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gutternuts
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need a good reccomendation for preventative
« on: Dec 16th, 2003, 1:18pm » |
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hi guys...
i appreciate all the responses on the fioricet w/codeine topic, and by gosh u all seem to know what u'r talkin about.
The 'fog' i'm in, want to sleep all the time... not good. I'm on day two of 2-day vacation, then i need to be able to work again. I've lost too many days w/o pay, and need to support my wife n kids. (age 2 n 5)
The headaches comin hard still. 3 a day, most early morning, then 1 later in the afternoon/evening
the relpax does seem to work much better than the imitrex ever did, but the costs r outrageous. and i've been temp cut-off by insurance untill the doc ok's an overide.
i am "in process" of talkin to my insurance to get a good neuro near me. hopefully in a couple weeks, i'll get an appt. until then....
i think i need to steer my current doc in a direction.. so my ? is this... what do i ask him for ?
i am in good health cept these damn ch's, not allergic to anything...
verapamil ? or something else ?
the current meds the doc has me on are:
relpax:abortive 40mg
fioricet w/codene: preventative
Paxil CR: preventative
i've added on my own: natrol brand melatonin 3mg
open to your suggestions...
i feel so alone in this, my wife is trying to understand but just cant. the bills for doc's n meds are piling up. if i get another ct-scan its gonna max my only open CC out. and i'll be dead in the water after that. My 'new' insurance has a 2000.00 deductable and 50/50 on the meds (all i could afford for family).... i'm really stressin out on the job, the home front. I've recently buried my pop (sept), my brother in another state, just about od'd when the vicadin's he's addicted to, made him seek out coke to ease his pain for arthritis of the spine... somethin else i look forward to in the next few years.
i'm at wits end. i'm not a person to easily get depressed but this is all taking such a toll on me i cant begin to explain it. my last cycle ended about 1.5yrs ago so this is all kinda new to me, i didnt know these damn CH could come back! I quit drinkin and that ended my cycle so i chalked it all up to bein stupid w/alchohol now there back, and i find myself scramblin to figure out how to kill-em. the 'beast' seems to come-n-go as he pleases, usually the same times everyday, but occasionally sneaks one in when i not lookin.
i'm glad since my last cycle i leaned about the internet. For i am no longer alone... although at home, it still seems like it.. when i read the opening letters on this website... i had to have my wife come read them... it was me in black -n- white.
nuff ramblings... now, how bout a good reccomendation.?
thanks
'g'
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Paigelle
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Re: need a good reccomendation for preventative
« Reply #1 on: Dec 16th, 2003, 1:25pm » |
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You are having an awful time. I am so sorry! I am taking Inderal as preventative and it is doing crap. Talk to some others about Verap and Lithium. Both seem to do well.
By the way, I like the name Gutternuts!
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Cluster_head
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Re: need a good reccomendation for preventative
« Reply #2 on: Dec 16th, 2003, 1:31pm » |
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Gutter:
I think there are probably more than a few of us who've been in your shoes. I was recently at my wits end with the cycle from hell. I really feel for you.
Here's the best advice I can give: Dump all of the prescription meds and give the shrooms a try.
The shroom treatment did for me what no other preventive/abortive could. They stopped my cycle in its tracks. I've been pain free for about a month now. Still amazed by it.
Good luck battling the beast.
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Tim
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Karla
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Re: need a good reccomendation for preventative
« Reply #3 on: Dec 16th, 2003, 1:38pm » |
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I took 900mg of lithium a day and that did miricles for me for ch for a few years until the beast figured out what was going on and came back to haunt me. I had no side effects from the lithium either. Just had to have my blood tested every now and then to make sure I wasn't at a toxic level or anything. Drs know alot about lithium now adays and it isn't bad to take it is an older medicine.
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Karla
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5-string
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Re: need a good reccomendation for preventative
« Reply #4 on: Dec 16th, 2003, 7:05pm » |
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Hello there 'g' ,
Veramamil (240 twice a day) pulled me out of cycle. Like a moron I stopped altogether once I felt GREAT! Then the came back without warning. I went back on it and I've been attack free since about a week after huricane Izabelle. I have been getting shadows but no attacks. So there it is from my corner.
Good luck,I hope this helps..
...Mark..
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Prense
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Re: need a good reccomendation for preventative
« Reply #5 on: Dec 16th, 2003, 7:10pm » |
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I would ask for a start at 240mg/day verap...give that 2 weeks and bump it to 360 or even 480 if you have not had substantial relief from attacks. After 480, I would ask for lithium to be tossed in. Verapamil is generally tollerated very well. You might have some constipation...add a little fiber to your diet and all should be fine. Lithium comes with a fair amount of side effects, but as long as toxicity is avoided, it is handled well. I would get off the fioricet mainly because of the rebound potential.
I am not familiar with the Paxil...
If you are an episodic sufferer, then a pred taper started with the verap would probably yield more rapid relief...the attacks could possibly return after the taper if the verapamil is not working or not a high enough dose yet.
Regards!
Chris
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violet
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Re: need a good reccomendation for preventative
« Reply #6 on: Dec 16th, 2003, 8:00pm » |
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Verapamil 240 mg. SR two times a day and oxygen as needed. Plus figure out your triggers and stay away from them. ie. mine are msg, alcohol, cigarettes, caffiene, nutra sweet, smoked foods, red wine, pickled foods, aged cheeses, papaya.
Vi
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gutternuts
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Re: need a good reccomendation for preventative
« Reply #7 on: Dec 16th, 2003, 8:10pm » |
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thanx for the advice, here's what the crack, i mean doc, fired me up with.
Verapamil ER 120mg - 1 a day
Vioxx 25mg - 1 a day
advised me to stay on the happy pills (paxil cr) but to change and take them in the morning instead of night.
stil fighting for relpax, insurance stops at 18pills per mnth, then they require a doc to call, so he did. still wont go thru, doc's offc said they was approved. Insurance sais "just sais here that doc called and all was resolved"
resolved how? nobody knows... hopefully, i only get 1 CH cause after that, i'm in for it... gonna try again tomorrow.
wish me luck....
cluster_head... i gonna ask my boss if she has any contacts for that mushroom, i seem to remember her saying that her hubby had thrown out her stash of shrooms when he found them in the closet... so maybe she "knows some1". i dunno which shroom she had, but i think it couldnt hurt to ask her.
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kim
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Re: need a good reccomendation for preventative
« Reply #8 on: Dec 16th, 2003, 8:15pm » |
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hey gutternuts,
there is so much information here that can help you and yur doc get a direction on preventatives. There's tons of info. If I was you i'd visit the buttons on the left, spend any pain free time ya git, and research this site, print out tons of info and bring it with ya to the doc. You and the doc can then make a plan of action. There's also a list of neuors in those buttons to the left. Ya gotta begin at the beginning.
Best of luck, and well wishes****
Kim
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jimmyjamster
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Re: need a good reccomendation for preventative
« Reply #9 on: Dec 16th, 2003, 11:20pm » |
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Total empathy is what you get here. From myself - yes absolutely!! From others always...I too (my family included) was alone until last week when I discovered this site (one night whilst in pain). Today (a week later) I am pain free. See my message earlier today listed as 'Deseril....methysergide maleate...worked!'.
Sorry I'm in Australia so make sure you read the replies...meds have a different name over there. I'm on 2mg a day...it's working. Side effects- you bet- cramps in the legs and groin area -smoking doesn't mix with this drug. But hey, 2 weeks max on the stuff and I'm out of my cycle. It's a bloody sight cheaper than Imagrin (@ $20 a headache - I was going broke). This stuff was $25 for 50 tablets (taken 2 a day as a preventative).
I'm a casual Secondary school teacher, so if I don't work I don't get paid. Christmas holidays here means 6 weeks no work!! The doctors bills and Imagrin had cost me $250 in 5 days...we can't afford that. My partner and kids are supportive but even with their best intentions they become frazzle after a week or so of me in tears and out of action.
THe watering eye is the only external indication to anybody that you are in pain. People look at you strangely...'yeah I get bad headaches too'...you think crap mate this ain't a f*%kin headache- it's a monster!!
My partner descibed it best...looks like your having labour pains 3 to 4 times a day for 4 to 6 weeks without the reward...a baby at the end of it!!!
Take care...check out the meds mentioned in my relpy..it shrinks the blood vessels thus nullifying the pressure...just might work for you too!!! Good luck, best wishes and know there are those of us in this world who know what you are experiencing...YOU ARE NOT ALONE. Jimmyjam 
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TxBasslady
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Re: need a good reccomendation for preventative
« Reply #10 on: Dec 17th, 2003, 12:28am » |
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Hi g......
You should read a couple of the threads here about the shrooms. May not be the same ones your boss has. But evidently, the ones here must be pretty good.
I was on a Prednisone taper.........been pf for 98 days now. However, for some, after the taper, their ha's return. So far, so good for me though. The prednisone is cheap. It's not good to stay on it too long. But you might check with your doc.
Lotz of pf vibes to ya
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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Cluster_head
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Re: need a good reccomendation for preventative
« Reply #11 on: Dec 17th, 2003, 12:56pm » |
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on Dec 16th, 2003, 8:10pm, gutternuts wrote:| cluster_head... i gonna ask my boss if she has any contacts for that mushroom |
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Too many people have been helped with this therapy to ignore its potential.
Good luck finding what you're looking for.
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Tim
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mmaya613
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Re: need a good reccomendation for preventative
« Reply #12 on: Dec 17th, 2003, 9:06pm » |
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GN,
This is what your going to do. Are you listening! Good!
Your going to your Primary and tell him you want a 6 day Prednisone Taper. They are 4mg pills. The box they come in will have specific instructions on how to take them. For example:
1st Day: 2 Pills before breakfast, 1 pill after lunch and dinner, and 2 Pills before Bed.
2nd Day: 2 Pills before breakfast, 1 pill after lunch and dinner, and 1 pills before Bed before Bed.
It decrease 1 pill/day untill on the sixth day you take 1 pill and your finished.
Tell him you want verapamill 120 mg/day. 60 mg in the morning and 60mg at night.
Tell him you want Depakote. Take 500mg/day
Stay on the verapamill, increase it if you have to.And, Stay on the depakote.
I did this and went 5 years pf. I was just like you. I lost 3 jobs back to back. I had a cat scan( Paid out of pocket for it). Dude, they will always come back normal.
You tell the doctor what you want, because your the one climbing the walls in pain, not him.
Now, my disclaimer, I am not a doctor. I am just a clusterhead like you who has had success in treatment.
If you are already taking the meds you descibed in your message. I don't think you should have a problem getting prescribed these other meds that have worked for me and thousands of others. The prednisome is cheap. the verapamil is cheap, maybe the depakote is mid-range. I think it's worth a shot. Write the names down and go see your doctor.
Good Luck.
Hang in there. You're not alone. I'll pray for you. 
Mario
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t_h_b
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Re: need a good reccomendation for preventative
« Reply #13 on: Dec 17th, 2003, 11:43pm » |
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Melatonin 0.5 mg at bedtime, may increase in 0.5mg increments if it doesn't work. If the 3mg doesn't work try a smaller dose, maybe a larger dose. Very cheap.
Verapamil 240 mg sr twice a day, 480mg a day to start, your MD can increase to 960mg or more a day. Fairly cheap. If you don't have insurance, you can get Verapamil 240mg controlled release at drugstore.com, about $25 for 90 tablets.
Magnesium oxide 400mg to 800mg a day, may help with headaches, will keep you from getting constipated from Verapamil. Very cheap.
The Fioricet is probably an abortive not a preventative? Probably doesn't really help much? You could chew the Fioricet (probably tastes bad) to help it absorb faster. Otherwise it might not start working well until your headache is over or almost over.
Caffeine might help (coffee) during a CH. Ice packs/hot showers.
Snorting 5 or 10% Lidocaine ointment might help, too. About $20 a tube.
Oxygen is great if you can get it. My insurance company doesn't make you pay for it at all even though some meds have a $35 copay. You might be able to use welder's oxygen if you have to pay for it yourself.
Definitely don't drink alcohol and keep away from any other triggers that you can identify.
From the many advocates here, the 'shrooms seem to be worth a try if you can get or grow them.
Also try to get some help for the depression, short term pills/and or therapy for help coping with the immediate issues you are facing.. You might be able to see a shrink cheap or for free, call your local health department. Call a helpline that has trained volunteers. Don't ignore this serious problem; if you're depressed you don't seek treatment for the depression because you're depressed. Stress can exacerbate the CH. The CH can exacerbate the stress. Vicious cycles. I'll bet a lot of us have been depressed at one time or another; sometimes it seems like you are just living from one CH to the next.
It does help to know you're not the only one with CH. Coming to this board has helped me during difficult times. There are others who understand without you having to explain it.
Good luck.
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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gutternuts
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Re: need a good reccomendation for preventative
« Reply #14 on: Dec 18th, 2003, 7:47pm » |
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well, i must say this...
Thank you all for the support.
so far so good, yesterday was a bear i didnt make it into work for 3 days in a row (5 including the weekend). Took every ounce of energy i had to get out of bed today. (depression setting in?) i made it to work (18 mile drive) had a few bouts with nausea, but made it through the day. Started @ 30%, ended work at about 80%
Had a small CH kip-5 2:00 as usual... but no where near as painfull as they been. actually had a peacfull nite, restless but no demons, just lots of shadows.
maybe i nearing the end of a cycle? or maybe i'm on better medications... i dunno... I have a backup plan. Got my hands on some "schrooms" dried, but potent from what i was told.
this is my backup plan should i start getting hit again...
lets hope i dont need them, but it's nice knowing they r there.
'g'
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jflynn
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Re: need a good reccomendation for preventative
« Reply #15 on: Dec 19th, 2003, 5:17pm » |
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With these headaches you must experiment until you find what works for you. Prednisone tapers don't do squate for me but melatonin works great. Other people have the opposite experience, and others yet have difefrent experiences.
My sugegstion is to start out with the simple and cheap stuff such as melatonin and progress from there until you find the cure that works for you.
Unfortunately I had sinus surgery a few years ago with no results and only recently learned about melatonin. Start small and go up from there.
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