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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Man did I piss off the beast!
        
(Message started by: birdman on Oct 17^th, 2007, 10:08am)

Title: Man did I piss off the beast!
Post by birdman on Oct 17^th, 2007, 10:08am

Well, ha's are back and have switched sides after only a one month reprieve. I took 35 RC seeds last night and boy did the beast get mad. Got hit at 5:30am and sucked a red bull down. Cleared up in ten minutes. Got hit again just now and hit another red bull. Nothing like grabbing the bull by the horns and smacking him. Hopefully, what they say is true, that the day after dosing can be quite a ride. I am holding on for dear life. Had the most effects of the seeds ever, probably because I soaked them for a longer period of time then usual. Looking for advice on when to redose if necessary. Thanks!
Tim

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 17^th, 2007, 10:48am

Hey, Tim.
If you're just starting the seed treatment, wait 5 days between doses. I'd reccommend dosing every 5 days until you stop getting hit, then just dose when you feel any CH activity (as long as it's been at least 5 days).
I've been using them for a while now, and used them in the way I just described. The first 3-4 doses, I kept getting some shadows in between. Once the shadows stopped, I stopped using them until I got another shadow. I've noticed, for the most part, that once I stopped the shadows from coming, I've had to dose less frequently (with the exception of my last dose).
Basically... If you're still getting hit 5 days from now... dose again. If not.... Maybe wait until the shadows start to return.
Just passing along the advice I got! Hope this helps!

Any questions, feel free to pm me.

Best wishes,
Adam

Title: Re: Man did I piss off the beast!
Post by Wayne on Oct 17^th, 2007, 11:59am

on 10/17/07 at 10:08:27, birdman wrote:

Nothing like grabbing the bull by the horns and smacking him.

Damn right mate!! Hope you smack him right out of your head.

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 17^th, 2007, 12:20pm

Adam,
How long do you soak your seeds for? In water?
Tim

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 17^th, 2007, 5:16pm

I have had to slam two more red rulls, 10:00 am and 3:30 pm. I guess the beast has been woken. Now I gotta slay the son of a bitch. What a day!

Title: Re: Man did I piss off the beast!
Post by nani on Oct 17^th, 2007, 6:21pm

Don't get discouraged, Tim. What you're experiencing isn't unusual. I would say a 5 day wait is ideal, but your symptoms may ease up in the meantime. I will have days like that, maybe a few in a row, only to have totally clear days follow them.
Do you have any O2? It might help to switch abortives a bit.
See where things are on Sunday.

hugs, nani

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 17^th, 2007, 7:25pm

Hey tim.

I usually go with 2-3 hours of soak time in water. It seems to be working well for me.

Sorry to hear your getting hit so often! Keep on fighting!

Best wishes,
Adam

Title: Re: Man did I piss off the beast!
Post by Beastfodder on Oct 18^th, 2007, 6:57am

Sounds promising - often find it takes a couple of slaps to put the thing back in its box.

All the best

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 18^th, 2007, 8:35am

Got hit last night at 8:00 pm with minor pain but then again at 1:00 am and 6:00 am. Used ice during the night and a red bull this morning. Hope that today is better. To many red bulls can't be good either.
Can I use melatonin while being detoxed?
Tim

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 18^th, 2007, 10:39am

Hey again!

Though I read through all the info I could find before starting my seed treatment, I couldn't remember if Melatonin was ok to use or not.... So I looked it up!

It is suggested you stay away from using it while you are treating with seeds or shrooms. It's in the category of "possible inhibitors". So I'd steer clear of it while detoxing. Doing so will help you get the most out of your treatment. Better safe than sorry, right?

Best of luck,
Adam

Title: Re: Man did I piss off the beast!
Post by billyjoe on Oct 18^th, 2007, 12:45pm

Tim,

Did you say you experienced effects from 35 seeds? Curious as to what you felt. Personally, I'm feeling my seeds are weak and/or are becoming less effective. Got hit pretty good last night and having shadows today. I too am hoping it's a temporary event as I just dosed the other night.

Bill

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 18^th, 2007, 3:29pm

I did get a little tipsy feeling and got rather dizzy. Was fine with it though as I just went to bed. I think it is beacuse I let them soak for about five hours instead of two. Anyway, have had many shadows since my morning hit but nothing strong. Let's hope I kicked the beast in the !@lls hard enough to chase him.
Tim

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 18^th, 2007, 5:17pm

Tim...

Glad to hear you're not getting anything more than shadows! Hopefully your next dose will knock them right out of the park!!

Best wishes,
Adam

Title: Re: Man did I piss off the beast!
Post by MJ on Oct 19^th, 2007, 2:19am

Keep hitting it till the beast turns tail and runs.

For what its worth Here is my trial with the seeds if interested with some input from others.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1132680856

Here is the result of what finally helped me and support of less is more.
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1138385923

Draw your own conclusions. and 2 years later I still dose every 30 to 45 days as minor symptoms occur to keep the CH at bay.
I find now that 1000 mg of tylenol has about as much effect on me as 15-20 RCseeds when it comes to feeling them.

Use caution out there.

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 19^th, 2007, 10:01am

After a full day of nothing but shadows, got hit at midnight, 5:00 am and 9:00 am. Each one has been harder then the previous one. Ice at midnight, red bull/o2 at 5:00 but redbull/o2 at 9:00 only lightened the pain. Still have a lot of discomfort and am typing with one hand as I hold o2 again. Can't wait to hit it again this weekend. Fighting of the urge to grab the trex. Damn!
Tim

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 19^th, 2007, 11:26am

It took a second red bull to beat this time. What size red bull is everyone using? The small can or the big can? Thanks!

Title: Re: Man did I piss off the beast!
Post by billyjoe on Oct 19^th, 2007, 11:42am

Tim,
Read MJ's second link. He explains a different approach of multiple, small daily doses. This may provide some immediate relief.

Bill

Title: Re: Man did I piss off the beast!
Post by Wayne on Oct 20^th, 2007, 5:49am

on 10/19/07 at 11:26:33, birdman wrote:

It took a second red bull to beat this time. What size red bull is everyone using? The small can or the big can? Thanks!

I always use the 250ml can, but if I think its gonna be a biggy then I drink 2 just in case.

Title: Re: Man did I piss off the beast!
Post by nani on Oct 20^th, 2007, 11:42am

How are you today, Tim?

hugs, nani

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 20^th, 2007, 2:03pm

Thanks for asking Nani! Last night it was 1:00 am ice, 6:00am redbull/ice, and 10:00 am red bull. Yesterday, at 4:00pm I got hit and tried three RC seeds under my tongue after a red bull. Cleared me up, not sure if it was one or the other. Or both. I think I am gonna dose again tonight instead of waiting for tomorrow (the full five days). Is that bad?

Title: Re: Man did I piss off the beast!
Post by nani on Oct 20^th, 2007, 2:41pm

on 10/20/07 at 14:03:36, birdman wrote:

I think I am gonna dose again tonight instead of waiting for tomorrow (the full five days). Is that bad?

No, it's not bad. It's not always ideal, but I know where you're coming from.
A few questions: Were you pf before the last dose of 35 seeds?
Was it a maintenance dose, or a treatment dose?
Has anything changed recently, ie: other meds?
Is something (weather, etc) triggering you?

I really appreciate that you're keeping us updated...this is how we learn.

hugs and pf wishes, nani

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 20^th, 2007, 4:43pm

I wasn't pf before. I was getting kip3 ha's on right side(just got over a left side cycle of 6 months). Had a one month reprieve.

I finally tapered off verapamil because of arrythmia(spell)

Also, the fall is always a bad time for me and if the weather doesn't get me the time change does.

I think I am going to try 35 more seeds tonight and see if it knocks the beast down for good. I am starting to wonder if the seeds 'fast forwarded' my cycle to were I am now peaking within the first week. Maybe the second dose will fast forward me to the end. Wish me luck!
Tim

Title: Re: Man did I piss off the beast!
Post by andrewjb on Oct 20^th, 2007, 5:39pm

:), the very best of Tim. remember to stay hydrated, and breath deep. hope your PF, right soon. andrew.

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 20^th, 2007, 5:50pm

Best of luck, Tim!!
Since I'm trying the seeds too, I'd be interested in hearing how the "early" dose works out for you. I'm afraid I might get hit more often during what should be my "peak".
As of now, my seed treatment has been wonderful, and I'm enjoying the PF time I've had.

Best of luck!
Adam

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 21^st, 2007, 1:45pm

I took 35 seeds last night and felt great going to bed. Awoke at 1:30 am and 4:30am with 30 minute kip5's. Just used the ice and cold/hot showers. Started to feel shadows at 10:00 am and sucked a red bull and felt better. Currently been fighting shadows since 1:00pm. I am going on a two night trip with my wife and hoping that things will be better. Packing all the neccessities including seeds. Wish me luck!
Tim

Title: Re: Man did I piss off the beast!
Post by ski2k on Oct 21^st, 2007, 2:19pm

Best of luck Tim!!

I'll be hoping the beast leaves you alone while you're trip. Keep the Red Bull handy!!

Take care,
Adam

Title: Re: Man did I piss off the beast!
Post by Sandy_C on Oct 22^nd, 2007, 8:02pm

Tim, I'm sorry I haven't been online as much as usual. I'm also sorry that you're back in the thick of things with the beast.

Hang tough, my friend. Many of us are finding relief using the seeds, some faster than others (me being one of those). All I can offer you is an ear to listen, a shoulder to vent on, and advice of my own personal experience with the seeds.

I don't think the 4 day wait is going to hurt you,even though the recommendation is a minimum of 5 days. If it were me, Ias long as I even shadows, I would dose buster size every 5 days, continuing on that way for at least another 5 days after I am completely symptom free.

I hope your trip is absolutely PF and the beast leaves you compltely alone. But, should he rear his head again....Red Bull and ice to the rescue!

Sandy

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 24^th, 2007, 3:37pm

Wow did I get my butt wooped these last few days. Been every 4-5 hours. Red bull and ice have been my main tools. O2 has been ineffective. Tried another 35 seeds last night and the results are soso. Had a mild hit at 12:00am and a legit hit at 4:00. At 9:00am had a real bad one and nothing since. Just shadows. Trying to grow my own shrooms with zero success and ready to fly to Ecuador and pick my own. You would think in NYC it would be easy to get!!! What happen to all those guys I used to know? Anyway, venting, venting, venting! >:(

Title: Re: Man did I piss off the beast!
Post by billyjoe on Oct 24^th, 2007, 3:45pm

Check you local concert listings and see if any of the Grateful Dead spinoff bands such as Phill and Friends, Rat Dog, Etc are playing in your area. Should be a good source for shrooms ;;D

Title: Re: Man did I piss off the beast!
Post by jackieg on Oct 24^th, 2007, 3:53pm

I think I am exactly where you are now. My husband took me and my O2 tank to Cape May for relaxation since I am in the third week of the cycle. I was hit every 2 hours from the time I fell asleep both nights. I had 11 attacks in two days, some relaxation. I have been experimenting with the seeds and staying away from the usual medications. Yesterday I was hit at work at 2:30 pm (I am a teacher in NJ) and it was relentless.The O2 kept putting it off and it kept coming back. I thought I was going to die from the pain last night for 4 hours. I took 8 seeds last night and slept through the night. I took off today and am feeling pretty good. No hits. You may try a few seeds at night in between the large doses. I am hopeful that it is going to work. It is definitely doing something. Hang in there.

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 24^th, 2007, 5:46pm

I wasn't too far from Cape May (actually exit 48 off the GSP) and I was suffering like mad. Sleep seems to be the worst time and the seeds usually give me a good nights rest. Not this time. I want to use melatonin to get a little sleep but do not want to mess with anything the seeds may be doing. Damned if I do, damned if I don't.

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 25^th, 2007, 9:05am

I give up! I tried melatonin last night, I know it doesn't always work the first try. I got hit at 1:00am, 5:00am and 8:00am, with the last being a killer. Had the trex out and think I am calling the nuero for a pred taper. I need some relief as I am losing my mind. Dosed on Tues so I need to wait until Sun. Not sure if it is benefiting me at this point. If I can get through I think I need to try a much stronger dose. Anyway, today sucks!

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 26^th, 2007, 1:29pm

Spoke with the neuro and she wants a pred taper and to start on depakote. Anybody try this med? Let me know your opinions.
P.S. - Still nothing growing on the farm!

Title: Re: Man did I piss off the beast!
Post by billyjoe on Oct 26^th, 2007, 1:45pm

Tim, I haven't taken it but I would suggest you read this link if haven't already. Sounds like there could be some side affects to be concerned about.

http://www.depakoteer.com/depakoteer/patient/migraines/important-safety.jsp

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 26^th, 2007, 8:06pm

Thanks Billyjoe, I checked that out this morning. I started the pred taper tonight and will start the depakote tomorrow morning. Couldn't cope any longer and need a break. Hopefully the pred will give me a week or two of relief. See what happens then.

Title: Re: Man did I piss off the beast!
Post by jackieg on Oct 26^th, 2007, 10:24pm

Sounds like your seeing the same Neuro I see in NYC. I hope it helps you. The Pred taper did nothing, the Depakote did nothing, the Neurontin, Verapamil, Migranol, Topamax, etc... nothing, nothing, nothing.
The seeds have given me relief and 3 nights in a row of sleep. I have been taking 6 in the morning and 6 before bed for a few days. Tonight I will take 5 and keep tapering. I felt great today but am starting to have a little breakthrough. I am tempted to see how high it will escalate, but am afraid. So it is off to the tank for a few minutes. I am still hopeful about the seed treatment. Nothing else in 20 years of 12 week episodes has ever gotten me through 3 full nights of sleep. Good luck and let us know how it works out.

Title: Re: Man did I piss off the beast!
Post by CostaRicaKris on Oct 26^th, 2007, 10:49pm

Prednison taper has worked for me, but then I worked up on Topamax as I tapered off, I haven't tried Depakote. Prednison worked great - make me very shaky. Do Not skip a dose. I was stupid and forgot to take a night time dose and got hit at 3 am about a Kip 7. The Topamax works for me but I still have shadows. (I can live with shadows)

I hope you get some relief,
~Kris

Title: Re: Man did I piss off the beast!
Post by Jonny on Oct 26^th, 2007, 11:03pm

Tim,

Always keep this in your mind when its at its worst!

I was chronic for over 31 years, now I have been stock piling meds for almost two years. I keep telling the doc that I still have them so I can stockpile.

I have not had more than a shadow in nearly two years, if that can happen to my old ass it can happen to you, never give up because we fight together, bro!!

Will they come back?....dunno, but I am sure damn ready for battle!

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 27^th, 2007, 11:28am

Believe it or not I am happy for the pain free folks. Tough to show it right now but I am. I started the pred last night and always had 100% success with it. Nothing so far. Got hit at 10:00pm, 2:00am and 5:30am. Nothing major but enough to wake me and keep me pacing. Even between hits I have constant soreness, temple and back of the head. Keep praying the pred will kick in.

Title: Re: Man did I piss off the beast!
Post by CostaRicaKris on Oct 27^th, 2007, 7:27pm

When I keep getting hit like that, I'm very sore around my temple and along my cheekbone in between hits too. I really hope the Prednisone works for you. I know what it's like to try meds after meds that don't work. Prednisone and Topamax were the first things that worked for me - of couse it was six years after my first CH that I was properly diagnosed ;-)

Let us know how it goes!

PF wishes - Kris

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 29^th, 2007, 9:03am

Man, I can't beleive I am still getting hit. 60mg of prednisone a day and still having breakthroughs. Never happened before. Had a medrol pack not help but pred has always worked without fail. The nights are the worst, daytime is much better. Can I take melatonin while taking pred? Anyother nightime suggestions? The congestion seems to be heightened and I am thinking of benadryl or sinus meds at bedtime.
I am down in the dumps and desperate for a nights sleep!!
Tim

Title: Re: Man did I piss off the beast!
Post by billyjoe on Oct 29^th, 2007, 11:24am

Tim,
Does Trex not help or are you trying to stay off that so you can still use the seeds and such? A half shot of Trex in the night usually let me go back to sleep for the rest of the night. Not the greatest solution, but as you know, you get used to it. In fact, after a while, I could take a shot and be back to sleep in close to a half hour.

Hang in there!

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 29^th, 2007, 12:19pm

Trex has helped but not as quickly as it used to. O2 has been useless this cycle. I have just used ice, ice, ice! And lots of caffeine during the day!

Title: Re: Man did I piss off the beast!
Post by Wayne on Oct 29^th, 2007, 2:17pm

Hi Tim

Don't know if this will help you but I did find sometimes that a mild sinus infection linked to more CH activity. Sinutab or sinumax with codiene seemed to help take the edge off. maybe worth a try. Sorry the seeds didn't work.

Holding for you mate

Wayne

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 29^th, 2007, 4:43pm

Going to visit the pharmacy and see what the strongest over the counter med available is. Got to try something.
Thanks for the thoughts.
Tim

Title: Re: Man did I piss off the beast!
Post by nani on Oct 29^th, 2007, 10:42pm

Aw, Tim...I'm sorry to hear this.
I will also get my butt kicked when I have a cold, or lots of congestion. Even if I'm otherwise pf.
Get the congestion under control, get the hits under control...and then you can revisit any other choices.

lotsa love, nani

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 30^th, 2007, 8:32am

Thanks Nani! Trying to get through just one night. Tried some benadryl last night. Don't know if that is a prbolem with pred and depakote but I took it anyway. Was groggy when the beast woke me at 12:00 and 4:00. Got back to sleep pretty quickly.
Tim

Title: Re: Man did I piss off the beast!
Post by birdman on Oct 31^st, 2007, 2:21pm

Last 2 days have only been night hits. Shadows during the day that redbull, ice and finally O2 are relieving. The nights are horrible. 2-3 a night, the first usually one hour into my sleep. Gonna go back to trying the melatonin and hope it helps. I need a sanity check!
Tim

Title: Re: Man did I piss off the beast!
Post by birdman on Nov 1^st, 2007, 8:31am

Latest update. Last night got hit at 9:00 pm and could tell it was going to be bad. I took only my third trex inj this cycle and then popped 9mg of melatonin. Sleeped all night except bathroom breaks. Got my usual wake up hit and beat it with redbull, ice and o2. Let's hope it wasn't just the trex giving me the night off. Though I did need it badly.
Tim