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Topic: Time To Resort To New Rescue Plan (Read 517 times) |
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Renee
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Time To Resort To New Rescue Plan
« on: Sep 19th, 2004, 10:22pm » |
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My new rescue plan is Reglan and Actiq (fentanyl lollipop). After 3 days of getting hit every few hours and the triptan is NOT getting rid of them, I'm ready to try this new rescue plan.
Has anyone else used the same?
How long after Reglan until I take the Actiq (200mg)?
How long until I get some pain relief? Will I get any relief? Will I make me feel drugged, etc?
Any input is appreciated as I'm getting desperate for some relief tonight!
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Lizzie2
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Re: Time To Resort To New Rescue Plan
« Reply #1 on: Sep 19th, 2004, 10:32pm » |
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What form is the reglan? Is it a pill to take? I can let you know about how long it will take to work if I know what form it is given in.
I don't know if an oral form of reglan would have less side effects, but it tends to make me very very jittery because it blocks the reuptake of dopamine. I also take a med which promotes dopamine uptake for another medical problem, so Reglan is a rough one for me!
As far as the Actiq, I've never tried it but I would guess it will probably give you that narcotic drugged feeling at least to an extent.
I'm assuming that you are taking the Reglan to prevent nausea from the Actiq?
Lizzie
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #2 on: Sep 19th, 2004, 10:40pm » |
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L2,
The Reglan is a pill and I've never used Reglan. I used to use phenergan for nausea but it knocked me loopy for hours and hours.
Yes, I am to take the Reglan to prevent the nausea from the Actiq.
Does this help?
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #3 on: Sep 19th, 2004, 10:41pm » |
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also....i'm on an empty stomach now. would you eat something or start from empty?
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Lizzie2
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Re: Time To Resort To New Rescue Plan
« Reply #4 on: Sep 19th, 2004, 11:05pm » |
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give me a sec...gonna go look it up 
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Lizzie2
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Re: Time To Resort To New Rescue Plan
« Reply #5 on: Sep 19th, 2004, 11:08pm » |
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OK reglan takes about 30-60 minutes to work if taken in pill form. It usually is a good one to prevent nausea and vomiting. Also used for a few other things. It is even used as a headache treatment off-label.
The Actig should take about 5-15 minutes to kick in. It reaches peak ability at about 20-30 minutes and lasts 1-2 hours. Major side effects are the typical ones of other narcotics. Some itching, nausea, sweating, dizziness, drowsiness...stuff like that!
I hope it helps, though!
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #6 on: Sep 19th, 2004, 11:08pm » |
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ok...thanks
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #7 on: Sep 19th, 2004, 11:11pm » |
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L2,
When I replied ok, thanks that was to your post stating you were headed to look it up. Then your other post showed up.
Thank you SO much and wish me luck! I gotta have a break and I can't have more triptan until 0600.
thanks again
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Mark C
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Re: Time To Resort To New Rescue Plan
« Reply #8 on: Sep 19th, 2004, 11:15pm » |
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PF Vibes to you Renee!
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #9 on: Sep 20th, 2004, 8:06am » |
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Thank you Mark!
I sure need 'em. Going on day 4 with no real break.
Last night's hit let up so I did not use the Actiq but it is going to the office with me today as I'm still getting hit.
I'm gonna switch from Relpax to Frova today. Does anyone have experience to share with Frova? (trex does not help at this time...it quit working too)
wishing a better day for all,
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #10 on: Sep 20th, 2004, 6:00pm » |
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I used the Reglan and Actiq today. It stopped the ch and my eye actually opened up for a few hours and the nostril cleared up as well.
I was even able to work with very few side effects, very few side effects, very few...where was I, what was I saying? 
Having heavy shadows again now so....onward thru the fight. 
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Jimmy_B.
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Re: Time To Resort To New Rescue Plan
« Reply #11 on: Sep 21st, 2004, 8:43am » |
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Not too sure of the Reglan...& just book smart on the Actiq (never used it) but I'm sure you found out that the Fentanyl will actually give you an "up" feeling followed by a slight crash & burn (drowsy).
You can use as much as needed with the actiq. Suck on it until pain relief. Fentanyl doesn't pass the Blood Brain barrier too well, when taken orally. But, you don't need much.
Let us know how it works out. May switch my oxyIR's for Lolli-pops if it works for you
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #12 on: Sep 21st, 2004, 2:32pm » |
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Jimmy_B,
The drowsiness subsided about 630 pm and I was left with nothing but some shadows. Have not had another cluster...yet.
I never felt a "high" but I was hurting so bad that I may have missed it. I did, however, feel the lil' bit of drowsiness but not enough to keep me from driving home from work.
I will keep ya posted of any future usage and how it goes,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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unsolved1
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Re: Time To Resort To New Rescue Plan
« Reply #13 on: Sep 22nd, 2004, 9:34pm » |
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The Actiq lollipops didn't touch my CH. It was useless
Unsolved
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21yrs
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Re: Time To Resort To New Rescue Plan
« Reply #14 on: Sep 22nd, 2004, 10:00pm » |
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went to doctor on fri 9-17. i was hoping to
get my imitrex refilled. he asked me how many
shots i did from the last visit which was 8 days
before. i told him 10 he frieked said he wanted
me off, no more. now there might be other
factors, but he put me on 1 VIOXX a day and
a 60mg taper of prednisone and i havent
heard from the beast since. i quit smoking
that fri morning, i also am doing 3mg of
melatonin before bed, i first sit up and
fall asleep, wake up about 45 min then lay
down in bed. i think i was on the outs of
my episode but i was still getting ch every
day prior (rebound?) fri i got one at 1am
and another fri 6:30 am started the meds
fri around 5pm and pf since.
give it a try see if this may work for you
kevin
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #15 on: Sep 23rd, 2004, 6:43pm » |
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Kevin,
I have tried Vioxx and melatonin with no success. Pred will stop a ch but I am chronic so...can't live on prednisone.
I'm glad you are getting some relief,
Renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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Karla
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Re: Time To Resort To New Rescue Plan
« Reply #16 on: Sep 23rd, 2004, 10:20pm » |
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I took fentanoyl in the form of the duragesic patch. You may want to ask your dr to try that. There are a few of us here on the board who have had success at different levels from 50 to 100mcg. I hope they work for you. If not try the patch!
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Karla
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #17 on: Sep 23rd, 2004, 10:40pm » |
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Karla,
Thanks for the input.
I am having a REAL rough time right now and have been since July. I've upped the prevent, changed abortives, got the actiq for home rescue, trying o2 again as it will be here tomorrow but I can't seem to break this BAD cycle of clusters within my chronic life.
With most neuros, at least both of mine, in London this week for seminar/convention, it has been doubly rough. I will inquire into the patch if this continues much longer. Will the patch stop the clusters or just turn down the volume on them? I have to be able to function mentally right now and not be altered by a constant narcotic feel as well. How does the patch work, pain control, side effects, etc?
thanks
renee
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Jimmy_B.
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Re: Time To Resort To New Rescue Plan
« Reply #18 on: Sep 24th, 2004, 8:00am » |
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Renee..
The patch works great...I was using it at 25mcg (lowest dose) & it completely kept a lot of the clusters away & did not give me a "buzzed feeling" Of course...it didn't stop all of the Clusters...but definitely tuned them down.
Word of warning....when it was time to stop, I took off the last patch and about a day later, I began to feel very sick, i.e. nauseated, vomiting. I called the doc & he told me that it probably was withdrawal symptoms...so since the patch didn't come any lower, he gave me a few more patches which I wore the 1st for 3 days, 2nd for 4 days & 3rd. for 5 days. He also gave me some percocets after that was done & weaned with them. Since he did that...I felt fine & was completely off the narcotic in 2 weeks.
Jimmy
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Karla
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Re: Time To Resort To New Rescue Plan
« Reply #19 on: Sep 24th, 2004, 9:07pm » |
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I was on 50mcg and I think Terry(Gore2424) is on 100mcg. I am not sure what dose a couple others are on. It stopped mine completely. I had NO ch for the year I took the patch. No breakthrough pain Nothing! It gave me my life back and took away the pain. I was on methadone for a year before that and oxycodone for a two years before that. The oxycodone didn't do anything but just knock the pain down a level or two. I had no side effects at all from it. No buzz or high. I thought for awhile it was making me sleep 15 hours a day but I found out in March that it was a different medicine causing that problem. So I had no bad side effects from it. I went off of it and at day 3 I started to go into opiate withdrawal. It wasn't that bad. I just quit taking it cold turkey and only had withdrawal for like 1/2 a day. But I had my Pastor pray for me and I believed God delivered me from the withdrawal of the medicine. So there is a downside if you want to come off of it. I can't believe Jimmy's dr didn't up his dose it could have prevented them completly if he was on a higher dose like the rest of us that have tried it with great success. Maybe he had some side effects from it and didn't want it upped. It is easy to apply on Your arm and you change it every 3 days. I hope you find something to give you relief! and soon!
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Karla
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nancyc
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Re: Time To Resort To New Rescue Plan
« Reply #20 on: Sep 25th, 2004, 9:26am » |
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Karla and Renee, I am still on the 25 mcq patch too...I was on it for almost two years, came off for three months and back on it now...It kept me pretty much pf for almost two years..now, I am having breakthrus but nothing like it was before I got back on it......I dont let my Doc up mine because I do have some side effects from it...Seems like the older I get, the less I can take strong medications, especially narcs....I get muscle rigidity from strong narcotics so I have to use the duragesic patch at a low dose....But just like everyone else said, Renee, from the first day I wore the patch, I never felt anything from it...no drowsiness, no drugged feeling...nothing...I would definetly ask my Doc about it...I DO NOT recommend this for episodics, only for folks that are chronic and nothing else works for them! I am a strong believer that pain management should be the last resort for clusterheads....just my opinion. Good luck, sis! nancyc
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| « Last Edit: Sep 25th, 2004, 9:43am by nancyc » |
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Renee
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Re: Time To Resort To New Rescue Plan
« Reply #21 on: Sep 26th, 2004, 7:12am » |
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Thanks for the input y'all.
o2 had quit helping about 6 months ago. My neuro decided for us to give it another try to shock the beast so I got setup with it yesterday. Am increasing my prevent, (zonegran) with no ill side effects yet.
For now I will stay with the Actiq lollipop for a rescue plan and if things do not improve soon then I will discuss the duragesic patch with my neuro, now that all are back from london.
I'm puzzled on one thing though and would like some input. I've had a BAD time of it since the first part of July yet my sister and 3 year old niece flew in to see me Wed. night. The only nights they have not stayed with me was Thursday night and Saturday night. The only nights I've been hit are Thursday and Saturday nights? I've been pf the nights they have stayed at my house?  Should I just ask them to move in as a prevent? 
wishing all a pf day
renee
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| « Last Edit: Sep 26th, 2004, 7:13am by Renee » |
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
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