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Pete_G
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Preventative Treatment
« on: Jan 20th, 2005, 7:27am » |
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Hello,
I became a new member yesterday (Thanks to all who replied) and wanted to discuss the treatment I am on for my cluster headaches (episodic).
I started my cycle dec. 17, 2004. They usually (my track record) last anywhere between 4-8 weeks. Sometimes one-two or three a day.
My Neuro started me on Verapamil 80 mg twice a day along with Prednisone 20 mg (these were taken as follows: 4 for 2 days, 3 for 2 days, 2 for 2 days, and 1 for 2 days). Along with this Imitrex Nasl 20 mg.
After this 8 day therapy, the headaches were still there the minute I finished the prednisone, and while I was on the Pred., the Imitrez worked great when I got hit.
Two days after the first therapy, my Neuro started me on Pred againsame therapy as the first. Headaches were again controlable with the Imitrez and the Neruo also increased the Verapamil to 2 80mg in the am and 2 80 mg in the pm.
Once I was done with this therapy, still headaches and getting even worse.
On Jan 13,2005 almost one month, she decided to go on the Pred again, this time 5 for 1 day, 4 for 5 days, 3 for 5 days, 2 for 5 days, and 1 for 5 days. I am now on the 3 for 5 days (second day of 3) and I'm hanging in there. I know from previous experience that the Pred really works to ward them off and it's the only time the Imitrex really works. The headches usually ceases within 15-20 minutes.
I've read alot on thius site before joining and have seen some of the different therapies but have'nt really seen anyone discuss the actually amounts and how they have worked.
I was also wondering if anyone else had the experiences of once off the Pred, do the headahces get more intense?
I'm just hoping that these headaches are peaking out and can go back and function normally again.
Again, I considerate myself fortunate being episodic and my heart goes out to all the chronic suffereres.
Thanks again for your replies!
Pete G
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JoeS
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Re: Preventative Treatment
« Reply #1 on: Jan 20th, 2005, 9:08am » |
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Hey Pete, welcome to the board (sorry you have to be here, though...). I'm episodic with about the same cycle length as you. I've definitely had similar experience when coming off the prednisone. I'm not sure the HAs for me are actually worse than before after coming off the pred, but that maybe the pred just gave me such a nice break that I'd forgotten what they were like.
Anyway, with verapamil, I found that it didn't work at all for me until I went up to 480mg / day. It takes a few days for it to build up in your system, so by starting it a few days before coming off the prednisone, I found that I didn't get hit too hard when I did come off the pred. You're at 320mg / day now, so you might talk to your Doctor about a higher dosage.
Best of luck,
Joe
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euphoricdream
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Re: Preventative Treatment
« Reply #2 on: Jan 22nd, 2005, 12:49pm » |
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Pete,
My CH started Dec, 20 2004. By the time I admitted to myself that they were back almost two weeks had gone by. I went to the doc to get the old stand by (Prednisone) as it has stopped my cycle two times now. Well the doc prescribed it as shown...
Prednisone / 20mg tabs
3 for 4 days, 2 for 4 days, 1 for 4 days. 1/2 for 4 days.
The Prednisone instantly stopped my cycle (so I thought). I took the pred for 16 days with only 1 tiny breakthrough headache. When I was on my last day of 1/2 tablet I got a headache again. The next day I got 2 headaches and so on. These were much more intense than the ones I was getting before taking the regimen of Prednisone.
It has now been 4 days since I stopped my Prednisone and I can barley stand the pain. I have a few Prednisone left over from my last regimen so I plan on taking it again but I cannot see my doc until Monday.
I was worried about taking the Pred again so soon before asking my doc but now that I've read your post I feel comfortable taking the Pred again.
Thank you for your post...it was just what I was looking for!! I'll update you on how well it works the second time around.
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Tara Ann
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Re: Preventative Treatment
« Reply #3 on: Jan 22nd, 2005, 12:59pm » |
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I too sometimes(and alot of others from what Ihear) get only a nice break with a pred taper, then afterwards the CH returns just as bad if not worse. The pred (from my understanding) is only to give you a break while your preventatives work into your system. That much pred, and that often *I* think is dangerous (ex:bones). As Joe said, maybe you are not taking a high enough dose of verapamil. Or maybe you need a different prevent if the verapamil doesn't end up working for you even at a higher dose.
Goodluck, and I hope you find something that works better for you soon!
Oh and welcome to the boat!
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| « Last Edit: Jan 22nd, 2005, 1:00pm by Tara Ann » |
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Gator
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Re: Preventative Treatment
« Reply #4 on: Jan 22nd, 2005, 7:13pm » |
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Welcome to the website. Sucks that you had a reason to come looking for us, but damned glad you found us.
As you have no doubt discovered, the links to the left have tons of good info in them. There is even more on the OUCH website. Read everything you can and print stuff out that seems applicable. Unfortunately, you may end up teaching whatever doctor you see about CH.
The steroids are a wonderful terrible thing. We have a few people here who have been seriously and irrepairably harmed by their doctors prescribing too much too often. 3 pred tapers in a month seems dangerous to me, but I'm not a doctor. My neuro only gave it to me twice last year. He said the reason was because of the damage they can do to your body.
A lot of clusterheads find the Imitrex Nasal to be all but worthless and yet those same people get wonderful results from Imitrex Injections. Ask your doc for a stat dose kit and see if the injections work any better for you.
Here is a link to read and print and take to your doctor. It describes preventative, transitional, abortive and surgical treatments for CH.
http://www.future-drugs.com/admin/articlefile/ERN020304.pdf
Here is a link to some non-prescription alternatives different people have used to help with the pain:
http://www.clusterheadaches.org/resources/non_script_treat.htm
If you are currently taking medications, I would suggest you talk with your doctor before taking any of the nutritional supplements. At the very least check for interactions at a website such as:
http://www.drugdigest.org/DD/Home/AllAboutDrugs
Nutritional supplements can interact with prescription meds just the same as some prescription meds interact with each other. Better safe than sorry where your health is concerned.
Oxygen is an excellent abortive. Works for most people when used properly. Defintely try this. As well as it works, I have a hard time understanding why more doctors do not prescribe it. If your doc won't prescribe it for you, you might try welder's O2. It's the same pure oxygen used by medical suppliers. Many people here use it and would be more than happy to help you set it up. Here is a link that tells about using O2 and shows a setup using welder's O2.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
Here is a link to a letter that may help explain things to your friends, family and co-workers.
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
Again, welcome to CH.com. There's no better place in the world for info and support.
Gator
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Kris_in_SJ
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Re: Preventative Treatment
« Reply #5 on: Jan 22nd, 2005, 7:54pm » |
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Follow Gator's advice and links - and seriously ask for a Verpamil increase to 480mg/day. I've never found relief with less. Prednisone is a life-saver for many until prevents kick in, but it really can cause major problems with your body - not to mention your appetite (I once went cruising at 3 AM to find a Heath Bar).
If you're finding that you have to exceed your daily recommended dose of Trex, you might also want to consider Oxygen as an abortive.
Keep posting, keep asking questions, and welcome to the family - from one episodic to another.
Hugs,
Kris
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euphoricdream
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Re: Preventative Treatment
« Reply #6 on: Jan 22nd, 2005, 11:18pm » |
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Gator,
You said
"The steroids are a wonderful terrible thing. We have a few people here who have been seriously and irrepairably harmed by their doctors prescribing too much too often. 3 pred tapers in a month seems dangerous to me, but I'm not a doctor."
Can you elaborate on the above?
I just finished tapering off 4 days ago but started another regimine of Prednisone today (60mg without docs permission...can't see him until monday but can't wait).
You've got me kinda scared with the whole irrepairable harm thing. Could you explain? Thank you!!
Oh yeah...thanks for all the links and info!!
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E-Double
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Re: Preventative Treatment
« Reply #7 on: Jan 22nd, 2005, 11:38pm » |
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Steroids although the wonder drug can also be truly harmful if used for very long periods of time or if tapered to quick, to slow, or stopped abrubtly.
Some have developed Avascular Necrosis.....very loosely speaking bone death......because of loss of blood supply due to the steroids.
It is very important that you let your doctor know!
We tend to know our bodies better than the doctors do however, the drugs are some damn potent stuff and we don't always know the effects.......
Research them all and even if there is a chance of anything.......
Good luck my firend and PF wishes!
Eric
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Gator
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Re: Preventative Treatment
« Reply #8 on: Jan 24th, 2005, 2:08pm » |
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They are wonderful when used properly, but even this is subject to debate recently. They are terrible when over used or incorrectly used.
I don't mean to scare anyone off from what works, but the indescriminate use of prednisone can be dangerous to your health. I would definitely consult with you doc before doing another round so soon. I would seriously recommend you not take it upon yourself to keep dosing without a doctor's supervision. The pain relief is not worth the damage it can cause.
Like E said, we have one young lady suffering from Avascular Necrosis. She will have to have knee replacement surgery very soon because the ends of the bones in her legs have basically died.
Another member's immune system as well as other systems were damaged, some beyond repair, because of a doctor not properly administering steroids. To say we are praying he lives is not an exaggeration.
Here are links to just two of thousands of pages showing side effects of steroids. There is more after the ads in the middle of the pages.
http://www.rxlist.com/cgi/generic/pred_ad.htm
http://www.rxlist.com/cgi/generic/pred_wcp.htm
You can find more results using Google. It's not pretty.
Be careful and consult a doctor before taking any of the meds used in the treatment of CH.
PFDAN,
Gator
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BrianDupuis
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Re: Preventative Treatment
« Reply #9 on: Jan 25th, 2005, 8:37pm » |
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on Jan 22nd, 2005, 12:49pm, euphoricdream wrote:Pete,
My CH started Dec, 20 2004. By the time I admitted to myself that they were back almost two weeks had gone by. I went to the doc to get the old stand by (Prednisone) as it has stopped my cycle two times now. Well the doc prescribed it as shown...
Prednisone / 20mg tabs
3 for 4 days, 2 for 4 days, 1 for 4 days. 1/2 for 4 days.
The Prednisone instantly stopped my cycle (so I thought). I took the pred for 16 days with only 1 tiny breakthrough headache. When I was on my last day of 1/2 tablet I got a headache again. The next day I got 2 headaches and so on. These were much more intense than the ones I was getting before taking the regimen of Prednisone.
It has now been 4 days since I stopped my Prednisone and I can barley stand the pain. I have a few Prednisone left over from my last regimen so I plan on taking it again but I cannot see my doc until Monday.
I was worried about taking the Pred again so soon before asking my doc but now that I've read your post I feel comfortable taking the Pred again.
Thank you for your post...it was just what I was looking for!! I'll update you on how well it works the second time around.
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In regards to the pred, the EXACT same thing happened to me...
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euphoricdream
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Re: Preventative Treatment
« Reply #10 on: Jan 29th, 2005, 2:52am » |
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I went back to my doc the other day (monday) and let him know that I had been taking 60 mg of Pred for 3 days. I told him that I was aware of the problems associated with high dose/long term cycles of Prednisone but I could not stand the pain. He said "You can't take Prednisone through your whole cycle". He went on to explain that the regimen I have been taking does not constitute a "long term" dose and I have absolutely nothing to worry about. He then gave me this scrip...
Starting the following day take....
40 mg /day for 2 days, 20 mg /day for 10 days, 10 mg /day for 10 days, then 10 mg a every other day until gone.
Today will be my second day @ 20 mg / 8 more days to go with the 20mg. I have noticed a pattern since taking this second dose of pred. The headaches are not completely gone as before. They seem to come every other day @ about 6:00pm. When the demon does come, I can tell it is somehow masked or could be much worse (not saying they aren't bad) but they could be worse. I know it's the Pred that's helping.
I just hope I have "peaked" and this hell will end soon.
I'm pretty confident with what my doc tells me. He's a well known doc in St.Cloud Florida and specializes in clusters.
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| « Last Edit: Jan 29th, 2005, 11:32am by euphoricdream » |
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Pete_G
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Re: Preventative Treatment
« Reply #11 on: Feb 8th, 2005, 6:23am » |
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Hello to all,
An update:
I just finished this last round of prednisone last Thursday as I had discussed previously. It worked great and I had only a few cluster headahces. I awoke Friday with a nasty cluster which lasted about 1 1/2 hrs and then had a regular migraine all day. Saturday and Sunday, again the same.
Monday 2/07/04 I went to my Neuro. I am now in week 6 and my clusters usually last about six to eight weeks. These have been so different this time around. The last time I had these was six years ago, and they seemed more tolerable. Now I'm 40 yrs old, in halfway decent shape, and I don't know if it is my age or if I'm slowing down a bit, but these seemed to have peaked from the beginning and seem to have gotten stronger once off of the prednisone,
My Neuro is against putting me back on the pred being I had three rounds or it already.
Now she is going to up my Verapamil from 2-80mg in the am and pm to three in the am and pmfor a total of 480mg.
She also wants me to try Depakote. She wants me to start with one 500mg time released for four days. If it seems to be OK then she wants me to take two 500 mg per day.
This time as far back as I can remeber dealing with these clusters, this has been the worst. Previuosly I was able to function OK. Maybe once a week tops I would be laid up for the day. Other than that, I was still able to somewhat function. All the meds seem to be slowing me and functioning on a daily basis has been tough.
I hope this works and that something knocks these clusters out of me. I've tried the water therapy but have'nt really noticed anything different.
Just wondering if anyone had any luck with depakote and just wanted to share what I was going through in the event anyone needed any info on their therapies.
Stay well!
Pete
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