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Xeno
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10 Oct 2010, 10:11 pm

When I was about 11 I first started getting frequent moderate headaches. At 14, they started getting really severe from time to time. A feeling of inflammation and tightness. It got worse and more frequent over time. At 17 I saw a neurologist, and nothing physical could be found that should be causing the pain. He said he thought it was my nerves. Now at 31, I still suffer from frequent severe headaches, and am never completely free of pain in my head. I have developed TMJ disorder over time, with pain in my face getting increasingly worse along with it all.

So... I've been reading up on neuralgia, and it sounds like it could be what causes this. If I have it, it must be atypical neuralgia (since typical neuralgia tends to cause attacks that only last a couple minutes at a time). No one really knows what causes neuralgia, but some seem to think that mental disorders and tension can contribute to it. I'm wondering if anyone else here with Asperger's syndrome (which I have been diagnosed for) or any other mental disorders also have this type of pain. Thanks in advance.



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10 Oct 2010, 10:30 pm

I get stress related and tired headaches that count as either migraine or cluster headaches. One thing that helps me is cutting down/off visual and occasionally audio stimulus.


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Taupey
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11 Oct 2010, 3:08 am

Peko wrote:
I get stress related and tired headaches that count as either migraine or cluster headaches. One thing that helps me is cutting down/off visual and occasionally audio stimulus.


I also experienced the horrible tension headache's and the migraines on the left top of my head when I was younger, as I get older, I don't seem to have headaches but once in a blue moon. I was treated by a neurologist when I was in my early 20's.

My mother who is somewhere on the spectrum has had bad headache's all her adult life. She has TMJ and Fibromyalgia. As far as our mental health goes, we have depression which we are both treated for. I don't have TMJ but I do have Fibromyalgia and IC/Hunner Syndrome. I wonder how all of this is connected with Aspergers/Autism.

I agree Peko, a dark quiet place helps. If I was in a brightly lit noisey place with a bad headache, I would lose my cookies without fail.


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Ambivalence
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11 Oct 2010, 3:15 am

Yah, I get very painful headaches in my right temple and right side of my face - not formally diagnosed as to exactly what they are, but I take amitryptiline for them, which helps a lot.


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Aimless
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11 Oct 2010, 3:28 am

Is that what neuralgia is? I thought it was more than headaches alone.



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11 Oct 2010, 6:47 am

Ambivalence wrote:
Yah, I get very painful headaches in my right temple and right side of my face - not formally diagnosed as to exactly what they are, but I take amitryptiline for them, which helps a lot.


I get those, as well.


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Ambivalence
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11 Oct 2010, 8:01 am

Aimless wrote:
Is that what neuralgia is? I thought it was more than headaches alone.


Whatever I get is (when it's bad, which is thankfully very rare these days) more "please stop stabbing the side of my head" than ordinary grumpy headache, it's painful - most painful thing I've encountered, but maybe I'm a wimp. Haven't lost any limbs or given birth to compare with. :) Had it scanned, but that didn't show up anything. :? I haven't had any doctor say "it's definitely (whatever)" so I dunno.


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TallyMan
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11 Oct 2010, 10:27 am

I have Trigeminal Neuralgia. I've had it for around thirty years. It follows one of the typical attack patterns. The pain comes from nowhere. It is incredibly painful - the sensation is like someone is using large bolt cutters to chop my jaw bone in half. I can't help but cry out in pain and grab my face holding it tight. The pain only lasts for a few seconds then is gone again. There is no residual pain at all. Attacks tend to cluster together and I can get several attacks over an hour, then several more groups of attacks over several days. Then no attacks at all for several months.

The pain is overwhelming. For some people the attacks become more frequent and they end up on morphine pumps or other powerful medication. It is also nicknamed "the suicide disease" because by the time the attacks become frequent sufferers often can't live with the chronic pain any more. Thankfully I haven't reached that stage yet and hope I never will. I think it is classed as amongst the most painful conditions a person can suffer from. When I have attacks I literally experience the pain of having my jaw bone smashed and smashed again and again and again sometimes fifty or more times a day. The trigeminal nerve in the jawbone basically short-circuits and sends pain signals to the brain that correspond to severe facial trauma.



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11 Oct 2010, 11:09 am

I don't know if there is any correlation, but I was diagnosed with costochondritis in college. It's an inflammatory condition which has the chance of flaring up anytime if I don't watch it.



Taupey
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11 Oct 2010, 7:27 pm

TallyMan wrote:
I have Trigeminal Neuralgia. I've had it for around thirty years. It follows one of the typical attack patterns. The pain comes from nowhere. It is incredibly painful - the sensation is like someone is using large bolt cutters to chop my jaw bone in half. I can't help but cry out in pain and grab my face holding it tight. The pain only lasts for a few seconds then is gone again. There is no residual pain at all. Attacks tend to cluster together and I can get several attacks over an hour, then several more groups of attacks over several days. Then no attacks at all for several months.

The pain is overwhelming. For some people the attacks become more frequent and they end up on morphine pumps or other powerful medication. It is also nicknamed "the suicide disease" because by the time the attacks become frequent sufferers often can't live with the chronic pain any more. Thankfully I haven't reached that stage yet and hope I never will. I think it is classed as amongst the most painful conditions a person can suffer from. When I have attacks I literally experience the pain of having my jaw bone smashed and smashed again and again and again sometimes fifty or more times a day. The trigeminal nerve in the jawbone basically short-circuits and sends pain signals to the brain that correspond to severe facial trauma.


Damn, that sounds horrible, I live with chronic pain that's really bad, but I'm counting my blessings I don't have to experience something as bad as that sounds.


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12 Oct 2010, 2:59 am

My mother has neuralgia (a doctor suspected it was trigeminal neuralgia) mostly caused by hypertension (but not only) and I suffer from terrible migraines. I started having them when I stopped having huge metldowns, at first it was not very bad, just a small headache but a terrible stomachache and I was always vomiting (I have a fragile stomach).
When I was in high school, I would have very bad migraines almost every week or twice a months and miss school because of that. I was also terrified of going to school because of the other pupils, the feeling that I would fail anyway and because I feared some teacher. I was not comfortable there.

Now, I only have them because of my periods (hormonal cause) but they get worse when I eat some kinds of food and I actually had one after my induction day in Whitby (I am a Foreign Language Assistant in Great Britain) because there was too much noise and people around me, it tired me out. Years ago, I would have had a meltdown.

But they are strange because usually, people who have an "aura" have visual problems, in my case, I have auditory problems and none of my doctors can tell why. Basically, one my ears becomes "deaf".

Causes are : noise, light, stress, anxiety, food and periods.

However, I do not have diagnosis of autism (I can at least pretend to be on the BAP) but I think that people with sensory issue or anxiety tend to have neuralgia (or migraines).

(My brother also appear to have migraines or neuralgia, no diagnosis but some of the symptoms and causes are obvious)



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12 Oct 2010, 4:25 am

I have neuralgia. I get awful headaches but was diagnosed when I went to the doctor with jaw pain. I also have fleeting pain like a toothache but when I go to the dentist they sat nothing is wrong. I am on arcoixa which is a pain killer possibly also an anti inflammatory? which helps a lot.


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