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cluster headaches and finals (Read 12582 times)
MrsT
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Re: cluster headaches and finals
Reply #75 - Dec 18th, 2008 at 4:06am
 
UnderTheRadar wrote on Dec 18th, 2008 at 12:06am:
We are not doctors. period. We don't know this person, or his medical history, or his allergies, or what has and hasn't worked so far for him.  and yet everyone is so quick to tell him he is wrong, wrong, wrong for taking his prescription medication, and the general tone is that narcotics are NEVER okay for CH (or anything else.)

That's what it boils down to.....  Narcs just for uncomplicated CH is generally not a good idea, period, but there are severe chronic conditions that leave patients and doctors with no choice.

I've worked with a young man who broke his back very badly.  He cannot get out of bed by himself, much less tie his shoe laces, even with a patch on 24/7.  His doctors as well as himself know he would eventually head toward a detox facility out of state.  But there was no choice for him besides stay in bed fetal position in constant agonizing pain, no break whatsoever.

I pass no judgment either.  Linda is right on concerning warning.  I perfectly understand Pixie's point too as she's not talking about narcs solely for CH, and there ARE cases that desperately need narcs with or without CH.  Without proper credentials in pain management medicine, no "alternatives" should be suggested to his whole treatment plan.

Now that EVERYBODY understands that Ohioterpes needs to stay on narcs for the back, can we just move on?  His medication is up to him and his doctors.  We can still offer emotional and moral support.
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Re: cluster headaches and finals
Reply #76 - Dec 18th, 2008 at 7:08am
 
Mystina,

I know you're worked up on this one for your own reasons. I've learned a lot here at CH.com. I've learned about poor treatment strategies from people who have experienced them. I've learned about effective strategies from those who have lit the way in many instances. I've learned how to fight for the most effective treatment options for me.

Managing CH isn't easy, as it isn't for any health problem. It is hard work. In this thread the originator wanted an easy answer. This was evidenced by his dismissal of almost any input that required interaction beyond interaction with his keyboard. I don't blame him, what he's going through is surely hell. But, it's a hell that many posters on this thread are keenly aware of.

First, his present situation is not likely to lead to a rational approach to his being his own advocate for care. Second, at his age, he will be hesitant to argue his care with a friend of his father's as his caregiver.
More complication.

But, there are strong feelings on this subject. And, believe it our not, this subject has evoked much more careful feedback than I've seen in the past. I actually thought most people were pretty sensitive to his situation. But you are mistaken if you think this is "the giant hug" cluster headache site.

People come here to learn. People come here for support. Learning and support is often a result of people disagreeing -- even with new arrivals.

There is no easy answer. If you feel a special kinship with the originator, then good for you. Your statements:
"I'm upset because this whole board, except a few people, has completely disapointed me. I'm sad about it. I thought the board was better than this."
, or
"It's our responsibility to be kind to anyone, no matter what their choice of treatment is. "
.....well, pixie, you'll probably feel that way again here.

My main issue with the originator is this, he states:

"if i am presented with two options the first being walk and do things i normally can do, as well as giving me relief from my CH. the second option is walk slow and hunched over with debilitating pain and a CH attack that is extreamly painful i think like most people i would take option number one."


He's asking us to agree with him, or at the very least dismiss any of the feedback given, that narcotics are the only answer for him. Sorry, but I don't think you're going to find everyone saying, "yeah dude, you're right." to that.

Then he does it again, later he says:

"so it is not hard to put two and two together and see that CH and chronic back pain can be treated with the same medication it is best to do so."


Again, he's asking us to agree with him that the meds he now states are for his chronic pain are effective for CH. Again, I don't think you'll find people agreeing with that.

Managing cluster headache is hard, hard work. Overlay another condition and it complicates it further. We've seen some really tragic situations go through this board - some with really tragic outcomes, and others with miracles of life-changing dimensions. All of them faced hard work to find their answer.

Scott
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« Last Edit: Dec 18th, 2008 at 7:47am by seasonalboomer »  

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Melissa
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Re: cluster headaches and finals
Reply #77 - Dec 18th, 2008 at 7:21am
 
I completely agree with everything Scott just posted.
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Re: cluster headaches and finals
Reply #78 - Dec 18th, 2008 at 8:07am
 
Must've missed this thread somehow, but here's my 2 cents.
Yes there are 3 hour attacks. I get them in the second month of my cycle. They are the really nasty ones that even Imitrex won't touch, or barely. They are the ones that make you wanna blow your head off.
Luckily they only occur several times each cycle.

As for the narcotics, I can tell you what doesn't work: benzo's (valium, temazepam, xanax and the likes) and methadon.

Pascal.
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Re: cluster headaches and finals
Reply #79 - Dec 18th, 2008 at 2:29pm
 
Wow, thank you everybody for being cool.  I'm so sorry I got so hot-headed...I'm just afraid of losing the only outlet that I have for this.

I totally agree with everything Scott just said- the whole issue of narcotics' effectiveness aside, yes, it does look like Ohio may just want a quick agreement.  And good point, too, about how it WILL be hard for him to disagree with his doctor b/c of his age and especially the fact that it's a friend of his dad!  In fact, his dad should read this whole thread, too.

It's true that this is a volatile issue, and in a way it DOES need to get thoroughly hashed-out so no one is able to just take the easy way out with narcotics.  I just hope we don't alienate anybody like Ohio, who probably needs this board more than most people.

But I want to know, what about when the narcs DO work?  Why don't they work for most people?  Yes, Pascal, I did notice that the benzo's did nothing for my CH, although they helped with accompanying tension.  Vicodin helped a tiny bit (before I barfed all over the sculpture lab at the art building.  Tongue )  But I am getting significant relief from the Florinal, and at a very low dose. 

Anybody got a link to some info? Like a "narcotics for dummies" or a CH study?  I'm scared of having to deal with CH for the rest of my life, but I'm also scared of the choice of narcotics or nothing at all, because I know I would have to choose narcotics.

Love to you all,
Paige
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Re: cluster headaches and finals
Reply #80 - Dec 18th, 2008 at 2:47pm
 
This is the last thing I will say on the subject.

Who are you to judge? Seriously, give me an answer on what makes you so capable.

If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches.

Meaning, when one person is a jerk, someone percieves us ALL as jerks.

You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing.

Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.
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Re: cluster headaches and finals
Reply #81 - Dec 18th, 2008 at 2:49pm
 
there was no reason for me to bring up my chronic back pain and how it was treated in my first posts, i was not looking for alternative means to deal with a different problem, i was looking for ways to get through finals with CH.......and treatments for CH especially when in this great length, my Nero said oxygen is a great way to stop short attacks, but not those in this duration.....and quite frankly i trust the man as my father did when they worked together back in baltimore.....furthermore i do not think that the pain meds are responsiable for every headache to last 3-4 hrs.......i understand that rebound headaches will happen, but they fail in comparison to CH and feel more along the lines of a simple migraine.
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Re: cluster headaches and finals
Reply #82 - Dec 18th, 2008 at 2:57pm
 
furthermore i do not care if you think that treating CH with Pain medications is a good idea.......and i want people to disagree with me, that is one of the best way to find new solutions to problems....and to set things straight my father is an endocrinologist and not a nero
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Re: cluster headaches and finals
Reply #83 - Dec 18th, 2008 at 2:59pm
 
Pixie-elf wrote on Dec 18th, 2008 at 2:47pm:
This is the last thing I will say on the subject.

Who are you to judge? Seriously, give me an answer on what makes you so capable.

If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches.

Meaning, when one person is a jerk, someone percieves us ALL as jerks.

You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing.

Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.




Pixie, when I said that they didn't work, I meant for me. I can't speak for anyone else, nor will I.
However, it should be pointed out that they are very dangerous, as they are addictive as hell.
I am not in favour of doctors prescribing them.

Pascal.
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Re: cluster headaches and finals
Reply #84 - Dec 18th, 2008 at 5:55pm
 
ohioterpes wrote on Dec 18th, 2008 at 2:49pm:
there was no reason for me to bring up my chronic back pain and how it was treated in my first posts, i was not looking for alternative means to deal with a different problem, i was looking for ways to get through finals with CH.......and treatments for CH especially when in this great length, my Nero said oxygen is a great way to stop short attacks, but not those in this duration.....and quite frankly i trust the man as my father did when they worked together back in baltimore.....furthermore i do not think that the pain meds are responsiable for every headache to last 3-4 hrs.......i understand that rebound headaches will happen, but they fail in comparison to CH and feel more along the lines of a simple migraine.


I genuinely have NO idea what your neuro is saying with the " "oxygen is a great way to stop short attacks". It doesn't make any sense at all. 02 used CORRECTLY is an effective abortive for a huge proportion of sufferers, period. It aborts attacks and MAKES them short.

The very FIRST thing all Ch'ers need is a safe abortive which makes all or as many as possible of their attacks STOP. Not something which knocks the edges off the pain like a narcotic does and adds other problems.
This usually means 02 or triptans as they act on the pain mechanism, not the symptoms.
If abortives are not being wholly effective and sometimes even if they are, prevents are the next area to explore.

I am finding it REALLY hard here to see what avenues for CH treatment you HAVE explored. You just seem to be saying "my Dad's friend says use painkillers" so I do........

Most of us have discovered that you can't be that passive a player in your own treatment, you need to educate yourself, then educate them, then MAKE them give you the treatments that actually work.


Wendy
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« Last Edit: Dec 18th, 2008 at 6:05pm by pubgirl »  

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Re: cluster headaches and finals
Reply #85 - Dec 18th, 2008 at 8:08pm
 
Quote:
Headache Clinic, Department of Neurology, Ghent University Hospital, De Pintelaan 185, B-9000 Ghent, Belgium. koen.paemeleire@ugent.be

Cluster headache (CH) is associated with the most severe pain of the primary headache disorders. Barriers to optimal care include misdiagnosis, diagnostic delay, undertreatment, and mismanagement. Medication-overuse headache (MOH) may further complicate CH and may present as increased CH frequency or development of a background headache, which may be featureless or have some migrainous quality. A personal or familial history of migraine appears to be strongly associated with the development of MOH in CH, at least with the phenotype of background headache. Patients with CH, especially those with a personal and/or family history of migraine, must be carefully monitored for MOH, and medication withdrawal should be considered if a CH patient presents with features of MOH.

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Re: cluster headaches and finals
Reply #86 - Dec 18th, 2008 at 9:16pm
 
what i meant by short attacks, are the attacks that last less then an hour


and pain meds mentally addictive, much more so then the physical aspect, and being a son of a doctor i know the signs of an addiction, and he dose to........now that being said  pain medication is addictive to alot of people, but it is used to treat pain (in my case my back and head) and if the pain can be manged they help..........and if you want to know what exact dose i take it is 750mg hydrocodone every 5hrs during an attack cycle....but when not in a cycle and just to treat back pain it is 500mg every 6hrs....keep in mind i am 6'4 250




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« Last Edit: Dec 18th, 2008 at 9:38pm by ohioterpes »  
 
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Re: cluster headaches and finals
Reply #87 - Dec 18th, 2008 at 9:47pm
 
Pixie-elf wrote on Dec 18th, 2008 at 2:47pm:
This is the last thing I will say on the subject.

Who are you to judge? Seriously, give me an answer on what makes you so capable.

If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches.

Meaning, when one person is a jerk, someone percieves us ALL as jerks.

You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing.

Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.


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Re: cluster headaches and finals
Reply #88 - Dec 19th, 2008 at 3:57am
 
ohioterpes wrote on Dec 18th, 2008 at 9:16pm:
what i meant by short attacks, are the attacks that last less then an hour


and pain meds mentally addictive, much more so then the physical aspect, and being a son of a doctor i know the signs of an addiction, and he dose to........now that being said  pain medication is addictive to alot of people, but it is used to treat pain (in my case my back and head) and if the pain can be manged they help..........and if you want to know what exact dose i take it is 750mg hydrocodone every 5hrs during an attack cycle....but when not in a cycle and just to treat back pain it is 500mg every 6hrs....keep in mind i am 6'4 250






I am genuinely sorry ohioterpes - it appears that you don't want to answer any questions about your CH which are only asked so people can try and understand and help, and you don't wish to explore or discuss CH treatment options.

If all you prefer to do is discuss your pain meds, I have nothing useful to contribute so I will leave the posting from now on to others

Good luck with everything

Wendy
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Re: cluster headaches and finals
Reply #89 - Dec 21st, 2008 at 2:40am
 
your right i have not answered any questions such as where the pain is located, how bad, how long it last, preventitve medication, and alternative medications for headache pain. i have not answered any of these questions at all....or wait, wait i did...if you would like to know something ask i cant read your mind and answer questions that have not been raised.
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Re: cluster headaches and finals
Reply #90 - Dec 24th, 2008 at 4:44pm
 
Pixie-elf wrote on Dec 18th, 2008 at 2:47pm:
This is the last thing I will say on the subject.

Who are you to judge? Seriously, give me an answer on what makes you so capable.

If you have some other cluster site where people can get support, send me to it. I don't expect things to be all hugs, but this is the only places for sufferers to GO. We represent everyone with cluster headaches.

Meaning, when one person is a jerk, someone percieves us ALL as jerks.

You can disagree with someone, and not shove your opinion down their throat. Which is exactly what happened. There is a REASON why people expect to get 'yelled at', as one thread put it, for mentioning narcs. It has it's place in medicine, and it's not for CH, but sitting there and telling someone that they are wrong, over and over, acomplishes nothing.

Which is part of why, I'm done with this. I'm done trying to get you to see things from another viewpoint.


Pix,

Lots of people have left this board permanently because of vicious personal attacks. Part of this is simply that CH leaves one with a very short temper and little perspective on how our comments affect others. Those of us who use narcotics tend to keep quiet about it because it invites attacks. Like anything, in some people narcotics are a trigger or at best offer no relief at all. Trying to lecture them about long-term heart valve damage caused by Imitrex, however, and they act like you are batty because long term damage is not important when one is struggling to find the motivation to live through a single day. Relate that to narcotics for those of us whom nothing else works for and they don't get it.

My advice?  Just give up trying to change people's minds about narcotics. In their minds it is as addictive and pointless as meth or heroin, and you aren't going to educate anyone. The irony is that most of them haven't tried it. Narcotics only help about 20% of people who try them, and because of other problems everything else should be tried first. If you are episodic, this may mean you could go decades trying other things before you determine nothing else works for you. If you are chronic it may only take 2-3 years.

In this particular instance it looks like they were right, and this particular person hasn't tried alternatives yet. Alternatives that are not as problematic as narcotics are. Don't assume that doctors are educated about managing CH. Most MD's in the USA have 4 hours of headache training. Most of them will never see a single patient with CH. Even if you are on the narcotics bandwagon, they still must be seen as a last resort because they create permanent changes in your brain that lead to higher and higher tolerances until they finally stop working entirely.

Relax, take a deep breath, and don't let people get to you.
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Re: cluster headaches and finals
Reply #91 - Dec 24th, 2008 at 4:59pm
 
ohioterpes wrote on Dec 12th, 2008 at 7:35pm:
  i am going to rush through it and try and speed home...my fastest time is 2 hours and 45 min but i will have to go faster to make it......i will talk to him about all treatments out there when i meet with him.....and thanks for all your help so far.


    Maybe you missed  this part.

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Re: cluster headaches and finals
Reply #92 - Dec 24th, 2008 at 6:32pm
 
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Re: cluster headaches and finals
Reply #93 - Dec 24th, 2008 at 7:11pm
 
Pixie-elf wrote on Dec 18th, 2008 at 2:47pm:

Who are you to judge? Seriously, give me an answer on what makes you so capable.



We are a people with knowledge.  We are not doctors, we have actual first hand knowledge.  We aren't judging, we are passing along info. 

I am sorry you are upset, Mystina.  Opiates are addictive.  That is a fact and can not be disputed.  Whether you take opiates responsibly or irresponsibly, they are addictive.  Whether your doctor guides your prescription and has you under close supervision or not, opiates are still addictive.   

Ohioterpes, you have a script for the hydrocodone and you say it's 500mg and 750mg hydrocodone? 

 


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Re: cluster headaches and finals
Reply #94 - Dec 24th, 2008 at 7:52pm
 
BMoneeTheMoneeMan wrote on Dec 24th, 2008 at 7:11pm:
Pixie-elf wrote on Dec 18th, 2008 at 2:47pm:

Who are you to judge? Seriously, give me an answer on what makes you so capable.



We are a people with knowledge.  We are not doctors, we have actual first hand knowledge.  We aren't judging, we are passing along info.  

I am sorry you are upset, Mystina.  Opiates are addictive.  That is a fact and can not be disputed.  Whether you take opiates responsibly or irresponsibly, they are addictive.  Whether your doctor guides your prescription and has you under close supervision or not, opiates are still addictive.    

Ohioterpes, you have a script for the hydrocodone and you say it's 500mg and 750mg hydrocodone?  

 




     And then ya drive real fast.  I can't find my butt with a hydrocodone in me.

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Re: cluster headaches and finals
Reply #95 - Dec 24th, 2008 at 8:28pm
 
Potter wrote on Dec 24th, 2008 at 7:52pm:
    And then ya drive real fast.  I can't find my butt with a hydrocodone in me.

                       Kinder gentler Potter


Good thing you're not taking any!   Grin   

Meds and tolerances are as individual as the beast.  Some people take 240mg of verapamil for relief and others need 1200mg.  Some people need 250mg of Depakote, others need 1000mg.  Etc. 

I can drink 2 glasses of wine before getting loopy.  When he could drink, Gary could drink 2 bottles of wine before getting to that same loopy.

IMO, narcotics have a role in treating intractable chronic pain.  But when it comes to CH, uneducated doctors will prescribe it inappropriately, and uneducated patients desperate for anything to relieve the pain don't know better.

Good thing CH.com is here to be found.  Smiley

Laurie

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