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Old 09-23-2015, 12:00 AM
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Default Cluster Headaches...Am I Alone Here?

So, I'm one of those lucky 0.002% of people who experience the lovely phenomenon called clusters. And they are excruciating. Days, weeks, and sometimes months of headaches that don't stop. They may seem to be gone, because they become tolerable, but then later they come back full force. Lately I've had them more than I ever have in my life. I've tried OTC drugs, cold baths, hot showers, dark rooms, deaf ears, seems like everything. The only thing I haven't tried is super caffeine. And by that I mean such a high concentration of caffeine that it should give me the instant shakes or an aneurysm. (joking) I fear the caffeine method simply because I get migraines as well and too much caffeine is one of my triggers.
I'm sure there are other ways to help relieve the pain, but in the moment, all I think about is how much it hurts and how much I want it to stop.

Is there anybody out there how also experiences these? What do you do to help yourself? Please tell me I'm not alone here. Please??
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Old 09-23-2015, 01:08 AM
Kachad Male Kachad is offline
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My GF in high school had cluster headaches. Usually they lasted for less than a day, but happened pretty frequently. The only thing that I know that came close to helping was a completely dark room with zero noise. Maybe helping isn't the word, but more like an attempt to minimize the pain.

It sure seemed pretty horrible, her Docs were hoping that she would grow out of them.

We went separate paths after HS, so don't know if they got better or worse with time.

My thoughts are with you - hopefully you find some way to help with minimizing their effects.
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Old 09-23-2015, 02:31 AM
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Thanks Kachad. Being in a dark noiseless room is tough for me to accomplish. My kids won't leave me alone. Lol. They're 5 and 3. So it's only an option when my husband is home. But it does seem to help a tiny bit. Less to focus on.
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Old 09-23-2015, 12:31 PM
m37 Male m37 is offline
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may be the problem is your diet
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Old 09-23-2015, 03:49 PM
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may be the problem is your diet
Can you elaborate on that please? What in my diet might be the problem?
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Old 09-23-2015, 06:04 PM
Doninalaska Doninalaska is offline
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Perhaps he means food additives or naturally-occurring chemicals. Have you consulted a Naturopath or an Integrated Medicine doc? We don't have headaches here in our family, but my wife struggled for years--decades actually--with gastrointestinal issues and asthma. She started to feel worse and worse as time went on. I talked her into going to a local Integrative Medicine physician who has a good reputation locally. Her diet was changed and her thyroid meds changed. She now hasn't needed omeprazole of albuterol in over a year. A diet change has made a world of difference for her. Her diet is a little tough to maintain, but she thinks it is worth it. Supposedly, her GI tract will heal with time, and the diet will become less restricted. Talk with local nurses (they always have a feeling for what physicians are good and which are not), and any local lab folks if you know any (they pass judgment based on the tests ordered). ND are harder to monitor, but Integrative docs are usually MDs or DOs with hospital privileges.
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Old 09-23-2015, 07:41 PM
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Can you elaborate on that please? What in my diet might be the problem?
i dont know what your diet consist of ,i was mostlly refering to food additives
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Old 09-23-2015, 10:50 PM
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Perhaps he means food additives or naturally-occurring chemicals. Have you consulted a Naturopath or an Integrated Medicine doc? We don't have headaches here in our family, but my wife struggled for years--decades actually--with gastrointestinal issues and asthma. She started to feel worse and worse as time went on. I talked her into going to a local Integrative Medicine physician who has a good reputation locally. Her diet was changed and her thyroid meds changed. She now hasn't needed omeprazole of albuterol in over a year. A diet change has made a world of difference for her. Her diet is a little tough to maintain, but she thinks it is worth it. Supposedly, her GI tract will heal with time, and the diet will become less restricted. Talk with local nurses (they always have a feeling for what physicians are good and which are not), and any local lab folks if you know any (they pass judgment based on the tests ordered). ND are harder to monitor, but Integrative docs are usually MDs or DOs with hospital privileges.
I just moved to my home back in May but haven't spent more than 3 weeks there. So when I get back I'll try to find someone to help me with finding someone. I have a feeling though, I'll have to travel a few hours to a big city to see someone. Anyway, I'll be looking at cutting out more additives now. I decided a while back not to eat anything processed anymore to maybe help with my skin. So maybe its something else in what I'm eating. I definitely should find someone who can analyze my diet if thats a common trigger.
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Old 09-24-2015, 12:46 AM
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Originally Posted by smittenkitten View Post
I just moved to my home back in May but haven't spent more than 3 weeks there. So when I get back I'll try to find someone to help me with finding someone. I have a feeling though, I'll have to travel a few hours to a big city to see someone. Anyway, I'll be looking at cutting out more additives now. I decided a while back not to eat anything processed anymore to maybe help with my skin. So maybe its something else in what I'm eating. I definitely should find someone who can analyze my diet if thats a common trigger.

I think hormone issues have also been linked to headaches. I think more research has been done on migraines than clusters, since it was once believed that cluster headaches were more common in men than women, but migraines are more common over all than clusters by far.
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Old 09-24-2015, 12:56 AM
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I think hormone issues have also been linked to headaches. I think more research has been done on migraines than clusters, since it was once believed that cluster headaches were more common in men than women, but migraines are more common over all than clusters by far.
You think a neurologist could help me? I just don't know where to even start with all of this. The experience I've had with GP's is they know very little about everything and a lot about very little.
I also thought it could be hormones. As I'm approaching my mid 30s I wonder if it's the early signs of menopause. I'm hot all the time, headaches all the time it seems, my skin is crazy but has been better since I only drink water and eat clean foods, hormones are the only thing left, right?
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Old 09-24-2015, 06:01 AM
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Hormones would be covered by an endocrinologist, but a neurologist would be who you could go to if you think it is based in your brain, not your body, e.g., tumor or other such thing. A family doc might be a place to start, though, if you are completely in the dark. He/she might get it narrowed down, then refer you in the proper direction. I still think an integrative physician would be a good place to start.

For a diet issue, keep a journal of what you eat for a while to see if you can connect any particular food to your headaches; for a hormone issue, you might think back to see if they always occur in a particular part of your cycle. A neurologist might order some imaging studies or vitamin tests as a starting point.
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Old 09-24-2015, 01:46 PM
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i would be tested for diabtes when you see a doctor, when it comes to your health see a pro, not getting advice on a forum
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Old 09-24-2015, 01:54 PM
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I used to have serious migraine headaches. Triggered by times of the month and changes in weather.

I already took a multi-vitamin but added a B-Complex vitamin. Took about a month to fully kick in but it cut back a lot on my headaches. Didn't believe it could be that simple so I stopped taking the B-Complex. Two weeks and I discovered that I could not handle not taking the B-Complex, the headaches came back with a vengeance.

When I was taking OTC drugs, I discovered that the ones with aspirin, acetaminophen and Caffeine were the most effective.
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Old 09-24-2015, 05:20 PM
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I missed most of my freshman year of high school due to cluster headaches. Felt like someone was beating my head in with a baseball bat. My doctor said it was "just stress", my teachers thought I was trying to skip class. My dad thought it was a brain tumor. My mom didn't know what to think.

About this time Mom won a professional massage session in a raffle, and gave it to me hoping it might help deal with stress. When the masseuse worked on my neck, the headache vanished. Just like that!

The relief only lasted until I stood up again, but it was the first clue we'd gotten. Mom made an appointment with a chiropractor for me, and he found that my neck was out of alignment. There's a muscle that wraps around the skull to hold it upright, and because my neck was out of whack, this muscle was cramping up and causing the headaches, even though the pain was nowhere near my neck. 3 sessions put an end to the pain, although it took several more to make the realignment stay.

Chiropractors are usually easier to get in to see than most specialists, and they often find things that other doctors miss. I'd highly recommend seeing one.
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Old 09-25-2015, 03:06 AM
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Quote:
Originally Posted by ScrubbieLady View Post
I used to have serious migraine headaches. Triggered by times of the month and changes in weather.

I already took a multi-vitamin but added a B-Complex vitamin. Took about a month to fully kick in but it cut back a lot on my headaches. Didn't believe it could be that simple so I stopped taking the B-Complex. Two weeks and I discovered that I could not handle not taking the B-Complex, the headaches came back with a vengeance.

When I was taking OTC drugs, I discovered that the ones with aspirin, acetaminophen and Caffeine were the most effective.
That helps my migraines as well. I also notice those around the weather. I take B vitamins as well, and since you said that, it made me think about a particular energy drink I like that I've had to give up recently because of headaches. ?

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When the masseuse worked on my neck, the headache vanished. Just like that!

The relief only lasted until I stood up again.
I'm a masseuse! Neck rubs help a lot, but like you the relief is extremely short lived. It does make it a little better when I'm massaging myself, but I can only do that for so long. I've never been to a chiropractor, may have to check it out if I can't get any help from my dr.

Quote:
Originally Posted by Doninalaska View Post
Hormones would be covered by an endocrinologist, but a neurologist would be who you could go to if you think it is based in your brain, not your body, e.g., tumor or other such thing. A family doc might be a place to start, though, if you are completely in the dark. He/she might get it narrowed down, then refer you in the proper direction. I still think an integrative physician would be a good place to start.

For a diet issue, keep a journal of what you eat for a while to see if you can connect any particular food to your headaches; for a hormone issue, you might think back to see if they always occur in a particular part of your cycle. A neurologist might order some imaging studies or vitamin tests as a starting point.
I'll just with my dr. I was just hoping to find someone who had some luck with finding relief from these. Now I'm ready to go home and see who I can find.
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Old 09-25-2015, 10:37 AM
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smittenkitten We had to take our granddaughter for a MRI of the brain. (She just turned 9 months and there was concern about potential cancer from out of the scene baby dad.) The imagine shows a slight swelling of the pituitary gland but very slight. More doctors will sign off that she is okay in the next few months. Now I asked what concerns about the pituitary gland are there? The doctor said for males not much but for females it can cause hormonal imbalance which will be heighten by the women's cycle. Then the doctor said a pituitary gland that is swollen will cause headaches from slight to migraine or severe. I asked what could be done and the doctor said the known treatment is to drill a hole in the skull and drill into the pituitary gland and drain it. The doctor said this will fix the problem most of the time. Maybe you should look at this. The doctor gave us a scientific name but I forgot it and if you Google pituitary gland the doctor said you will see it. The doctor said 2 in 24 women have this issue (if I remember the ratio right). Again you may want to look at this possibilty.
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Old 09-25-2015, 02:38 PM
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smittenkitten We had to take our granddaughter for a MRI of the brain. (She just turned 9 months and there was concern about potential cancer from out of the scene baby dad.) The imagine shows a slight swelling of the pituitary gland but very slight. More doctors will sign off that she is okay in the next few months. Now I asked what concerns about the pituitary gland are there? The doctor said for males not much but for females it can cause hormonal imbalance which will be heighten by the women's cycle. Then the doctor said a pituitary gland that is swollen will cause headaches from slight to migraine or severe. I asked what could be done and the doctor said the known treatment is to drill a hole in the skull and drill into the pituitary gland and drain it. The doctor said this will fix the problem most of the time. Maybe you should look at this. The doctor gave us a scientific name but I forgot it and if you Google pituitary gland the doctor said you will see it. The doctor said 2 in 24 women have this issue (if I remember the ratio right). Again you may want to look at this possibilty.
Oh my! Prayers for your granddaughter! I really hope everything turns out well with her! And as for me, I hope that isn't the case! But you'd better believe I'll remember this story and bring it up to my doctor when I go take a visit. Thanks for bringing up this possibility. It's good to know all the reasons someone may suffer from clusters. And in all my research of them, I've never seen this as a possibility.
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Old 09-25-2015, 08:10 PM
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. I definitely should find someone who can analyze my diet if thats a common trigger.
Only you can analyze your diet. There is no "rule" concerning diet & effects on disease.

Migraines and the close variation called cluster headaches can be related to air pressure, humidity, caffeine, spices, particular foods, food additives, aromas, stress, hormones, etc etc etc. Everybody is different.

Try an elimination diet: cut out one particular food at a time for a week or two and see if it makes a difference. I'd start with eliminating anything with sulfites &/or glutamate {meat tenderizer- added to a lot of prepared foods.} Those are common culprits.

For the vast majority of sufferers, no "cause" is ever found.

You've mentioned skin problems-- like what? Psoriasis?

Edited to add: I'll bet you haven't tried Periactin because your doc probably never heard of it. It's an old fashioned antihistamine that hasn't been generally used for years. But it has anti-serotonin effects that may help in cluster headaches, especially those that involve a lot of tearing and running nose. https://en.wikipedia.org/wiki/Cyproheptadine Ask your doc about it.

Last edited by doc; 09-25-2015 at 08:17 PM.
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Old 09-26-2015, 01:05 AM
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Only you can analyze your diet. There is no "rule" concerning diet & effects on disease.

Migraines and the close variation called cluster headaches can be related to air pressure, humidity, caffeine, spices, particular foods, food additives, aromas, stress, hormones, etc etc etc. Everybody is different.

Try an elimination diet: cut out one particular food at a time for a week or two and see if it makes a difference. I'd start with eliminating anything with sulfites &/or glutamate {meat tenderizer- added to a lot of prepared foods.} Those are common culprits.

For the vast majority of sufferers, no "cause" is ever found.

You've mentioned skin problems-- like what? Psoriasis?

Edited to add: I'll bet you haven't tried Periactin because your doc probably never heard of it. It's an old fashioned antihistamine that hasn't been generally used for years. But it has anti-serotonin effects that may help in cluster headaches, especially those that involve a lot of tearing and running nose. https://en.wikipedia.org/wiki/Cyproheptadine Ask your doc about it.
Thank you, I will ask about the Periactin.

Not anything serious like that. Just some bumps and pimples. But since all I drink is coffee, tea, and water now, I don't have too much of an issue with it now. Just the average hormonal zit when it's that time of the month. Oh and I also quit smoking almost 1 year ago. October 17th. So that helped too some. I still have some that I cant figure out what they are, but I'm sure a dermatologist can help me in that area. But it isn't life threatening so that can wait. Much like these headaches. I'd rather see a doctor when I'm actively having a cluster, than when they're dormant and in remission.

Last edited by smittenkitten; 09-26-2015 at 01:10 AM. Reason: Added information
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Old 09-26-2015, 08:53 AM
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There's no advantage to seeing the doc when you're actually having a headache: there are presumably no physical signs for him to observe, except possibly the runny nose and tearing eyes, which you can easily tell him about.

Cluster headaches involve the eye & nose symptoms & signs. They are usually related to abnormal secretion of serotonin. Carcinoid syndrome needs to be considered- that often also includes episodes of diarrhea &/or asthma and flushing of the skin of the face & neck.

Then there's the colloquial use of the term "cluster headaches" when severe headaches occur in bunches over a short period of time. That's just a lot of headaches- either simple tension headaches or possibly true migraine (headaches caused by vascular spasm of the meninges).

Pts with very severe headaches often call them migraine even if they aren't really caused by vascular spasm. It makes a difference in treatment: all headaches can be treated with pain killers, tranquilizers, relaxation techniques &/or massage. Only migraines will respond to use of Oxygen or drugs like Maxalt or Immitrex or by pressure on a carotid artery.
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