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outofcommission
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just say no to drugs?
« on: Feb 29th, 2008, 12:59am » |
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it seems that all these expensive prescription drugs (imatrex come to mind) we are taking are taking care of the pain and not fixing the source of the problem. i know that some prescriptions work for some of us, and others have had a bad time with the side effects. it seems that the more natural and sometimes illegal treatments are more effective. any body else had luck with the natural stuff. or maybe with vitamins or supplements? of course we all know the wonders of o2.
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| « Last Edit: Feb 29th, 2008, 1:00am by outofcommission » |
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that which does not kill you will only make you crazy, obsessive, and sleep deprived
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MJ
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Re: just say no to drugs?
« Reply #1 on: Feb 29th, 2008, 1:13am » |
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Unfortunately I am one of those few that doesnt know the wonders of 02. Believe me I've tried to find the wonder.
I have never had any success with RX drugs for CH other than high dose prednisone.
Vitamins and supplements were a no go as well.
The only thing that ever helped me in over 30 years now was a natural drug.
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MJ
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darknight
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Re: just say no to drugs?
« Reply #2 on: Feb 29th, 2008, 6:07am » |
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if it works for you then go for it so far my 02 works and imigran just incase, i hope you find yours
PFD
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beachmusic
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Re: just say no to drugs?
« Reply #3 on: Feb 29th, 2008, 7:51am » |
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What the heck works then? Imitrex, no. Relpax, no. Topomax, not yet. Depakote, not yet. Prednisone, I could write a book! O2, not sure, dr. wont order it. Migranal, yes but have no more. Expenses per month... hundreds. Toll on body and emotions, well everyone here knows about that!!!
Getting some sleep, YES that works or atleast sounds good. Please get me some long uninterrupted sleep. Any thoughts on how well melatonin along with an ambien might do?? Seeing as an ambien alone gives me about 3 hours.
And never forget if you don't leave the house there is the slight chance you might be a tiny bit safer.
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E-Double
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Re: just say no to drugs?
« Reply #4 on: Feb 29th, 2008, 10:57am » |
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since going med free I have found life easier.
Period...end of sentence 
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nani
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Re: just say no to drugs?
« Reply #5 on: Feb 29th, 2008, 10:58am » |
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Different treatments work for different people.
Personally, I've had the most success with alternatives. First, kudzu. Then, clusterbuster treatments.
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rickyshot
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Re: just say no to drugs?
« Reply #6 on: Feb 29th, 2008, 12:59pm » |
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same here with busting. Very good results with CH but not with my migraines. Was disappointed with that aspect but worked wonders on CH. I found no other alternative method worked for me.
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Superdave
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Re: just say no to drugs?
« Reply #7 on: Feb 29th, 2008, 1:34pm » |
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I'm cronic, it's a daily battle for me 365 days a year. I was on 4mg sansert for 2 months no results. Went to 6mg sansert and started 9mg melatonin @ bedtime. Energy drinks for shadows and threats, and got instant relief. Yea!  3 weeks 3 mild attacks, Fingers crossed hopes high. Best results since prednizone.
Superdave
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Wow! you mean it's just in my head?
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jace77
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Re: just say no to drugs?
« Reply #8 on: Feb 29th, 2008, 10:15pm » |
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Chronic here too for 10 years, did histamine desenstitization, started on doxepin at bedtime and pepcid twice a day as well as 240mg verapamil twice a day and lyrica 50mg twice a day and 10mg melotonin at bedtime, then followed with 4 days DHE sub cutaneous infusion at home and no finally PF for 15 days!
It is trial and trial again to find the cocktail for you if we are lucky enough. Once PF for 6 weeks, Dr will taper off all meds and hope for the best.
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kcopelin
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Re: just say no to drugs?
« Reply #9 on: Feb 29th, 2008, 11:17pm » |
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Personally I say no to the following:
pred: already osteopenic from so many tapers and Ch returns once tapered down.
lithium: nausea, dizziness and no relief
tegretol: nausea, dizziness, no relief
imitrex and all other triptans-cardiac concerns
sleeping pills (ambien, lunesta...) increase REM sleep-the kind where CH lives-
I take
verap: preventative
very low dose elavil and celexa at night
melatonin and benadryl at bedtime
xanax when I get too friggin' anxious to function.
and
O2
and
energy drinks.
so I guess I say no to some drugs. 
PFDAN
kathy
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LarryM
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Re: just say no to drugs?
« Reply #10 on: Feb 29th, 2008, 11:42pm » |
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Twenty five years ago I would have taken anything to stop the pain, and finally after being correctly diagnosed, I got A. Brain scan - correct procedure - but only to eliminate a tumor or organic cause. B. Prednisone
taper - again correct but no help. C. Cafergot - no help. and D. O2 - Just postponed the headaches for an hour. and E. Good luck and all of my non-insurance covered cost waived because the Neurologist said he didn't believe other than Imatrex anything else was effective and he believed Imitrex had too many side effects and wouldn't charge me for something that didn't help.
Next stop was a kindly GP who gave me free samples of anything we thought would help - Inderal for example, but we never found anything effective.
I really cringe when I read this site and see all the Rx's people are using without reading about the potential side effects, withdrawl issues, etc. Please learn what the terms "Black Boxed" and "off labeled" mean. My wife recently attended a "chronic pain" seminar to see how they approached cluster headaches. CLusters got twenty minutes - same as a migrane - drop a couple Zyprexa and life is just like the movie The Sound of Music, and this was an expensive seminar with the attendee's getting continuing education credits attended by all levels of the Medical Field.
I learned about Energy drinks, taurine and melatonin off this site and they've done more for me than any RX ever did. Can't comment on seeds or Kudzu but they can't be worse than Topomax. O2 if it's effective should be the first choice. Can't see making a bad situation worse and would be glad to have a responsibile discussion with anyone pro or con about taking some of the Meds I see mentioned. thanks for your patience, Larry M.
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sandie99
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Re: just say no to drugs?
« Reply #11 on: Mar 1st, 2008, 5:48am » |
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I react very strongly to meds, so I decided that enough was enough and dealed my last cycle without meds and it turned out to be the best solution for me.
So these days I have energy drinks and ginger ale in my fridge, caffeine tablets always with me (just in case) and some taurine-guarana chewing gum and ice cubes in my freezer. That combo helps me to deal with the beast the best.
But we're all different and bit different solutions work wonders. Personally I keep my eye on new things, because the beast can change any day, so I'll be ready if my now ch fight pack quits working.
Sanna
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beachmusic
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Re: just say no to drugs?
« Reply #12 on: Mar 1st, 2008, 7:07am » |
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I say no to Prednisone. Lost my dad 2 years ago due to that stuff. I believe (pray) I am seeing some relief from benedryl and melatonin and caffiene. Fingers crossed here and thanks to some very healthy advice from a kind person named Barbara that has been messaging me here I think I am getting some gumption back and I am going to kiss some ass when I see my doctors next! Of course I didn't have a cluster yesterday so I am feeling a bit high and mighty right now 
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kimh
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Re: just say no to drugs?
« Reply #13 on: Mar 1st, 2008, 8:51am » |
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Has to be your decision. As usual no easy answer. I can only share my experience which has spanned a long time with this affliction.
I no longer take any pills. Period. o2, LOTS OF COFFEE, frozen peas. To date, there is no prescription a doc can give me with confidence - only a crap shoot -
People in pain are desparate. And drug companies just love that.
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beachmusic
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Re: just say no to drugs?
« Reply #14 on: Mar 1st, 2008, 9:04am » |
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LOL at myself. I meant KICK not kiss!!
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Ace
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Re: just say no to drugs?
« Reply #15 on: Mar 1st, 2008, 9:07am » |
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I a m with the "No drug thing" Took Ultram and midring first. Both gave me more and worse CH. Became an Opiate addict thanks to CH. Tried Ambien. Worked well for 3 years and then just stopped. Now I find that any driug works once then I become allergic to them. I will NEVER take Prednisone again. One...it almost killed me and damaged my body forever due to a reaction. Two...I taped off of it after being on it a year and I had the worst and longest CH due to my body converting back to "normal".
No drugs work the best for me. Energy drink...coffee...O2...lots of water...quitting smoking. This it what works for me.
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Jonny
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Re: just say no to drugs?
« Reply #16 on: Mar 1st, 2008, 2:07pm » |
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on Feb 29th, 2008, 7:51am, beachmusic wrote:| O2, not sure, dr. wont order it. |
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You dont need no stink'in doctor to get 02, just buy a medical regulator with a CGA-540 connector off ebay and rent a tank of welding 02.
Its that easy!
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It is up to YOU to educate yourself and then help your doctor plan your treatment. If you just sit down in front of your doctor and say "make me better" you are setting yourself up for a great deal of pain.
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outofcommission
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Re: just say no to drugs?
« Reply #17 on: Mar 1st, 2008, 9:46pm » |
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yea i haven't been to a doctor in years. i got 02 without a script from a friend. and with help from guys like jonny and batch i know how to use the bigger tanks. i strongly recommend the o2. i used the melatonin after i used the cluster buster method. it helped me sleep. i've heard that you can sleep with the o2 generator at 2 to 6 lpm with one of those nose tubes. those breath rite strips you put on your nose help too.
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| « Last Edit: Mar 1st, 2008, 9:49pm by outofcommission » |
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AussieBrian
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Re: just say no to drugs?
« Reply #18 on: Mar 2nd, 2008, 9:24am » |
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[u][/u]on Feb 29th, 2008, 12:59am, outofcommission wrote:| it seems that all these expensive prescription drugs (imatrex come to mind) we are taking are taking care of the pain and not fixing the source of the problem... |
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Please, please, please tell me more about the source of the problem.
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LarryM
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Re: just say no to drugs?
« Reply #19 on: Mar 3rd, 2008, 2:16am » |
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Well that is the problem, sure stop the pain first and then look for a solution, but aren't we still worrying about the pain first and once the pain is gone so is the worry about the root cause and no one is more guilty about this than me. Went five years without a cycle and was sure I had outgrown CH. I believed the spew about they stop when you hit 50. Here I am, crawling humbly back. But in those five years, sorry folks but you weren't on the front burner. I can say I will never feel that way again.
My point is this, CH aren't caused by epilepsy so why are the GP's prescribing an epilepsy RX. If you are not a violent schizophrenic why are GP's prescribing an RX that even Physcs use only as a last resort to control violent schizophenics. If you don't have serious heart and circulation issues why are you taking verapamil - it was never developed to treat CH. If any of these RX were highly effective in treating CH then the drug companies would seek FDA approval for that usage, I haven't seen that yet. NIH's website recommends O2 as the first course of treatment - Our enlightened physicians of course don't bring in the mega income from O2 but then they can always shrug their shoulders and give you the Oh Well let's try the next magic pill. Imagine spending all that money on medical School and having to compete with Welding Supply Houses, who'se going to pay for my cruises and both my BMW's. Forgive me for being cynical but the British NHS just realeased a study this week saying that millions of people taking Prozac are no better off than if they had taken a Placebo. Problem is Prozac has serious withdrawl effects.
We haven't moved very far towards an understanding of CH when supposedly reputable Headache Clinics still list on the websites Gray eyes and Leonine features as a symptom of CH. Read the warning labels and do your research and if the results outweigh the side effects by all means take the relief and the sleep. hope for solid research.
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Annette
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Re: just say no to drugs?
« Reply #20 on: Mar 3rd, 2008, 7:27am » |
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You need to spend a bit more time reading and researching and you wont be saying at least some of what you are saying now.
Although no one knows as of now the exact mechanisms of CH but there have been some breakthroughs in the understanding of what are involved.
So far, 3 things stand out in the pathophysiology of CH
1- The hypothalamus : Prof Goadsby found some anatomical abnormality of the hypothalamus in CHers which are not present in the normal population. The full implication of this is under investigations.
2- Neurotransmitters: many neurotransmitters have been found to play a role in CH, especially the serotonin, dopamine, melatonin, nicotinic - muscarinic acetylcholine, histamine , etc . Associated with these are the various neurologic pathways that gets activated during a CH hit.
3- Vascular : massive vasodilatation occurs during a CH attack, this seems to be regulated via the calcium - magnesium channels.
Of course there are many others.
The medications prescribed for CH that you mentioned above such as antipsychotics and verapamil are used because they act on one or more of the above, and have been found to be effective for many people in the treatment of CH.
Pharmaceutical companies wont apply for patency specifically for CH unless 1- they can prove a more universal effectiveness and mechanisms of effects, which is very costly to obtain 2- they can be assured that the sale of the products will outweigh the cost of the patency.
CH is such a rare disease that there simply arent enough sufferers around the world, compared to other medical conditions, to warrant them jumping in that direction. A simple law of demand and supply.
I agree with you about the need for solid research on the cause of CH but due to the very nature of the condition, there pose many difficulties and obstacles to this path.
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jackieg
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Re: just say no to drugs?
« Reply #21 on: Mar 3rd, 2008, 10:54pm » |
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Last cycle, drug free, was the shortest in 12 years.
Went with 02 and ClusterBuster treatment. Turned a 17 week cycle into a 6 week one I could manage. I will never take another Imitrex, Neurontin, or Verapmil concoction again unless I am near death.
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MJ
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Re: just say no to drugs?
« Reply #22 on: Mar 4th, 2008, 1:27am » |
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on Mar 3rd, 2008, 7:27am, Annette wrote:
1- The hypothalamus : Prof Goadsby found some anatomical abnormality of the hypothalamus in CHers which are not present in the normal population. The full implication of this is under investigations. |
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I may be wrong annette but I dont think any anatomical abnormality was found.
They simply saw and recorded some neural activity in or near the hypothalamus if my memory serves right.
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MJ
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DennisM1045
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Re: just say no to drugs?
« Reply #23 on: Mar 4th, 2008, 12:42pm » |
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on Mar 4th, 2008, 1:27am, MJ wrote:
I may be wrong annette but I dont think any anatomical abnormality was found.
They simply saw and recorded some neural activity in or near the hypothalamus if my memory serves right. |
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Hey MJ,
Check out this article: http://news.bbc.co.uk/1/hi/health/380497.stm
Quote:Professor Goadsby said: "We also found that the area of the brain where these structural abnormalities were seen, the hypothalamus, is the same area of the brain where functional studies show that activity is abnormal during the headache state.
"This complete correlation of functional and structural abnormality is striking."
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-Dennis-
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thebbz
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Re: just say no to drugs?
« Reply #24 on: Mar 4th, 2008, 2:19pm » |
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Ya, we have more grey matter than other regular folks.
I need all the grey matter I can get.  If you dont mind it dont matter.
thebb
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