Seeing doctor after doctor... I call bulls**t! I know that I know that I know that my "cluster headaches" are FAR more sinus related than doctors, researchers, and scientists think. Doctors have no IDEA what causes cluster headaches....and they will tell you that ( with the exeption of their vascular theories). When doctors tell me..."I really don't know what causes them", I'm left thinking, and thinking, trying to figure what the root cause is. Imitrex, MAXALTS, O2...all expensive...( gotta love those drug companies making a hefty profit). I'm on a mission to get to the bottom of this and finding a cure, not a fix. I'm sick of living with the pain, and as GOD as my witness, I will not rest until I find the right answers. >:(

Care to describe your headaches.
Frequencies, time duration, how they begin, how often you have an attack in say 24 hours, do they wake you at night, can you remain still and calm, where is the pain centralized, is the pain in the sinus above the eye, the nose??? In or behind the eye, the temple area, cheekbone????
Maybe these answers will help us help you if you desire.

Doctors can be wrong.
Many here though not doctors are very well educated on clusters.

Unfortunately the complete cause of cluster headaches IS not yet known but the answers are getting clearer every day.

There are some similar headaches that begin in the sinuses, clusters are not one of them.

Oxygen if it helps is the second least expensive abortive out there for CH after RC seeds.

List all the major diseases and causes of death in humans and you will find that there is remarably little knowledge about the actual CAUSATION. Much is known about the processes of these disorders; much on the table by way of treatments--but not a whole lot about the actual sources/causes.

While you support research efforts to find answers--that's a responsible adult response--we still need to put much of our energy into learning how to protect ourselves (to be degree possible) and how to use--effectively--the treatments which are available.

Please read this little article. It's an effective tool for coping with CH and has broader uses for one's whole life.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Your frustration comes through loud and clear, constant, debilitating pain will do that. The fu%$ing things hurt, a lot.  :'(

Bob has given you some great advice, we all want to find a CURE for these things, find some quick surgery or that magic pill to halt attacks forever, but until we find the "cure", please take the time to learn about the different meds available to manage them. You shouldn't be hurting as much as it sounds like you are.

Oxygen can be inexpensive even if you have no coverage for it. Before I got Kaiser to pick up the bill I was out of pocketing it for years. The tanks were $4.50 a month for rental, and $11.00 for each refill. For the cost of dinner and a movie I'd have a months supply.

Hope we can help you, sounds like your hanging on by a thread. Honest, we all understand your pain, we've all been where you are right now, and we're always here for you.

Guiseppi

I started with the clusters when I was 20...I'm 35 now. My left nose stops up for a few days... then the headache starts saying "hello". 24 hrs a day for 3 weeks constant. Of course ya gotta love going to bed frightened that in a few hours I'll wake up rocking back and forth, moaning, hitting the imitrex nasal before i hit the toilet to puke from the pain. The whole left side of my face, head, and neck are having a really bad party that I was forced to join. The pressure builds up especially in my left ear...it decides to join the party ..and it loves to play the drums. I keep thinking..."ok...the eardrum is going to burst any minute now" I used to think I had a moth in it, kinda what it feels like. I've heard of some folks doing some sort of "exercises" when they have their monsters at night...I'm surprised they can rationalize during this...all I can think of is goo goo ga ga. Sometimes certain strong odors have set it off. The one I remember most was the smokey fireplace...that was a "goodern" as we southern folks say. I smoke...alot 2-3 packer a day. I don't drink. I don't use recreational drugs. When I tell my family I have a cluster headache...they say I've been watching soap operas. Yeah, they're really funny f**ckers. 15 years is a long time to deal with this, and I really hone in on anything when it starts rearing its ugly head to learn what might be causes. I feel like a dog that can only run to its chain and bark now. No freedom from this. Imitrex, mixing tylenol and asprin, and whatever else the doctor will throw at me for 24/7 for 3 weeks constant...enough to kill a horse. That's about where I'm at. Any suggestions. :-/

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

I started with the clusters when I was 20...I'm 35 now. My left nose stops up for a few days... then the headache starts saying "hello". 24 hrs a day for 3 weeks constant. Of course ya gotta love going to bed frightened that in a few hours I'll wake up rocking back and forth, moaning, hitting the imitrex nasal before i hit the toilet to puke from the pain. The whole left side of my face, head, and neck are having a really bad party that I was forced to join. The pressure builds up especially in my left ear...it decides to join the party ..and it loves to play the drums. I keep thinking..."ok...the eardrum is going to burst any minute now" I used to think I had a moth in it, kinda what it feels like. I've heard of some folks doing some sort of "exercises" when they have their monsters at night...I'm surprised they can rationalize during this...all I can think of is goo goo ga ga. Sometimes certain strong odors have set it off. The one I remember most was the smokey fireplace...that was a "goodern" as we southern folks say. I smoke...alot 2-3 packer a day. I don't drink. I don't use recreational drugs. When I tell my family I have a cluster headache...they say I've been watching soap operas. Yeah, they're really funny f**ckers. 15 years is a long time to deal with this, and I really hone in on anything when it starts rearing its ugly head to learn what might be causes. I feel like a dog that can only run to its chain and bark now. No freedom from this. Imitrex, mixing tylenol and asprin, and whatever else the doctor will throw at me for 24/7 for 3 weeks constant...enough to kill a horse. That's about where I'm at. Any suggestions. :-/

  Oxygen.  It's not a suggestion.

            Potter

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

then the headache starts saying "hello". 24 hrs a day for 3 weeks constant.

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

for 24/7 for 3 weeks constant...enough to kill a horse.

THAT is not a cluster headache.  A cluster hit is normally 45 minutes to 3 hours.  Some go outside the normal, and have them for longer, BUT a cluster does NOT last for 3 weeks, 24/7, constant!

You need to get to a headache specialist, and find out what you DO have.  Whatever you DO have, it is obvious that it is devastating, and you need to know what it is, in order to treat it properly.

Unfortunately, we have heard of plenty of stories where the doctor has not properly labled our problem as clusters, but we also hear stories about doctors that don't know what you DO have, and throw it into the Cluster Headache category, just because they are stumped.

What you describe sounds HORRIBLE!

Good luck!

Chuck

My headaches also last 24/7. Going on 3 months now. I have a neuro and a pain management specialist. They both think that I might have a dual diagnosis of clusters and nerve damage. PM me if you would like more detailed info.


Hang in there.

terra wrote on Jul 29^th, 2008 at 8:59pm:

My headaches also last 24/7. Going on 3 months now. I have a neuro and a pain management specialist. They both think that I might have a dual diagnosis of clusters and nerve damage.

Nope!  To quote the title of this thread: "I just don't buy it"

You DON'T have a cluster hit, for 24/7, for weeks/months at a time at a constant pain level.

I CAN believe that there is something else, ALONG with the cluster.  But, no, not just a cluster.

Chuck

Hi Kimberly Ann,

I posted a note about this a year or so ago, but thought I should share it with you.  I have had GREAT success with the following regimen:  

Kudzu - 1000 mg, 2x per day (morning & night)  
Magnesium - 250 mg, 2x per day (morning & night)  
St. John's Wort - 300 mg, 2x per day (morning & night)  
Skullcap - 425 mg at bedtime  
Melatonin - 10 mg at bedtime  

A little background:  I'm a 51 y/o male, 215 lbs, episodic CH since 1992.  I was in complete remission for about six years until about this time last year, when the Beast came back.  I decided to try 'alternative' treatment, since I've never had very good luck with doctors for much of anything.  I also would rather avoid the potentially severe and/or permanent side effects that most of the pharmaceutical treatments seem to offer!  I would have tried clusterbusters in a heartbeat, but I have a very real concern about potential legal issues here in Louisiana.  This is not the most progressive state in the U.S.!

All of my 'ingredients' are pretty benign, available OTC, and cheap.  Total cost is well under a buck a day.  Most importantly, they work - at least for me.  I have stopped the Beast in its tracks!  Here's what happened:

I came up with the regimen after reading a whole lot about what different people seemed to think worked well for them, as well as a good bit of the medical literature.  I went out and bought all of the supplements from either Wal-Mart, GNC, or the local health food store.  I started taking them, in the dosages described above, about a week into that cycle last fall.  From Day One, my attacks almost stopped.  I had a couple of K3's after a few days, and then it was over.  No more attacks at all.  I kept taking the supplements for a week or so, just out of caution (fear?), then stopped altogether.  About six months later, a cycle tried to start again - I had a single HA, around a K6 or so.  I restarted my regimen that day, continued it for a week or so, and never had another hit.  After 16 years of CH, I cried when I finally felt sure enough to tell my wife, "I beat them!  It works!  I've beat the f***ing headaches!!!"

As desperate as we are to find something to help with CH, I think most sufferers have become a little jaded, and are unwilling to try something new, just out of fear that it will not work.  No guarantees that it'll work for everybody, of course, but just as a side note, no one has EVER told me that they tried this routine and had it fail.  It' simple, legal, safe, and cheap.  Try it.  YMMV, but it's damn sure worth a try!  The only caveat of which I'm aware is that I've heard that Kudzu may interfere with some of the pharmaceutical meds, so check with your doc if you're still on anything.

I would REALLY appreciate any feedback, pro or con, from anyone who tries this.  Good luck and PFDAN to all!

Regards,
Jim

I disagree that Cluster sufferers are inflexible and afraid to try new treatments.  There are loads of posts by sufferers who say"  I'll try anything"   or " Document your success here so that we can all benefit"   Some may be 'jaded' due to all the pain and frustration of dealing with the crazy condition, that's true-  but afraid of new treatments?   Not convinced about that!   :)

Just my 2 cents!

kelly

ClusterChuck wrote on Jul 29^th, 2008 at 9:07pm:

terra wrote on Jul 29th, 2008 at 8:59pm: My headaches also last 24/7. Going on 3 months now. I have a neuro and a pain management specialist. They both think that I might have a dual diagnosis of clusters and nerve damage. Nope!  To quote the title of this thread: "I just don't buy it" You DON'T have a cluster hit, for 24/7, for weeks/months at a time at a constant pain level. I CAN believe that there is something else, ALONG with the cluster.  But, no, not just a cluster. Chuck

I've argued with the quacks for a couple years now, they still say it's cluster, affecting my sinuses 24/7 :P is just an added bonus for me! Yippee

KimberlyAnn - sending my support and a hug. I heartily agree with the oxygen suggestion. It works like a charm for most of us who've tried it. Personally I got a lot of relief from Topamax which, while not cheap and fraught with side effects, definitely kept the monster away during my most recent cycle. There are also other preventives that I know have worked for others.

During my cycle I have some experience with that 24 hour business... though not to the awful degree you report. Mine is just a continual pressure in and around the ear that then flares up into full blown attacks at the appropriate times.

Hang in there! We're all here to help if we can.

David

Balanchine wrote on Jul 30^th, 2008 at 3:26pm:

I have some experience with that 24 hour business... though not to the awful degree you report. Mine is just a continual pressure in and around the ear that then flares up into full blown attacks at the appropriate times.

David,

What you describe is not that unusual.  Many have a lingering pain, or shadow that just goes on and on, and then flares into a full blown hit, and then goes back down to the frustrating shadow.  I have heard of those that get that for several days.  It really sucks!

I sometimes get that lingering shadow, too, between flare-ups.  Not for days, but many times for 8 to 10 hours.  To me, the worst part of those is when you have that shadow, and then you cough (I am a smoker, so I do have the smoker's cough).  It about blows the side of my head off in pain, whenever I cough.

But what I describe above is not 24/7 of a (say) KIP 8 hit, solid.  Fluctuating up, and then down, is not unusual, but clusters do not stay at high level, constantly, 24/7 for weeks at a time.

Chuck

Right you are, Chuck. My own situation is nothing like what KA describes - that's really frightening... I hope she can get some answers pronto!

Gee I really feel for you!!! I am right there with you too.... if the demon shows up in physical form in my garden I will kill it and use it for ferilizer. I just have not found a way to kill the headache without harming the patient (me) and as soon as I do I will tell everyone. In the meantime please dont give up. It sounds to me like you are at your wits end. Please tie and knot and hang on. Hugs from Sophia in Denmark.

I gotta laugh... it hurts too much to cry...

Kimmie wrote on Jul 28^th, 2008 at 11:30pm:

Seeing doctor after doctor... I call bulls**t!

Kimmie wrote on Jul 30^th, 2008 at 10:17am:

I've argued with the quacks for a couple years now, they still say it's cluster, affecting my sinuses 24/7

You see bs and have regarded the doctors as quacks, but when clusters is diagnosed, that is accepted and what you've unsuccessfully tried to treat.  Picking and choosing what to believe can lead wrong treatment options.



Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

My left nose stops up for a few days... then the headache starts saying "hello". 24 hrs a day for 3 weeks constant.

The "cluster" name comes from repeated attacks subsiding and re-establishing.  As a symptom, most usually automonous reactions happen during each of those attacks, not preceding for days before an attack.



ClusterChuck wrote on Jul 29^th, 2008 at 7:12pm:

You need to get to a headache specialist, and find out what you DO have.

ClusterChuck wrote on Jul 29^th, 2008 at 9:07pm:

I CAN believe that there is something else, ALONG with the cluster.  But, no, not just a cluster.

I support Chuck's words here.



Kimmie wrote on Jul 28^th, 2008 at 11:30pm:

I will not rest until I find the right answers.

This attitude, redirected to a better diagnosis, perhaps further delineating, would be more beneficial.  A serious look for a specialist or two is likely to reveal more.  
 I've no experience to speak here but things such as Chronic headache, migraine, sinuses, medication rebound, etc, may feed upon each other, clusters could be in the mix.  I have read here of different and mixed visitations in the crucible.

Kilowatt3:
After reading your post I raced out to buy these herbs for my husband, who has been an episodic sufferer for 35 years. Many years ago, doctors tried treating him for sinus infections (opposite of KimberlyAnn's problem) until we diagnosed him ourselves by pouring over medical journals in the public library. Neurologists and doctors have been good at trying medications/oxygen with him but my husband has pretty much given up with them. You know, something works for a day or 2, maybe a week; then it stops working and it's on to the next med. Thank you so much for sharing your 'recipe'! I am keeping my fingers crossed!!
Cyndi

Cyndi Leier-

Please report your husbands experience with that regimen when you can.  I am always interested in hearing peoples experiences with different options.  

Thanks

Kelly

for those who dont know me, i am a first time CH, which began on jan 30 of this year..................after months of many meds,antibiotics, pred tapers,  scans,  doctors, dentists, you name it, diag myself with CH through here.........................i have been on the old drug, elavil, in the evening (my Ch was from 8pm-8am) since end of march, increased in april , when try to come off, it creeps back up, so i am staying on.........i get shadows, and lo level ones, which i can deal with, and a couple a times a month a kip 6 or 7, but none bigger.................many days i have a constant left eye wink, which i can also deal with..................i know i am still in cycle, but i can livemy life...........elavil is working for me .it is a cheap drug, and not too many side effects.......................i also do not have an alcool trigger which works for me!!!!
deb

The latest report which makes the point which I was attemping to convey in my earlier post.
===============


Neurol Sci. 2008 May;29 Suppl 1:S1-6.
Cluster headache: from treatment to pathophysiology.

Bussone G.

Department of Clinical Neurosciences, C. Besta Neurological Institute, Via Celoria 11, 20133 Milan, Italy. bussone@istituto-besta.it

This key note lecture illustrates the role of clinical developments in stimulating research and discovery in the area of the pathophysiology of cluster headache (CH) and other trigeminal autonomic cephalalgias (TACs), reviewing the physiological, biochemical and neuroimaging data that have suggested involvement of the hypothalamus in CH pathogenesis. These findings suggested the use of deep brain stimulation as a treatment for chronic drug-resistant CH. The typical circadian and circannual periodicity of CH attacks were the fundamental clinical characteristics that shifted focus from peripheral hypotheses to the idea of central origin for this headache form. Functional neuroimaging demonstrated that TACs are associated with activation of the posterior hypothalamus and there is clinical evidence that patients who suffer from CH have altered biological rhythms. Furthermore, the principal seat of biorhythm regulation - the hypothalamus - is known to have a modulatory role on nociceptive and autonomic pathways, specifically trigemino-vascular nociceptive pathways. Future research will elucidate why neuromodulatory approaches are effective in CH and other TACs, determine whether the hypothalamus is itself the generator of CH attacks, or whether it is activated in response to a generator situated elsewhere, and identify pharmacological treatments that directly target the hypothalamus.

PMID: 18545885

Bob, thanks for posting that. Sounds like an extremely promising area of research. It seems logical and, from reading posts here, more than just anecdotal that all signs point to a "central origin" for our problem. I've never had an MRI but I'll bet a lot of people here have. I'd be curious to hear some of those results.

The idea of CH as messing significantly with biological rhythms seems intuitive too. I know, for instance, that I've slept poorly for years - whether in or out of cycle. Of course many adults have sleeping problems and I'm sure there are a thousand and one causes. But finding out how CH acts as an inhibiter of "normal" biological rhythms is something that I hope further research will - even if only peripherally - explore.

Thanks again for all your great medical info!

David

Balanchine wrote on Aug 4^th, 2008 at 11:15am:

I've never had an MRI but I'll bet a lot of people here have. I'd be curious to hear some of those results.

Normal MRI or even angio-MRI won't show anything "interesting", if you have a CH (iirc only things such as a PET scan show something actually interesting), unless there is some hidden illness (my first MRI found a pituitary tumor but it's not active and probably not connected with CH in any way). Anyway it's always good to do that :-)


Balanchine wrote on Aug 4^th, 2008 at 11:15am:

The idea of CH as messing significantly with biological rhythms seems intuitive too. But finding out how CH acts as an inhibiter of "normal" biological rhythms is something that I hope further research will - even if only peripherally - explore.

For me it is like a vicious circle. My attacks almost always start when I lay down and lack of sleep always causes them. So it's like - I go to bed, have an attack and can't sleep whole night because of it. I fall asleep at like 5am and if I have to wake up early, I sleep for only 3 hours or so and it's very presumably that I will have at least one attack around noon (which doesn't happen normally). OK - I aborted it or didn't have it - so I want to sleep a bit afternoon. I am very tired and sleep, not able to do anything so I lay down and... I can't fall asleep because another attack starts. Yes, I feel fucking awesome then. Can't sleep, can't do anything because I am so exhausted...

My 24/7 pain is not constant kip9 or anything, it's just dull pain.

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

then the headache starts saying "hello". 24 hrs a day for 3 weeks constant.

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

24/7 for 3 weeks constant...

Kimmie wrote on Aug 4^th, 2008 at 11:20pm:

My 24/7 pain is not constant kip9 or anything, it's just dull pain.

There went any credibility that you might have had.

All of a sudden, you change your story.

Good luck with whatever you may or may not have.  I am done with any of your posts.

Chuck

ClusterChuck wrote on Aug 5^th, 2008 at 12:04am:

Kimmie wrote on Jul 29th, 2008 at 6:39pm: then the headache starts saying "hello". 24 hrs a day for 3 weeks constant. Kimmie wrote on Jul 29th, 2008 at 6:39pm: 24/7 for 3 weeks constant... Kimmie wrote on Aug 4th, 2008 at 11:20pm: My 24/7 pain is not constant kip9 or anything, it's just dull pain. There went any credibility that you might have had. All of a sudden, you change your story. Good luck with whatever you may or may not have.  I am done with any of your posts. Chuck

  Perfectly said chuck.

            Potter

thats what I thought you meant.  Absolutely, the shadows can be constant.  Never 3 weeks for me but I wouldn't deny it happens.  I'm just joining this discussion but I agree with whoever said get some oxygen.  You can't go wrong here.   There is nothing like having to pick and choose which attacks to abort when all you have is imitrex.   Thats when you start to lose it mentally.  Keep trying to find that magic bullet.  Now I'm off to take my magic bullet now

Ka: Then it's a shadow.


Quote:

For me it is like a vicious circle. My attacks almost always start when I lay down and lack of sleep always causes them. So it's like - I go to bed, have an attack and can't sleep whole night because of it. I fall asleep at like 5am and if I have to wake up early, I sleep for only 3 hours or so and it's very presumably that I will have at least one attack around noon (which doesn't happen normally). OK - I aborted it or didn't have it - so I want to sleep a bit afternoon. I am very tired and sleep, not able to do anything so I lay down and... I can't fall asleep because another attack starts. Yes, I feel fucking awesome then. Can't sleep, can't do anything because I am so exhausted... Back to top

Try melatonin 3 to 9mg at bedtime.
all the best

Kimmie wrote on Jul 29^th, 2008 at 6:39pm:

I smoke...alot 2-3 packer a day.  :-/

I haven't read the whole thread, but try quit smoking.  I did 3 years ago and my CH's have reduced from 7 straight weeks to 2.  It was almost an instant trigger.  I just recently learned of caffeine being ok to drink.  I use to cut that out completely, but now I drink coffee and energy drinks thought the bouts.  I just stand clear of alcohol, smells, and food loaded with MSG.

Chuck and Potter-

That's a very childish remark to give someone who is trying to figure this all out- pain is pain...PERIOD. Be done with my posts, that just shows your lack of knowledge to really understanding CH, and how one sufforer varies from the next. And to humiliate someone who is suffering- that's a whole new level of LOW. I know many people on here would agree with me on that. [smiley=hammer.gif]

Careful there KA your talking to 60 years of experience between them. Chill out and read some ,before you get the other foot in there. :-? You have been here three weeks and your getting off on the wrong track. [smiley=twocents.gif]
all the best :)
thebb

She sure is John.


Quote:

Be done with my posts, that just shows your lack of knowledge to really understanding CH,

Now that there is almost funny if it wasn't so absurd.  KA,  Cluster Chuck almost more than anyone here has more experience in the pain of CH as well as all the reasons, treatments etc. of this condition.  I've personally watched him get hit every hour all day long.  If he only has a day with 5 to 6 hits...he calls that a GOOD day.  

There was never a foot in there to begin with.....If I'm getting off to a bad start with someone...that is because they do not understand. Like many of you..I'm trying to wrap my brain around this CH myself, hell yes I'm in pain constantly for 3 weeks the headache does not go away...the flare ups where I'm rocking and nautious happen about 2-3 times a day. But when I say I'm in pain constant for 3 weeks...that's the damn truth, and this is not a place where people can pass down judgement upon others. I've been dealing with this for 15 years myself.

p.s Chuck and Potter: did I change my story? NOPE.

No one is minimizing your pain. I can say three weeks is a short episode, and 2 to 3 times a day is not alot. One is too much. Read all of the links on the left again and get caught up on the lingo. It will help you to be more succint. Had you known what a shadow was you would have put it that way and all would have understood clearly. It is important to be clear in your description. You did not change your story but there are discrepancy's.

I agree BB. I did not know what shadows and kip's were, or the "lingo" to use on here. Doctors do not give me that good info. They just give me prescriptions...smile....and say see you next month. I may try smoking some vegetable leaves from my garden ...all of the meds are just too dang expensive. :D

Atta girl! ;)

OK, Kimberly, I will give you the benefit of the doubt, for this one.  In the beginning of the post you said you had the pain 24/7 for weeks, constant, implying that it was of the same level the whole time.  THEN you said it was not constant level of pain.  It sure looked like you were changing your story.

I apologize if I was overly harsh with you, but we work VERY hard to protect fellow sufferers from quacks and wanna-bes that seem to come on here every so often.  We don't want anyone (especially the newer sufferers) to get the wrong information or be led astray by some on-line fraud.

I am sorry.

Chuck

Apology accepted. I'm just a ch sufferer that needs to catch up on the "lingo"

    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Glad to see you kids made up!  I was about to take your Internets away.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE author=15363B3639343F3E3932570 link=1217302258/25#40 date=1218162418]I was about to take your Internets away.[/quote]

ON NO!!!!  Not THAT!!!

I will be good, I PROMISE !!!  

(Well, at least gooder than I am sometimes ... )

Chuck

Did you change your name?

yes mezza... I didn't like my first and middle name. I was toying with the CP trying to add my pic with no luck, but I thought I'd shorten the name...

gotcha-  just wasn't sure!