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Chronic daily headaches... comorbid?
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stabularasa
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PostPosted: Thu Dec 11, 2008 3:44 pm    Post subject: Chronic daily headaches... comorbid? Reply with quote

Hello everyone

As this is my first post I think I'd better give a brief account of the conditions that brought me here.

I'll try to be brief!

I'm 29 years old and was diagnosed with AS about four months ago, though it seems much longer than that. For as long as I can remember I've had (almost) daily headaches ranging from moderate to excruciatingly unbearable. I've seen four neurologists, had all the tests, been on all the meds, I've had a range of specialists from the conventional psychologists and psychiatrists to the "alternative" such as acupuncture and deep stress massage therapy and even homeopathy. During my teenage years I developed a depression which culminated into a Major Depressive Disorder which is still around today though ever since I've discovered that I have Asperger's I have had a remarkable turnaround in my depression and you could say that it's almost in remission at the moment. I've spent the last few months learning all that I can about the Syndrome, I've read most of Tony Attwood's "The Complete Guide to Asperger's", which I thought was absolutely brilliant. I would read more but I have tremendous difficulty with my memory nowadays and tend to forget what I had just read. I'm hoping the memory problem is simply due to all the meds that I'm on at the moment.

So I'm searching the internet to find if there is any link between Asperger's Syndrome and chronic daily headaches, and I find that there is really not a lot of information out there.

I am quite hypersensitive to light, noise, and smells, and when I have a headache, my hypersensitivity increases.

I think that it's quite well known that the most common cause of headaches is anxiety. I have read a bit about Exposure Anxiety from what Donna Williams has supplied to us on the internet, though I have not read her book on the subject.

I'm wondering, if I am overstimulated by my environment, could I experience Exposure Anxiety, and does that Exposure Anxiety cause chronic headaches, therefore these chronic headaches are an inadvertent comorbidity of Asperger's in my case?

My counter argument to this (my own) theory of the origin of my headaches is that for the last 10 months I have been living with my parents who are supporting me, I spend most of my time alone in my dark room by choice, and I expose myself to painful stimuli only on rare occasions, yet I still wake up with a headache every day.

I would really appreciate any thoughts you may have on the matter!

Thanks in advance
stabby
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NocturnalQuilter
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PostPosted: Thu Dec 11, 2008 3:51 pm    Post subject: Reply with quote

Good afternoon, and welcome to the WP.
I don't have much to offer except sympathy for your ongoign pain and discomfort. I have near-weekly migraines that echo much of what you've posted- especially sensitivity to light, sounds and smells. So far, the only thing I've found that helps is sleep.
Of course, knowing the "trigger" can go along way to preventing the headaches. Mine is stress (duh!), excessive, brilliant lights (being in a store with rows of fluorescent lights makes me nauseaus) and too much sugar and caffeine. By avoiding these I can cut down on the frequency of migraines.
Best of luck to you!
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t0
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PostPosted: Thu Dec 11, 2008 3:55 pm    Post subject: Reply with quote

Welcome to WP.

Quote:
I am quite hypersensitive to light, noise, and smells, and when I have a headache, my hypersensitivity increases.


My experience with headaches is that they are usually caused by overstimulation/stress - usually light and sound. I generally recover if I lie down for an hour or two in a dark quiet place (even if I don't sleep). As a teenager, I had headaches most afternoons after school, but as an adult I've been able to control my environment more and have mostly ridded myself of them.

I would think it to be unusual to have a headache when you wake up each morning unless you're not achieving good quality sleep. Did you have sleep tests performed on you?
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millie
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PostPosted: Thu Dec 11, 2008 3:57 pm    Post subject: Reply with quote

I also get very severe migraines and beleive it to be associated with slightly different neurological patternings due to my AS. I also think it is linked with my sensory integration and overload issues which along wtih other AS traits can markedly increase my stress levels. No eveidence. just a hunch.

i drink lots of water and try to eat well (except that everything is flooded wtih chilli sauce which gives sameness and hotness to everything i eat except porridge.) I try to exercise and live a quiet life.

good luck.
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neshamaruach
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PostPosted: Thu Dec 11, 2008 4:02 pm    Post subject: Reply with quote

Hi Stabularasa, and welcome to WP.

I relate to much of what you said. I have AS, also recently diagnosed. My migraines started about 20 years ago, and at the worst, I was getting them 4 days out of every 7. I'd have to be led out of work by a friend and driven home, and my then-husband would literally have to carry me into the house.

I had been on a low-dose of amitryptiline for insomnia and depression, but had gone off it for about a year when I was in my "I don't need meds" phase. My doctor told me to take it again, because it had been shown to reduce migraines. I did, and my migraines quickly subsided to one/month, and guess which time of the month it was. Sad

Now that I'm perimenopausal, I don't get them as much anymore, though all the stressors you mention can still set them off. I now take Imitrex at the first sign of onset and it works like a charm. It's the only thing that ever has.

To me, there is a very definite link between AS and migraines. The sensory overload is extremely stressful, and causes my back, neck, shoulders, and head to tense up. Sometimes this happens long after the sensory overload has passed. I can deal well in a crisis, but when the crisis is over and I start to relax, I start to feel just how hard on my body the overload and sensory integration difficulties have been. And the fact that Aspies tend to think just about constantly, and at a very high rate of speed, can cause a great deal of fatigue and tension in the head and neck.

Hope this helps. Keep posting!
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millie
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PostPosted: Thu Dec 11, 2008 4:11 pm    Post subject: Reply with quote

Hey nesha! mine have actually increased again with perimenopause stuff. although i have never had them every day. maybe once a week but the migraines often result in vomiting and nausea and an inability to move because of the pain.

rest and water.
low level light
no movement
no sound

good luck. Shocked
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neshamaruach
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PostPosted: Thu Dec 11, 2008 4:22 pm    Post subject: Reply with quote

millie wrote:
Hey nesha! mine have actually increased again with perimenopause stuff. although i have never had them every day. maybe once a week but the migraines often result in vomiting and nausea and an inability to move because of the pain.

rest and water.
low level light
no movement
no sound

good luck. Shocked


Oh, millie, that's awful. Have you tried taking Vitex? It's an herb that is supposed to even out perimenopausal stuff. I've been taking it for several months and it seems to be helping. I think Vitex is its commercial name. The herb is called chastetree. Don't buy it if it's in combination with other herbs. Just the pure herb in a capsule. Works for me. I take one every morning.
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ericksonlk
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PostPosted: Thu Dec 11, 2008 4:29 pm    Post subject: Re: Chronic daily headaches... comorbid? Reply with quote

stabularasa wrote:
Hello everyone

As this is my first post I think I'd better give a brief account of the conditions that brought me here.

I'll try to be brief!

I'm 29 years old and was diagnosed with AS about four months ago, though it seems much longer than that. For as long as I can remember I've had (almost) daily headaches ranging from moderate to excruciatingly unbearable. I've seen four neurologists, had all the tests, been on all the meds, I've had a range of specialists from the conventional psychologists and psychiatrists to the "alternative" such as acupuncture and deep stress massage therapy and even homeopathy. During my teenage years I developed a depression which culminated into a Major Depressive Disorder which is still around today though ever since I've discovered that I have Asperger's I have had a remarkable turnaround in my depression and you could say that it's almost in remission at the moment. I've spent the last few months learning all that I can about the Syndrome, I've read most of Tony Attwood's "The Complete Guide to Asperger's", which I thought was absolutely brilliant. I would read more but I have tremendous difficulty with my memory nowadays and tend to forget what I had just read. I'm hoping the memory problem is simply due to all the meds that I'm on at the moment.

So I'm searching the internet to find if there is any link between Asperger's Syndrome and chronic daily headaches, and I find that there is really not a lot of information out there.

I am quite hypersensitive to light, noise, and smells, and when I have a headache, my hypersensitivity increases.

I think that it's quite well known that the most common cause of headaches is anxiety. I have read a bit about Exposure Anxiety from what Donna Williams has supplied to us on the internet, though I have not read her book on the subject.

I'm wondering, if I am overstimulated by my environment, could I experience Exposure Anxiety, and does that Exposure Anxiety cause chronic headaches, therefore these chronic headaches are an inadvertent comorbidity of Asperger's in my case?

My counter argument to this (my own) theory of the origin of my headaches is that for the last 10 months I have been living with my parents who are supporting me, I spend most of my time alone in my dark room by choice, and I expose myself to painful stimuli only on rare occasions, yet I still wake up with a headache every day.

I would really appreciate any thoughts you may have on the matter!

Thanks in advance
stabby


Enviromental changes could relieve migraine and headache for me. Leaving my parents house and live by myself made me go through 2 years without any headache. When I graduated my daily headache disappeared for months, almost one year. When I quit my last job too, did very good to me. Now it started again... and I'm trying to figure out what is stressing me.
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andriarose
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PostPosted: Thu Dec 11, 2008 5:18 pm    Post subject: Reply with quote

I went through years of debilitating headaches, migraines, and occasional seizures. I saw a bazillion neurologists, went through tons of MRIs and EEGs, and was prescribed all kinds of medications with horrible side effects.

Once I turned 21 and started to drink alcohol (wine) I found out immediately that I had a horrible sulfite allergy. It's actually pretty common. I cut sulfites out of my diet and haven't had problems with headaches or seizures since. They are in most prefab food, concentrated juices, and just about anything you'd get at a restaurant.

I'm not saying that's your problem, but I am saying it's worth looking into, because allergic reactions that manifest themselves in neurological ways are something doctors seem to frequently miss.


I would read more but I have tremendous difficulty with my memory nowadays and tend to forget what I had just read. I'm hoping the memory problem is simply due to all the meds that I'm on at the moment.

You aren't on Topamax, are you? If you are, PM me.
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pakled
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PostPosted: Thu Dec 11, 2008 5:31 pm    Post subject: Reply with quote

I've had maybe 3-4 migraines in 50 years. It could be overstimulation, or it could be how your body is reacting to stress.

I do know someone at work who has constant migrains (but she's NT). Sometimes light does that for her, and she does miss a fair amount of work. Sometimes she'll be in sunglasses inside, which seems to help a little, but not obviously all that much.

I'm sure all the medical reasons (blood pressure, etc) have been gone over. I hope you find an answer...
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Ambivalence
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PostPosted: Thu Dec 11, 2008 6:33 pm    Post subject: Reply with quote

neshamaruach wrote:
I had been on a low-dose of amitryptiline for insomnia and depression, but had gone off it for about a year when I was in my "I don't need meds" phase. My doctor told me to take it again, because it had been shown to reduce migraines. I did, and my migraines quickly subsided to one/month, and guess which time of the month it was. Sad


I'm on a low dose of amitryptiline at present, it seems to be pretty effective at dealing with the headaches I have. I've never really been able to pin down what causes them, although any cold breeze and any stress are pretty reliable triggers. I am really glad to be on that stuff 'cause it was sometimes totally debilitating (and more often just annoying) before.
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Callista
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PostPosted: Thu Dec 11, 2008 8:52 pm    Post subject: Reply with quote

Anything that causes overload will cause me to get a headache, eventually. Mine are tension headaches; but I don't know whether yours are, so this might not be helpful.

But whenever I get overloaded, I am very vulnerable to getting headaches. Last time it happened, it was because I went outside and had a driving lesson without my sunglasses on. It was a cloudy day; but there was still a lot of contrast, and I think I overloaded whatever processes visual information, and that plus the underlying "thinking hard" stress of learning to drive ended up making my neck muscles tense--which is always the first step to a headache for me. This time I actually got a headache. Usually I can catch it at the muscle-tension step, massage the neck muscles and/or take time off to relax, and catch it before it turns into one.

Any kind of overload will do that, but the biggest culprits are visual and auditory overload.

Have you considered caffeine-withdrawal headaches, by the way? If you drink coffee regularly and then don't have any for twelve to twenty-four hours, lower levels of caffeine will trigger a headache that feels about like a tension headache. The solution is either a constant level of caffeine or else stopping all caffeine intake for a while (yeah, that causes headaches, so take tylenol for them, not a headache remedy that has caffeine in it); and then when you stop having withdrawal symptoms, to take in only enough caffeine that you don't build up a tolerance to it again. I take weekends off the coffee, personally. It works OK.

I'm not sure what your severity level is; but even tension headaches can be disabling for me because they add to the load and I end up not having much processing space left, so I thought I'd put the idea out there and see if it made any sense.

BTW, a hot shower and a nap will cure almost any tension headache, at least if it is one of mine.
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neshamaruach
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PostPosted: Thu Dec 11, 2008 8:56 pm    Post subject: Reply with quote

Ambivalence wrote:
neshamaruach wrote:
I had been on a low-dose of amitryptiline for insomnia and depression, but had gone off it for about a year when I was in my "I don't need meds" phase. My doctor told me to take it again, because it had been shown to reduce migraines. I did, and my migraines quickly subsided to one/month, and guess which time of the month it was. Sad


I'm on a low dose of amitryptiline at present, it seems to be pretty effective at dealing with the headaches I have. I've never really been able to pin down what causes them, although any cold breeze and any stress are pretty reliable triggers. I am really glad to be on that stuff 'cause it was sometimes totally debilitating (and more often just annoying) before.


Wow, you're only the second person I've met in my life who takes amitryptiline. I've been on it for 20 years, and it works great for migraine control, depression, insomnia, the works. It's an old tricyclic and hardly anyone takes it anymore.
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PostPosted: Thu Dec 11, 2008 9:02 pm    Post subject: Reply with quote

I took it for my sleep-cycle problems for a little while. (Specifically, the problem that I didn't actually have a regular sleep cycle.) It worked; but it also made me groggy in the morning. Eventually I reduced the dose to a quarter of a pill, and then switched to melatonin, which is milder. I don't like taking pills to help me sleep at all, though. If I could only somehow get the hang of resetting my sleep cycle like everybody else seems to do routinely (the average circadian rhythm is 24.2 hours long, so most people will reset themselves by .2 hours.) As far as I can tell, my cycle can last anywhere from sixteen to twenty-eight hours... which is totally irregular. Now that it's becoming more regular with my working on it, I have discovered what may be an underlying problem of an unusually long cycle, with nearly an extra hour in it. That could be why I never slept through the night as an infant--night was often not at the "right" time! Blind people with no light perception apparently have the same problems I'm having, except my light perception is too intense!--I wear sunglasses like they're going out of style--which could have something to do with the problem, but then I had the problem before I stopped squinting constantly and started wearing sunglasses, so if there's a relationship it's probably between why I wear the sunglasses and why my sleep cycle's weird... Um. Lecturing. Sleep is interesting. Smile
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neshamaruach
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PostPosted: Thu Dec 11, 2008 9:14 pm    Post subject: Reply with quote

Callista wrote:
I took it for my sleep-cycle problems for a little while. (Specifically, the problem that I didn't actually have a regular sleep cycle.) It worked; but it also made me groggy in the morning. Eventually I reduced the dose to a quarter of a pill, and then switched to melatonin, which is milder. I don't like taking pills to help me sleep at all, though. If I could only somehow get the hang of resetting my sleep cycle like everybody else seems to do routinely (the average circadian rhythm is 24.2 hours long, so most people will reset themselves by .2 hours.) As far as I can tell, my cycle can last anywhere from sixteen to twenty-eight hours... which is totally irregular. Now that it's becoming more regular with my working on it, I have discovered what may be an underlying problem of an unusually long cycle, with nearly an extra hour in it. That could be why I never slept through the night as an infant--night was often not at the "right" time! Blind people with no light perception apparently have the same problems I'm having, except my light perception is too intense!--I wear sunglasses like they're going out of style--which could have something to do with the problem, but then I had the problem before I stopped squinting constantly and started wearing sunglasses, so if there's a relationship it's probably between why I wear the sunglasses and why my sleep cycle's weird... Um. Lecturing. Sleep is interesting. Smile


Callista, can you say more about the circardian rhythm and sleep cycles? Until I got on the amitryptiline, I was chronically insomniatic and sleep-disordered. I seem to be having very weird sleep cycles these days--going to sleep between 11 and midnight, and waking up at 5 am. I think it's the stress of trying to figure out and come to terms with all the AS stuff. Everytime I turn around, there's some challenge I hadn't recognized before staring me in the face, or some aspect to wrestle with that I don't quite understand yet. I feel like I've got a lot to learn late in life and I'm in hyperdrive.
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