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Topic: Hi - I might be a member of the club! (Read 1119 times) |
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #25 on: Apr 24th, 2008, 12:30am » |
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Hi everyone,
Just an update - I had my appointment today and was told I was a classic CH case - so here I am, officially diagnosed as a member of this infamous club.
My GP can take that and smoke it 
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #26 on: Apr 24th, 2008, 12:55am » |
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Sorry to hear that, Argonaut, but welcome home. We'll help any way we can.
Even though you're a girl.
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CostaRicaKris
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Re: Hi - I might be a member of the club!
« Reply #27 on: Apr 24th, 2008, 9:05am » |
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Well, it sucks to have CH, but I know the relief of having a diagnoses that makes sense.
Now maybe you can get some of those cool O2 tanks I was talking about.
Seriously, what about meds? Are you going to get O2? a preventative?
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Guiseppi
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Re: Hi - I might be a member of the club!
« Reply #28 on: Apr 24th, 2008, 10:04am » |
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So....you're one of those girls who FAKE CH...we seem to have quite a few of them on this board! 
Now you'll start to hear the oxygen recording.........hopefully that's on the way, 30 years of dancing with him and 02 is still my first line abortive. So glad to hear you finally have an "official" diagnosis, opens the door to so many treatment options!
Guiseppi
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #29 on: Apr 24th, 2008, 12:22pm » |
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Thanks 
At the moment, I am feeling VERY relieved. This may sound strange but I do feel like I have been validated from the diagnosis because I felt like I had previously been given the brush-off by two GPs. In the past, I sometimes wondered if I am imagining this pain or being a hypochondriac, but now - I feel like I can allow myself to say, YES THIS HEADACHE HURTS!
Anyways, I think I am on the tail-end of my cycle, so the neuro prescribed Deseril for me, and I'm to take Prednisolome when the cycle starts. We spoke about oxygen tanks but the neuro thinks that taking 4x aspirin in the first instance would help as much. Anyone else tried that before?
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| « Last Edit: Apr 24th, 2008, 12:24pm by Argonaut » |
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Brew
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Re: Hi - I might be a member of the club!
« Reply #30 on: Apr 24th, 2008, 12:42pm » |
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Stay away from aspirin or you'll end up bleeding from both ends.
Oxygen has no side effects.
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DennisM1045
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Re: Hi - I might be a member of the club!
« Reply #31 on: Apr 24th, 2008, 12:57pm » |
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on Apr 24th, 2008, 12:22pm, Argonaut wrote:| At the moment, I am feeling VERY relieved. This may sound strange but I do feel like I have been validated |
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It's a great feeling isn't it I never though I'd be so happy to be told I have a painful condition that isn't likely to go away. Weird the way the mind works... 
Quote:| Anyways, I think I am on the tail-end of my cycle, so the neuro prescribed Deseril for me, and I'm to take Prednisolome when the cycle starts. |
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Are you sure he's not treating you for migraine? Just did some googling and found that Desyrel is Trazodone Hydrochloride. It's an antidepressant that is sometimes used for treating migraine. I was unable to find any references to its use in treating CH. Maybe some others know more about this one. Where are you Bob?
Quote:We spoke about oxygen tanks but the neuro thinks that taking 4x aspirin in the first instance would help as much. Anyone else tried that before?
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Your Dr doesn't know what he's talking about on the O2 front. Go up to the OUCH-US site and print out all the info there and bring it to him. If that doesn't convince him that you should at least try O2 then you need to find a new Dr.
It's my #1 abortive. Works as fast as 10 minutes. No joke...
I recognize that I've just cast doubt on the guy who just threw you the CH rope. I hope some of this has been helpful and I'm not causing you too much anguish in the process. But I'd rather be plain about the info than to have you running down rat holes.
Good luck...
-Dennis-
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| « Last Edit: Apr 24th, 2008, 12:58pm by DennisM1045 » |
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Guiseppi
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Re: Hi - I might be a member of the club!
« Reply #32 on: Apr 24th, 2008, 2:24pm » |
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WOW!!! I'm with Dennis in that I don't want to rain on your beautiful parade of finally getting a doc who recognizes CH. But DAMN, 4 aspirin instead of oxygen? That's close to the silliest thing I've ever heard.
The prednisone taper is a great idea, but you need to get oxygen. I can't begin to tell you the security I feel hauling that stupid green tank around with me. I can knock the beast dead in less then 10 minutes, with no side effects. 4 aspirin at a time will cause you a lot of long term tummy trouble! Still damned happy you got the diagnosis, now you just need to get fully educated to better assist you in "helping" your neuro plan your treatment plan!
Guiseppi
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Jzero
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Re: Hi - I might be a member of the club!
« Reply #33 on: Apr 24th, 2008, 4:38pm » |
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Hi Argonaut,
Deseril was the first thing I was given, but with reservations. My doctor (in Qld at the time) told me that he doesn't like to use it but that he'd try me on it and monitor me. It can be bad for the heart!!!
I was desperate so took it, but not for long because I got very dizzy and my heart raced - so that was the end of that.
Aspirin is NOT going to help! I agree that he's giving you some odd advice here, but for some reason it seems to be a common practice, I've had it forced down me on two separate occasions when I had cluster so bad that I went to emergency - they were each an agonising waste of time. It was only after my own research that I found medicines worth trying for Clusters.
The Oxygen IS WAY BETTER than aspirin - 100 times better!
I'm glad he diagnosed you correctly, but be careful with the desirel.
On another note, did you read my last reply to you, and also did you notice I sent you a private message?
You've probably been busy, but, what with the site down for just after my reply, I thought I'd ask
Take good care.
Jzero.
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mezza
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Re: Hi - I might be a member of the club!
« Reply #34 on: Apr 24th, 2008, 9:11pm » |
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I used to work in a mental health clinic seeing patients- Trazadone ( desiril) is an old timey antidepressant that most psychiatrist don't usually prescribe anymore- I have seen some docs prescribe to aid in sleep- but hadn't seen it in years-
Maybe he knows something we don't  - But arm yourself with some good articles that you can find by reading some of the links on the left re: transitional meds, preventative meds and abortives and take it to him so that he can be educated around what the research says works for CH That way when or if another cycle comes about you will be fully prepared and quickly get on the right track- Also for me aspirin can't compare to other abortives including oxygen- Not even sure when in full cycle that bottle would do anything for me but eat up my stomach-
Good luck to you and arm yourself with good treatment info!!
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Argonaut
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Re: Hi - I might be a member of the club!
« Reply #35 on: Apr 24th, 2008, 11:07pm » |
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I wonder if people are getting mixed up with the brand names 
The medication I'm taking about which is branded as "Deseril" here is Methysergide - hopefully that makes it clear. I think another name for it is "Sansert"?
An Australian site for CHs mentions it as one of the medications used.
@Jzero: Apologies, I have been busy. I have been reading the boards at work but because it's an open office, I find it hard to be at liberty to respond I have seen your PMs and I will reply!
I'm finding the dizziness as well with deseril - I had one this morning and I am ready to go straight back into bed!
As for the aspirin - I was also somewhat taken aback when I was initially told, but I wondered if it was a tactic that others had previously tried. Guess not
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| « Last Edit: Apr 24th, 2008, 11:09pm by Argonaut » |
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mezza
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Re: Hi - I might be a member of the club!
« Reply #36 on: Apr 24th, 2008, 11:17pm » |
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I think you are right-!!! I saw trazadone in the earlier post and responded to that- i think the trazadone one has a 'y' in it- in terms of the deseryl spelling-
I may be mistaken- i am not sure we in US can get sansert her anymore- but i had read that sansert was a medication that was indicated for clusters- maybe some of the veterans can help more with that- I know nothing about it
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Racer1_NC
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Re: Hi - I might be a member of the club!
« Reply #37 on: Apr 24th, 2008, 11:28pm » |
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on Apr 24th, 2008, 11:17pm, mezza wrote:| I may be mistaken- i am not sure we in US can get sansert her anymore- but i had read that sansert was a medication that was indicated for clusters- maybe some of the veterans can help more with that- I know nothing about it |
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One can get Sansert from Canada or have a compounding pharmacy here in the US make it for you.
B
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AussieBrian
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Re: Hi - I might be a member of the club!
« Reply #38 on: Apr 24th, 2008, 11:33pm » |
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on Apr 24th, 2008, 2:24pm, Guiseppi wrote:| ...but you need to get oxygen... no side effects. |
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What?!!! No side effects?!!! Try lighting a cigarette at half-time and tell me there's no side effects!!
Try pacing half the night, barefoot on a cold tiled floor, then dropping an O2 bottle on your little toe and tell me there's no side-effects!
Hook up your last cyclinder at 3am only to find it empty, then spend your time rolling it down three flights of concrete stairs, along with all your other empties, and see how long it is before the neighbours start shooting at you!
No side effects! Really!!! Argonaut, take care with what you read on the net.
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Jzero
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Re: Hi - I might be a member of the club!
« Reply #39 on: Apr 25th, 2008, 5:15am » |
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Oh boy, that Oxygen sure packs a wallop if you accidentally throw it in the air and it lands on your head - the tank can hurt too
Hey AussieBrian, are you sure you're not Irish???
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Jzero
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Re: Hi - I might be a member of the club!
« Reply #40 on: Apr 25th, 2008, 6:03am » |
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Argonaut, re- the deseril; after reporting the dizziness and racing heart to my dr, he took me off it immediately and told me never to take it again. I don't know what his experiences as a dr were (whether based on patients reactions, research or both), but I've kept note of that and other meds as a result.
It may not be a negative thing for you (I hope not), it may in fact become a reliable drug for your attacks, just as Dihydroergotamine is for me. Interestingly, they are similar drugs, both have ergot and they're used in not dissimilar ways.
There's some major research going on with Cluster and LSD and Psilocybin. It may sound odd, but not as much when you consider that ergot is chemically related to LSD.
Take care.
Jzero.
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DennisM1045
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Re: Hi - I might be a member of the club!
« Reply #41 on: Apr 25th, 2008, 10:15am » |
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on Apr 24th, 2008, 11:07pm, Argonaut wrote:I wonder if people are getting mixed up with the brand names
The medication I'm taking about which is branded as "Deseril" here is Methysergide - hopefully that makes it clear. I think another name for it is "Sansert"? |
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Now that makes way more sense! Thanks for the clarification. I'm in the states and didn't turn up anything on deseril so I tried some alternate spellings. Sorry for the distration.
-Dennis-
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Brew
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Re: Hi - I might be a member of the club!
« Reply #42 on: Apr 25th, 2008, 10:31am » |
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on Apr 24th, 2008, 11:33pm, AussieBrian wrote:
What?!!! No side effects?!!! Try lighting a cigarette at half-time and tell me there's no side effects!!
Try pacing half the night, barefoot on a cold tiled floor, then dropping an O2 bottle on your little toe and tell me there's no side-effects!
Hook up your last cyclinder at 3am only to find it empty, then spend your time rolling it down three flights of concrete stairs, along with all your other empties, and see how long it is before the neighbours start shooting at you!
No side effects! Really!!! Argonaut, take care with what you read on the net.
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Smart ass.
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