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        New Message Board Archives >> Medications, Treatments, Therapies 2002 >> saw doctor and on new meds
        
(Message started by: ltltnt on Jul 25^th, 2002, 8:36am)

Title: saw doctor and on new meds
Post by ltltnt on Jul 25^th, 2002, 8:36am

Well got back from Dr in NM and took the advice to go on regular verapamil it seems to be helping but I must add that for the chronic cycle they also put me in 5mg of methadone it has helped greatly with the CH in two weeks I have had only three HA two at a KIP 5 the other a KIP 8 but that was during a bad storm. The down side to the methadone is I feel stoned all the time and it makes me very sleepy if this does not work for more than a couple of months Dr said we will try Botox if that does not work I will try the alternative treatment everyone keeps talking about. :-/

Title: Re: saw doctor and on new meds
Post by rick on Jul 25^th, 2002, 1:52pm

'tnt,

Let us know if you need any advice, stay strong.

Good luck,

-Rick

Title: Re: saw doctor and on new meds
Post by BobG on Jul 25^th, 2002, 2:15pm

Many sufferers on verapamil also use lithium.

methadone? OK but it sounds a little weird.

Title: Re: saw doctor and on new meds
Post by gtarman on Jul 25^th, 2002, 3:30pm

ItItnt-
I too am on Verapamil (see my new thread) but am in fungus production, having tried everything else.
How did you get your Dr to prescribe methadone? I can't get mine to write a scrip for anything stronger than hydrocodone (bleahh!). I thought they only made methadone and oxycontin so junkies would have a reason to break into drugstores...
I've thought about having the wife drop me off at my Dr's house during my next KIP/8 or 10 so I can dance on his porch!

Title: Re: saw doctor and on new meds
Post by rick on Jul 25^th, 2002, 11:53pm

tnt,

I spoke with PinkFloyd (Bob W) earlier this week, and he had mentioned being put on methadone at one point. From what he told me, it was an unpleasant and ineffective experience. You might want to send him an instant message for more info.

-R

Title: Re: saw doctor and on new meds
Post by Pinkfloyd on Jul 26^th, 2002, 1:10am

on 07/25/02 at 23:53:45, rick wrote:

tnt,

I spoke with PinkFloyd (Bob W) earlier this week, and he had mentioned being put on methadone at one point. From what he told me, it was an unpleasant and ineffective experience.
-R

How bout I post a response? :)
Yes, I was put on methadone during my last cycle. I went to a pain specialist and had him prescribe some pain meds that my regular doc wouldn't. He put me on methadone (20mgs a day if I remember) with vicodin as a breakthrough med. It didn't help much but this was a very bad cycle. I was experiencing attacks every two hours, 24 hours a day. No sleep at all, other than when I would finally pass out for an hour, for weeks. I was also on Topamax, O2, DHE injections and several other things. At one point I started to hallucinate. It may have been more from the sleep depravation and the loss of 30 pounds in a month, than the methadone, but it was quite a combination.

BobW

Title: Why methadone?
Post by ltltnt on Jul 26^th, 2002, 9:22am

The obvioious reasons for the use of lithium and verapamil are these are the only medications that work somewhat without side effects making it necessary for me to take ten other medications to counter side effects. I think the reason the doctor put me on methadone is that O2 does not work most of the time, and stadol is not the best choice of drugs. We tried 20mg of morphine but after 2 and 1/2 months I had already built an immunity. Methadone is often used to break pain cycles although most people associate it with weaning off heroine. As I said earlier it has now been two weeks with only 3 CH and only one was a true pacer, I don't like the high feeling but they say that goes away after a couple of months. I go back to NM in mid September for a review. IN the interim I will take what painfree days I can....And I wish you all the same. :D

Title: One more thought
Post by ltltnt on Jul 26^th, 2002, 9:30am

??? As most of us are aware there really are no medications for our condition, we just "borrow" medications used for other disorders such as high blood
pressure, manic depression and seizure disorders to name a few. The way I look at since not enough research is being done for CH we play guinea pigs using whatever meds that our respective doctors prescribe. We may often question their decision but as I said earlier there are no CH specific meds. This is very :-[ that we have to use anything to try to get relief from the beast and I have a saying about Dr.s practicing medicine on all patients because it is not an exact science. What works for some does not work for others.

Title: Re: saw doctor and on new meds
Post by Svenn on Jul 26^th, 2002, 1:36pm

This is my godgiven cure for cluster

Verapamil Retard 120mgX5-7/daily during cycle
Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree
Prednisolone in high doze for 10 days 80mg
then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily

This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway

I do not think that Methadone is the right medication for us my friends.
Dangerous drug if you ask me

Take care my friend

Your friend in Norway

Svenn

Title: Re: One more thought
Post by rick on Jul 26^th, 2002, 1:43pm

on 07/26/02 at 09:30:34, ltltnt wrote:

This is all why I pray to God that the mushroom therapy continues to work for me. I dread having to go back to the meds, and I honestly don't know if I could after how sick they made me. Particularly since nothing really worked, and from everyone's stories, the beast always seems to find away around them eventually when they do.

Peace,

-Rick

Title: In reply to imitrex and O2
Post by ltltnt on Jul 26^th, 2002, 2:41pm

O2 only works some of the time for me and while I have in the past used many of the triptan drugs, I no longer am able to. At age 11 I had an open head injury and lost quite a bit of brain fluid. Sometimes I suffer with a condition called hemiparesis (which basically means the left side of my body but mostly my leg either has no feeling or that of pins and needles). When I take the imitrex, amerge or any other triptan I am guaranteed at least a 12 hour attack of paralysis. I am glad however that you found that this works for you Svenn. Thank you for your reply.
Sheryl

Title: Re: saw doctor and on new meds
Post by Pinkfloyd on Jul 26^th, 2002, 11:28pm

on 07/26/02 at 13:36:37, Svenn wrote:

Svenn,
Being half Norwegian, maybe we are related?
Let me say this...
IMHO, the high dose prednisone you're taking is much more destructive to your body than methadone. Please be careful of the damage it will do to your bones, among other things.
Also, if you get 5 or 6 attacks a day, 1 Imitrex shot don't quite cut it.
I'm glad this is helping your clusters as I know the lengths we are willing to go, but if narcotics help treat the pain during a cycle consisting of multiple attacks each day, it is one of the safest ways to do so.

BobW

Title: Re: saw doctor and on new meds
Post by nancyc on Jul 28^th, 2002, 11:30am

Good luck with your new meds...I have a friend in Geogia who is on methadone for chronic headache pain...she said her Doc says it is used alot for neurological pain..she has chronic daily headaches and chs....keep us posted on how it does for you OK? smiles,nancyc