But my talk radio was on and didn't bother me as I didn't pay any attention.

I think your light sensitivity shows you have migraines, no?

But then again, I often sweat a lot while on an attack (not always), and the worst ones always see me throwing up at one point, and these two symptoms as far as I know are not closely linked to most cases of CH.

As for toot filling, I'm certain it has an impact on health, but if it was related to CH, there would be not just one case of CH on 1,000 but much, much more.

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I'm light and sound sensitive when I have migraines, but not clusters. And I find it a bit weird, the difference. How my head can hurt during a migraine and even the mildest light is excruciating. But, with a cluster, bright light and loud sound is fine.

Renee.

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We've had silver fillings around for longer than you or I have been alive. No, they don't cause CH. Your dentist is right, they are a fine solution for reconstruction.

Actually, they are still among the BEST fillings out there, due to thermal changes  (expansion and contraction) in your mouth. Their rate of change most closely matches the change in your teeth.

Sinus surgery won't get rid of CH, neither will having some teeth pulled. Lots of us have tried. Having your septum straightened won't fix it either.

And no, a chiropractor can't kill them with an 'adjustment' either. It is not your neck, but CH will make your neck hurt like hell. >:( >:(

You can have sleep apnea with or without CH. Doesn't matter. The same with TMJ.

Your neuro should do a MRI and perhaps a MRA to make sure you don't have a physical impingement on the Trigeminal Nerve or an Aneurism (sp?).

Your eyes? I've had all that done too, recently. CH will give you Horners Syndrome. Horners does not give you CH.

Purple404,

Sweating is common, especially on the CH side. Sweat will run down only that one side of my head and face. Just like your sinuses running or your eye dripping.

And I am right there with you on the 'don't talk to me' thing. If I focus or try to, it gets worse, rapidly!!! >:( It seems to connect to the eye movement when trying to listen to someone. The eyes move and my head explodes in short cascades of pain. It seems to me that bringing my vision into focus sets it off. Background, only background.

Some people are light sensitive. Most are not.

That's my take anyway. And I have spent a helluva lot of money gathering this info too. >:( >:(

spiny

the indomitable!

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I am terribly sensitive to light and sound during an attack.  I would sit in my garage during attacks and if so much as a shred of light comes in then I am extremely annoyed.  I was surprised also, when I heard it was rare for CH's because its what I have always known. Amazing going my whole life never meeting anyone else until I found this site.  With more and more Clusterheads coming out of the woodwork! 

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And has anyone looked into all the mercury filling claims?  The dentists claim their safe, but those against them are very convincing.  Could they be the reason???

Mercury fillings don't strike me as a good idea for dental work at all, but I think we can confidently say they're not  what causes CH.

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And I am right there with you on the 'don't talk to me' thing. If I focus or try to, it gets worse, rapidly!!! Angry It seems to connect to the eye movement when trying to listen to someone. The eyes move and my head explodes in short cascades of pain. It seems to me that bringing my vision into focus sets it off. Background, only background.

It's an amazing feeling to hear that someone feels exactly like i do in these particular moments.

Like every newbie here, I'm still astonished to find out I wasn't alone all these years...

But anyways... that sounds a bit like meditation of some sort, don't you think, spiny? ;)

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And has anyone looked into all the mercury filling claims?  The dentists claim their safe, but those against them are very convincing.  Could they be the reason???

Mercury fillings don't strike me as a good idea for dental work at all, but I think we can confidently say they're not  what causes CH. 

How can you be so confident?  I know that some people with CH have never had fillings.  But I have barely started looking into fillings and have already found that: 

Vitamin D is the way to detox your body from Mercury.  The same mercury that leaks out of the fillings, the same vitamin D that some people are finding helpful for CH attacks. 

The mercury in fillings is in a stable form, but is harmful as a vapor.  Heat releases the vapor.  I drink a lot of coffee and tea.  Is that enough heat to release a small amount of poisonous gas?

I just don't understand how some people can be so passionate against using fillings, and others can just dismiss it as BS.  It makes perfect sense...we are putting poison in our heads and trusting that it is totally fine.  If my car was acting up and I was pouring maple syrup in the gas tank, I'd probably start there.

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I have always thought the mercury has played a role in CH, not sure its the leading role, but it does have some effect, at least in my mind.

My CH didn't start till I had 6 or 8 fillings in a about an 18 month period.  The dentist was most likely making extra cash off me, as my family dentist was shocked when I came to see him (in atlanta, was living in wyoming) that I had cavities, much less 8 of them. 

The neuro link doc said he detected mercury poisoning in me, and said he "fixed" it.  Not sure how, but I have yet to have a full blown attack... went through a period of intense shadows and a couple of what felt like CH, but no pain.  weird for sure.  I used my Vitamin M to knock those away, but the one CH without pain was really weird.  Everything but the pain.  Drooping eyelid, running nose, sore neck, etc.  everything but the pain.

I just think that mercury is a factor.  It is in our environment, and one of the most toxic substances to humans, but for some reason, we put it in our mouth to fill holes.  It does off gas, so it gets in our system.  It is also in a lot of fish we eat, some places its in the air we breath.  Maybe, we, who have CH, are more genetically disposed to develop CH after exposure to mercury.  And you can get mercury from lots of places, not just dental work.

Just thinking out loud again.  Need to do more research for sure!

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hmmm, at first glance, it seems that:

''mercury accumulates in the hypothalamus and pituitary''

http://www.wholebodymed.com/library_education_details.php?pid=31

''Mercury concentrates in and around a part of the brain called the hypothalamus''. http://mercurymadness.info/?page_id=14

In fish, mercury destorys or prevents the development of serotonergic neurons in the hypothalamus (Tsai). It also reduces the degradation of serotonin by inactivating MAO-B in humans who eat high-mercury fish and have blood mercury levels above 3.4 mcg/L (75th percentile – Piven was way above this).  However other studies indicate that mercury may increase serotonin loss.

http://neuroself.com/2011/05/03/jeremy-pivens-hypothalamus/

So maybe you're onto something, yes, Whooligun, although I have a hard time seeing how so little mercury (I had one filling when my CH started) could affect so much... and only one in one thousand people, how do you explain that?

But I think everything relating to the hypothalamus and pituitary is worth searching. I will. 

also this

http://www.mercurylife.com/mercurylife/fibromyalgia_club/

One interesting theory of fibromyalgia is that it involves dysfunction of the hypothalamus (...) it is well-documented in the scientific literature, from autopsies and other studies, that mercury is known to accumulate in the hypothalamus and pituitary gland specifically. For example, the pituitary glands of a group of dentists in Sweden had mercury levels almost 800 times greater than controls. 

But I don't see any headaches in the symptoms of either mercury poisoning http://mercurymadness.info/?page_id=14 nor fybromyalgia

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If the mercury causes CH, I should have gotten them by age 7 or 8. My Aunt had a little bowl of the stuff and let us see how it behaved on several occasions by taking out the bowl, separating the mercury into many drops to watch them re-connect. Good science lesson, bad for humans.

Also, I worked as a dental assistant off and on for many years starting at age 15. At that time, amalgam fillings were the norm for all back teeth. I mixed a lot of it. I also had many of them in my mouth from the age of 6. No Fluoride in those days.

Now, I am not saying mercury is GOOD for you, I just don't hold with the concept of removing them and putting in a tooth colored restoration just 'because'. Nor do I believe they cause CH. Mine have all been removed due to other procedures. Otherwise, I would have left them in place. I do understand people having them removed for esthetic reasons. We all want out teeth to look whole and healthy.

People live, learn, and grow in wisdom (hopefully). We change many things based on 'new knowledge'. This is good. But, I believe our 'new knowledge' must be based in fact. Not an eye catching report that makes the national news.

Point in fact. Hormone Replacement Therapy was dis-continued based on a large study of 1,000's of women. The study said it did not improve or protect bone density. It was reported on every main TV station. Most Drs would not renew scripts for it - at all. FIVE YEARS later, the final report showed that 80% of the women withdrew from the multi-year study in the first few months, due to menopause symptoms!!!!!!! That totally invalidated the study. Those findings barely got a mention. And a lot of women went thru HELL, for no reason. >:( >:(  Now, HRT is regularly prescribed again.

That comes under the heading of 'false new knowledge'. See what I mean? Proper studies with proper reporting and proper analysis of the results, that should be the 'proper' path.

Purple,

Yup, it does sound like meditation! :D So does my method of using O2. I visualize my breathing and control it with concentration. Course, it doesn't work so well if I am already at a high Kip. :(  Anything below an 8, I can run with 'in with the good air, out with the bad air'. 'Push it out hard, pull it in deep'.

spiny

who might already be nuts since this post is sooo long::)

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