Author |
Topic: No fun with Triptans (Read 525 times) |
|
athimmel
New Board Newbie
Reasonable?!? I don't DO reasonable!!
 
Gender: 
Posts: 40
|
 |
No fun with Triptans
« on: Mar 19th, 2007, 5:16pm » |
 Quote  Modify
|
Hi all! I haven't posted in awhile, and I posted about this topic way back when but didn't get a huge response. I'm hoping that as time has passed, I might get some new info. So here goes:
I am currently on Verapamil, and it does a pretty good job of reducing the severity and frequency of ch. However, I currently don't take anything to try to interrupt one.
I tried O2, but that did nothing. The question I have is about reactions to the triptans.
Some triptans did absolutely nothing to stop a banger. Amerge did less than nothing. However, I have found that the few triptans (and I have tried all of them, I think) that work cause a weird reaction. It is almost like anaphylactic shock (pardon the spelling). My throat starts to close up and my tongue swells. The reaction is bad enough that it has caused me some throat problems afterwards.
Has anyone else had this kind of reaction? It is particularly bad with Imitrex and Maxalt. (Sadly, Maxalt worked the best on the pain.) Are there any other treatments that could work? Please don't suggest O2...I won't go through that again!
You guys have always been great sources of insight. I would appreciate any guidance you can give.
|
|
 IP Logged |
|
|
|
Rosybabe
CH.com Alumnus
New Board Hall of Famer
"Too much of a good thing can be wonderful!!
Gender: 
Posts: 3470
|
 |
Re: No fun with Triptans
« Reply #1 on: Mar 19th, 2007, 5:43pm » |
Quote Modify
|
what about Cafergot?
I also have reactions with triptans (chest pain, numb fingers, nausea, anxiety), so, when I had already taken triptans I try with cafergot and works but takes time because it is a pill...have you heard of RC seeds? some here say they work..Red Bull?..
|
|
IP Logged |
 Believing is just the beginning!
|
|
|
athimmel
New Board Newbie
Reasonable?!? I don't DO reasonable!!
Gender:
Posts: 40
|
|
Re: No fun with Triptans
« Reply #2 on: Mar 19th, 2007, 5:51pm » |
Quote Modify
|
Tried caffergot, with no results. Never heard of RC seeds, but I hesitate on things that have no real research behind them. Paranoid, I guess. Caffeine helps from time to time, but not always. Need something I can take when I'm out and about.
|
|
IP Logged |
|
|
|
TonyG1
Guest
|
Not that type of reaction.... felt a little loopy after taking imitrex before ... 
|
|
IP Logged |
|
|
|
Bob_Johnson
New Board Hall of Famer
Gender:
Posts: 1796
|
|
Re: No fun with Triptans
« Reply #4 on: Mar 19th, 2007, 7:11pm » |
Quote Modify
|
A number of us have had good success with this med:
Headache 2001 Sep;41( :813-6
Olanzapine as an Abortive Agent for Cluster Headache.
Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.
OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. The initial olanzapine dose was 5 mg, and the dose was increased to 10 mg if there was no pain relief. The dosage was decreased to 2.5 mg if the 5-mg dose was effective but caused adverse effects. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and two patients became headache-free after taking the drug. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. It alleviates pain quickly and has a consistent response across multiple treated attacks. It appears to work in both episodic and chronic cluster headache.
------------------------------------------------------------------------ --------
Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
|
|
IP Logged |
Bob Johnson
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: No fun with Triptans
« Reply #5 on: Mar 19th, 2007, 7:39pm » |
Quote Modify
|
I know you said not to suggest oxygen. But I am! It is a Godsend for most of us. And just because it didn't work one time, there is a good chance that it will work, another time.
I have been a user for years, and there have been times that it didn't work for me, and then it would start again.
When you used it before, did you use it correctly? 10 to 15 LPM, and with a non-rebreathing mask? If you don't use it correctly, it IS worthless. That nose thing-a-majiggy is worthless!!!
I ask you to try it again. It is one of the most effective, most reasonably priced, and with the fewest side effects.
Good luck, in whatever you find that DOES work for you.
Chuck
|
|
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Samiam
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 253
|
|
Re: No fun with Triptans
« Reply #6 on: Mar 20th, 2007, 7:33am » |
Quote Modify
|
I too tried O2 yrs ago from a well known cluster Doctor in PA. The dam doctor gave me a nasal tube at 5 lpm and it did shit. So for years I thought that O2 didn't work for me and went another 15 yrs of not using it.
Well because of this board and a new neuro I got what I needed (1) M tank and 2 generators that are capible of putting out 15 lPM I use this with a full NON rebreatherable face mask and it works. I don't have to flood my system with meds so far but I am going to speak to my neuro about Topamax on Thursday and I'm waiting to see if my Botox was approved. I've already had a nevre block which this time didn't work.
Best of luck. One thing I do know is what worked before doesn't always mean it will work this time.
Sami
|
|
IP Logged |
What doesn't kill you only makes you stronger!
|
|
|
thebbz
CH.com Alumnus
New Board Hall of Famer
Ow,Ow,Ow
Gender:
Posts: 2181
|
|
Re: No fun with Triptans
« Reply #7 on: Mar 20th, 2007, 10:45am » |
Quote Modify
|
Triptans arent the only treatment for ch.
Quote:Please don't suggest O2...I won't go through that again!
|
|
You should try it again.
clusterbusters.com
all the best
jb
|
|
IP Logged |
It wasn't me I didn't do it
|
|
|
Superpain
New Board Hall of Famer
GOT O2!?
Gender:
Posts: 1351
|
|
Re: No fun with Triptans
« Reply #8 on: Mar 20th, 2007, 8:00pm » |
Quote Modify
|
I agree. Try it again...
I'd bet money you just didn't get enough.
I have to inhale and hold my breath for it to work effectively.
When I breathe deep, continuously I can't handle the pain. It's like it condenses an hour long headache into 5 minutes without losing any of the intensity or severity of the pain.
Triptans make me feel pretty shitty too. I get sick sometimes off the shots, and it always makes me feel like I'm being suffocated.
As for the rc seeds... I haven't tried them, but I know some people that have been chronic for years that have gone into remission with them. I would think that would be study enough. Shrooms worked well a few times for me. Not permanently, but they did disrupt the hits big time.
It doesn't sound like your hits are too bad ( which is good!)... Not to diminish your pain, but I think you'd be a little more agressive if your situation was more severe. What I'm trying to say is hopefully it doesn't get to that point with you, but if it does, you need to keep an open mind because it seems to me far more people get are getting far better relief off of natural substances such as O2, shrooms and seeds than anyone has ever gotten off pharamaceuticals if and when they finally find the right combo.
And shrooms are fun!
|
|
IP Logged |
Chris
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: No fun with Triptans
« Reply #9 on: Mar 20th, 2007, 10:00pm » |
Quote Modify
|
What's your current dose of verapamil? If it's working to reduce frequency and severity, maybe kicking the dose up a notch will stop most of the attacks all together. Some people take it up to almost 1000mg. If that's not an option, adding lithium might be a good move as well. Many people require polypharmacy to knock out the attacks. Talk to your doc.
|
|
IP Logged |
|
|
|
bluesunshine
New Board Junior
Gender:
Posts: 82
|
|
Re: No fun with Triptans
« Reply #10 on: Mar 24th, 2007, 5:34am » |
Quote Modify
|
for me
1-zomig tabs
2-trex jabs (if the zomig didn't work on the last attack, i won't take any chance again in aborting it with zomig -this is usually in the peak of the cycle)
3-if at home: O2. I won't give up on O2 because I know from experience, that it didn't do nothing on some rare cycle. always give it a try. edit: 10 to 15 liters per minutes and a non-rebreather mask are a must.
4-clusterbusters (this could be #1)
tried zomig nasal spray once and almost call an ambulance- couldn't breath right-sudden sweating-felt awfully weak. I am very scared of using it again.
|
| « Last Edit: Mar 24th, 2007, 5:42am by bluesunshine » |
IP Logged |
|
|
|
lionsound
CH.com Alumnus
New Board Hall of Famer
breathe
Gender:
Posts: 2021
|
|
Re: No fun with Triptans
« Reply #11 on: Mar 24th, 2007, 9:08pm » |
Quote Modify
|
on Mar 24th, 2007, 5:34am, bluesunshine wrote:for me
1-zomig tabs
2-trex jabs (if the zomig didn't work on the last attack, i won't take any chance again in aborting it with zomig -this is usually in the peak of the cycle)
|
|
Bluesunshine are you saying you use the zomig and the trex within 24 hours of each other? THAT IS VERY DANGEROUS! if you are doing that--it can be fatal. PLEASE BE CAREFUL!!!
|
|
IP Logged |
|
|
|
bluesunshine
New Board Junior
Gender:
Posts: 82
|
|
Re: No fun with Triptans
« Reply #12 on: Mar 24th, 2007, 10:53pm » |
Quote Modify
|
Not normally, lionsound, but it can happen.
But since zomig is working very well with me, I use the trex in the LAST RESORT ONLY, when the zomig or O2 did not work in the PREVIOUS ATTACK.
Zomig rarely gave up on me, and in the majority of cycles, zomig and O2 are all I need (plus melatonin).
I usually get hit 2-5 times within 24 hours, and mostly during sleep. And when at home, O2 help me to skip zomig or trex.
thanks for the concern, and I agree, mixing triptans can be dangerous.
|
|
IP Logged |
|
|
|
athimmel
New Board Newbie
Reasonable?!? I don't DO reasonable!!
Gender:
Posts: 40
|
|
Re: No fun with Triptans
« Reply #13 on: Mar 26th, 2007, 2:40pm » |
Quote Modify
|
Well, the reason I don't want to use the O2 again is because I gave it a several month trial at the proper doses. (I made sure by checking this site! Such awesome info here...it's my vital source of guidance on CHs.) I ended up with a bunch of O2 tanks in my little apartment with no benefit at all.
To Superpain: Believe me...I tried all the O2 suggestions that you made. It just didn't work for me. I'm sure that like most treatments, the oxygen doesn't work for everyone. I guess I'm one of those. And you're right. I'm grateful that my hits aren't in the severe category these days. I'm positive that the Verapamil is largely responsible for that. Also, my really active bouts only last for a few months before they lighten up.
Gator: I'm not sure what my current dosage is of Verapamil. I'll ask my doctor about the increase of dosage.
Bob_Johnson: I'm not afraid of other uses for drugs. I know that Verapamil is largely used as a blood pressure med, so I'll look at Olanzapine. My big concern is side effects. I don't react well to many different kinds of meds. (As shown by my triptan problems). I'll take a look at the side effects and see what it says. Thanks for the input.
Thanks to all who commented. I really appreciate it. But let me ask again: Has anyone had an anaphylactic (spelling?) reaction to triptans? Tongue swelling? Throat swelling, etc?
|
|
IP Logged |
|
|
|
Samiam
New Board Old Timer
I love YaBB 1G - SP1!
Gender:
Posts: 253
|
|
Re: No fun with Triptans
« Reply #14 on: Mar 28th, 2007, 5:57pm » |
Quote Modify
|
No I never had any reaction to it and I even had a problem with a change in my EKG a couple of times.
I'm now trying Topamax so far no reaction I'm working up to 100 mgs 50 @ am 50 @ pm I know it may not be a lot to most but to me my body may act up so I guess we will see. Things are calming down. I don't know if it's the Topamax or that my cycle is calming down. I'm in week 5 Usually by the end of week 6 I'm pretty much done but hey who knows anymore????
Med:
Topamax 25 mg AM
Armour 1 grain
Cortef 5 mg
DHEA 10 mgs
PM
Klonopin 1 mg
Topamax 50 mgs
Imitrex 100 mgs
O2 as need 15 lpm
Sami
|
|
IP Logged |
What doesn't kill you only makes you stronger!
|
|
|
Gator
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 4556
|
|
Re: No fun with Triptans
« Reply #15 on: Mar 29th, 2007, 12:10am » |
Quote Modify
|
Never had any allergic reactions to triptans.
On the Verapamil, if your doctor does up the dosage, you should be given an ECG for every dose increase over 480mg.
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss