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Topic: hey episodics, what is the best treatment? (Read 885 times) |
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maria9
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hey episodics, what is the best treatment?
« on: Jul 19th, 2004, 10:43pm » |
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Hey, just curious about you episodics, have you ever found the right balance of pharmaceuticals, such that you did not ever have a cluster headache within your cycle? Seems to me and I could be wrong that when we go into cycle we do anything we can to avoid the pain so we add one medication on top of another, then we suffer the side effects of the meds as well as continuing to have these horrible cluster headaches. Other than doing the shrooms, is there any one out there that has been able to, with the conventional medicines, completely avoid the cluster headaches once in a cycle? If so what drugs or combination did you use?
Marsha 
Marsha
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thomas
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Re: hey episodics, what is the best treatment?
« Reply #1 on: Jul 20th, 2004, 8:07am » |
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This is what works best FOR ME. I have NEVER found ANYTHING to prevent 100% of my ch's in cycle, but this has been the most effective treatment FOR ME to date.
My CH treatment
20min HOT steamy shower 1 hour before bed
3 mg of melatonin and 2 mg of time-release melatonin afterwards
Go to bed
Wake up in the morning, take 250 mg of magnesium and 20 mg of fluoxetine (prozac)
Abort with zomig as needed.
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Lobster
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Re: hey episodics, what is the best treatment?
« Reply #2 on: Jul 20th, 2004, 8:10am » |
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Topamax alone worked surprisingly well for me with my last episode. 100-125mg at bedtime.
Topa had me completely PF within 4-5 days of starting it.
With my prior episode Topa worked well, but did not keep me 100% PF... still needed 1-2 Imitrex injections per week.
Rok
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don
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Re: hey episodics, what is the best treatment?
« Reply #3 on: Jul 20th, 2004, 8:20am » |
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verapamil 480 mg/day
prednisone taper
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Giovanni
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Re: hey episodics, what is the best treatment?
« Reply #4 on: Jul 20th, 2004, 9:22am » |
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The only thing that I totally avoided a cycle with are mushrooms. Other things that helped in the past are:
verapamil; 5-HTP @150 per day; melatonin @9, B-Complex 50s X 3; green or black tea X 3-5 a day. Abort with imitrex injections/O2.
I hope you find your magic bullet.
John
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Bob P
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Re: hey episodics, what is the best treatment?
« Reply #5 on: Jul 20th, 2004, 10:38am » |
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Only thing that stops my attacks dead in their tracks is prednisone. Of course that is only temporary.
I'm best with cafergot and O2. I still get hit but they are only 5-10 minutes Kip 3's.
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JJA
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Re: hey episodics, what is the best treatment?
« Reply #6 on: Jul 20th, 2004, 1:09pm » |
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If you count melatonin(9mg), I had two consecutive cycles without a full blown attack. I started when I felt shadows coming on. I still had plenty of shadows, so I knew I was in cycle, but nothing bad enough to make my eye water. It didn't work for my last cycle, however.
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FZfan
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Re: hey episodics, what is the best treatment?
« Reply #7 on: Jul 20th, 2004, 7:53pm » |
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Went through my last cycle with nothing but oxygen. It didn't abort every h/a, but it knocked down enough of them to make it worthwhile not to take any meds. Cycle lasted about 5 weeks with 2-3 attacks/day, which is normal for me. Went through a shitload of 02!
I felt better through that cycle than any cycle I ever had before. As long as my cycles don't get longer and the o2 keeps working, I don't intend to ever take any meds again, with the exception of zomig zmt. After reading up on it I do intend to try that when the next cycle hits.
Now shrooms, on the other hand... 
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| « Last Edit: Jul 20th, 2004, 7:56pm by FZfan » |
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Kris_in_SJ
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Re: hey episodics, what is the best treatment?
« Reply #8 on: Jul 20th, 2004, 8:24pm » |
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My episodes are 3-4 years apart, so I haven't yet found anything to totally prevent a cycle. Once I have that first HA, though, I call the doc and get started on Verapamil and Prednisone. Imitrex to abort.
I've read elsewhere here (and will be watching for it in a couple years) that many people notice changes in their sleep patterns just before a cycle starts.
I would guess that if you could predict that a cycle was coming on and started your "cocktail" right away, you might be able to abort the cycle before it really got started.
At any rate ... I just keep hoping they'll find a true cure before my next cycle starts.
Hugs,
Kris
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eyes_afire
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Re: hey episodics, what is the best treatment?
« Reply #9 on: Jul 20th, 2004, 8:31pm » |
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Quote:| have you ever found the right balance of pharmaceuticals, such that you did not ever have a cluster headache within your cycle?.... Other than doing the shrooms, is there any one out there that has been able to, with the conventional medicines, completely avoid the cluster headaches once in a cycle? |
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Nope.
Not me, not even with shrooms. I haven't found anything that could do that when I was episodic. Such a find would truly be a treasure. Verapamil comes closest. And now I'm chronic  ... so they say.... (does that mean I'm disqualified?  )
--- Steve
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floridian
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Re: hey episodics, what is the best treatment?
« Reply #10 on: Jul 21st, 2004, 8:08am » |
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I have been able to get through 1 year (and am part way through a second) with no headaches but with definite associated symptoms (disturbed sleep, mania, tingling in feet, etc). Melatonin at night a half hour before bed. Magnesium twice a day (total of 500 mg/124% of DV). 5-htp in the day time. Ginger and turmeric. I stop drinking alcohol when the temperature here gets over 85 F. I turn down the air conditioning and limit exposure to heat - yard work is done only early morning or late evening when its cool. If it rains, my grass gets tall.
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Jimmy_B
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Re: hey episodics, what is the best treatment?
« Reply #11 on: Jul 21st, 2004, 11:09am » |
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Obviously most people will probably tell you...
1) O2
2) Imitrex
3) Verapamil
With possibly a prednisone dose pack at the start of cycle.
But since I can't take Imitrex & O2 does not help...I find this cocktail really helps, when in cycle.
I take a Medrol Dose pack at the beginning of the Clusters. Start on verapamil & 1 or 2 OxyIR 1/2 to 1 hour before each attack (The ones that come at the same time, every day.) Begin to taper OxyIR when cycle seems to be ending.
I've also noticed since taking the imitrex out, my cycles are shorter & remissions are longer. Could be a coincidence. But why change what's working.
Jimmy
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bluesunshine
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Re: hey episodics, what is the best treatment?
« Reply #12 on: Jul 21st, 2004, 10:17pm » |
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Never could avoided it completely
-Depakote (epival) made it worst
-verapamil, no significative relief for me + sides effects=not worth it
-this year (now in cycle again) only O2, zomig and the bazooka immitrex injectable (for the middle of the night hits)
PLUS melatonin for the first cycle TADAM!! and guess what, didn't use the bazooka yet.
blue
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maria9
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Re: hey episodics, what is the best treatment?
« Reply #13 on: Jul 21st, 2004, 10:31pm » |
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Hey all thanks for your replies,
Some of you may remember my first post saying that golf had cured my clusters. After taking up golf I had a 5 year remission. Most of you did not respond some did. When I went on to say that a doc that I happened to meet at a Saturday clinic at my HMO, when I told him I could not take this anymore (CH), he suggested in the future to start on Prozac once I felt the premonitory symptoms. In my case the premonitory symptoms included a low grade headache upon waking up followed by a shadow the next day. Sometimes, it seems if I started taking Prozac, I was home free no headaches, but when these last cycles came on no warning or nothing. As to not taking the Imitrex, I would have to say live without it although i know it is tough once you have gotten that instant relief.
Marsha who has never had an imitrex injection, only cafergot
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buckeyescooter
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Re: hey episodics, what is the best treatment?
« Reply #14 on: Jul 22nd, 2004, 2:27pm » |
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I've been on Prozac for 12 years. 20 mgs per day for the last 10 yrs. and 40 for the last two. Don't really know if it helps my clusters....I started it for depression. But now that I think about it, that was around the time I went from chronic to episodic. I can't honestly be sure if those two are related.
The other meds I take have already been mentioned.
Verapamil up to 600 mgs per day.
Prednisone taper
02....the best abortive for me
Zomig nasal spray...another effective abortive
Topamax....this worked very well for me. The side effects are a bitch, but like Rock Lobster, this sucker really knocked my ha's out.
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| « Last Edit: Jul 22nd, 2004, 2:28pm by buckeyescooter » |
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Clusterheads are a rare breed.
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K.
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Re: hey episodics, what is the best treatment?
« Reply #15 on: Jul 22nd, 2004, 3:45pm » |
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Verapamil 480 mg/day
O2!! to abort
trex injections if needed
K.
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Superpain
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Re: hey episodics, what is the best treatment?
« Reply #16 on: Jul 22nd, 2004, 6:50pm » |
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I think Thomas says prozac helps him too...
Me...
Nothing for 18 yrs, till I found this site and got referred to a good doc.
this last time
Prednisone taper -80mg per daydown to 20mg, over 14 days.
240mg ramped up to 480 mg of verapamil per day
imitrex injections to abort
O2 to abort.
Don't be scared of the needle!
Kill a few HA's like that and your view of needles and taking a shot will do a 180!
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Chris
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BlueMeanie
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Re: hey episodics, what is the best treatment?
« Reply #17 on: Jul 22nd, 2004, 7:06pm » |
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I wish I could help Maria, but I get a cycle EVERY year and have never found a prevent yet to stop a CH. For me it's abort abort abort. Either 02 or Trex.
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maria9
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Re: hey episodics, what is the best treatment?
« Reply #18 on: Jul 22nd, 2004, 10:27pm » |
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Hey thanks all for your replies. The reason why I asked the original question, does anything work to completely take the CH away? was because I have dealt with this for so many years, while the pain is so severe that you want to throw anything at it that might relieve it, at the same time you are dealing with the CH conundrum, do you just face the pain and get over it or take the meds and possibly have to deal with the beast for even a longer period of time? Or you can try the alternative :
clusterbusters.com.
Wishing you all well,
Marsha
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pam s
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Re: hey episodics, what is the best treatment?
« Reply #19 on: Jul 24th, 2004, 12:56am » |
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on Jul 19th, 2004, 10:43pm, maria9 wrote:| Other than doing the shrooms, is there any one out there that has been able to, with the conventional medicines, completely avoid the cluster headaches once in a cycle? If so what drugs or combination did you use? |
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For the first time this cycle, I did. But the cycle was probably two weeks longer than usual. Basically, I used split Imitrex injections to abort anything I could not abort any other way. I know they increased the frequency of the CHs, too.
Also, 400 mg topomax seemed to blunt the CHs a bit, but did not make them less frequent. I used melatonin, 9 mg. Near the end of the cycle I finally got O2 (but at only 5 liters) and when I had lingering shadows, took mushrooms.
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JohnM
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Re: hey episodics, what is the best treatment?
« Reply #20 on: Jul 26th, 2004, 10:02am » |
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Imigran inj is the only way for me to stop a CH in it's tracks. I have tried most of the preventatives that are recommended here over the many years to no avail.
I have had good success in my last 2 episodes of "breaking the CH cycle" by undertaking a strict detox diet which ended the CH cycle within about 5 days of starting the diet each time.
It mainly involves drinking only lots of plain water and eating only fresh fruit and veg for at least 5-7 days. It is a tough diet to stick to but the relief was well worth the effort
Might be worth a try?
John
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IndianaJohn
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Re: hey episodics, what is the best treatment?
« Reply #21 on: Aug 7th, 2004, 8:12pm » |
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Just bumpin it back up for reference
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Did my brains fall out or is this headache over?
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IndianaJohn
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Re: hey episodics, what is the best treatment?
« Reply #22 on: Aug 7th, 2004, 8:16pm » |
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this is an issue that I'm still struggling with. The imitrex has seemed to make this cycle exceptionally long (almost 12 weeks).
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Did my brains fall out or is this headache over?
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don
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Re: hey episodics, what is the best treatment?
« Reply #23 on: Aug 7th, 2004, 8:47pm » |
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Quote:| I think Thomas says prozac helps him too... |
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Nooooo. It was everyone else who said prozac helps THEM when Thomas takes them. 
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ex_pat_asia
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Re: hey episodics, what is the best treatment?
« Reply #24 on: Aug 8th, 2004, 12:20am » |
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Jimmy nearly dialed in for me the cocktail working best at this juncture with my slight alteration below:
on Jul 21st, 2004, 11:09am, Jimmy_B wrote:Obviously most people will probably tell you...
1) O2 (abort)
2) Imitrex (abort)
3) Verapamil (prophylactic)
With possibly a prednisone taper (betamethasone for me) |
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I also have added magnesium supplements...because that stuff is good for a lot of things anyway. 800 MG per day.
Jimmy, your Oxygen idea (as a preventative before a regular event) is a splendid one that I want to try. I like the idea of throwing the demon off his cadence. I too have attacks that are alarm clock disciplined. My 2 am and 2 pm are uncanny. My episodes work up to 7 - 8 attacks per 24 hrs. The 2&2s are the first to arrive usually and just keep on keepin on as other breakouts occur. Maybe we have Rolex Cluster???
Thanks for the idea
Cheers and PFDAN
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| « Last Edit: Aug 8th, 2004, 12:26am by ex_pat_asia » |
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ex_pat_asia
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