I have all the symptoms for cluster headaches except one thing. My attacks occur every OTHER day and last at the minimum - 4-6 hours. After that 4-6 hours, the pain does not completely go away, but instead goes from 10/10 pain to about 6/10 pain and becomes dull until i either go to sleep or drink coffee.

The pain is consistently severe throughout the duration and is slightly helped by applying ice packs to the side of my head and over my eye.

This is the only thing that worries me (I don't have the money to get a scan of my head to get the correct diagnosis) since every site about CH says they should occur in small attacks throughout the day every day.

I've been prescribed sumatriptan and prednisone but I really don't want to take either one of them. I hate taking those types of drugs you never know what effect it'll have on your body...

It's vital to get a proper diagnosis as there are many conditions which mimic CH. That said, no 2 of us are the same. My CH is totally random. When I'm in a cycle I will have up to 6 a day but then in remission I will still get "one offs".  I have been pain free for several months, then 3 days ago I got  7/10, and nothing since.

Take the cluster quiz (blue tab on the left of your  screen) which may help you make up your mind, and take the results to a doctor, preferably a headache specialist.

In the meantime, You are lucky. You asked your doctor for help and he gave it to you. Most of us have waited years to find someone willing to help. If you are in severe pain, then please try the drugs. That is what they are for, and well worth it for some relief. Maybe you could ask for some oxygen too. You need at least 15 litres per minute with a non-rebreather mask. It should abort a bad CH in 5 - 10 minutes.
Maz.

maz wrote on Jun 26^th, 2014 at 4:01pm:

It's vital to get a proper diagnosis as there are many conditions which mimic CH. That said, no 2 of us are the same. My CH is totally random. When I'm in a cycle I will have up to 6 a day but then in remission I will still get "one offs".  I have been pain free for several months, then 3 days ago I got  7/10, and nothing since. Take the cluster quiz (blue tab on the left of your  screen) which may help you make up your mind, and take the results to a doctor, preferably a headache specialist. In the meantime, You are lucky. You asked your doctor for help and he gave it to you. Most of us have waited years to find someone willing to help. If you are in severe pain, then please try the drugs. That is what they are for, and well worth it for some relief. Maybe you could ask for some oxygen too. You need at least 15 litres per minute with a non-rebreather mask. It should abort a bad CH in 5 - 10 minutes. Maz.

I see, thank you. I took the quiz and according to it, it's very likely that it's CH. considering the only difference i have is the duration, there is not much else it could be (i've been researching the ones that are very similar to CH in the meantime after posting this).

And yes I'm very lucky. I've only had to deal with this for about 2-3 years before realizing it was CH. I know others have gone decades before diagnosing it. However, I did still have to deal with the social aspect where no one understands why you're being such a wimp about a headache... even my parents have abandoned me .. they think it's just eye strain...

considering  the only difference i have is the duration,

There are many differences with CH. Not only from person to person, but also with each individual persons attacks.  To use my own as an example again, I have had them last 20 minutes, and I had one that lasted 16 hours. (that one nearly killed me). Sometimes I get 2 per day, sometimes I get 4 during the course of one night followed by 6 during the day,sometimes only at night, sometimes only during the day. And as I said before there are my "one offs" that come from nowhere.

You may find you will settle into a pattern, and just when you think you know what to expect ,it will change.

People not understanding (how could they) is something we all learn to deal with. Unless they have experienced this kind of pain they cannot possibly have any idea. CH has been described on another site (sorry, can't remember where) as the worst pain known to medical science. Without experience of it it's impossible to imagine. Direct your parents to this site and get them to read all they can, particularly from the tabs on the left.

Try to get the oxygen as I suggested - drug free miracle juice. As for the sumatriptan, the pills take too long to get in your system to be of much help, but the auto injections are fantastic. They are my new best friend, and I never leave home without them.

Tell us a bit about yourself - age, gender, and where you live. It will help us to send you in the right direction  for help.

Finally, there ARE people who understand - us. Come back any time with your questions, or just to rant if you need to, and we'll do all we can to help.

Hi Shimura and welcome,
Maybe show your parents this article for them to get a
better idea what us clusterheads have to go through.

Professor Peter Goadsby; director of the UCSF Headache Center and one of the world's leading headache experts and researchers has commented:

"Cluster headache is probably the worst pain that humans experience. I know that’s quite a strong remark to make, but if you ask a cluster headache patient if they’ve had a worse experience, they’ll universally say they haven't. Women with cluster headache will tell you that an attack is worse than giving birth. So you can imagine that these people give birth without anesthetic once or twice a day, for six, eight, or ten weeks at a time, and then have a break. It's just awful."

The condition was originally named Horton's Cephalalgia after Dr. B.T Horton. His original paper describes the severity of the headaches as being able to take normal men and force them to attempt or complete suicide. From Horton's 1939 paper on cluster headache:

"Our patients were disabled by the disorder and suffered from bouts of pain from two to twenty times a week. They had found no relief from the usual methods of treatment. Their pain was so severe that several of them had to be constantly watched for fear of suicide. Most of them were willing to submit to any operation which might bring relief."

Best, Hoppy.

Don't necessarily rule out anything based on what you think clusters should be like, as there exists quite a bit of variation between sufferers. I myself find that I absolutely cannot stand to be sitting upright during my attacks, while others feel that laying down is intolerable. The length you describe, while uncommon, seems still within range of a cluster attack. Lingering pain is also common. I usually feel like I have a hangover for the rest of the day depending on the severity of the attack.

The drugs you have are worth trying under a doctor's supervision, as they have helped me through cycles before. Obviously you don't want to take prednisone any more than necessary, but it could break up your cycle for you.

Dear Shimura,

It might be CH - the symptoms do vary. I think you should try using O2, which will also help with the diagnosis. And it's far more healthy than any medication.

Don't rule out Imitrex. It's not that terrible medicine.

And you  should consider doing the D3 Anti Inflammatory regimen, which is safer than most treatments.

Good luck!

Keep in mind--this is the legal way of saying: What you read here is not a substitute for sound medical guidance!
------------------
"DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!"
=======================
Whly would you trust in strangers when you have refused to trust in a good doc who offered treatment with some of the best meds we use?

Bob Johnson wrote on Jun 27^th, 2014 at 9:12am:

Keep in mind--this is the legal way of saying: What you read here is not a substitute for sound medical guidance! ------------------ "DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!" ======================= Whly would you trust in strangers when you have refused to trust in a good doc who offered treatment with some of the best meds we use?

     Best reply ever.

             Potter

Bob Johnson wrote on Jun 27^th, 2014 at 9:12am:

Whly would you trust in strangers when you have refused to trust in a good doc who offered treatment with some of the best meds we use?

First I want to say thank you to everyone for the replies. Very helpful.

Second, in reply to this quote, even though at first it does sound ridiculous, there is at least one valid reason to trust strangers over doctors when it comes to CH:

Whether we like to admit it or not, doctors generally are out to fill prescriptions, not to find you the the most harmless and most effective course of action to treat your illness. Now don't get me wrong, I'm sure there are plenty of doctors out there that aren't just trying to fill prescriptions, but there are also plenty that are.

So, in other words, for every drug a doctor prescribes I believe there is at least one less harmful or more effective alternative that someone out there knows of or has not yet been discovered.

Thirdly, I have decided to try the d3 anti inflammatory regimen. This seems more like my type of treatment. My next option would be oxygen. THEN and only then... when those things don't work.. I'll try taking prescribed drugs.

Thank you.

Shimura wrote on Jun 27^th, 2014 at 2:17pm:

Bob Johnson wrote on Jun 27th, 2014 at 9:12am: Whly would you trust in strangers when you have refused to trust in a good doc who offered treatment with some of the best meds we use? First I want to say thank you to everyone for the replies. Very helpful. Second, in reply to this quote, even though at first it does sound ridiculous, there is at least one valid reason to trust strangers over doctors when it comes to CH: Whether we like to admit it or not, doctors generally are out to fill prescriptions, not to find you the the most harmless and most effective course of action to treat your illness. Now don't get me wrong, I'm sure there are plenty of doctors out there that aren't just trying to fill prescriptions, but there are also plenty that are. So, in other words, for every drug a doctor prescribes I believe there is at least one less harmful or more effective alternative that someone out there knows of or has not yet been discovered. Thirdly, I have decided to try the d3 anti inflammatory regimen. This seems more like my type of treatment. My next option would be oxygen. THEN and only then... when those things don't work.. I'll try taking prescribed drugs. Thank you.

     You're self diagnosed and that's foolish.  Your head could explode and leave you a drooler in a wheelchair.  Get a real diagnosis.

             Potter

wrote on Jun 27^th, 2014 at 3:32pm:

You're self diagnosed and that's foolish.  Your head could explode and leave you a drooler in a wheelchair.  Get a real diagnosis.              Potter

Lol... I've been reading your posts while researching the forum, Potter, and while I respect you, please don't be so naive. Not everyone has the money or the insurance to recieve a proper diagnosis. I don't have a personal doctor or neurologist. I go to a community health center when I have a problem.

If i were to wrongly diagnose myself and turns out i had brain cancer or a tumor, then, well, there's nothing that could be done. Money makes the world go round my friend.

I will say, however, that after reading more on the forum, I have no doubt that it is indeed CH. So, thank you but that type of talk isn't needed.

If you are going to self-diagnose, at least know the risks;

Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Shimura wrote on Jun 27^th, 2014 at 3:38pm:

wrote on Jun 27th, 2014 at 3:32pm:      You're self diagnosed and that's foolish.  Your head could explode and leave you a drooler in a wheelchair.  Get a real diagnosis.              Potter Lol... I've been reading your posts while researching the forum, Potter, and while I respect you, please don't be so naive. Not everyone has the money or the insurance to recieve a proper diagnosis. I don't have a personal doctor or neurologist. I go to a community health center when I have a problem. If i were to wrongly diagnose myself and turns out i had brain cancer or a tumor, then, well, there's nothing that could be done. Money makes the world go round my friend. I will say, however, that after reading more on the forum, I have no doubt that it is indeed CH. So, thank you but that type of talk isn't needed.

Good luck because you're gonna need it with that attitude.

             Potter

Bob Johnson wrote on Jun 27^th, 2014 at 4:20pm:

If you are going to self-diagnose, at least know the risks; Look under: Medications,  Treatments,  Therapies › Important Topics >Cluster-LIKE headache

Ok, thank you. I'll take all that into consideration. I just started the d3 regimen and so far I'm pain free on a day where I'm scheduled for pain. Wish me luck haha.


wrote on Jun 27^th, 2014 at 4:22pm:

Good luck because you're gonna need it with that attitude.              Potter

Are you sure I am the one with the attitude? Allow me to post what you said once more to me once more:


wrote on Jun 27^th, 2014 at 4:22pm:

You're self diagnosed and that's foolish.  Your head could explode and leave you a drooler in a wheelchair.  Get a real diagnosis.              Potter

I'm not here to argue with anyone, but if you're going to call someone foolish and belittle their intelligence, you better be prepared when someone says "that type of talk isn't needed".

The fact that you even highlighted that as proof of "attitude" shows that you are childish and can't take responsibility for your actions. You lost any respect you had from me.

Thank you to everyone else; this has been resolved.

We all make our own choices, and destiny.

Hoppy.

dear shimura please seek the help of a professional. your defensive attitude could be the result of not receiving the validation you so desperately need. you could possibly be a cyberchondriac with migraines. your parents know you best , they did raise you didnt they? best of luck to you .

wrote on Jun 28^th, 2014 at 12:12am:

dear shimura please seek the help of a professional. your defensive attitude could be the result of not receiving the validation you so desperately need. you could possibly be a cyberchondriac with migraines. your parents know you best , they did raise you didnt they? best of luck to you .

Lol ok this is kind of getting pathetic now. Please stop, you're just embarassing yourself. The matter has already been resolved.

hi sumura,
o.k,  so you've been subscribed medication, a doctor would be required to write a script for that,  so a doctor agrees with you and has diagnosed you as having cluster headaches ?
im sorry to say this, but your totally all over the place, going from lectures on ethics of doctors dispensing drugs, to calling people pathetic, for correctly advising you that only a proper medical diagnosis is the only way to 100% confirm that it isn't one of the many mimicking conditions, some far more serious than clusters !
  sumura,  there's lots of people here that can help in so many ways if it turns out you do indeed have clusters, I do hope you stick around and join in and listen and learn.
after all, you did join up here to learn,
keep that in mind.....
best wishes
colin

wrote on Jun 28^th, 2014 at 9:54am:

hi sumura, o.k,  so you've been subscribed medication, a doctor would be required to write a script for that,  so a doctor agrees with you and has diagnosed you as having cluster headaches ? im sorry to say this, but your totally all over the place, going from lectures on ethics of doctors dispensing drugs, to calling people pathetic, for correctly advising you that only a proper medical diagnosis is the only way to 100% confirm that it isn't one of the many mimicking conditions, some far more serious than clusters !   sumura,  there's lots of people here that can help in so many ways if it turns out you do indeed have clusters, I do hope you stick around and join in and listen and learn. after all, you did join up here to learn, keep that in mind..... best wishes colin

I'm not all over the place. If you feel I am all over the place I suggest you re-evaluate your own reading comprehension skills.

Yes, I have discussed my symptoms with a doctor and he agreed that I have cluster headaches, however, no "scans" have been done on me to confirm it. I appreciate the concern but it's not necessary...

Then I guess we're done here.

           Potter

hi shimura,
             after following your advice and re evaluating my reading comprehension skills ive come to the conclusion, that with 2 degree's and a masters,  im all good !
wow, that's quite a few sharp retorts you've thrown out to people in only a few short posts shimura !!!
including your parents, your doing a good job of alienating  people that are trying to help you !
good luck with your quest to be pain free !
as potter said "..........................

colin

    
 

Hi shimura,
I'll tell you where every one is coming from. You can lead a horse to water but you can't make him drink, right?  You went to a doctor for help, he gave you the help you asked for and you refuse to take it. There is nothing more anyone can do, except advise you to go ahead and take the drugs.

We understand that you can't afford a scan.We're not all millionaires here, and if it had not been covered by our NHS I would have had to save up for it. But even if you HAD had a scan which confirmed CH the drugs you've been given would be the same. Even after my scan, it was another 2 years before I was prescribed the correct meds, and that was only after I found out everything for myself from this site, and asked for it. So you are lucky to have a doctor who is switched on enough to know what you need.

No one likes to take drugs, but there are trillions of people around the world who's lives would be intollerable without them. Including CH sufferers. The effects on your body cannot be any worse than the stress caused by CH. I'm a 63 year old woman and there have been many times during a full blown attack that I've wondered how much more stress my heart and blood pressure can take. And that brings more stress.

When I was in the middle of a 10/10 with my future stretched before me with no help, I was in a very dark place and believed I could not face my life any more. I think most of us here have probably felt the same at some point. Then I got the sumatriptan injections, and although I was scared to death of taking them I honestly didn't think there was anything I could do to my self that was worse than CH.

So one night, after 30 minutes resisting the meds,hoping in vain that it would stop bt itself, thrashing and praying to die I took my first injection. Ten minutes later I was totally pain free, drinking tea, eating cake and wondering why I hadn't taken them before. You may find they don't suit you or you have side effects - not everything works for every one, but at least give it a try. Personally I don't have any bad effects at all. Just blessed relief. Sumatriptan (when I'm out) and oxygen (when I'm at home) have transformed my life. NO - they probably saved my life because I was at the end of my rope.

Your doctor has helped you all he can. So unless you actually prefer the pain for Gods sake help yourself and take the drugs. It's up to you now.
Best wishes
Maz.

wrote on Jun 28^th, 2014 at 10:28pm:

hi shimura,              after following your advice and re evaluating my reading comprehension skills ive come to the conclusion, that with 2 degree's and a masters,  im all good ! wow, that's quite a few sharp retorts you've thrown out to people in only a few short posts shimura !!! including your parents, your doing a good job of alienating  people that are trying to help you ! good luck with your quest to be pain free ! as potter said ".......................... colin

No, no, no. You're mistaken. The first half dozen posts were people trying to help me. They received my gratitude. The people after that point were just trying to be self-righteous and belittle me based on their assumptions. Those people don't deserve my gratitude.



maz wrote on Jun 29^th, 2014 at 3:31am:

Hi shimura, I'll tell you where every one is coming from. You can lead a horse to water but you can't make him drink, right?  You went to a doctor for help, he gave you the help you asked for and you refuse to take it. There is nothing more anyone can do, except advise you to go ahead and take the drugs. We understand that you can't afford a scan.We're not all millionaires here, and if it had not been covered by our NHS I would have had to save up for it. But even if you HAD had a scan which confirmed CH the drugs you've been given would be the same. Even after my scan, it was another 2 years before I was prescribed the correct meds, and that was only after I found out everything for myself from this site, and asked for it. So you are lucky to have a doctor who is switched on enough to know what you need. No one likes to take drugs, but there are trillions of people around the world who's lives would be intollerable without them. Including CH sufferers. The effects on your body cannot be any worse than the stress caused by CH. I'm a 63 year old woman and there have been many times during a full blown attack that I've wondered how much more stress my heart and blood pressure can take. And that brings more stress. When I was in the middle of a 10/10 with my future stretched before me with no help, I was in a very dark place and believed I could not face my life any more. I think most of us here have probably felt the same at some point. Then I got the sumatriptan injections, and although I was scared to death of taking them I honestly didn't think there was anything I could do to my self that was worse than CH. So one night, after 30 minutes resisting the meds,hoping in vain that it would stop bt itself, thrashing and praying to die I took my first injection. Ten minutes later I was totally pain free, drinking tea, eating cake and wondering why I hadn't taken them before. You may find they don't suit you or you have side effects - not everything works for every one, but at least give it a try. Personally I don't have any bad effects at all. Just blessed relief. Sumatriptan (when I'm out) and oxygen (when I'm at home) have transformed my life. NO - they probably saved my life because I was at the end of my rope. Your doctor has helped you all he can. So unless you actually prefer the pain for Gods sake help yourself and take the drugs. It's up to you now. Best wishes Maz.

I appreciate the anecdote and words of wisdom, Maz, however I believe you must've missed a post or two of mine.

There is a big difference between being rebellious and refusing medicine that was given to me from a doctor and being a cautious man. If I have come here expressing my caution over these drugs and asking for alternatives, what do you think that means?

I'll tell you. It means I'm a man capable of enduring the severe pain from CH long enough to make a level-headed decision about what to put in my body. I am not so far gone that I'll get on my knees and swallow whatever is given to me. I make my own decision based on my own research. That's a survival trait and something most people don't have anymore.

You seem to have missed the part where I said I'd be trying the D3 regimen, which, to me seems much safer than my other options and it is a preventative treatment, meaning if it works as it should, I won't have to "abort" the attacks. Prevention is always better.

It's been 3 days and I've had no attacks. I believe it was Batch who started this regimen? I'll have to personally thank him.

Shi, you seem like a kid who needs professional help. Best of luck. Do some more reading so you know of what you speak.

wrote on Jun 29^th, 2014 at 6:24pm:

Shi, you seem like a kid who needs professional help. Best of luck. Do some more reading so you know of what you speak.

Irony.

Yes shimmy ironic indeed. I sincerely hope the D3 regimen continues to work for you and that you are able to reconcile with your friends and family. Best of luck to you

wrote on Jun 29^th, 2014 at 11:21pm:

Yes shimmy ironic indeed. I sincerely hope the D3 regimen continues to work for you and that you are able to reconcile with your friends and family. Best of luck to you

Reconcile with my friends and family... even though I said my parents abandoned me I only meant in terms of my headaches. I haven't been alienated from my friends and family or anything. My situation is not nearly as serious as you probably think it is. That's what happens when you assume things about others.

Anyway, thanks, I hope it continues to work too :)

Dearest shimmy no offense intended they are just words of comfort. Don't assume that we assume anything since we don't know you anymore than you know us. Take care

So ya decided to try the D3 regimen on the 27th and on the 29th you are pain free.
   That's odd as it usually takes some time for the D3 levels to increase to the point of being effective.

             Potter

As potter said, it takes a while, sometimes weeks, for D3 levels to be high enough to be effective. You have probably just gone out of cycle. Which is good.
Maz.

maz wrote on Jun 30^th, 2014 at 10:14am:

As potter said, it takes a while, sometimes weeks, for D3 levels to be high enough to be effective. You have probably just gone out of cycle. Which is good. Maz.

No, unfortunately I never went out of cycle. I took the vitamins the day before I was scheduled for my attack. The next day, instead of having my normal attack, I instead had a shadow that lasted the whole day, which.. was scary because it felt like it was going to come on full force any minute, but never did, and that's never ever happened to me before. The next two days nothing happened. (I get them every other day)

I decided to cut back on the d3 IU since I was taking 30,000 and I tried taking 10,000. Later that night, I got a very minor attack. Drank some coffee and it stopped. I have never had "minor" attacks. Nor have I ever skipped a day in my cycle. So for me that is a lot of circumstantial evidence, but there is still a very small chance that it's coincidental. We'll see.

Hi Shimura
As I said before (reply#3) Ch can change from atack to attack and what has never happened before can happen now. It may only happen once or it may happen a few times, till it changes again.

What you have described does sound like you are going out of cycle. The pain slowly tapering down in intensity, duration and regularity untill it goes away for a while. Sometimes for me this process can take a couple of weeks and at other times it just stops dead and I don't have another one for months.

Caffiene is good for minor attacks and shadows - as is taurine. 
Caffiene + taurine = redbull energy drinks.

I hope you stay pain free.
Maz.

Yes shimmy, in order to do the D3 regimen properly you need to have your pcp do some blood work and check your serum level. That's what I was referring to when I said you should read some more . No offense intended but Having a few good days after taking D3 for the first time is more likely a placebo effect or It could be a miracle. Take care

Shimira
You can get brain scans for cheap if you pay cash and go to a modern imaging facility. If you go to a hospital they will make you wait 2 weeks, then sit in the lobby for 2 hours, then charge you 2000 dollars against your deductible. But if you go to a third party imaging company that are popping up everywhere, they will allow you to walk in and get a scan immediately and charge you $357 for a brain scan without contrast if you claim you don't have insurance. At least this was my experience. You need to make sure you don't have a tumor.