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Topic: 9/24/99-? (Read 934 times) |
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endless
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My doctors tell me I have a rare form of Cluster Headaches called Chronic. I have had this 24/7 since 9-24-99 and they have tried about 10 meds and nothing helps at all. I am no longer taking meds to help get rid of it any more because I dont think nothing will help. I now just take pain killers to get on with my life. I take 200 10mg of methadone. I dont know what else to to. everyday is getting harder 
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DJ
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Re: 9/24/99-?
« Reply #1 on: Oct 3rd, 2002, 1:37am » |
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A 24/7 headache since 9/24/99? I'm not a doctor, but you DON'T have chronic cluster headaches, sorry. Take the cluster quiz on the left.... find a new doctor..... do something endless. 24/7 pain ISN'T cluster anything! Your headaches aren't clusters!
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Georgia
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Re: 9/24/99-?
« Reply #2 on: Oct 3rd, 2002, 8:48am » |
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Hi Endless....
Can you tell us more about your headaches? Does the level of pain remain contsant? Do you feel like laying down with them? Do they wake you in the night, etc? The more details you give us, the better we can help.
I would also strongly back what DJ already said in that you should take the "Cluster Quiz" (button on the left) and let us know your results. I am not so eager to rule out clusters (sorry, DJ)...since mine started over four years ago, I too have been in constant pain. For me, the constant pain - the shadow of the beast lurking - is broken up only by explosive clusters...and as soon as the ch itself is over, not only is my head incredibly sore and tender, I am back to a horrid "normal person" headache, all day, everyday. Pain killers only dull it. When the topic of 24/7 pain was discussed here before, I seem to remember other chronics experiencing the same.
Please let us know what the quiz says and also the specifics of your headaches....we will do what we can to help. If you do have clusters, and I pray for your sake that you don't, there is enough information and support here to help you find a pain management technique that works for you. If you don't have clusters, perhaps we can help you find a website where you can find what you need.
Peace and love,
Georgia
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tracy
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I have to agree with Georgia here......sometimes a non medicated chronic person (or a chronic person on the wrong meds) lives with a constant "shadow". I guess what we could disagree on would be the level of pain, for me the anxiety or fear it is going to grow into something more any minute is just as disturbing as the amount of discomfort the shadow is causing(2-3 on the scale). I am now on a "medication holiday" from my sansert and have to stay this way for a month, every day that goes by is worse and makes me very happy I had this last year! Hope it works again!
Endless! Don't give up on trying meds sometimes it takes alot of trying and a combination of a couple to help you. Follow DJ's and Georgia's advice and give us more info so we can answer your questions better! Research this site and take the quiz!!
Hope this helps some! Tracy
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ShariRae
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Re: 9/24/99-?
« Reply #4 on: Oct 3rd, 2002, 3:59pm » |
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endless,
so sorry you had to end up in our lil corner of the world.. but welcome. My advice is minimal..GET THEE TO A NEW DOCTOR! First of all, chronic is NOT rare...tell the doc to stop on by, we'll fill him/her in! Secondly, no doc worth the paper their degree is printed on would leave a patient in constant pain for 2 years. Find another doc...one that is familiar with clusters.
Hang in there hon
huggzzz
Shari
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Jesus Christ and the American Soldier.
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don
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You have been taking 200 10 Mg of methadone? Over what time period.
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kim
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Re: 9/24/99-?
« Reply #6 on: Oct 3rd, 2002, 9:14pm » |
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What doctor prescribed methadone for clusters? I have never heard of that.........Methadone is prescribed for heroin recovery...
I am no doctor. But I do know that no neuor worth half his salt would prescribe Methadone for Clusters.
Gotta have more info here.
Well wishes, Kim
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Charlie
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Re: 9/24/99-?
« Reply #8 on: Oct 3rd, 2002, 9:44pm » |
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I read the same thing endless.
That Georgia is a schmart one 
Charlie 
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kim
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Re: 9/24/99-?
« Reply #9 on: Oct 3rd, 2002, 9:58pm » |
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Hey Georgia
I appreciate the well read links ya put up for me. Can only reiterate my intended point in the first place : methadone is not appropriate treatment for cluster headache sufferers. Perhaps for a person in some emotional and physical combo of inter twoined you know what. Clusters? I think NOT.
Once again my hart felt thankys. just don't see the link babe.
Hey, what's in the freezer? I got the munchies. 
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Georgia
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Re: 9/24/99-?
« Reply #10 on: Oct 3rd, 2002, 10:23pm » |
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Kim - I don't recall saying whether or not I thought methadone an appropriate treatment for ch. I was simply responding to you saying Quote:| What doctor prescribed methadone for clusters? I have never heard of that.........Methadone is prescribed for heroin recovery... I am no doctor. But I do know that no neuor worth half his salt would prescribe Methadone for Clusters |
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and bringing to light that it has been used by ch'ers here, prescribed to them by neuros and pain management specialists, along with their personal success or lack thereof. Just my attempt at clarifying for a newbie.
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kim
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Re: 9/24/99-?
« Reply #11 on: Oct 3rd, 2002, 10:30pm » |
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Well Georgia I am eva so grapeful. Don't recall asking about histrionics. No table of contents neccessary. Appreciate the specs. already read em and still have to talk about it with active membors. Methadone is for ex-heroine addicts. Not Cluster Sufferers. Don't think the links ya provide say anything that would arugula the point........................
Wanna det0x? go for it. Looking for cluster relief? Look away, sailors.
The pirot
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Ueli
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Sorry to say Kim, but you are painting in black and white again.
Quote:| Methadone is for ex-heroine addicts. |
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This makes about as much sense as "Verapamil is to treat high blood pressure, period".
Methadone, a synthetic opiate, has as such analgesic properties. It is routinely given for a few days after surgery. It has its place in management of chronic pain, including cluster headaches in very refractory cases, and we had reports on this, see Georgia's links.
The addictive properties of methadone are similar to heroin, without the high. Therefore, it is used to unhook heroin junkies. But much higher doses are needed for this than for pain management, and one ends up with a methadone junkie. And these are very hard to unhook, ask our smiling NancyC, she deals all the time with them.
PFNADs
Ueli
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kim
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Re: 9/24/99-?
« Reply #13 on: Oct 4th, 2002, 10:03am » |
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Ok. I admit it. I'm a "stick person" thinker. You are, of course, right. It's hard for me to look at methadone objectively because I, unfortunately, personally know two individuals who are using it for heroin addiction. Yup. Now they are methadone addicts, who use the methadone combined with every other kind of pills they can get their hands on and which they have great ease in finding due to the playground of junkies found at the "clinic".
Methadone and Verapimil are two different things. I do realize that Clusters and Heroin Addiction are two different things, too...but -- it still gives me the willies. Can't help it Ueli
PFDAN-
Goin back to my doodling now.... 
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Drk^Angel
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3.4 Hemicrania continua
Description: These headaches are usually non-remitting (41, 42) but rare cases of remission are reported (43). Whether this headache type can be further sub-divided according to length and persistence of history is yet to be determined (44, 45).
Diagnostic criteria
A. Headache present for at least 2 months fulfilling criteria B-D
B. Unilateral headache without side shift
C. Pain has the following qualities
1. continuous but fluctuating
2. moderate severity
3. lack of precipitating mechanisms
D. Headache must have a complete response to indomethacin
E. One of the following autonomic features may appear in association with exacerbations of pain on the effected side-
1. Conjunctival injection
2. Lacrimation
3. Nasal congestion
4. Rhinorrhoea
5. Ptosis
6. Eyelid oedema
F. At least one of the following:
1. There is no suggestion of one of the disorders listed in groups 5-11
2. Such a disorder is suggested but excluded by appropriate investigations.
3. Such a disorder is present, but the first headache attacks do not occur in close temporal relation to the disorder.
PFDAN............................. Drk^Angel
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endless
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Re: 9/24/99-?
« Reply #15 on: Oct 5th, 2002, 12:01am » |
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I have 4 doctors working on my case for the past 3+ years. I had at one time just about everything related to Cluster Headaches.
left eye pain
headaches in 3 different places on the left side of head
left side facial pain
left eye would droop down
I was at one time in so much pain from light that to just watch tv I had to wear sun glasses.
Noise would make my eye tweak.
watery eye
My whole body felt so weak from fighting this I was not happy
I know that its not believeable thats its 24/7 but it what they called chronic.
Please I'm not looking for a fight on this just some comfort with others dealing with pain
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Opus
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Re: 9/24/99-?
« Reply #16 on: Oct 5th, 2002, 8:11pm » |
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endless, Have you tried Imitrex and o2? The reason most will question your 24/7 ha is that a cluster ha will make most suicidal after 3 hours though some have survived longer but not without seeking relief at the er. At one point I had shadows kip 1-3 for 6 hours with a 15 min gap and then the next shadow would hit. If I used Imitrex I know that I would be fine for 6 hours before the next one was due. You probably need to tell us your pain levels, 10 being the highest pain you can stand (close to the blackout point) PJB
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endless
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Re: 9/24/99-?
« Reply #17 on: Oct 6th, 2002, 2:42am » |
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Ok, I''ll get to the other things I have had at one time that are related to CH
Left side of my nose is very rarely clear instead I get non stop yellow stuff.
None of the CH things I get have gone to the other side instead of the left.
I had pain from
A)Left Noise
B)Light to eyes more on left
C)Left Head pain behind the eye -temple-lower left neck/head mets
D)Eye pain like when I moved my left eye I would go ouch
E)watery eye
F)lowering of the eye
G)I was unable to sit in a car because of the pain I would get from the things coming towards me sorta like a pressure thing
H)For the first 4 to 6 months I never sleep longer than 3hrs due to the fact I was always waking up from the CH pains.
I)I would get up and pace all nite, I did this alot of nites.
J)I was unable to look at a monitor with 3D gaming being played on it, it was like right back in a moving car of when things on the tv that had a lot of things flying by real fast at once
I own out something like $27,000 in ER bills & other med bills (almost every nite I went to the ER for the first 4 months until a doctor told me to see a eye doctor). and thats after suing the city of S.F for not given me what was due to me but I won and the first 15 months were on the city. But have every dam ER and Hospital calling, mailling me out bills.
Medicines
meds not in order more of what comes to mind first ok. I do know that first it was
1)Indomethacin: took sharp jagged pains to a lower level
2)Prednisone: gain LBs alot back
3)Verrapmil: this one helped for less head rushing but thats it (smoker)
4)amitriptyline: love it 200mg at nite sleeping great but not as good as I was like anything after a while its to no use
5)Depakote: made me 3x times sicker btw
6)lithium:I dont think this did anything maybe better mood?
7)Imitrex which I had to beg for because they dont like to give to Chronic CH but they gave in 9 per month,worked to lower right away but not 100%
Oxygen tank for home but this only helps in the begaining of illness
I had something with DHE in it but I forgot and also I have left 2 or 3 off cant think of name sorry .
Anyways the good news is all is gone but one thing MY HEADACHES CYCLE HAS NO BROKEN YET IN since 9/24/99
BTW
Chronic Cluster headaches:Chronic Cluster headache is defined as that occurring for more than 1 year without remission or without remissions lasting less than 2 weeks. It is subdivided into chronic CH from onset and chronic CH evolving from episodic. Chronic CH is notoriously difficult to treat and resistant to standard prophylactic agents.
********************************************
Chronic Cluster headaches:chronic cluster headache: defined by the International Headache Society as attacks occurring "for more than one year without remission or with remissions lasting less than 14 days."
*******************************************
Welcome to my living hell and the sad thing is
A)Every pain med stops working and I just move on to the next one first it was
T3 200 per month
Vicoden's 5/500 200 per month
Vicoden 7.5 200 per month
Lortab 10/500 200 per month
Percocet forgot amount
now 200 10mg methadone
I was 31 last july god please dont let me have this the next 40 to 60 years
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endless
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Re: 9/24/99-?
« Reply #18 on: Oct 6th, 2002, 2:52am » |
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I'm also allot stronger body feelings went back to work for good after almost under a yr after getting it. On some-days I really getting better but maybe the cycle is the last door to it? I don't set my self up for disappointment when it gos from good day to bad Its just s step up.
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Drk^Angel
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Endless... You're missing the idea on chronic CH... Yes... The cycles last longer than a year, but the attacks last only 15 mins to 3 hours. Chronic does not mean 24/7. Hemicrania Continua is a TAC similar to CH, but the attacks are non-remitting for 2 months or more. In other words... The pain is 24/7. It doesn't go away. The symptoms of HC is very similar to CH, because they are both TACs, but the length of the attacks are much much longer in HC. Please read my first post, and you will see that most everything you have listed are similar to the diagnostic criteria from the IHS. That is all I was trying to say. I was just trying to help.
Drk^Angel
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Drk^Angel
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3.1 Cluster headache
Includes: Ciliary Neuralgia (3), Erythro-melalgia of the head (4), Erythroprosopalgia of Bing (4), Hemicrania Angioparalytica (5), Hemicrania Periodica Neuralgiformis, Histaminic Cephalalgia (6), Horton's headache (7), Migrainous Neuralgia (of Harris) (8), Petrosal Neuralgia (Gardner), Sluder's neuralgia (9), Spheno-palatine Neuralgia (9), Vidian neuralgia (10).
Description: Attacks of severe strictly unilateral pain orbitally, supraorbitally, temporally, or in any combination of these sites, lasting 15-180 minutes and occurring from once every other day to 8 times a day. The attacks are associated with one or more of the following: conjunctival injection, lacrimation, nasal congestion, rhinorrhoea, forehead and facial sweating, miosis, ptosis, eyelid oedema. Attacks occur in series lasting for weeks or months (so-called cluster periods) separated by remission periods usually lasting months or years. About 10-15 per cent of the patients have chronic symptoms (11-13). In a large series with good followup 13% of patients had only one attack (14). These should be coded as 3.1.
Diagnostic criteria:
A. At least 5 attacks fulfilling B-D.
B. Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15 to 180 minutes untreated.
C. Headache is accompanied by at least one of the following signs that have to be present on the side of the pain:
1. Conjunctival injection
2. Lacrimation
3. Nasal congestion
4. Rhinorrhoea
5. Forehead and facial sweating
6. Miosis
7. Ptosis
8. Eyelid oedema
Or
Headache is associated with a sense of restlessness or agitation (15, 16)
D. Frequency of attacks: from 1 every other day to 8 per day.
E. At least one of the following:
1. History, physical- and neurological examinations do not suggest oneof the disorders listed in groups 5-11
2. History and/or physical- and/or neurological examinations do suggestsuch disorder, but it is ruled out by appropriate investigations
3. Such disorder is present, but cluster headache attacks do not occur for the first time in close temporal relation to the disorder
Comment: Cluster headache may be autosomal dominant in about 5% of cases (17).
3.1.1 Episodic cluster headache
Description: Occurs in periods lasting 7 days to one year separated by pain free periods lasting one month or more
Diagnostic criteria:
A. All alphabetical headings of 3.1.
B. At least 2 periods of headaches (cluster periods) lasting (untreated patients) from 7 days to one year and separated by remissions of at least one month.
Comment: Cluster periods usually last between 2 weeks and 3 months.
3.1.2 Chronic cluster headache
Description: Attacks occur for more than one year without remission or with remissions lasting less than one month.
Diagnostic criteria:
A. All alphabetical headings of 3.1.
B. Absence of remission phases for one year or more or with remissions lasting less than one month.
Comment: During a cluster period, and in patients with the chronic form, attacks occur regularly and may be provoked by alcohol, histamine (6) or nitroglycerine (18). Pain is maximal orbitally, supraorbitally, temporally, or in any combination of these sites, but may spread to other regions. Pain usually recurs on the same side of the head during an individual cluster period. During the worst attacks, the intensity of pain is excruciating. Patients are usually unable to lie down and characteristically pace the floor. Age at onset is usually 20-40 years. For unknown reasons men are afflicted 3-4 times more often than are women (13, 19). Acute attacks involve activation of the posterior hypothalamic grey matter (20) which is know to have a pace-maker role in humans.
Information obtained from http://216.25.100.131/ihscommon/classifications/pdf/03_cluster.pdf
Drk^Angel
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| « Last Edit: Oct 6th, 2002, 3:45am by drkangel » |
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endless
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Re: 9/24/99-?
« Reply #21 on: Oct 6th, 2002, 6:35am » |
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I may have saved my self tons of medical troubles if I just listen to my body. in the last full year before 9/24/99 I would get real messed up for 3 days and it will then go away I thinking what most ER do at first think sinus troubles but to no help at all. I was told by all my doctors each type of cluster hedaches there is and they all say its chronic and they agree the headache cycle has not broken yet. They also asked me to get a speech on it in for 250 doctors in S.F due to this RARER FOR OF CHRONIC CUSTER HEADEACHES done on video tape with my doctors. I never saw the 250+ doctors or soon to be doctors. I have a avg pain level of 3 to 6 pain level all day and ever if I take my normal daily dose at once which would be crazy I dont think it will cut the CCH out 100%. I have taken 2 of them and still a low headache way in background.
So we agree to disagree
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Ted
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Re: 9/24/99-?
« Reply #22 on: Oct 6th, 2002, 7:59am » |
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Hi Endless,
I think it's a great idea of you making the video for 250 doctors at the request of your doctor. It would give many doctors an education. Not on what clusters or chronic clusters are but at the level of ineptitude and ignorance of their colleagues who constantly misdiagnose different heaches. Sounds like your doctor needs a completely embarrasing situation of showing off his ignorance so maybe he/she will go back and read up on just what a CH is. Drk's been right in this thread. They don't last 24/7.
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endless
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Re: 9/24/99-?
« Reply #23 on: Oct 6th, 2002, 11:15am » |
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I give up on this bye 
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Drk^Angel
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C'est la vie... At least we tried to help. It's not our fault when someone doesn't want help.
PFDAN................................ Drk^Angel
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