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        New Message Board Archives >> 2004 Posts >> Need some positive vibes plz
        
(Message started by: marieinthesprings on Dec 21^st, 2004, 3:28pm)

Title: Need some positive vibes plz
Post by marieinthesprings on Dec 21^st, 2004, 3:28pm

[smiley=bigcry.gif]I only have one more day of pred. left and I am sooooooooooo afraid. And today I joined the ranks of , "oh you only get six of those a month" WTF am i suppose to do the 24 days?????What is up with that, why this magic 6???? I use imitrex nasal and it works great for me, the only other abort I have is midrin, so what do we do when they hit wait and see, hmmmm should i take one that works, instantly or save them for what might be a mach 10 tomorrow, when this one could turn out that way too. This is almost as bad as forced natural childbirth. Yes there is such a thing, its called SOCIAL MEDICINE and its all about the medicine world in Northern Ontario, so unless doc orders you a spinal, ha ha, isnt going to happen, your going natural baby, love it eh......sorry still tramatized by that.........so my pred. stops tomorrow, plz all tell me good stories about how they broke the cycle.....cheers.........pf wishes.............Marie

Title: Re: Need some positive vibes plz
Post by guesst on Dec 21^st, 2004, 3:34pm

Can you get oxygen?

Title: Re: Need some positive vibes plz
Post by Ruth on Dec 21^st, 2004, 3:36pm

That is what I was going to ask, can you get O2 or have you tried it yet?

Ruth

Title: Re: Need some positive vibes plz
Post by Jeepgun on Dec 21^st, 2004, 3:38pm

Marie, I hope you get some relief. Shoot a PM to Jonny. He can help you get hooked up with O2. Hang in there... [smiley=hug.gif]

-Frank

Title: Re: Need some positive vibes plz
Post by nani on Dec 21^st, 2004, 6:06pm

Many positive vibes going to you marie...hang in there...
[smiley=hug.gif]

get the O2.

Title: Re: Need some positive vibes plz
Post by Bethany1 on Dec 21^st, 2004, 6:13pm

Hang in there Marie.... vibes coming to you! [smiley=hug.gif]

Title: Re: Need some positive vibes plz
Post by marieinthesprings on Dec 21^st, 2004, 7:39pm

Thanks everyone..........i feel the love.........i have not tried 02 but am willing to try anything, i am praying the cycle will not return but i am not seeing any success stories here, is that a bad thing????? love you guys...cheers...Marie

Title: Re: Need some positive vibes plz
Post by TxBasslady on Dec 22^nd, 2004, 12:16am

Marie,
The Prednisone taper worked for me....I had 197 days TOTAL PF.

However, day 198....the CH returned, and I have been blessed with it ever since. That was last March. If I have a "cycle", I can't find it LMAO.

I only get hit at night. If you get the night hits, you might try Melatonin, if you haven't already. For a while, I was able to control the hits with the Melatonin and Excedrin Migraine. I have held on to my triptan as long as possible. However, I have had to dip in my stash, cause the CH is relentless.

The bad thing about the nighttime hits, for me, is that by the time I wake up, that bastard is pushing a Kip 7 or 8, and I'm not so sure that 02 would help me too much.

I have enough Prednisone for a couple more tapers. Looks like I may have to give in and do another taper.

Pred doesn't work for everyone. For most folks, the CH returns after the taper. I did have 197 glorious PF days, and I sure hope you have that many and more.

Good luck and wishes for lots of PF time for you,

Jean

Title: Re: Need some positive vibes plz
Post by RichardN on Dec 22^nd, 2004, 2:03am

"I am not seeing any success stories here"

"I have not tried 02 but am willing to try anything"

Marie, there are LOADS of success stories here. Still lots of pain, but herein you will find folks who've reduced their pain, managed their pain, and yes in many cases ended their pain.

My success was finding this bunch of lunatics and finally having a "name for the pain" and suggestions for fighting this bastard. Verapamil is my preventative (had my first PF day (in over a year) after finding this site. (when I hit 240 mg per day) got as high as 360mg before I had several PF days. The 02 helped kill the beast dead in a few minutes for most of them if I could get to it quickly. Much harder Jean I agree, if he catches you in a sound sleep and gets above the 6-7 level - - - - -BUT still much better than having nothing and having to endure much more severe pain than necessary.
I can't take Imitrex, and haven't as yet tried any of the other abortives . . . so far, 02 takes care of most (not all) of them, and that's a huge success to me.
Try the 02 and have it available. Investigate the other abortives, check with your doc and use them when the 02 doesn't work for you (assuming it does).

Be safe,

PFDANs

Richard

Title: Re: Need some positive vibes plz
Post by marieinthesprings on Dec 22^nd, 2004, 6:53am

Thanks Richard, I did not mean as a whole on the site i have not seen success stories I was just asking for some positives on this thread about the pred. taper....Actually its not really a taper, doc put me on it for 10 days 60mg and said I don't need to taper it, has me a bit concerned to be honest.....I have had a real long break from the beast, 5 years to be exact...so i have been out of the med loop and actually when I was getting hit I just did what ever i could to get through the cycle, I have never been so active in trying to find something that really stops the beast, guess you could say I danced to his tune until he let me stop.....Well I wish every one a PF day and many of them...cheers...Marie

Title: Re: Need some positive vibes plz
Post by karma on Dec 22^nd, 2004, 7:42am

Marie,
Read this carefully and call your doc. immediately.
The pred MUST be tapered over a course of a week or so. Serious medical problems may result if this is not done.
Pred is a serious medication and if your doc doesn't understand that then find a new one.

Title: Re: Need some positive vibes plz
Post by Ree on Dec 22^nd, 2004, 8:12am

*~~Marie~~* I have never noticed you before so I wanted to welcome you to this family of pain... The reason the doc gives you only a week of pred is because of the side effects of that drug and though it works for some, if you are episodic it may or may not work for you. You should possibly try to get on another drug that will lessen the severity of the attacks possibly Neurontin or Verapamil... there are also others... Zomig works great for an abortive as well... My husband got a prescription for 02 and found that he needed imatrex less. He also had a shorter cycle than usual because I am sure he used less drugs........... its such a catch 22 this Cluster Headache condition. I find though they might say someone is a "textbook"case, that everyone is individual and what works for one person may not for another.
Good luck and again Welcome (((nice to meet you Marie))) Ree (who is really Ann Marie)

Title: Re: Need some positive vibes plz
Post by marieinthesprings on Dec 22^nd, 2004, 8:57am

Thanks for the welcome Ree.....I only found this site when this cycle hit...its been a long time...me and that beast have had a parting....this cycle started for me beginning of Nov. which is what was normal prior to the birth of my daughter. I would get them for about 4-6 weeks, start off slow and then every day and then off again, although when I lived in Cali I was getting them in the spring too but a shorter cycle. From what I have been reading it seems alot of people are having an unusual cycle. I don't know if its me just thinking of the HA's so much or what but i have had a shadow now for about 2 hours, I am sure its not going to go kip on me but dam I hope its a mind over matter thing. I have had them for 17 years but nice 5 year break so i guess only 12 years dancing, I am thankful that i have not been chronic like so many here, I feel so sad for you all, I dunno how you do it. The beast just wears me down, I am sure I would have done myself in long ago if i had them every day....as for the pred. I had that for 10 days but I was asking about the imitrex ns, why are we only allowed 6 in a month? Cuz of the side affects? I am going to go read so more depressing crap about pred. now.........thanks again Ree and everyone here, I am really happy some one made this site, long time coming.........cheers everyone...........Marie

Title: Re: Need some positive vibes plz
Post by Rock_Lobster on Dec 22^nd, 2004, 9:13am

Three modes of treatment for CH...

Short term prevents... ie your Pred. Taken just long enough for the long-term prevents to kick in.
Long term prevents... what you seem to be completely lacking.
Aborts... Trex, Zoming, o2.

Long term prevents are the ticket. Verapamil, Topamax, Lithium... a long list. Long term prevents are essential to your quality of life.

The problem is with selecting your long-term prevents. It is sometimes a real pain in the ass to find the one that is just right for you.

Aside from those three prongs you can also try aborting your entire episode... Shrooms, Baclofen, a few other tricks. I just did that with fair success (w00t!). See topic 'Suppressed Episode' on the meds board.

Best of luck,
Wrokk

Title: Re: Need some positive vibes plz
Post by Rock_Lobster on Dec 22^nd, 2004, 9:19am

Also... you see that you should have a year-round prescription for any meds that your insurance company is tight on, ie Imitrex NS in your case.

Get them filled every month, whether you are in-cycle or not.

I personally keep enough meds on hand for two full episodes... which is typically good for 1-3 years in my case.

Oh... to answer your last question... the 6-per-month is more a case of economics than any medical standard. They cost your insurance company $30-$40 a pop. My present insurance allows 16 Trex vials a month, with each vial giving me roughly 2-3 doses.