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Cluster Headache Help and Support >> Medications,  Treatments,  Therapies >> Bad night
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Message started by Bob G. on Jun 25th, 2009 at 8:29am

Title: Bad night
Post by Bob G. on Jun 25th, 2009 at 8:29am
I had a CH start at 11:30 but (like a dummy)I didn't take a treximet. I have read how Imatrex can make CH's last longer, and be more intense, so I've tried to stay away from them.
I was in severe pain until 1:30 when it FINALLY started to feel like it going to pass. It didn't entirely go away though. For some reason I had sharp pain on the whole left side of my head so I decided to take a pill at 2:30. At 3:30 it was dull enough that I could fall asleep.
Has anyone else had anything like that before? I have NEVER had anything like it before and I have been dealing with CH's off and on since I was 19 or 20.
I thought it was never going to go away. :-/

Title: Re: Bad night
Post by Guiseppi on Jun 25th, 2009 at 10:20am
In the early days I had some 3 hour butt kickers...the "headache hangover" would keep me in bed for half a day. Do you have oxygen yet? It's eliminated my trex use as I had a similar concern about trex extending cycles. 3 hours....seems like an eternity huh?

Joe

Title: Re: Bad night
Post by Bob G. on Jun 25th, 2009 at 10:30am
I don't have oxygen yet. I guess my insurance only covers it if it's a "breathing" problem. I would give just about anything to get some and see how much it helps though.

And yes it does feel like an eternity. It's pretty sad when your in so much pain for so long that you actually feel like your loosing your mind.

Title: Re: Bad night
Post by Brew on Jun 25th, 2009 at 11:32am
Two words: Welder's Oxygen.

(tell them only that you'll be using it to weld)

Title: Re: Bad night
Post by thebbz on Jun 25th, 2009 at 11:38am
Those 20 rounders are a butt kicker. If you think that's the worst it gets, get ready for more. The good news is that you CAN take it and you will get through it.
Get the welders 02.
Dont forget to breathe
all the best
the bb

Title: Re: Bad night
Post by Bob G. on Jun 25th, 2009 at 2:13pm

wrote on Jun 25th, 2009 at 11:38am:
The good news is that you CAN take it and you will get through it.

the bb


You bet. I know I can take it, I just dread the thought of having the next one.

But on a good note.... I just got some GREAT news. My insurance just approved oxygen. They said they will be dropping it off to me tomorrow morning.
I hope this works.

Title: Re: Bad night
Post by thebbz on Jun 25th, 2009 at 2:17pm
Cool beans. I use it, it works for many 02,02,02. :) When used properly it's one of the best abortives out there.
all the best
the bb

Title: Re: Bad night
Post by Bob_Johnson on Jun 25th, 2009 at 3:17pm
There is remarkably little medical literature on changes in CH experience with the use of Imitrex. Reports cover a few individuals at most and that, IF a change in pattern has developed, it reverts when the med is stopped.

Point being: not much evidence to justify denying yourself relief and no evidence that any changes would be permanent.

Title: Re: Bad night
Post by thebbz on Jun 25th, 2009 at 3:44pm

Quote:
Point being: not much evidence to justify denying yourself relief and no evidence that any changes would be permanent.

Very well said. 8-)
the bb

Title: Re: Bad night
Post by Bob G. on Jun 25th, 2009 at 3:48pm

Bob Johnson wrote on Jun 25th, 2009 at 3:17pm:
There is remarkably little medical literature on changes in CH experience with the use of Imitrex. Reports cover a few individuals at most and that, IF a change in pattern has developed, it reverts when the med is stopped.

Point being: not much evidence to justify denying yourself relief and no evidence that any changes would be permanent.



My neuro say's I can only take 2 in a 24 hour period. I have 3-5 CH's a day. Before I started taking Imatrex the avg. time a CH would last would be 1/2 hour to an hour. After I started taking it they now last 1-3 hours.
I agree we should take ANY help we can get, but if it only helps with 2 a day, and I get 3-5 a day I don't want the others to be worse, or longer than they would normally be.
All I know is I REALLY hope the oxygen helps. It will be the first time I use it.

Title: Re: Bad night
Post by monty on Jun 25th, 2009 at 5:22pm

Bob Johnson wrote on Jun 25th, 2009 at 3:17pm:
There is remarkably little medical literature on changes in CH experience with the use of Imitrex.  Reports cover a few individuals at most and that, IF a change in pattern has developed, it reverts when the med is stopped.

Point being: not much evidence to justify denying yourself relief and no evidence that any changes would be permanent.


It is true that there is little published info either way. When Dr. Goadsby was asked if it was possible that triptans made a cycle longer or more intense, he said he thought they probably did for some people.

As far as the idea that the changes aren't long term and that stopping triptans will put things back to the way they were ... again, there is little info to support or contradict that idea... I personally find it hard to believe that we can inject ourselves to jolt the serotonin 1B & 1D receptors daily for a month or two and not induce changes in the nervous system.

Bottom line IMO? Triptans clearly help some people, but they are not a silver bullet for everyone. One should be aware of the possibility that they might make things better in the short run but worse in the long run ... doesn't happen to everyone, but it does seem to happen. in the end, its a personal decision to be made without a lot of solid information ... sounds like most things in life.

Title: Re: Bad night
Post by Bob_Johnson on Jun 25th, 2009 at 6:24pm
Funct Neurol. 2000 Jul-Sep;15(3):167-70.  


Sumatriptan overuse in episodic cluster headache: lack of adverse events, rebound syndromes, drug dependence and tachyphylaxis.

Centonze V, Bassi A, Causarano V, Dalfino L, Cassiano MA, Centonze A, Fabbri L, Albano O.

Dept of Internal Medicine and Public Medicine, University of Bari, Italy.

This observational study was designed to examine the pattern of sumatriptan use in patients with cluster headache using more than the recommended daily dose of subcutaneously injected (s.c.) sumatriptan. Thirteen patients suffering from episodic cluster headache were asked to record the characteristics of their attacks and drug intake for 1 year. All reported a high daily frequency of attacks (more than 3 per day) and the related overuse of s.c. sumatriptan. The results show that the overall incidence of adverse events among patients receiving sumatriptan injections for the treatment of cluster headache is low. The extended administration of this drug in episodic cluster headache did not result in tolerance problems or tachyphylaxis. Only 4 patients experienced minor adverse events and recovered more slowly than the others. They suffered from migraine without aura and cluster headache, and showed a family history of migraine. Even though they must be viewed with caution, due to the observational nature of the study and the low number of patients included, these results suggest that the profile of sumatriptan may differ in cluster headache compared with migraine.

PMID: 11062845  
===============
I knew a man in N.C. who died at 75 never having a water heater in his house. Why? Because his grandmother's heater exploded (when he was a young kid) and he never trusted them again.

The second leading cause of cancer deaths in men is prostate cancer, although it's quite curable when men allow themselves to be diagnosed and treated.

My point is this: decisions about medical treatments are fraught with human issues and technical/medical considerations which make easy and simple decisions--which are also judicious decisions--increasingly difficult.

As the number of meds & treatments have multiplied and become more potent and effective, the more side effects we have to be aware of and learn how to manage--if we want the benefits they offer. It's simply an illusion to expect high levels of both effectiveness and freedom from side effects: it's just not in the cards. (More than one science type has commented that aspirin would never pass the FDA licensing process were is coming out today: too many side effects.)

I have the perspective of age to remember when major surgery was used to treat infections because antibiotics didn't arrive until I was just getting out of grammar school! Perspective is hard to develop and especially so when dealing with a complex area out of our common experience, e.g., medicine. We do have some good sources of information which only became readily to hand with the advent of the WWW. BUT even these resources can be a problem when we don't know the quality of the information or have the skills/experience to interpret what we find.

Over the years of reading messages here I've often been anxious about the readiness of folks to manipulate drug doses, play with combinations of meds, and not reporting problems to their docs--and blow off a med as bad/useless. Even the most conscientious consumer will have some problems; the ignorant and flippant are setting themselves up for trouble.

In the end, we are all confronted with trying to strike a balance between benefit and potential cost (cost being $, side effects, and degree of effectiveness). But I'm not about to give up on modern medicine because half a life time ago the picture was so limited and even grim!

Title: Re: Bad night
Post by monty on Jun 27th, 2009 at 9:28pm
The study you quoted suggests that there are few "adverse effects" related to overuse, but it is not at all clear that the study had anything to do with the central question I raised: does regular use of triptans increase the number  or intensity of headaches, or prolong a cycle?  A rebound syndrome from taking more than the recommended dose and then returning to the recommended dose is quite different from a cycle being extended or intensified from the normal use of triptans... that isn't what they were looking for in this work, as far as I can tell.

There are several studies that have documented that serious heart problems from triptans (a major concern a few years ago) are rather rare, and that is reassuring ... such information should be factored into the decision making process.  

Regarding testing & treatment for prostate cancer: invoking the success of one type of procedure says absolutely nothing about an unrelated type of therapy. Yes, some amazing breakthroughs have been made in the last century ... but that general fact should not color any particular decision - each method should be considered on its own merits, not the fact that it is proclaimed as "modern."  The triptans clearly have some merit, but I have heard enough reports from people who went into prolonged cycles after starting them to raise a cautionary flag ... this is something to consider in the benefit/risk calculations.

Title: Re: Bad night
Post by MattyAA on Jun 28th, 2009 at 4:34am
It all is a roller coaster, for one it might for other not,

Flash who used psylocybin to treat CH didnt have single CH after first dose, others have increased frequency after dosing for a while then it all ends, after triptans some might have increased intensity and frequency, some others don't.

Title: Re: Bad night
Post by Globi on Jun 28th, 2009 at 11:06am

Bob Greenwood wrote on Jun 25th, 2009 at 8:29am:
I had a CH start at 11:30 but (like a dummy)I didn't take a treximet. I have read how Imatrex can make CH's last longer, and be more intense, so I've tried to stay away from them.
I was in severe pain until 1:30 when it FINALLY started to feel like it going to pass. It didn't entirely go away though. For some reason I had sharp pain on the whole left side of my head so I decided to take a pill at 2:30. At 3:30 it was dull enough that I could fall asleep.
Has anyone else had anything like that before? I have NEVER had anything like it before and I have been dealing with CH's off and on since I was 19 or 20.
I thought it was never going to go away. :-/



Hi,

Imitrex works and has worked well for me for 10 years. Where did you read about imitrex prolonging attacks and making it more intens????? It doesn't with me. The only down site is......i think.....that the attack will happen anyway.....maybe.....    I am lucky enough to live in a country which gives me all the Imitrex (injections) i need.

Some of you talk about "i'm getting 4 injections a month". That is bad and sad. Maybe then it's better not to know or use them at all. What you don't know.

Will the new Obama idea's on insurance/health care make a difference?

Title: Re: Bad night
Post by Bob G. on Jun 29th, 2009 at 6:38am
Where did you read about imitrex prolonging attacks and making it more intens?????

I read it here on this site. I've also noticed it happening to me. When I would get a CH it would last 1/2 hour to an hour. I started taking Imetrex and they would last up to 3 hours. Now I stopped taking it and they are back to 1/2 hour to an hour.
As far as the being more intense part goes, I think the longer a 10 lasts the worse they feel.

Title: Re: Bad night
Post by Bob_Johnson on Jun 29th, 2009 at 1:39pm
Four cases reported here. This is the tone of the reports I've found and I've scanned literature back to around 1994. My point is: a few cases don't negate the general conclusion of safety and effectiveness for this med.
=========
Headache. 2000 Jan;40(1):41-4.
Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.

Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache IN FOUR CASES. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine. BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings. METHODS: Four cases are described. RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE. CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

Publication Types:
Case Reports

PMID: 10759902 [PubMed]

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