Author |
Topic: Meds or no meds (Read 470 times) |
|
Plakatboy
New Board Newbie
Gender: 
Posts: 3
|
 |
Meds or no meds
« on: Sep 19th, 2005, 10:54pm » |
 Quote  Modify
|
Hi ,
need advice here.
Saw a neuro yesterday. He suggested to start a 8wks course on Verapamil as preventive and continue O2 as abortive.
Told him that i took Kudzu for the 1st week and although i have since stopped. The pattern of the cycle has changed and become unpredictable. Also i'm not keen on anything thats 'not natural'.
He commented that although he's not sure. Treatment with medication (preventive and abortive) is better than letting the cycle lapse on its own as there's a lesser chance that it'll become worse or even turn chronic. 
Any comments?
|
|
 IP Logged |
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: Meds or no meds
« Reply #1 on: Sep 20th, 2005, 6:48am » |
Quote Modify
|
It comes down to how much you can take and how educated you and your doctor are.
It's your body!!!
There is a lot of speculation that contradicts what your doc said.
Some feel that taking meds which may decrease the intensity and frequency of attacks (preventative) may also extend. This goes for some of the abortives too.
I honestly do not have an opinion on this as this is my first cycle using meds.
I went a decade mis/undiagnosed without treatment having 2 cluster cycles per year never longer than 4 weeks. I got diagnosed last June (04) was put on meds and my cycle never broke. Some 18 months since it began and I honestly couldn't tell you if meds extended it or if it would have happened anyway.
Either way I try to have a strong, positive attitute even when days are long and nights are longer.
Be well!!
Eric
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
giffy76
New Board Hall of Famer
Give me Imitrex or give me death.
Gender:
Posts: 724
|
|
Re: Meds or no meds
« Reply #2 on: Sep 20th, 2005, 10:03am » |
Quote Modify
|
In my last cycle, my meds decreased the number of hits and the pain level. I'm pretty sure they also increased the length of my cycle though. When I began to de-tox from my meds to begin a different treatment, my cycle stopped. Personally, I couldn't go through a cycle without meds. Maybe I'm jus a sissy 
|
|
IP Logged |
|
|
|
floridian
Guest
|
The best argument for preventives is that in addition to reducing pain, they may also reduce some of the other negative things like high blood pressure and irregular heart beat that go along with a cluster cycle.
I don't know of any research that suggests that abortives reduce the chance of going chronic - if anything, triptans may increase that risk somewhat (not sure if extending a cycle and increasing the frequency of headaches is a risk factor for going chronic, it might be).
|
|
IP Logged |
|
|
|
yikes-another-one
New Board Old Timer
Gender: 
Posts: 384
|
|
Re: Meds or no meds
« Reply #4 on: Sep 20th, 2005, 12:32pm » |
Quote Modify
|
Cost is more a factor to me.
When I had insurance, i also took Zomig....
since it worked 80% of the time
I liked it. Then i lost insurance and
cannot afford to take anything else.
Meditation and pacing....
that can get you through....
but it ain't pretty.
It's your decision, but if you have access and
oxygen is working...keep on that...
if it isn't working, find something that does.
There is a lot of hope out there...
so don't give up. don't settle or suffer!!!!
TJ
|
|
IP Logged |
Psalm 23 - Goodness and mercy shall follow US all the days of our lives and WE will dwell in the house of LOVE forever.
|
|
|
jon019
Guest
|
QUOTE
I went a decade mis/undiagnosed without treatment having 2 cluster cycles per year never longer than 4 weeks. I got diagnosed last June (04) was put on meds and my cycle never broke. Some 18 months since it began and I honestly couldn't tell you if meds extended it or if it would have happened anyway.
Either way I try to have a strong, positive attitute even when days are long and nights are longer.
Be well!!
Eric
UNQUOTE
Hello,
My history folks. Tried to discern a pattern but it just aint there!
Two years undiagnosed. pattern 6-8 weeks on, 6-8 off.
Tried these meds for next 14 years: inderal, periactin, tenormin, methysergide, ergostat, cafergot, prednisone, amyltriptyline, verapamil. Most didn't work, verap was the best, then stopped working. Throughout, basic cycle pattern stayed same.
O 2 comes and goes as effective.
Got fed up with all these meds and side effects and gave them up for next 6-7 years. Been riding it out with the O2 since then UNTIL last year when cycle changed
and it became damn near chronic, I got desperate and went to a neuro. Now back on verapamil (she says they should have upped the dose, was on 240mg then, 480 now), and topamax with a zomig chaser (havent tried that yet). Is aggressive, but like i said, am desperate.
We shall see. Hoping there is something here that might be of help to someone.
Regards
Jon019
|
|
IP Logged |
|
|
|
Plakatboy
New Board Newbie
Gender:
Posts: 3
|
|
Re: Meds or no meds
« Reply #6 on: Sep 20th, 2005, 10:53pm » |
Quote Modify
|
Got a 'weird' theory on this. some of the old timers (>60 yrs old) in this board are still episodic, they probably didn't have much access to modern meds previously....'natural remedies' might probably be a safer choice with limited usage of modern drugs (for the shortest period possible)
Again, don't have much data / survey to back this up.
|
|
IP Logged |
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: Meds or no meds
« Reply #7 on: Sep 21st, 2005, 1:58am » |
Quote Modify
|
My chronic ch went into remission after I had verpamil 600mg as my med. Before that I had tried lots of abortives and preventatives.
I love to live without any meds whatsoever, but it was meds, which helped me get here. And if ch comes back... then I'd love to treat it without meds, but we'll see (touch wood).
I don't think that meds turned my episodic ch into chronic... just one episodic cycle went on and on and on and I had to admit the truth that I was chronic.
But I agree: it's your body. Docs cannot know what the pain is like, what the side effects feel, etc. They make suggestions based on what they know and then you decide yourself.
Whatever is your method, it's up to you. Personally, I think that it doesn't really matter how the PF time is achieved. Being PF is what matters & I hope that you're PF soon!
Best wishes & PFdays,
Sanna
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
joey_the_grip
New Board Newbie
I love YaBB 1G - SP1!
Posts: 13
|
|
Re: Meds or no meds
« Reply #8 on: Oct 2nd, 2005, 12:48pm » |
Quote Modify
|
I lost my health insurance 5 years ago. I simply can't afford to see a doctor anymore let alone buy prescription drugs. During the time my headaches were being professionally managed I tried many of the drugs others use with mixed results. Nothing worked every time, either to abort a headache or prophylactically. Many of the drugs can have dangerous side affects or interactions which I was not fully informed of by the "professionals". My experiences with Western medicine have been far less than satisfactory. I now treat myself. NSAID(non steroidal anti-inflammatory drugs) are my first line of defence. Acetominophen seems best especially when taken with caffeine as in excedrin-migraine. I believe it is the anti-inflamation effect not the pain killer I am benefitting from as I still feel pain, it just doesn't hit a crescendo like before. After that I use many behavioral changes like deep breathing(I no longer have the O2 tanks) the water cure, limiting exposure to potential triggers, and I drink a lot of cola(the sugar/caffeine content makes me feel good). I DO NOT EVER take an antihistamine during an attack for any reason. Idid once and I really thought I was going to die it was so bad.
|
|
IP Logged |
|
|
|
ClusterChuck
CH.com Alumnus
New Board Hall of Famer
The BEAST rises again, and again, and again, and .
Gender:
Posts: 3181
|
|
Re: Meds or no meds
« Reply #9 on: Oct 2nd, 2005, 1:02pm » |
Quote Modify
|
Going drug free has chances of making you chronic? What sort of horse dodoo is that? That is one of the more ridiculous statements I have heard. Not the most, though, but right up there.
I am chronic and a lot of us are, and I don't think ANYONE has been able to pinpoint a cause, other than the beast is just cantakerous.
YOU decide if you want to go drug free or not. It is YOUR choice. I wish you luck with whatever you decide.
Right now, I am only using oxygen as an abortive. No preventatives or any other type of drug. But I would LOVE to find one that works, because I am a wimp, and can't do without, when I have one that works.
Chuck
|
|
IP Logged |
"No man can be happy without a friend, nor be sure of his friend till he is unhappy."
Thomas Fuller
|
|
|
Ueli
Guest
|
I'm taking 600 mg/day of Verapamil, and I'm going to do so for the next 32 years if necessary. I just won't ever take a full blasted cluster attack again.
Ueli 
|
|
IP Logged |
|
|
|
stevema
New Board Newbie
I love YaBB 1G - SP1!
Posts: 25
|
|
Re: Meds or no meds
« Reply #11 on: Oct 2nd, 2005, 2:40pm » |
Quote Modify
|
Try running, climbing stairs, any kind of exercise that makes you breathe hard. Do the exercise until you are really sweating. Keep going even when you want to stop. This has worked for me, I am episodic once yearly or every two years. Used to take painkillers and imitrex, which worked most of the time but made me feel like I was gonna have a heart attack and got some rebounds too. Oxygen works for me but I do not have access to a mask or tank here, so running is the next best thing, it is free and provides relief within 10 minutes. Some days/nights I have to go out and hit the pavement 2 or 3 or 4 times. It is worth it, once I am breathing hard, the HA goes away.
|
|
IP Logged |
|
|
|
BMoneeTheMoneeMan
CH.com Alumnus
New Board Hall of Famer
In remembrance of KingCazman. RIP
Posts: 2082
|
|
Re: Meds or no meds
« Reply #12 on: Oct 9th, 2005, 3:22am » |
Quote Modify
|
I dont know anything about becoming chronic, but i would say it is important to take a med that will break the cycle. If you do start with any of the preventative or cycle busting drugs as soon as you are starting a cycle, it can prevent the cycle from being a real bitch. This past cycle that i went through was managed pretty well, and i think the alternative treatment i did (twice) reduced the severity of my cycle. I only got hit 4 to 7 times per night with just kip6s or kip7s.
Compared to getting blasted with kip9s on a nightly basis, I'll chock my last cycle up as a W.
I think that if you do not take any treatment at all, it will let the cycle take firm hold and get severe. Preventative maintenance is always best. Just like with a car, if you hear a rattle, get it fixed right away. If you dont, it could lead to much more costly repairs.
Thats just my 
BMonee
|
|
IP Logged |
"Fool me once, shame on, shame on you. Fool - can't get fooled again"
Think of how stupid the average person is, and then realize half the population is stupider than that.
|
|
|
seasonalboomer
CH.com Alumnus
New Board Hall of Famer
If I think hard enough maybe it'll go away.....
Gender:
Posts: 2248
|
|
Re: Meds or no meds
« Reply #13 on: Oct 10th, 2005, 7:39am » |
Quote Modify
|
in the end it will and must be your own decision. there are os many more options than there were years ago, and as a result of this website, so much more information from sufferers that kind guide you through options that fit with your values and the value you place on being pain free.
i came here "anti-med". i tried kudzu and have had a grat experience for two cycles. i also got to try injectable imitrex when my GP said, "at least fill the prescription" and felt the miracle that that is. i've got my O2 rig now. would i rather make it without meds, sure. but damn, if they can pull you out of the despair of a really bad cycle, I'm now of the opinion that it's at least worth a go, as much as the laternative treatments are. you just have to weigh all the options and choose.
if you have access and can afford it, riding out a cycle (like I used to do), unless you have no other options, is now being an unnecessary cluster-martyr.
scott
|
|
IP Logged |
-----------------------------------------------------
seasonal boomer
-----------------------------------------------------
|
|
|
Jonny
CH.com Alumnus
New Board Hall of Famer
Give me a shovel Ill dig my own grave!
Gender:
Posts: 26213
|
|
Re: Meds or no meds
« Reply #14 on: Oct 10th, 2005, 7:45am » |
Quote Modify
|
on Sep 21st, 2005, 1:58am, sandie99 wrote:| but we'll see (touch wood). |
|
Sandie!!....get your hand out of my pants.....LOL 
|
|
IP Logged |
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.
- Guiseppi
|
|
|
don
Guest
|
Why anyone would choose to ride out horrific daily pain med free when proven effective meds are available is beyond me.
I'm no hero. Give me the trex, verap and pred and I'll meet you at Burger King.
|
|
IP Logged |
|
|
|
jon019
Guest
|
Posted by: don Posted on: Today at 9:38am
Why anyone would choose to ride out horrific daily pain med free when proven effective meds are available is beyond me.
I'm no hero. Give me the trex, verap and pred and I'll meet you at Burger King.
Hi Don,
Two of the above worked for me for a while then no more (haven't tried the trex). Have tried a dozen meds including currently Topamax which has proven to be a double edged sword. "Proven and effective" is in the eye of the beholder. What works for some doesn't for others and there are now over 9000 here, many of whom still looking for answers.
When I made the decison 7 years ago to forgo meds (does not include O2) it was not a decison made lightly.
I found the "traditional" treatments to be as life affecting as the CH, what with the side effects and the unknown future consequences. I rode it out with the O2 until the pendulum swung back and the CH became MORE life affecting once again (a ruined wonderful vacation being the last straw in a nightmare series).
Trying the traditional now, investigating the "alternatives" as discussed here.
Still riding the swing. Hope some day to get off.
Regards
Jon019
PS regret I haven't said this better, morning is my "foggy brain" time due to meds. Tried a couple rewrites and its just not there. Hope there is a little bit of a point.
|
|
IP Logged |
|
|
|
rextangle
Guest
|
I'm chronic and have been med free for a year now due to bad reaction to some of the meds and no effects on my CH whatsoever. I did the clusterbuster treatment which did wonders for me as far as reducing the intensity and frequency of the attacks.
Right now, only 02 only, won't go back to meds.
But again, it's a matter of choice.
Good luck to you and PFDAN,
Rex
|
|
IP Logged |
|
|
|
unsolved1
Guest
|
I could do without prevents, but i'll never give up the Trex. It has saved me. Without it, I'd bite a bullet !!
Goodluck
UNsolved
|
|
IP Logged |
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
Remove
test rss