Male, aged 63.  I have had these headaches, from time-to-time (presumably the correct term is 'episodically'), throughout most of my adult life.  My earliest memories are intense left-side headaches that seemed to be 'triggered' by cigarette smoke.  I have never smoked, but in those days it was impossible to avoid cigarette smoke in the workplace.  Whenever I visited smokey pubs, I invariably got a bad headache. 

As I grew older, the headaches gradually became increasingly intense.  Sometimes they seemed to be triggered by stress, or the sudden relaxation from stress during weekends.  They usually lasted one or two days, but sometimes really bad ones lasted three days.  Afterwards my head felt numb, or bruised. 

I have never got any relief from analgesics such as aspirin, paracetamol or ibuprofen, however codeine sometimes takes the edge off the piercing sharpness of the pain.  The throbbing pain is like having a tooth abscess in my nose, eye or temple.  Sometimes the pain would move from high up at the back of the roof of my mouth, to behind or above my eye, or then move to my temple. 

My GP only took me seriously (ie referred me to an ENT consultant) when I told him that the pain was so bad that I felt if I had a gun I would shoot myself. 

For many years I was told by various 'experts' that I suffered from sinus headaches (I have suffered from sinusitis frequently throught my adult life), or migraine.  I'm afraid I have persuaded various dentists to extract too many teeth, in an attempt to end the pain.  One 'expert' at a London teaching hospital actually tried to persuade me that I was imagining my headaches!  Consequently, I have sometimes questioned my sanity, when suffering particularly bad bouts. 

Eventually, an 'expert' suggested that my headaches were caused by damage to a facial nerve, sustained during one of the 3 sinus operations that I had when I lived in the UK. I was prescribed 2400mg of Gabapentin daily, which I have found extremely helpful.  However, there is an unpleasant side-effect that I dislike. 

I moved to France a few years ago.  Towards the end of last year I had sinusitis again.  Whilst the infection was treated successfully with antibiotics, the intensity of headache and facial pain increased and became constant.  First I was referred to an ENT specialist, as the pain seemed to originate from high up in my nose, under my eye and I constantly have left-side nasal congestion, which becomes much worse when I lie down.  I wake at the same time each night, at about 03h30, with pain.  The intensity of the pain varies and has done so since it became constant.  Some days the pain is a lot worse than others. 

I was subsequently referred to a neurologist who immediately diagnosed chronic 'algie vasculaire de la face', or chronic cluster headache.  She is the first 'expert' whom I've met who actually seems to understand this living hell.  At last, I have found someone who recognises my sypmtoms and who seems willing to help me find some relief from this constant pain that is destroying my life. 

I am currently waiting for an appointment to see a cardiologist, who will decide whether I am allowed to take Verapamil, together with the Gabapentin and also inject myself with Imiject, when the pain becomes particularly intense.  I read that misdiagnosis is common with this disease and many GPs don't know much about it.  Does any of this sound familiar to you?  :-/

Please don't be angry with me..or us, but we really have a hard time reading and appreciating what you are trying to say with no paragraphs.   I got through the 1st line and my eyes started to wander and I couldn't read it. 
To save you from the almost certain  response you will get...I would like to break this down so folks can answer your questions




Bonjour
Today at 2:40pm     Male, aged 63.  I have had these headaches, from time-to-time (presumably the correct term is 'episodically'), throughout most of my adult life.
  My earliest memories are intense left-side headaches that seemed to be 'triggered' by cigarette smoke.  I have never smoked, but in those days it was impossible to avoid cigarette smoke in the workplace.  Whenever I visited smokey pubs, I invariably got a bad headache.


As I grew older, the headaches gradually became increasingly intense.  Sometimes they seemed to be triggered by stress, or the sudden relaxation from stress during weekends.  They usually lasted on or two days, but sometimes really bad ones lasted three days.
Afterwards my head felt numb, or bruised. 

I have never got any relief from analgesics such as aspirin, paracetamol or ibuprofen, however codeine sometimes takes the edge off the piercing sharpness of the pain.  The throbbing pain is like having a tooth abscess in my nose, eye or temple.  Sometimes the pain would move from high up at the back of the roof of my mouth, to behind or above my eye, or then move to my temple.

My GP only took me seriously (ie referred me to an ENT consultant) when I told him that the pain was so bad that I felt if I had a gun I would shoot myself.

For many years I was told by various 'experts' that I suffered from sinus headaches (I have suffered from sinusitis frequently throught my adult life), or migraine.  I'm afraid I have persuaded various dentists to extract too many teeth, in an attempt to end the pain.  One 'expert' at a London teaching hospital actually tried to persuade me that I was imagining my headaches!  Consequently, I have sometimes questioned my sanity, when suffering particularly bad bouts.

Eventually, an 'expert' suggested that my headaches were caused by damage to a facial nerve, sustained during one of the 3 sinus operations that I had when I lived in the UK. I was prescribed 2400mg of Gabapentin daily, which I have found extremely helpful.  However, there is an unpleasant side-effect that I dislike.  I moved to France a few years ago.

Towards the end of last year I had sinusitis again.  Whilst the infection was treated successfully with antibiotics, the intensity of headache and facial pain increased and became constant.  First I was referred to an ENT specialist, as the pain seemed to originate from high up in my nose, under my eye and I constantly have left-side nasal congestion, which becomes much worse when I lie down.  I wake at the same time each night, at about 03h30, with pain.  The intensity of the pain varies and has done so since it became constant.  Some days the pain is a lot worse than others.

I was subsequently referred to a neurologist who immediately diagnosed chronic 'algie vasculaire de la face', or chronic cluster headache.  She is the first 'expert' whom I've met who actually seems to understand this living hell.  At last, I have found someone who recognises my sypmtoms and who seems willing to help me find some relief from this constant pain that is destroying my life. 

I am currently waiting for an appointment to see a cardiologist, who will decide whether I am allowed to take Verapamil, together with the Gabapentin and also inject myself with Imiject, when the pain becomes particularly intense.  I read that misdiagnosis is common with this disease and many GPs don't know much about it.  Does any of this sound familiar to you?   

I mean only the best intent with breaking down your post Sir.  It is so much easier to read this way and these people here are the most caring people I've ever met for the most part and we will try to help you in any way we can.  It's just that we can help you a lot better if we can read it better, mon ami   :-*

G'Day Box

Welcome to the nut hut, sorry you have to be here but your in good company.

Take a look at the Oxygen info link to the left, it works wonders for a heap of us & is a life saver for me when in high cycle.

Cheers
Barry
From downunder & another old fart ;)

Linda_Howell wrote on Sep 3^rd, 2009 at 7:29pm:

Please don't be angry with me..  It's just that we can help you a lot better if we can read it better, mon ami   :-*

Thanks Linda, you done good young lady. :-*
Cheers
Barry

Thanks Linda.  My normal excuse would be that I had a bad headache when I wrote my intro, but I realise that's a bit of a lame excuse here.  ;) 

I usually use paragraphs, but was unsure about how much space I had available.  I didn't want to lose what I'd typed. I think my laptop is suffering from CH too, as it keeps crashing.   ::)

Thanks Barry. I read recently in a booklet entitled 'Understanding Migraine and Other Headaches', published by The British Medical Association in 2002, that "For many sufferers inhaling 100% oxygen at seven litres per minute for 10 to 20 minures, via a facial mask, is safe and effective."

It goes on to say that it is available on prescription but you need a special valve to regulate the flow.  I was never offered oxygen during the time I lived in the UK (1963-2005), but then nor was I ever diagnosed as a sufferer of CH when attacks occured episodically.  :-/

The neurologue (ie neurologist) here in France didn't mention oxygen.  Rather she suggested that I inject myself with Imiject (sumatriptan).  Perhaps it's not part of the  medical culture here, to offer oxygen to CH sufferers.  Nervertheless, I'll ask my généraliste (ie GP) about oxygen, next time I see her.

I found the illustration in the BMA booklet particularly helpful.  I think images like this are better than text, to take onboard.  When I saw it, I immediately thought 'That's it!'.

Having now found this booklet, my wonderful neurologue and this very helpful website, I feel that I've at last found a home to rest my weary head, after so many long years out there in the wilderness, receiving precious little help and understanding from all the so-called 'experts' whom I consulted about this hell.  So, thank you!

Headache. 2000 Oct;40(9):730-5.
 
The misdiagnosis of cluster headache: a nonclinic, population-based, Internet survey.

Klapper JA, Klapper A, Voss T.

Colorado Neurology and Headache Center, Denver 80218, USA.

OBJECTIVE: We conducted the first nonclinic, Internet-based survey of cluster headache to investigate this population with regard to diagnostic problems encountered, effective and ineffective medications, problems obtaining medications through third-party payers, and symptoms as they relate to International Headache Society criteria. BACKGROUND: Previous cluster headache surveys have been at specialty centers. These patients might be different from cluster headache sufferers in the general population. An Internet-based population of cluster headache sufferers who connected to a Web site responded to the questionnaire, and e-mailed it back to our site to be analyzed. We analyzed a total of 789 respondents, 76% men and 28% women. RESULTS: Eighty-seven percent of respondents qualified as having cluster headache according to International Headache Society criteria. However, diagnosis was delayed an average of 6.6 years from the onset of symptoms. The average number of physicians seen before the correct diagnosis was made was 4.3, and the average number of incorrect diagnoses was 3.9. Seventy-one percent of respondents had undergone unnecessary magnetic resonance or computed tomography scans, and 4% had unnecessary sinus or deviated septum surgery. We found that many inappropriate medications such as propranolol, amitriptyline, and antibiotics were prescribed and that successful medications for clusters such as sumatriptan and oxygen were often denied due to a failure to understand the nature of this disorder. Seventy-seven percent of respondents were smokers. Seventy-four percent stopped smoking in an attempt to improve their condition; however, only 3% experienced relief. CONCLUSIONS: The most alarming finding was the delay in diagnosing cluster headache in this population--an average of 6.6 years. The selection of medications demonstrated to be successful in the treatment of clusters proved effective for the majority of this population. Many respondents reported being denied some of these effective medications by their physicians or third-party payers. Using International Headache Society criteria for cluster headache, 87% of the respondents should have been correctly diagnosed by the first physician seen.

PMID: 11091291 
_________________________________________________________________________
Acta Neurol Scand. 2004 Mar;109(3):175-9.
Diagnostic delays and mis-management in cluster headache.

Bahra A, Goadsby PJ.

Headache Group, Institute of Neurology, Queen Square, London, UK. peterg@ion.ucl.ac.uk

OBJECTIVES: Cluster headache is a stereotyped form of primary headache that while common in terms of neurologic illnesses is much less common as a cause of disabling headache than migraine. MATERIALS AND METHODS: We directly interviewed 230 patients with cluster headache. National support groups contributed 76% and 24% came from the National Hospital for Neurology and Neurosurgery Headache Clinic. RESULTS: Seventy-two percent were men and 28% women, giving a male to female (M:F) ratio of 2.5:1. Episodic cluster headache (ECH) was recorded in 79% while 21% had chronic cluster headache (CCH). The mean time to diagnosis has dropped from 22 years in the 1960s to 2.6 years in the 1990s, although the mean number of GPs seen before a diagnosis was made remains at three. CONCLUSIONS: While there has been improvement in the time to diagnosis for cluster headache, a number of physicians will be consulted, and better education is likely to reduce the overall patient suffering.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 14763953 [PubMed]
=========================

 
Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
=============
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

------
A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
(Thanks to "cluster" for link.)

Thanks Bob. That's extremely interesting.  I underwent three surgeries: two sinus (maxillary and frontal) plus deviated septum nasal surgery. The latter because I complained that the left side was constantly blocked.  It still is!  I believe that at least two of the surgeries were entirely unnecessary.  Plus, I need not have had so many teeth extracted.

I have definitely been prescribed propanolol in the past and also possibly amitriptyline, as the name sounds very familiar. 

I have been prescribed so many different medicines, including many different antibiotics to treat sinusitis and seen many different doctors over the years that recalling them all id difficult. 

I certainly find that some strong chemical odours, such as solvents and perfumes trigger attacks.  I tend to nap, to catch up on sleep because I get so little contiguous sleep, as it takes me a long time to get back to sleep after being woken by the pain.  I try not to, though.

Something that I haven't seen mentioned anywhere is the effect of attacks on memory.  Perhaps I've missed it.  I find that following atacks, my memory, particularly my short-term memory, is severely compromised. 

Over the years, in order to maintain continuity of memory between attacks, I've devised various strategies in order to cope.  Nowadays I maintain various lists, agendas, ToDo lists, update note books, etc.  Of course, computers, PDAs, etc are a great help, when I can remember where I've stored the information, which isn't easy following an attack!  I expect this is not unusual, but without them I'm completely lost, as I rely on them following attacks to effectively re-build my memory.

This strategy often enabled me to maintain a mask of normalcy in the workplace and to avoid appearing a complete idiot (though eventually I was made redundant, at the age of 57) when asked questions the answers to which I would otherwise have been completely unable to recall. 

I hope this strategy might help others who are fortunate enough to still be in work and are battling with this wretched affliction, struggling to keep their jobs.

Re. Memory:

Curr Pain Headache Rep. 2005 Apr;9(2):109-12.   
Cognitive processing in cluster headache.

Evers S.

Department of Neurology, University of Munster, Albert-Schweitzer-Str. 33, 48129 Munster, Germany. everss@uni-muenster.de.

[Edited for length.] In neuropsychologic evaluations, a reversible decline of memory processing was detected during the cluster attack, but not between two attacks. Long-term observation revealed no progressive cognitive decline in cluster headache patients over the years. With regard to personality changes, a liability susceptibility to anxiety disorders and to hypochondriasis, but not to mood changes, has been described inconsistently. All changes in alterations of cognitive processing in cluster headache are demonstrated to be mild and do not relevantly contribute to the clinical picture of this disease.

Publication Types:
Review

PMID: 15745620 [PubMed]

{BJ added: PMID 10971660 & 1563942 add supporting data from brief clinical testing studies. Too limited to be definitive.}

Thanks again Bob.  Well, that's very interesting, too. 

During attacks, I find it virtually impossible to recall much at all.  Following attacks, during what I call my numb headed phase, I perceive a distinct worsening of recall ability, compared with periods between attacks, after having recovered from the numb headed sensation.

I expect my wife would probably be able to relate something about my propensisty for anxiety and hypochondria, as she's often been on the receiving end of my concerns.  That's one of the reasons that I've found Gabapentin very helpful, insofar as it helps prevent me from becoming too depressed.  I find constant pain to be both debilitating and depressing.

It doesn't require much imagination to be worried that such intense pain is doing some irreversible damage to one's brain, so it's certainly very reassuring to know that there's not likely to be any more progressive decline than otherwise would have been the case had my disease not changed from being episodic to chronic.   

I get some relief from the pain, between attacks, by standing under a hot shower, inhaling the humid air while the water pummels the left side of my face, or also the nape of my neck, letting the water run down my spine.  I think if I could afford it, I'd spend hours in the shower.  I call it my pleasure dome. However, maybe it's just the distraction of the burning sensation that takes my mind off the pain.   ;D

Also, I find being outdoors in the fresh air helpful, particualrly when the air is cool, rather than cooped up indoors in dry stale air.

There is another pleasure that I find gives me brief relief from the pain, however perhaps this is not the place to discuss it.  ;)

While you wait for the oxygen and Imitrex go and get some energy drinks (Red Bull, Monster, Rhino, ...) and put them in the fridge.
As soon as you feel a hit coming slam one (or two) down as fast as possible.
If you are lucky (quite a few of us are) this will either stop the hit or at least take the edge off of it.

Oliver
(who visited Corrèze 4 weeks ago)

Thanks Oliver.  Hope you enjoyed your visit.  Thanks for the tip.  Judging by the Wikipedia entry for Red Bull,  I might be better off shooting myself.  ;D

It tastes horrible but it really ist THAT bad.

I alwaýs enjoy France!

I've noticed that some clusterheads on this message board use the term shadows.  However, this expression doesn't seem to be used in abstracts, so presumably it isn't strictly speaking a medical term.  Are the shadows that fellow clusterheads are referring to, the constant lower level pain that I get between attacks, or is this something that episodic sufferers get before an attack, a bit like the aura that some epileptics experience before a seizure?  Also, is there any known connection between CH and epilepsy?  Thanks in advance for your help, which is greatly appreciated.

Your understanding of "shadows" is on target; a term coined here some time ago. Often resolved with the standard OTC meds but not responsive to the usual abortives.

Did find this abstract on MS....

J Headache Pain. 2007 Sep 24;
Cluster headache attacks and multiple sclerosis.

Gentile S, Ferrero M, Vaula G, Rainero I, Pinessi L.

Neurology II — Headache Centre, Department of Neuroscience, University of Turin, Via Cherasco 15, I-10126, Torino, Italy, sgentile@molinette.piemonte.it.

We report the case of a patient who developed typical cluster headache attacks and was diagnosed as having multiple sclerosis (MS) at the same time. The headache attacks resolved after i.v. treatment with methylprednisolone. MR imaging showed a pontine demyelinating lesion involving the trigeminal nerve root inlet area, on the same side as the pain. The association between cluster headache and MS has been rarely described before. This case suggests that in patients with cluster headache neuroimaging is often useful in order to exclude structural lesions.

PMID: 17901919 [PubMed]

--------------------------------------------------------------------------------

Cephalalgia. 2004 Nov;24(11):980-4.
Prevalence of primary headaches in people with multiple sclerosis.

D'Amico D, La Mantia L, Rigamonti A, Usai S, Mascoli N, Milanese C, Bussone G.

C. Besta National Neurological Institute, Milan, Italy. damicodo@tiscali.it

The aim was to investigate the lifetime prevalence of headache and primary headache (diagnoses according to International Headache Society criteria) in multiple sclerosis (MS). The relationships between headache and clinical features of MS and MS therapy were also investigated. We studied 137 patients with clinically definite MS; 88 reported headache, 21 of whom developed headache after the initiation of interferon. The prevalence of all headaches in the remaining 116 patients was 57.7%. Migraine was found in 25.0%, tension-type headache in 31.9%, and cluster headache in one patient. A significant correlation (P = 0.007, Fisher's exact test) between migraine and relapsing-remitting MS was found. Primary headaches are common in MS patients. Further studies are needed to clarify the mechanisms underlying this association, particularly the association between migraine and relapsing-remitting MS, and the role of interferon in the development of new headache.

PMID: 15482362 [PubMed]

Your question prompted me to do a search. As you can see from the date, very little to be found.
========

Cephalalgia. 1984 Mar;4(1):39-44.
Headache and epilepsy: two autonomous entities?

Savoldi F, Tartara A, Manni R, Maurelli M.

The relationship between headache and epilepsy remains unresolved. We studied 3,600 patients affected by primary headache and 36 epileptic patients with a present or past history of headache. In the first group, no family history of epilepsy nor epileptiform EEG patterns were found. In the second group, there was no chronological relationship between epileptic seizure and headache attack in more than half of the patients; when found (46.1%) the relationship was neither precise nor specific. Taken as a whole, these data suggest the autonomous nature of epilepsy and headache.

PMID: 6713523 [PubMed]

Welcome!

You found a reference to the use of oxygen, but at 7 lpm you will get little if any relief.  I used 15 lpm several years ago with mixed results, and quit thinking it didn't work for me.  Recently I started using 25 lpm through an O2ptimask (available through this website).  I can now knock out a hit in as little as 5-8 minutes.  BTW, the O2ptimask was developed for us clusterheads by Linde, and I find it to be far superior to the old non-rebreather.

You will find a lot of info available here that is not available in the vast majority of Drs offices, plus you have a caring family that is here for you whenever you need us.

Jerry

gizmo wrote on Sep 5^th, 2009 at 2:34pm:

It tastes horrible but it really ist THAT bad.

Thanks Oliver. I tried Red Bull and survived   :D

Seriously though, many thanks for the tip.  It seems to help, so I've bought a few more and put them in the fridge ready ...

Bob Johnson wrote on Sep 7^th, 2009 at 12:31pm:

Your question prompted me to do a search. As you can see from the date, very little to be found. ======== The relationship between headache and epilepsy remains unresolved. ...

Thanks again Bob.  I have learned a huge amount from this website and am really most grateful to you and others who have contributed to it.  It is an immense relief to at last know what has being causing me so much intense pain, for so many long years, and that I am not alone.  There have often been times of deepest despair, when I have become extremely depressed by the pain and entertained suicidal thoughts, however I now feel there is hope and get great comfort from knowing that there are others who really do understand what living with this wretched disease is like.  Thank you!

I found the section on water x 3 very interesting because many years ago, during the period when my CH was episodic, I discovered that there seemed to be some sort of correlation between the amount of water that I consumed and the frequency and intensity of my headaches.

At the time, I was under the impression that my headaches were sinus related and so imagined that as my headaches always occured when my left-side nasal congestion was particularly bad, that dehydration resulted in thickening of mucus causing congestion, leading to headache.  Not a very scientific appraisal I know, but that's how it seemed to me.

Despite my acquired habit of drinking large amounts of water daily, I have recently increased the amount that I consume and decided to stop taking any alcohol (not that I was consuming much anyway).  I am pleased to report that the initial results seem to be very favourable.  This coupled with drinking Red Bull, when attacks seem imminent, also seems helpful.

Meanwhile, I am still waiting to obtain my cardiologist's approval to take Verapamil and Imiject!

Callico wrote on Sep 7^th, 2009 at 8:35pm:

Welcome! ... you have a caring family that is here for you whenever you need us  ...

Thanks Jerry.  I really do appreciate it, believe me.  Not sure whether oxygen is an option here in this part of France though, but I fully intend to ask my GP about it next time I see her.  My neurologist didn't offer it, so it might not be part of the medical culture here, for CH sufferers.  Besides which our house is heated by a wood burning stove, so I'm a bit concerned about the fire hazard.  We live in a very remote rural part of the country, up on the edge of the Massif Central, so if there was a fire our house would be razed to the ground long before any fire engine reached us. We have a fire extinguisher, but ...  :-/

Hi boxcorner,

My case is very similar to yours as I was misdiagnosed with sinusitis for 15 years. The nose congestion that comes with the attacks plus the fact that I got them during altitude changes led me to believe that air with a different pressure became stuck in my sinus causing the mad pain. Also I successfully aborted a few attacks with cortisone nose drops. (Most of the time it only made it worse though)

Luckily my ORL was a very ethical man so when I begged him for surgery he instead referred me to a neurologist as there was nothing wrong with my sinuses.

I started on sumatriptans and it was good in the beginning. But then it seemed to increase the length of my cycles. I had 3-4 weeks cycles for my first 15 years. My last cycle lasted 4 months until I switched to O2.

My first neurologist laughed at me when I suggested oxygen saying it was obsolete and much less practical than sumatriptans. I suspect the pharmaceutical companies circulate this idea among neurologists, implying they would be silly to recommend oxygen.

Some people however seem to be okay with large doses of sumatriptans so just see how it evolves for you. If you have more attacks and if they become more painful, you might want to try oxygen.

Good luck! ;)

Thanks Lafougere  The good news is I have now received an appointment to see my cardiologist.  The bad news is it's not until 20th October.  :-/

Most of the time my pain level is around 5/10.  Occasionally it drops to 2/10.  During my attacks the pain usually jumps up to 8/10, but yesterday during an incredibly intense attack the pain rocketed for some inexplicable reason right up to around 9/10.  I haven't had one that bad for a while now.

During this recent incident I accidentally stumbled across something that seemed to help.  I'm not sure whether it was pure coincidence, so I intend to repeat it next time.  I was in such a terrible state, making such a din, that I'm afraid I frightened our poor old Border Collie so much that she wet herself  :'(

Anyway, as usual I was absolutely desparate to get some relief from the pain which was driving me mad, so I decided to heat up a wheat bag that I usually use to apply heat to aching joints and injuries.  Initially I tried applying the heat to the left side of my face.  It felt comforting, but it didn't stop the  pain.

I've noticed that when I get these attacks (with intense pain that appears to spread from high up my nose, behind my eye, around my temple area and up into the front of my head, always on the left side) that the area in my neck where my carotid artery is located often feels sore, or uncomfortable.

So I thought I'd try applying the heat pack to that part of my neck, under my jaw.  I was amazed when the sharp, piercing, burning component of the pain suddenly stopped.  It was instantenous.  Like switching off a light.  The pain in my face and head head continued, but the component that's like a throbbing abcess, suddenly stopped.  It's difficult to explain, but if you've experienced the pain you'll understand.

As I say, I'm really not sure whether that aspect of the pain changed suddenly because I applied the heat pack.  I'm curious to try it again, but naturally don't look forward to the next attack. :-/

I usually heat the wheat bag in a microwave oven for 2 minutes, which makes it so hot that I can only just bear it on bare skin, so it's pretty hot!  I'm not sure whether applying heat that intense to my artery was a good idea, but it certainly seemed to help.  :-?

Has anyone here tried applying heat to their neck like that and experienced a similar beneficial result?

Welcome to the board! The neck thing is funny, it's almost evenly split between hot and cold packs. I'm a cold pack kind of guy....bags of ice on the back of my neck right at the base of my skull. Others swear by the hot pack or the hot shower! Whatever gets you a whisker of relief.

Joe

Thanks Guiseppi.  The heat pack seems to help, as does drinking strong coffee, Red Bull and lots of water.  Had a few days last week when the pain dropped down below 5/10, but these past few days its been ramping up again and today seems to be headed for the jackpot, so I need to keep this brief. 

Just wanted to say that I now have an appointment to see my cardiologist on 20 October, when hopefully I'll be given the go ahead to take the Verapamil and use the Imject that my neurologist prescribed on 18 August. 

Given how long it took to get this wretched disease diagnosed, after years of mis-diagnosis, I suppose two months is not that long to have to wait for proper treatment.  Right now I need just need to get through this next attack which seems imminent. :-/

I know that you have already heard about high flow oxygen therapy, but I will repeat it anyway!

I'm 56 years old and have been chronic for over 13 years. Buying my own regulators to provide me with 25+ lpm gave me my life back. It was like turning on a light switch.

I get angry with myself when I think about all of the hours of agony I endured needlessly - because I didn't try it sooner. No more exploring those dark and scary places in my mind while in the grip of such intense pain.

High flow oxygen therapy may not be the answer for you, but it certainly gives me almost complete control of my attacks in 3-6 minutes.

Marc

Welcome to Clusterville and Bonjour. (I lived in Verdun for a couple of years and still can't speak French - my neighborhood learned English so I wouldn't butcher their language :)).

You've been given some good advice here and there's not much I can add. My main abort is O2 at a high flow rate.

I can relate to the memory loss - been using notes for years (and it has nothing to do with age - it's the headaches totally! :))

The taste of Red Bull is worth not having a headache. I just close my eyes and chug it... Coffee (strong) seems to eliminate shadows most of the time.

Melatonin at night before bed helps with sleep (I take 12-15mg). It gets you thru the REM sleep where the HAs hit. It's over the counter and is found in some sleeping pills. My neuro says it won't hurt you. You might try that to get some rest at night.

My "backup" abort is Ergotomine (Cafergot) - an old vaso-constrictor, but it works well for me and seems to last longer than Imitrex without the side effects of the trex. You might talk to your neuro about that if you can't take the trex. It's not as fast acting as the trex shots, but they make suppositories that work about as fast as the shots.

Hoping your cycle is short lived and you're pain free soon.

Again welcome to Clusterville.

Hugs BD :-*

Thanks Marc.  According to the French version of Wikipedia (look up l'algie vasculaire de la face), the cost of oxygen therapy is only reimbursable by the state health insurance organisation (l'assurance maladie) if it is prescribed by a neurologist, or a pain control specialist.  Instead, my neurologist prescribed Imiject (Sumatripan), which seems to be the preferred alternative here.  I didn't learn about oxygen therapy until I discovered this website, following the consultation with my neurologist, however I will ask about it if/when I am referred back to her.

Thanks BD.  I hope you enjoyed living in Verdun and weren't too troubled  by the ghosts.  It's interesting that you too experience memory loss.  I'm currently recovering from several days when the pain ramped up from it's usual 5/10 level to about 8/10.  Not as bad as the 9/10ers that I get from time-to-time, but I find being able to remember anything through the fog of pain virtually impossible.  In my case, I don't have any shadows to chase away, as I'm in constant pain, however I have got into the habit of drinking a can as soon as I get up, because I find it definitely helps reduce the congestion in my left nostril and also seems to reduce the pain in my head somewhat.

The good news is that when I saw my cardiologist on 20 October, following ECG and ultrasound scans, he agreed to allow me to take Verapamil and use Imiject.  Apparently his brother is a fellow sufferer (episodic, 4-year cycle), so unusually he was familiar with the condition.  Also, I've now an appointment for an MRI scan on 28 Ocotber.  So, today's my 3rd day on Verapamil (I'm still taking Gabapentin).  I haven't detected any change in the level of pain in my head (yet, ever hopeful). How long do I need to allow for it to take effect?  Thanks.

Welcome home Boxcorner!
   I am on Verapamil, and I beleive it took about 5 or 6 days to really kick in. 
   I Don't think I could have made it through this without it this time. 
   At first I took one 240 mg every eve with the meal.
And then had to ramp up to once (240)  in the AM, and one in the eve.
  As it got into my system, I have since gone back to one per day. It works wonderfully.
   Now I have realized that these things have a cycle inside of a cycle. and I will have a high and low cycle in which some nights are not too bad (maybe no hits) and some nights are real bad (every two hours).
   So that said, I try to take two Verapamil on the days that are high cycle, and cut back in between. ( I can sort of feel it coming on more during high cycle)
  Does that make sense to ya?  :D
   The reason I try to cut back on it, is because it does cause some bad constipation. :o

   On the Daytime (all day nag nag nag ) shadows, I like to use MONSTER energy drinks, they do taste better, and work fine. The blue one has a lot less sugar. 
   Any one of them are fine, if they have at least 1,000mg of Taurine in them.
    I visited Paris this spring (April) and It was wonderful, The French people were so very kind to us.

   Good luck with your tests, and welcome aboard .

lorac
   

Thanks lorac.  So, on that basis I should expect a reduction in my pain by the weekend.  Roll on next week! 

The Verapamil certainly has slowed me down, but my cardiologist warned me it would take several days for my body to readjust.  He recommended that I take the Verapamil in the morning, rather than evening.

I hope you have told your doctor about doubling the dosage ...

The way I think of CH is that my cycles seem to be a bit like a sine wave, with peaks and troughs. 

Imagine a piece of paper with the horizontal X and vertical Y axes of a graph drawn on it.  With Y-axis having a scale 0-10, where zero represents being pain free and 10 represents suicidal pain.

Now, imagine a sheet of transparent plastic overlaying the graph with a sine wave drawn on it, with the wave moving left to right horizontally and the peaks and troughs swinging up and down, with an amplitude greater than the 0-10 scale on the Y-axis.

Sliding the film down the Y-axis so the peaks are level with 9 on the scale would cause the sine wave to straddle the X-axis.

That is how I imagine my CH when it was episodic. I didn't consider the periods between attacks to be troughs. They were below zero on the Y-axis, consequently I wasn't aware of them.

Now imagine a different sheet of transparent film with another sine wave drawn on it.  This time with the overall swing amplitude less than 9 on the scale.  Once again, overlay the film and slide it so the peaks of the wave line up with 9 on the scale, keeping the wave parallel with the X-axis.

I think this is what happened when my CH became chronic. The up and down swing (ie amplitude) reduced, so the troughs never drop to  zero.  Hence my pain never drops to zero on the pain threshold scale.  In my case the amplitude swings up and down between 2 and 9.  Consequently, it's the amplitude that changed, not necessarily the frequency.

Since my CH toggled from episodic to chronic, I've been keeping a daily record of my pain, on a 0-10 scale, which is easy enough to do. However, working out what the frequency over time is would be a bit more difficult and not something that I feel inclined to do while I'm in this level of pain.

Apologies for the use of some jargon here, but hopefully it all makes sense.

I am laughing at your "Jargon" sir.  In a nice way of course.  Go here to find a simpler one.

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

Thanks Linda.  Wow, that's a first!  Nobody has ever called me sir before.  As regards the link, thanks, but of course I was already aware of that.  You do realise, don't you, that I wasn't attempting to define, even redefine, Bob Kipple's 0-10 scale?  Rather, I was trying to explain what I think happened, in my case, when my CH changed from being episodic to chronic.  Sorry, I should have explained myself more clearly.

Yes Sir...he he.. I did ask my doc before taking double.
   Gotta tell ya though..I had trouble today.  I have been taking Taurine also in an attempt to avoid those energy drinks all together, and had my heart doing flip flops.  skipping lots of beats.  (see other post)
   So be very careful not to do to many things at once while taking that Verapamil.  I always learn the hard way  :-?    Feeling much better now.
   By the way....what kind of things do you paint?
                                  lorac

Update:  Am taking 480mg Verapamil & 2400mg Gabapentin per day, plus now have oxygen (2 large cylinders at home, plus small one in car).

I would like to thank everyone who has helped me, particularly those who made me aware of oxygen therapy.  This, above all else, has transformed my life.  It really works for me and I am most grateful.  Thank you.