I suffer cluster headaches do to neck problems. which I guess puts me in the cervicogenic headaches category if anyone wants to dispute the difference. their is no difference to me since I believe all cluster headaches are caused by issues in the neck, but what do I know.right. anyway I recently suffered bells palsy . of course the drs. think its was caused by a virus. I don't believe it since the facial nerve responsible is the same one that sends all the pain to my face when I have a cluster headache. anyone care to put in there to cents by all means. please do so.

I forgot to mention something very important about my problem. I was in a cluster headache cycle when I suffered bells palsy. after it began the headaches stopped. I realize the nerves are the same ones affected both by bells palsy and cluster headaches. if these nerves come from the neck then why does everyone think is has anything to do with the brain. it doesn't if you ask me.

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That shows the nerve affected by CH, which is the trigeminal nerve which does not go near the neck.

The trigger point for CH has been shown to be the hypothalamus region of the brain through studies where people had CHs induced whilst their brain was being studied in PET machines (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE).

I don't know . the seventh facial nerve connects to the brain stem. it seems to me your dealing with something different then I yet I know I suffer same headaches. ill never believe the hypo theory. the brainstem, neck is where I believe the problem originates. all I know is after getting bells palsy something happened. the same nerves that send all that pain stopped .so I know there connected .

Again?  It's your hypothalamus.

              Potter

yea I broke my hypo and now I get headaches. It don't add up to me. if the hypo is responsible im daffy duck. face it the doctors don't know jack. I know my body, what I been through. cluster headaches originate in the neck/brainstem. the hypo is at the top of brainstem and it is affected along with everything else. one day you will see the light too.

  Just call yourself Daffy from now on.

               Potter

I know exactly how you feel, hell@back, having lived the first ten years of my cluster career believing it to be nerves pinched in the back of my neck.

Then a doctor gave me a name for the beast I wrestled, along with a truck-load of lousy advice, but even ten years after that a neuro insisted that injecting the weirdest stuff ever into the back of my neck would 'break up the ganglion' and be a magic bullet.

Might as well have bought a bow and shot arrows at the lightning.

To this day I have trouble accepting that my 'cluster-bump' is a symptom rather than the cause, so I'm not surprised for a second that others feel the same way.

We might not be right, mate, but all opinions are valid here at ch.com.

What about all those that suffer from cluster headaches, that have NO neck issues ???????
when I was first diagnosed, the first doctor I saw believed I had bells palsy and prescribed, lycram ? or similar,  bells palsy is caused by a virus, all pretty well documented in medical journals.
I also had nerve pain shooting across one half of the top of my head, the opposite to the cluster pain side.
please go and investigate your theory, on developing from the neck or lower brain stem, get treatment,  then we will see you back here listening to those who know.
remember one thing, nerve pain travels,  the neuropathic nerve ways are all connected through out our body, some chinese accupunturers  treat the hand area for pain in the lower back !    nerve pain and inflammation TRAVELLS.
my advice to you would be to accept what you have, don't try and out think it, or invent theories that simply wont help,  look at all the options available here, from 02, to vit d3 regime, or perhaps busting with the other stuff.
read all the well informed literature on here from people that have endured this horrible affliction, and begin to manage it.  I can relate to how frustrated you may feel, and without reading your previous posts, have you been properly diagnosed ??  if you have,  and if you've read thru the history on the forum, you'll likely see many others with the same type of theories and some equally wasted time exploring such things as tooth removal, new ubute electronic gismo's that will cure all, but im pickin you'll eventually come to the same realisation as most of us here about what we have, and where it originates from.
I wish you all the best and success in your endeavours, and maybe one day someone will come up with something simple, something new that can once and for all quell this demon that curses us all.....
cheers
colin

I appreciate your response and advice. pain is the bodys way of telling us something is wrong. I don't understand how the hypo creates and sends pain signals that's all. to me it has to come from where my pain is .(neck) for those who have no neck pain ,well maybe just like me I didn't for years, but over time it began and got worse and worse. iv been getting ch since 14. im 42 now. my question is how many cheads get mri of neck anyway. i had brain mri. nothing showed up and i was diagnosed with ch. years later my neck problems got worse but drs refused to look at it as a possible cause. but i have proof now after all these years that there is a problem and it is arthritis and bulging disk pressing on nerves. but drs still say it has nothing to do with it. i say their wrong. i know their wrong. they will not go back and admit that's all.

I don't think the hypothalamus creates or sends pain signals. The hypothalamus cause the blood vessels around the trigeminal nerve to dilate, pressing on the nerve and causing the pain. Medication we use causes the vessels to contract, reducing the pressure and the pain.
The trigeminal nerve does go near the neck. It leaves under the skull at the neck area and travels up behind and over the ear then to the face.
You didn't break your hypothalamus. You were born that way. Blame it on your ancestors.
I've suffered clusters for 40 years and have never had the neck pain. An ice pack is one of my best friends during an bad attack. Even though there is no neck pain putting the ice on the neck helps relieve the pain in the temple/face.

Hell Is it possible You're wrong?

          Potter

Headache:lessons learned from functional imaging
British Medical Bulletin 2003; 65: 223-234

Arne May
Department of Neurology, University of Regensburg, Regensburg, Germany

Using PET in a larger patient series, significant activations ascribable to the acute cluster headache were observed in the ipsilateral hypothalamic grey matter when compared to the headache-free state44. This highly significant activation was not seen in cluster headache patients out of the bout when compared to the patients experiencing an acute cluster headache attack45. In contrast to migraine25, no brainstem activation was found during the acute attack compared to the resting state. This is remarkable, as migraine and cluster headache are often discussed as related disorders and identical specific compounds, such as ergotamine and sumatriptan, are currently used in the acute treatment of both types of headache46. These data suggest that while primary headaches such as migraine and cluster headache may share a common pain pathway, the trigeminovascular innervation, the underlying pathogenesis differs significantly as might be inferred from the different patterns of presentation and responses to preventative agents46.
Just as it is striking that no brainstem activation occurs in contrast to acute migraine, no hypothalamic activation was seen in experimental pain induced by capsaicin injection into the forehead47. This is important because injection of the forehead would activate first (ophthalmic) division afferents which are the trigeminal division predominantly responsible for pain activation in cluster headache. Thus two other types of first division of trigeminal nerve pain, while sharing neuro-anatomical pathways with cluster headache, do not give rise to


VASCULAR HEADACHE: ARE BLOOD VESSELS INVOLVED?

Taking these observations on acute cluster headache together with what has been observed in experimental head-pain and migraine, the data establish that migraine and CLUSTER HEADACHE, FAR FROM BEING PRIMARILY VASCULAR DISORDERS, ARE CONDITIONS WHOSE GENESIS IS TO BE FOUND IN THE CENTRAL NERVOUS SYSTEM IN PACEMAKER OR CIRCADIAN REGIONS SPECIFIC TO THE SYNDROME. If further studies confirm these findings, a better understanding will be gained of where and how acute and preventative therapy can be targeted.
================
Neurol Sci. 2013 May;34 Suppl 1:71-3.
Cluster headache: what has changed since 1999?
Leone M, Cecchini AP, Tullo V, Curone M, Di Fiore P, Bussone G.
SourceDepartment of Neurology, Headache Centre and Pain Neuromodulation Unit, C. Besta Neurological Institute and Foundation, Milan, Italy, leone.m@istituto-besta.it.

Abstract
The peripheral and central origin of pain in cluster headache (CH) and trigeminal autonomic cephalgias (TACs) has been matter of debate. In the last decade, a number of information came from both animal and human studies. This paper briefly highlights main data from these studies. Taken together, THERE IS NOW SUFFICIENT BODY OF EVIDENCE INDICATING THAT CH and TACs can be regarded as a unique headache spectrum-syndrome, DUE TO INVOLVEMENT OF SPECIFIC BRAIN AREAS.

PMID:23695050[PubMed
======
Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
==============================
Handb Exp Pharmacol. 2007;(177):129-43.   


Serotonin receptor ligands: treatments of acute migraine and cluster headache.


Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]
=================================================================
J Clin Neurosci. 2010 Mar 11.

What has functional neuroimaging done for primary headache ... and for the clinical neurologist?
Sprenger T, Goadsby PJ.

UCSF Headache Centre, Department of Neurology, University of California, 1701 Divisadero St, Suite 480, San Francisco, CA 94115, USA.

Our understanding of mechanisms involved in primary headache syndromes has been substantially advanced using functional neuroimaging.

THE DATA HAVE HELPED ESTABLISH THE NOW-PREVAILING VIEW OF PRIMARY HEADACHE SYNDROMES, SUCH AS MIGRAINE AND CLUSTER HEADACHE, AS BRAIN DISORDERS WITH NEUROVASCULAR MANIFESTATIONS, NOT AS DISORDERS OF BLOOD VESSELS.

PMID: 20227279 [PubMed]

when I got bells palsy my headaches stopped. does anyone find that interesting. it was a blessing in disguise for me cause Im headache free now. the bells palsy cleared up in amonth and I feel better. its all a freaking mystery. im just confused cause things are crazier then ever with no answers. thanks for sharing.

I had a nasty round with Bells Palsy with facial paralysis on my left side, which about 8 weeks to subside completely. 

I went on to have 14 years of chronic daily CH's, always on the right side. I still cannot see any connection of that virus, to my CH's either way - at least in my case.

Marc

When DJ was operated on for Moya Moya his clusters stopped.  I won't state the obvious conclusion. ;)

I was pushing my daughter on the swing and I got a bad neck cramp, which happen all the time. I sat down and tried to stretch it out but my neck popped , it sounded more like a chicken bone snapping and I new that was bad. an hour later the bells palsy had started to set in. the next day it was fully set in on right side. my headaches stopped though. I really feel that that seventh facial nerve has more to do with cluster headaches then people think. I have problems with a loud ring in my left ear also. drives me crazy , hard to sleep cause it never stops. right ear has mild ring too. I guess my neck injury is causing all these problems. I have to sit most day. rest. cant lift much weight or do much around house anymore without causing my neck to act up which causes headaches to come back anytime. im getting used to my new life though and im more aware of what I can and cant do anymore. I was a mess when I realized this neck problem is contributing to my cluster headack attacks. cause I had to quit doing so many things I used to be able to do. now I so afraid to reinjure myself so for now im healing and taken it easy. hope someday someone will figure this out . for now the pain is at a minimum and I intend to keep it that way if I can.

I had to google moyamoya and its some scary sh**. my step brother suffered a brainstem stroke at 37 and is a total shut in quad. hes 46 now . amazing hes still alive. I did suffer a seizer at 16 but only one and it was bad. well if anything iv learned something new today. thanks Bob.
                                              Willis

Another potential explanation:


Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

well ,, I am going to agree with you ,,, the hypocampus lights up because of the pain .. not causing the pain.  I also agree that its an irritant to "closer to the surface" nerves. otherwise things like this spheno palentine ganglion block or other surgical treatments they are saying work wouldn't work right ?? as for your bells palsey ,, a dear friend also suffered from this after sitting WAY to close to a marching band percussion section ,, I had to plug my ears as the drums were actually causing me physical ear drum pain.  hers went all wonky and caused the palsey.  this is terrific to know that the palsey stopped the CH's ,, which leads more creedance to me that addressing the exterior cranial nerves is the key.  there are many blogs here and the other site wherein people have gotten relief with minor surgery, I belive there is someone in Arizona ??? maybe that is now doing this type of surgery.

you may be on to something ,, look at the symptoms .. like they are the same as bells ??? what if the CH is nothing more than the body TRYING to go INTO bells palsey but not completely succeeding ???? hmmmmmm


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In all the more than 14 years of reading this site this is the first string I can think of that tries to connect clusters and bells palsy.
A couple of questions......
1. Why did it take so many years to discover the connection.
2. Why don't all bells palsy sufferers get clusters?
3. Why don't all cluster sufferers get bells palsy?

because their hypothalamus has that extra little bundle of nerve fibers.

Well, here's another one for ya'll.. Don't have Bell's P. (don't really even know what it is so I don't THINK I have it..) BUT.. I have arthritis in my neck (lots of fun in my younger days :))..

So several years back I started getting migraines along with CH .. neuro said they were arthritic migraines  caused from the arthritis in my neck. The HA's (migraines) start in my neck and up the back of my head (similar to CH, but different). Sometimes it's hard to tell which one is hitting.

And sometimes the migraines trigger the CH and then we do have fun (that was written sarcastically  ::)).

So it's possible that you're having more than one type of headache.

The D3 regimen has all but wiped out my CH (fingers crossed), but the migraines are still hitting. A MRI and a good neuro could probably clear a lot of this up.

But one thing I've found out (and I've been here since 98) we are all different and we all have different triggers. About the only thing we all share is the pain of the darn headaches.

Right now I've been in "remission" for almost a year on the D3 regimen - we don't say "cure" because there is NO cure for these things. But remission is good.

I wish you PF days and please keep us up to date on your treatment. New theories are always good on here.  :-*

Barbara my nero refused to listen to my complaints about my neck because they contributed my neck pain at first as just a symptom of cluster headaches. but I finally got them to here me out and they put me on Tizanidine hcl 2mg tab. 3x a day. it took just three days to start working. my cycle began to stop and as long as I don't push myself and try to do to much physical work im ok. my problem is they still refused to see how my arthritis has any connection to ch,even though my MRI shows arthritis and degenerative joint disease c4-5 which if you do some research are directly related to what is considered cervicogenic headaches. so im going to give d3 a try, couldn't hurt at this point.  and yes I agree we are all different as to what cause ch. I know I had a rough childhood, I had a ruptured appendicitis at 8yrs. crashed headfirst on pavement on some crazy homemade gocart at 10. I played tackle football all the time with my older brother and friends up until I was 20. had a seizer at 16. started getting ch at 14. but back then things were different and parents, my parents anyway didn't know anybetter. there were no helmets, no going to the dr everytime you hit your head , no worry about concussion like today. so Im all over my kids today. they wear more protection then riot police whenever there doing something slightly harmful.

One piece of advice that anyone on this board will give you... if your neuro won't listen to you - FIRE HIM/HER and find one that will.

Most of us have gone thru several neuro's before we found one we could work with. YOU have to be your own advocate and know as much as you can about CH BEFORE you go to a neuro. DO NOT be afraid to ask questions or QUESTION the neuro (how many CH patients have you treated? - if he won't answer you - walk OUT!). And if he won't listen or doesn't know anything about CH - then you're wasting your time and money going to him/her.

I have a wonderful neuro. At each visit his first question is "What's new in clusters?" He treats over 50 CH patients and gives them this website and recommends that they come here. He also visits here when he has the time. Right now he's doing a happy dance about the D3 and what it's doing for me. He's put other CH patients on it.

BUT I went thru a whole lot of neuro's before I found him about 20 years ago.

So know you're not alone and any advice we give here is from experience and meant in the best possible way.  :-*

currently my nero is a veterans nero from Pittsburgh,pa. was planning to change neros and go to Cleveland,oh va hospital. I feel at this point though for me serjury is only option left though. iv been to physical therapy. got neck injections. been on every med so far. problem is neck is so weak now after so many years that a better nero wont help. a good surgeon would but that wont happen without getting care outside of the va. so plan is to keep my life simple and keep fighting on.

Neck problems are often a trigger for CH. There can be numerous reason why this happens, the obvious ones being a) blood supply to the head goes through the neck and b) parasympathetic nerves in the neck that are connected to the hypothalamus.

As for moyamoya - a recent study found a connection to CH
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shooky wrote on Sep 20^th, 2014 at 10:45am:

Neck problems are often a trigger for CH. ...........................................................................

Any references for that?

I have seen many references for "cluster like" headaches caused by neck problems. But then, not everyone knows what an actual Cluster Headache is.

Marc

Of course that Moya Moya article is our own DJ.  And it is not a study.  It is simply an article saying his ch quit after being operated on for MoyaMoya.

the surgery i think i need is just removing excess bone and bone spurs around c4-5 where the nerve runs through a small canal from spinal coulomb to shoulder and down left arm. now this is where drs. disagree cause its left side.

But it becomes so inflamed it causes widespread pain that begins to irritate the right side also and my neck muscles begin to stiffen and the neck bones begin to pop,crack and grind. That's when all hell breaks loose and the hits start coming fast and often.

hell@back wrote on Sep 23^rd, 2014 at 7:27am:

the surgery i think i need is just removing excess bone and bone spurs around c4-5 where the nerve runs through a small canal from spinal coulomb to shoulder and down left arm. now this is where drs. disagree cause its left side. But it becomes so inflamed it causes widespread pain that begins to irritate the right side also and my neck muscles begin to stiffen and the neck bones begin to pop,crack and grind. That's when all hell breaks loose and the hits start coming fast and often.

That sounds about half familiar.. Had about the same thing happen and it turned out to be a pinched nerve in the C-(something) (MRI showed it). Anyhow neuro sent me to a pain management neuro and he did a couple of procedures and shot something in my neck to shrink the nerve (or something) and then did something else (more shots) in his office and my neck got lots better.

Surgery was the LAST option and the injections worked well, so you might ask about that. It was some kind of steroid. They have to put you to sleep to do it and it sometimes takes three tries before it takes, but it's worth asking about before you go for the surgery..  :-*

A search at the largest medical library in the U.S. produced zedro hits on: CH+bells palsy.

I did get the epidural steroid injection, problem was the dr hit a nerve pulling out the needle and it didn't take, but im ready to try again, surgery scares me more.
It seems like after going over the bells palsy that in my case my neck just cramped up bad and probably caused the bells palsy to happen.
Im guessing I had something pinched triggering the cluster headaches and when my neck popped it released it and that lead to the headaches stopping, for now anyway.
Thanks for the help everyone.   Willis.

Bells Palsey is a transient condition caused by over stimulation of the 7th Craniel nerve .. it last for about a 2 weeks to a month or so (sound familiar) and goes away on its own (also sound familiar)  it causes the person suffering the temporary palsy to look like this (also look familiar ?)

drooping eyelid (horner syndrome also seen in CH sufferes .. occasional lacrimination along with other tell tale CH signs)


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sorry heres pic

---

That's exactly what happened to me.  I see that cluster headaches don't have anything to do with bells palsy know. only conclusion is my neck problems probably had something to do with it, but like i said it was a blessing because my cycle stopped and im fine for now. so nothing to worry about.

When I get cluster headache sometimes on side of my face droops I can't speak its as if my face is paralysed is that what bells palsy is? If yes I do get that.