Hello all. So glad to find this group. I have just been diagnosed with NDPH — New Daily Persistent Headache

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  • Hi Cristen, wow cant believe its been so long for u...sadly NDPH is not something that seems to be high on the list for 'making us better'...i cant be right that all the docs do is change our meds....if only we could do more to raise awareness

  • Hi Cristen. Welcome to the 'club'. My 15 year old daughter has NDPH...almost at the 4 year mark.

  • Hi - I am hitting the 4 year mark - kind of depressing. Just started seing a headache specilist who diagnozed me with this lovely thing. At this point I don't even care what caused it, I just want to get control on the pain and the mood swings.

hi i have recently been diagnosed with ndph after 7 months of constant pain — New Daily Persistent Headache

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  • My guess is that neurontin will help keep the pain level down, but not make it better.... We're in the Topamax camp because it is twice a day dosing instead of three times a day.

  • Hi Hanna. I tried gabapentin and I actually responded to it a little which was a surprise. It helped my mood a lot, too. I ended up switching to topirimate (Topamax) because of weight gain. If I wasn't already over weight and pre diabetic I would have stuck it out because I think gabapentin is probably the best med there is as of now (my opinion). I have had NDPH for 22 years. Remember, just because some people experience certain side effects doesn't mean you will.

  • hi all

    thanks for all ur comments, its so good to hear from other with this and to hear what uv all tried.

    iv recently had a sinus ct scan, and am coming off the gabapentin as it did nothing at all. iv tried topiramate too and amitriptyline but nothing has a made atiny bit of difference

    eurgh very fed up, i cant believe how long some people have had this. im about to lose my job as i cant work right now, r many of u off work also?

    xx

Question Everytime I turn my head suddenly move or bend down strain sneeze... — Cluster Headaches Exposed

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  • I get CH but also sometimes get the kind of headache you are describing. I think it is to do with blood pressure. Cluster headache usually makes your nose stuffy or runny, sometimes your face gets puffy, eye swells up and the pain is always unimaginable, like you think it might kill you or if you had the strength you might kill yourself. But CH and migraine people often get all sorts of headaches in between.

Question Everytime I turn my head suddenly move or bend down strain sneeze... — Cluster Headaches Exposed

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  • I get CH but also sometimes get the kind of headache you are describing. I think it is to do with blood pressure. Cluster headache usually makes your nose stuffy or runny, sometimes your face gets puffy, eye swells up and the pain is always unimaginable, like you think it might kill you or if you had the strength you might kill yourself. But CH and migraine people often get all sorts of headaches in between.

I know i have msged most of u before. but please read again — New Daily Persistent Headache

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  • Claire, thanks for managing this page. Have you had the blood test? I looked at the info but it didn't sound too relevant in my daughter's case. You?

  • hi Susie, thanks so much. any relevant or new info i get i always post as u never know.

    Im having the blood test on Friday....all though the doc did i think i was totally mad for asking for it. The main part of the test can take a few weeks as its sent to a London lab. the other bits of the test will only take a week

  • Kidney stones hurt! Never heard of that side effect...Laura did the infusions...

My daughters NDPH was dx d about a month after Gardisil She is at a 12 10... — New Daily Persistent Headache

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  • feeling your pain....wanna talk?

  • Janice, I too have the ovarian cysts and am on birth control. They told me the head aches were not related to the cyst (PCOS) condition if that is what your daughter has. I found eating less simple sugars helpes with some of the ovary issues (don't know if it helps with the head.) Good luck and if you need to talk- we are here....

I am in a terribly bad cluster cycle to top it off im having it in conjunction... — Cluster Headaches Exposed

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  • yikes ,,stay strong !!!!!!!!!!!!

  • obviously you have tried alot of stuff. I am sorry to hear about your pain. I imagine you have tried almost everything but a few unconventional methods I have heard of might help? If you've heard them all please disregard but you never know, someone might have an idea that you never thought of. One thing I have heard of is a pressure point on the hand. it's in the webbing between the thumb and forefinger. It's kinda into the meat of the palm. if you follow the underside of the thumb straight into the palm it's about half an inch below the base of the thumb. it's worked a few times for my husband. Also use the oxygen at high litres. At least 7 or 8. I've heard drinking a gallon of water a day can interrupt a cycle. I've heard that taking Naproxen with the Imitrex gives it a little boost. I don't know why but that is what I have heard from the neuro's nurse.

    I know you've probably heard it all before but I think it's always worth repeating just in case there's something new.

    Please take care and you can message me anytime if you need someone to talk to. My husband has suffered with CH for over 20 years. I can understand what your boyfriend is going thru. It's frustrating on this end because there is nothing we can do to help and take away the pain. It takes a special person the survive the headaches and an equally special person to give support. It hurts me that there is nothing I can do to help my husband.

  • Get in touch with Dr. David Kudrow in Santa Monica, CA. Ask for a referral in your area. Or, if you can fly out here, he might just save your life as he did mine. He's one of the top three specialists in America. I was supposedly untreatable and doctors just said, "Good luck, please don't kill yourself." During my cycles (I used to be chronic) I'm on a massive cocktail but it works. And he wrote me out a precription for an oxygen tank without blinking an eye. Dr. Kudrow is the head of the Headache Clinic at UCLA, Faculty in Neurology... and the older brother of actress Lisa Kudrow. He looks like her, it's cute. Here's his website: http://www.calmedhead.com/ Good luck and hang in there!

I am in a terribly bad cluster cycle to top it off im having it in conjunction... — Cluster Headaches Exposed

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  • yikes ,,stay strong !!!!!!!!!!!!

  • obviously you have tried alot of stuff. I am sorry to hear about your pain. I imagine you have tried almost everything but a few unconventional methods I have heard of might help? If you've heard them all please disregard but you never know, someone might have an idea that you never thought of. One thing I have heard of is a pressure point on the hand. it's in the webbing between the thumb and forefinger. It's kinda into the meat of the palm. if you follow the underside of the thumb straight into the palm it's about half an inch below the base of the thumb. it's worked a few times for my husband. Also use the oxygen at high litres. At least 7 or 8. I've heard drinking a gallon of water a day can interrupt a cycle. I've heard that taking Naproxen with the Imitrex gives it a little boost. I don't know why but that is what I have heard from the neuro's nurse.

    I know you've probably heard it all before but I think it's always worth repeating just in case there's something new.

    Please take care and you can message me anytime if you need someone to talk to. My husband has suffered with CH for over 20 years. I can understand what your boyfriend is going thru. It's frustrating on this end because there is nothing we can do to help and take away the pain. It takes a special person the survive the headaches and an equally special person to give support. It hurts me that there is nothing I can do to help my husband.

  • Get in touch with Dr. David Kudrow in Santa Monica, CA. Ask for a referral in your area. Or, if you can fly out here, he might just save your life as he did mine. He's one of the top three specialists in America. I was supposedly untreatable and doctors just said, "Good luck, please don't kill yourself." During my cycles (I used to be chronic) I'm on a massive cocktail but it works. And he wrote me out a precription for an oxygen tank without blinking an eye. Dr. Kudrow is the head of the Headache Clinic at UCLA, Faculty in Neurology... and the older brother of actress Lisa Kudrow. He looks like her, it's cute. Here's his website: http://www.calmedhead.com/ Good luck and hang in there!

hi everyone — New Daily Persistent Headache

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  • I commend Laura and others on this page for your strength and determination to live your life despite #$(*# NDPH. I also strongly urge you to contact the National Institutes of Health director or head of neurologic issues. From what I can tell, there is no current research into this issue affecting so many of us. Write them a letter, tell them your story! And stay brave and strong.

  • Laura I feel for you have had NDPH since sept 2008 i know wot ure going through. And ure right there is not enough awareness about our condition. let alone a cure or enough types of medicine to treat us.

    lets all hope that they can find us a cure some time this century

  • im 16 and i hav NDPH too so i kno exactly what your going thru.

My husband just came home all curled up with a bad cluster we have tried... — Cluster Headaches Exposed

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  • Hi Lynette,

    spiritual or electric? kind of interesting way to put it..?! Ive been chronic for just about 25 years..funny, I had to stop & think last week about my time put into CH's. I kept saying 20 yrs. and when I thought my son's age, had to re-do the math! 24 yrs..!! WOW!

    Anyway, all's I know is these things have made me a more spiritual person. Idk how they couldnt..or wouldnt! Ask anyone of us who we call out for and 99.9% will tell you..God! Now, the majority might be pissed off at God..Im not, personally. Having these..(and I have a very hard time calling them headaches. I call them Clusterheadache attacks) attacks has made me a kind-er, gentle-er,more patient human being! Any description you give me, these attacks have made me more of it in a good way! Im more grateful for life, for my family. Im more conscious of other's and their thoughts & feelings. So, idk if that answers your question. I dont think God gave us these attacks per say..maybe he did. Im not gonna assume to know what God's divine plan might be. Ive had direct descendent of God (priests) lay hands on me and pray for my healing of these things and Im still a chronic sufferer! So, apparently THAT wasn't what he had in mind for me ;) My prayer for everyone of us is that we learn what we're supposed to from these things OR we stop doing whatever it is we're doing to cause this pain! And Im not even too sure how solid I am about that..but for now, that's what I pray..sorry to have rambled. Im switching from another CH page. Looking for a new home :) Pain free days & nights to all of us!!

  • shellie very nicely said! In my book GOD is GOOD! I think thats why we all SCREAM for him when we get attacked by the "beast" stay strong all we have each other!!

  • Amen, Anthony..God is good...and I know without him...I'm quite sure I probably wouldn't be here after dealing with these things for 20+ years chronically!! I mentioned I was looking for a -new(cluster) home in my earlier post, and I've decided on this one!! I would love some new friends from this page!!;)) Be well everyone!

My husband just came home all curled up with a bad cluster we have tried... — Cluster Headaches Exposed

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  • Hi Lynette,

    spiritual or electric? kind of interesting way to put it..?! Ive been chronic for just about 25 years..funny, I had to stop & think last week about my time put into CH's. I kept saying 20 yrs. and when I thought my son's age, had to re-do the math! 24 yrs..!! WOW!

    Anyway, all's I know is these things have made me a more spiritual person. Idk how they couldnt..or wouldnt! Ask anyone of us who we call out for and 99.9% will tell you..God! Now, the majority might be pissed off at God..Im not, personally. Having these..(and I have a very hard time calling them headaches. I call them Clusterheadache attacks) attacks has made me a kind-er, gentle-er,more patient human being! Any description you give me, these attacks have made me more of it in a good way! Im more grateful for life, for my family. Im more conscious of other's and their thoughts & feelings. So, idk if that answers your question. I dont think God gave us these attacks per say..maybe he did. Im not gonna assume to know what God's divine plan might be. Ive had direct descendent of God (priests) lay hands on me and pray for my healing of these things and Im still a chronic sufferer! So, apparently THAT wasn't what he had in mind for me ;) My prayer for everyone of us is that we learn what we're supposed to from these things OR we stop doing whatever it is we're doing to cause this pain! And Im not even too sure how solid I am about that..but for now, that's what I pray..sorry to have rambled. Im switching from another CH page. Looking for a new home :) Pain free days & nights to all of us!!

  • shellie very nicely said! In my book GOD is GOOD! I think thats why we all SCREAM for him when we get attacked by the "beast" stay strong all we have each other!!

  • Amen, Anthony..God is good...and I know without him...I'm quite sure I probably wouldn't be here after dealing with these things for 20+ years chronically!! I mentioned I was looking for a -new(cluster) home in my earlier post, and I've decided on this one!! I would love some new friends from this page!!;)) Be well everyone!

A really bad night and morning 7 attacks and rising used oxygen for all... — Cluster Headaches Exposed

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  • this was an isolated case, it's not normal, meaning I've never experienced in such a rapid sucession of attacks 1 after another. I do take lithium which seems to help a little with the frequency of attacks, but 1 month prior to this particular attack I had stopped taking the lithium (was taking it for the larger part of what has become a 6 month cycle--longest I've ever had) and once I stopped taking it, I had daily severe attacks for most of November. I missed a few doses and it may have resulted in this. I'm not sure. I am using Oxygen and for the most part it stops the headaches within 20 minutes or less, but we all know 20 minutes is about 15-19 minutes too long to endure the level of pain that we sometimes have to face. However, in this particular case, it was as if the oxygen wasn't having much of an effect. I used almost half of my super large 02 tank that morning. Sadly, there is no imitrex for me available (maybe this is good, I dont know) IN South Korea, the drug is not available, government won't approve it, or anything that they see as potentially addictive. Luckily, I can fairly easily get an O2 tank (cost about 200 dollars) and refills are only like 10 dollars, and they deliver it to my house. I can't be sure that I am getting 100% O2, they say I am, but I wouldn't know if I wasn't. Karen, what kind of daily meds does your husband get? Lynnette, I never tried sitting in an ice cold tub, and I would if I could, but tubs are not common here, and ice also hard to come by in large quantities. I gotta work with what's out here, so I'll be trying the alternative treatment Kudzuu very soon. It's a Chinese herb and easy to get here. Thanks for the feedback! all of you! Chin up, and I thank God we have support.

  • My husband corrected me "not ice cold" but cold water (to constrict the blood vessels- or the theory anyway). He says that he tries to put himself in a hypothermic state. Could you try putting your head in a bowl of cold water perhaps?

    Manuel, the Imitrex is a vasoconstrictor - very expensive here but we found a way to get it cheaper. It can work as quickly as 5 minutes but sometimes takes up to a half hour. My husband has tried everything (sniffing cayenne pepper, stadol, chiropractic care...) it costs like a $100.00 a dose and he could average 4 doses in a 24 hour period (though it is not recommended to take more then 3). Our country is very corrupt in that the more pain you are in the more expensive the medicine. I will go to the natural food store tomorrow and try to get Kudzu-who says it works???

    I am glad for you that you can cling to our heavenly father in your pain.

  • FYI..I "break" my Imitrex into smaller doses so I can use it to deal with more attacks! You have to request the vials/needles, you cant do this with the stat-dose.Its literally saved me more times that I can mention!!

A really bad night and morning 7 attacks and rising used oxygen for all... — Cluster Headaches Exposed

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  • this was an isolated case, it's not normal, meaning I've never experienced in such a rapid sucession of attacks 1 after another. I do take lithium which seems to help a little with the frequency of attacks, but 1 month prior to this particular attack I had stopped taking the lithium (was taking it for the larger part of what has become a 6 month cycle--longest I've ever had) and once I stopped taking it, I had daily severe attacks for most of November. I missed a few doses and it may have resulted in this. I'm not sure. I am using Oxygen and for the most part it stops the headaches within 20 minutes or less, but we all know 20 minutes is about 15-19 minutes too long to endure the level of pain that we sometimes have to face. However, in this particular case, it was as if the oxygen wasn't having much of an effect. I used almost half of my super large 02 tank that morning. Sadly, there is no imitrex for me available (maybe this is good, I dont know) IN South Korea, the drug is not available, government won't approve it, or anything that they see as potentially addictive. Luckily, I can fairly easily get an O2 tank (cost about 200 dollars) and refills are only like 10 dollars, and they deliver it to my house. I can't be sure that I am getting 100% O2, they say I am, but I wouldn't know if I wasn't. Karen, what kind of daily meds does your husband get? Lynnette, I never tried sitting in an ice cold tub, and I would if I could, but tubs are not common here, and ice also hard to come by in large quantities. I gotta work with what's out here, so I'll be trying the alternative treatment Kudzuu very soon. It's a Chinese herb and easy to get here. Thanks for the feedback! all of you! Chin up, and I thank God we have support.

  • My husband corrected me "not ice cold" but cold water (to constrict the blood vessels- or the theory anyway). He says that he tries to put himself in a hypothermic state. Could you try putting your head in a bowl of cold water perhaps?

    Manuel, the Imitrex is a vasoconstrictor - very expensive here but we found a way to get it cheaper. It can work as quickly as 5 minutes but sometimes takes up to a half hour. My husband has tried everything (sniffing cayenne pepper, stadol, chiropractic care...) it costs like a $100.00 a dose and he could average 4 doses in a 24 hour period (though it is not recommended to take more then 3). Our country is very corrupt in that the more pain you are in the more expensive the medicine. I will go to the natural food store tomorrow and try to get Kudzu-who says it works???

    I am glad for you that you can cling to our heavenly father in your pain.

  • FYI..I "break" my Imitrex into smaller doses so I can use it to deal with more attacks! You have to request the vials/needles, you cant do this with the stat-dose.Its literally saved me more times that I can mention!!

Got my first CH last night only a weak one but start feeling racey 2 weeks ago... — Cluster Headaches Exposed

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  • my husband got his just in time for christmas as well- I fear he will suffer until spring - is that the same cycle for you? The Imitrix is not working...rebounds...God have mercy

  • Kimberly, what is your climate? We live in the NH, USA- cold winters, hot summers....also were you ever in a car accident? My husband starting getting his CH about 18 years ago, right after he hit his head in an accident-never went to the hospital-whip lash....I guess I'm just trying to find the WHY for all his pain....I will keep you in my prayers with my husband....Lynnette

    ps. he has tried everything as well- since all resources are exhausted I am trying to research the spirtual realm

  • Interesting, I never really thought of a car accident having any influence because in all the studies and research there doesn't appear to be any mention of head injuries and cluster headaches. I ought to check out the forums in clusterheadaches.com Now, I wouldn't be so quick to jump to conclusions just based on our three reports because any good research would take more of a scientific analysis of the data and consider all variables, but yes I also had an accident about two years prior to my first cluster headache.Mine was minor, and I too didn't visit the hospital because I felt no pain, and didn't have any visible injuries. However, when I first got my headaches I did see a neurologist in Germany who did a scan of my head (maybe cat scan?) and she didn't find any problem, she could only tell me I didnt have migraines, but at that time not one of the 5 doctors I saw knew anything about cluster headaches (family doc,eyes nose and ears doc, eye doc, orthopedic doc, neurologist doc). anywas, point is that it is something to check out, see how many others have had head injuries.

Got my first CH last night only a weak one but start feeling racey 2 weeks ago... — Cluster Headaches Exposed

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  • my husband got his just in time for christmas as well- I fear he will suffer until spring - is that the same cycle for you? The Imitrix is not working...rebounds...God have mercy

  • Kimberly, what is your climate? We live in the NH, USA- cold winters, hot summers....also were you ever in a car accident? My husband starting getting his CH about 18 years ago, right after he hit his head in an accident-never went to the hospital-whip lash....I guess I'm just trying to find the WHY for all his pain....I will keep you in my prayers with my husband....Lynnette

    ps. he has tried everything as well- since all resources are exhausted I am trying to research the spirtual realm

  • Interesting, I never really thought of a car accident having any influence because in all the studies and research there doesn't appear to be any mention of head injuries and cluster headaches. I ought to check out the forums in clusterheadaches.com Now, I wouldn't be so quick to jump to conclusions just based on our three reports because any good research would take more of a scientific analysis of the data and consider all variables, but yes I also had an accident about two years prior to my first cluster headache.Mine was minor, and I too didn't visit the hospital because I felt no pain, and didn't have any visible injuries. However, when I first got my headaches I did see a neurologist in Germany who did a scan of my head (maybe cat scan?) and she didn't find any problem, she could only tell me I didnt have migraines, but at that time not one of the 5 doctors I saw knew anything about cluster headaches (family doc,eyes nose and ears doc, eye doc, orthopedic doc, neurologist doc). anywas, point is that it is something to check out, see how many others have had head injuries.

posted in Cluster Headaches Exposed — with Michael Byrnes. — Cluster Headaches Exposed

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  • I've been great Shellie Clark Masini haven't had an attack since 2009 so I'm thankful every day for that. But I still support all those who are battling this as I battled it for 7-8 yeas with some extreme times that were as painful and tough as all I read here (except the chronics..that is something I've never had).

  • Xxxxxxx Yzzzzzz, so glad to hear you're getting a reprieve!! Enjoy it, my friend!!

  • That's it... that's me!