Question:
- Hide quoted text — Show quoted text – I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Yes – I suffer from clusters – about 28 years now -=20 =20 =20 Sonnie Parker =20 Reply-to address is spam protected. =20 Thank God this life is temporary! =20 =20 Hi, Mary’s husband bernie has cluster headaches, she seems to know alot about clusters and treatments of them, (how could she not she lives with it daily) She is a wonderful person and her hubby is very lucky to have such a caring person as his wife.. she is around alot. I am sure as soon as she sees this thread she will reply to you.. I hope you find some good info and comraderie here it is a great support group.. Hugs, Tammy
*blush* Tammy you toot the horn to much! 
. What a sweetie. And yes we are here to help our new ASHM member with clusters . — Mary f. <No Kitty! it’s MY POT PIE! _ _ ( / ) | ) ) _,,,/ (,,_ /, . ‘`~ ~-. ;-;;,_ |,4) -,_. , ( `’-’ ’-~~’ (_/~~’ `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf
Response:
and Angie Parker" <guesswhoatmindspringdotcom writes: I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Sonnie, Yes, we’re here! We even have a FAQ dedicated to Clusters. Check Anne’s
Welcome letter for the location of the FAQ’s. Welcome to the group and I hope we can be of service and
become a place for you to go for friendship and understanding that can be so difficult to find. Bob Be glad of life because it gives you the chance to love and to work and to play and to look at the stars. H. Van Dyke
Thanks for the replies. I have had clusters since Feb. 94. The normal episodic cycles about every 4-6 months that last about 2-3 months. I use steroid (Medrol) and Verelan SR. These worked fine for a while but my doctor had to increase my dosage this last cycle. Plus he gave me an Ergotamine (DHE-45) in the nasal form of Migranal for individual attacks. The increased dosage of steroids seems to be working for now, hopefully they will break this cycle. I suppose you all are aware of http://www.clusterheadaches.com ??? A very helpful sight for me and for my doctor too. Any suggestions from anyone are greatly appreciated. Together maybe we can figure this all out. God bless! Sonnie Sonnie and Angie Parker Reply-to address is spam protected. Thank God this life is temporary!
Response:
<guesswhoatmindspringdotcom writes: I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches?
Sonnie, Yes, we’re here! We even have a FAQ dedicated to Clusters. Check Anne’s Welcome letter for the location of the FAQ’s. Welcome to the group and I hope we can be of service and become a place for you to go for friendship and understanding that can be so difficult to find. Bob Be glad of life because it gives you the chance to love and to work and to play and to look at the stars. H. Van Dyke
Response:
– Hide quoted text — Show quoted text – I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Yes – I suffer from clusters – about 28 years now -=20 =20 =20 Sonnie Parker =20 Reply-to address is spam protected. =20 Thank God this life is temporary! =20 =20
Hi, Mary’s husband bernie has cluster headaches, she seems to know alot about clusters and treatments of them, (how could she not she lives with it daily) She is a wonderful person and her hubby is very lucky to have such a caring person as his wife.. she is around alot. I am sure as soon as she sees this thread she will reply to you.. I hope you find some good info and comraderie here it is a great support group.. Hugs, Tammy
Response:
I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches?
Yes – I suffer from clusters – about 28 years now – – Hide quoted text — Show quoted text – Sonnie Parker Reply-to address is spam protected. Thank God this life is temporary!
Response:
I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Sonnie Parker Reply-to address is spam protected. Thank God this life is temporary!
Response:
Thanks for the replies. I have had clusters since Feb. 94. The normal episodic cycles about every 4-6 months that last about 2-3 months.
Sonnie, first of all give us an e-mail address (at least in your signature that we can reply to you with, as not all servers post all messages). of course that is up to you. But we are here to help . your episodes sound similar to my husbands. His started around 96, but we didn’t know what it was then. found out in 98 for sure. He was 39 when they started. Weather triggers them, usually winter and summer are his bad times. From Nov-Feb and June-August. But he can get them inbetween as well, especially if he misses his meds. I use steroid (Medrol) and Verelan SR. These worked fine for a while but my doctor had to increase my dosage this last cycle. Plus he gave me an Ergotamine (DHE-45) in the nasal form of Migranal for individual attacks. The increased dosage of steroids seems to be working for now, hopefully they will break this cycle.
i hope they break your cycle too! Bernie had had a few courses of Prednisone (steriod) to break cycles too, and he’s monitored carefully. Doc lets me do it, as I’ve taken it lots for lupus. So you have to bone up and then taper it. I suppose you all are aware of http://www.clusterheadaches.com ??? A very helpful sight for me and for my doctor too.
Yes it is a good site! Any suggestions from anyone are greatly appreciated. Together maybe we can figure this all out.
Bernie is on verapamil (because of high blood pressure) but it’s also a preventative for clusters, he takes 480 mgs a day. He’s also on lithium as a preventatative, he hated it for 2 weeks but it’s a good thing, his clusters are very much less intense because of this. You might pss this by your doc and see what he thinks. If you want I’ll give you our docs number and then the docs can compare notes. We have a large oxygen tank in the bedroom which helps him with an attack. Did your doctor prescribe any triptans for you? There are several, Bernie likes the imitrex the best but YMMV. The 100% oxygen is the best for Bernie, again YMMV, but you might try it if you haven’t. To try an E tank is okay, to keep you want an M or H tank (an E tank is little, the portable and will last only a week or so), and MAKE sure your insurance will pay for it, they aren’t cheap. I’m glad your doctor is working with you and looking at the cluster site. We’re very lucky that our doctor works with us like that. He’s fabulous!. Sonnie, I know what your wife goes through, I can’t say I know what you and bernie go through, because that kind of pain is so horrible, physical as well as emotional. Bernie and I talk alot about it especially when he has a really bad one and I have to keep him from banging his head on the wall or the bed post and I’m in tears too. We have come to understand that HAs happen, and we deal with it, and make sure that we don’t hurt each other because of it. He might often miss a family function or some other function that he wants to go to, and My family, while just starting to understand what he deals with, is good about it. Our son is learning to deal with it too (but it’s hard for a 6 year old who wants Daddy to take off the trainging wheels, to understand that Daddy has another HA and can’t play with him!) Sigh. It takes lots of love and support, and this group helped me understand that. And of course bernie is the best husband a woman could have (am i just a little biased ). And he’s also one of the funniest men I know . The important thing for us is that we have a good doctor, who will work with us, take the info that I find (I’m the fact finder in the family) and research it. Doc said once, "you know more about them than I do!" Well I might know more about cluster headaches than he does, but he’s the one who helped us find the combination of preventatives and abortives, and that’s probably subject to change sometime down the road as well. The London Neurology clinic (did i get it right) did a study of cluster sufferers and found that there’s a excess or "more" gray matter in the brains of cluster suffererers, that was considered breaking news in this area, not that anything will be done soon to help, but it’s apparently a link to help in the future according to them . love and hugs. — Mary f. <No Kitty! it’s MY POT PIE! _ _ ( / ) | ) ) _,,,/ (,,_ /, . ‘`~ ~-. ;-;;,_ |,4) -,_. , ( `’-’ ’-~~’ (_/~~’ `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf
Response:
- Hide quoted text — Show quoted text – Thanks for the replies. I have had clusters since Feb. 94. The normal episodic cycles about every 4-6 months that last about 2-3 months. Sonnie, first of all give us an e-mail address (at least in your signature that we can reply to you with, as not all servers post all messages). of course that is up to you. But we are here to help . your episodes sound similar to my husbands. His started around 96, but we didn’t know what it was then. found out in 98 for sure. He was 39 when they started. Weather triggers them, usually winter and summer are his bad times. From Nov-Feb and June-August. But he can get them inbetween as well, especially if he misses his meds. I use steroid (Medrol) and Verelan SR. These worked fine for a while but my doctor had to increase my dosage this last cycle. Plus he gave me an Ergotamine (DHE-45) in the nasal form of Migranal for individual attacks. The increased dosage of steroids seems to be working for now, hopefully they will break this cycle. i hope they break your cycle too! Bernie had had a few courses of Prednisone (steriod) to break cycles too, and he’s monitored carefully. Doc lets me do it, as I’ve taken it lots for lupus. So you have to bone up and then taper it. I suppose you all are aware of http://www.clusterheadaches.com ??? A very helpful sight for me and for my doctor too. Yes it is a good site! Any suggestions from anyone are greatly appreciated. Together maybe we can figure this all out. Bernie is on verapamil (because of high blood pressure) but it’s also a preventative for clusters, he takes 480 mgs a day. He’s also on lithium as a preventatative, he hated it for 2 weeks but it’s a good thing, his clusters are very much less intense because of this. You might pss this by your doc and see what he thinks. If you want I’ll give you our docs number and then the docs can compare notes. We have a large oxygen tank in the bedroom which helps him with an attack. Did your doctor prescribe any triptans for you? There are several, Bernie likes the imitrex the best but YMMV. The 100% oxygen is the best for Bernie, again YMMV, but you might try it if you haven’t. To try an E tank is okay, to keep you want an M or H tank (an E tank is little, the portable and will last only a week or so), and MAKE sure your insurance will pay for it, they aren’t cheap. I’m glad your doctor is working with you and looking at the cluster site. We’re very lucky that our doctor works with us like that. He’s fabulous!. Sonnie, I know what your wife goes through, I can’t say I know what you and bernie go through, because that kind of pain is so horrible, physical as well as emotional. Bernie and I talk alot about it especially when he has a really bad one and I have to keep him from banging his head on the wall or the bed post and I’m in tears too. We have come to understand that HAs happen, and we deal with it, and make sure that we don’t hurt each other because of it. He might often miss a family function or some other function that he wants to go to, and My family, while just starting to understand what he deals with, is good about it. Our son is learning to deal with it too (but it’s hard for a 6 year old who wants Daddy to take off the trainging wheels, to understand that Daddy has another HA and can’t play with him!) Sigh. It takes lots of love and support, and this group helped me understand that. And of course bernie is the best husband a woman could have (am i just a little biased ). And he’s also one of the funniest men I know . The important thing for us is that we have a good doctor, who will work with us, take the info that I find (I’m the fact finder in the family) and research it. Doc said once, "you know more about them than I do!" Well I might know more about cluster headaches than he does, but he’s the one who helped us find the combination of preventatives and abortives, and that’s probably subject to change sometime down the road as well. The London Neurology clinic (did i get it right) did a study of cluster sufferers and found that there’s a excess or "more" gray matter in the brains of cluster suffererers, that was considered breaking news in this area, not that anything will be done soon to help, but it’s apparently a link to help in the future according to them . love and hugs. — Mary f. <No Kitty! it’s MY POT PIE! _ _ ( / ) | ) ) _,,,/ (,,_ /, . ‘`~ ~-. ;-;;,_ |,4) -,_. , ( `’-’ ‘-~~’ (_/~~’ `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf
Hi Mary, Sounds like you are on top of things for sure. Sorry bout the e-mail thing. I was posting quite frequently in some ng’s using my e-mail as part of my sig. and I got bombarded with junk e-mail. I understand IE5 has a filter but I haven’t taken the time to download it yet. At any rate my e-mail address is snap4769 at mindspring dot com Just trying to stay clean of those robots. I really thought I was in a small world with these CH’s. When mine started I couldn’t find any ng’s or chat rooms, and much less any good information on any websites. This Internet has come a long way in just a few years. Lot’s of caring people out there too. In addition to my steroids my doctor also increased my prescription to Verelan Sr 120mg up to 240mg. I may end up needing to go to 480mg, but I’ll try the 240 for now. I just got a prescription to Migranal, a DHE-45 Ergotamine in the nasal spray form. I’m sure you are aware of this. I tried Imitrex nasal spray but it didn’t do the trick for those unexpected attacks. Maybe the Migranal will work. Better yet maybe I’ll never get to try it. Prayerfully thinking here! If those steroids didn’t make me so dad nabbit hungry they’d be okie-dokie. Fortunately we’re building a house and I have plenty of hard work about. Keep me from having to buy new clothes ya know. E-mail me anytime…..I’m a little slow……maybe every few days I get a real chance to take time to read a little. And just maybe someone will create a drug to reduce gray matter and we’ll give it a try. Them kitties sure do like them pot pies. See ya round! Sonnie Sonnie and Angie Parker Reply-to address is spam protected. Thank God this life is temporary!
Response:
Sounds like you are on top of things for sure. Sorry bout the e-mail thing. I was posting quite frequently in some ng’s using my e-mail as part of my sig. and I got bombarded with junk e-mail. I understand IE5 has a filter but I haven’t taken the time to download it yet. At any rate my e-mail address is snap4769 at mindspring dot com Just trying to stay clean of those robots.
Hey can’t blame you one bit there . Know the feeling of bombarded with SPAM. I really thought I was in a small world with these CH’s. When mine started I couldn’t find any ng’s or chat rooms, and much less any good information on any websites. This Internet has come a long way in just a few years. Lot’s of caring people out there too.
I bless ASHM for being here, and lots of people on it for helping me and Bernie out . In addition to my steroids my doctor also increased my prescription to Verelan Sr 120mg up to 240mg. I may end up needing to go to 480mg, but I’ll try the 240 for now.
I’m not sure what Verelan is? is that the same as verapamil? The blood pressure medicine? Bernie is on 480 of that (takes one in the morning and one in the evening). He was originally put on it for BP, but it was upped when the Clusters were diagnosed. I just got a prescription to Migranal, a DHE-45 Ergotamine in the nasal spray form. I’m sure you are aware of this. I tried Imitrex nasal spray but it didn’t do the trick for those unexpected attacks. Maybe the Migranal will work. Better yet maybe I’ll never get to try it. Prayerfully thinking here!
The imitex nasal didn’t work for bernie either, He’s never tried the Ergotamine, he’s skittish on drugs and many times will just try to tough it out with the tank of 02. If those steroids didn’t make me so dad nabbit hungry they’d be okie-dokie. Fortunately we’re building a house and I have plenty of hard work about. Keep me from having to buy new clothes ya know.
Yes the steroids do that, nasty side effect (I’ve had to take them for lupus, shoot, I’d rather loose my hair than go through the prednisone again! I looked like the pillsbury dough boy, ROTFL, bernie kept poking my stomach, he was EVIL 
.). And have you ever tried to O2 therapy? it works very well for bernie. Now it might be a fight with insurance, but it’s a darn lifesaver for him, as is breathing in very cold air, he’ll sometimes, when a bad one hits, breath O2, then walk into the coldest room in the house and stick his head in front of the air conditioner (we have window units),. E-mail me anytime…..I’m a little slow……maybe every few days I get a real chance to take time to read a little. And just maybe someone will create a drug to reduce gray matter and we’ll give it a try.
We are all wishing for that . One day, and hopefully in our lifetime. Them kitties sure do like them pot pies.
Yes with 4 in the house…it’s lots of fur and hairballs! . See ya round! Sonnie
You all take care, and I’m jealous about you building your house, we’ve done lots of work in our home ourselves, but we want to "build" our retirement home ourselves . hugs. Thank God this life is temporary!
And the afterlife is everlasting . — Mary f. <No Kitty! it’s MY POT PIE! _ _ ( / ) | ) ) _,,,/ (,,_ /, . ‘`~ ~-. ;-;;,_ |,4) -,_. , ( `’-’ ’-~~’ (_/~~’ `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf
Response:
I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Sonnie Parker Hi Sonnie, please go to clusterheadaches.com for wonderful support and
resources on these horrible headaches. Annie Share what you know. Learn what you don’t.
Response:
– Hide quoted text — Show quoted text – "Sonnie and Angie Parker" <guesswhoatmindspringdotcom I am a cluster headache sufferer, are there any readers out there that suffer from these type headaches? Sonnie Parker Hi Sonnie, please go to clusterheadaches.com for wonderful support and resources on these horrible headaches. Annie Share what you know. Learn what you don’t.
Yes, thanks! I have spent several years at that site…..it is wonderful. See you round! Sonnie and Angie Parker Reply-to address is spam protected. Thank God this life is temporary!
Response:
In addition to my steroids my doctor also increased my prescription to Verelan Sr 120mg up to 240mg. I may end up needing to go to 480mg, but I’ll try the 240 for now. I’m not sure what Verelan is? is that the same as
verapamil? The blood pressure medicine? Bernie is on 480 of that (takes one in the morning and one in the evening). He was originally put on it for BP, but it was upped when the Clusters were diagnosed.
Yes, same medicine……I guess Verelan is probably generic. Thank God this life is temporary! And the afterlife is everlasting .
AMEN! — Mary f. <No Kitty! it’s MY POT PIE! _ _ ( / ) | ) ) _,,,/ (,,_ /, . ‘`~ ~-. ;-;;,_ |,4) -,_. , ( `’-’ ‘-~~’ (_/~~’ `-’_) It’s a widdle,widdle, widdle pud (She’s not big on sharing, is she?) http://home.earthlink.net/~maryf
Sonnie and Angie Parker Reply-to address is spam protected. Thank God this life is temporary!
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