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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> help, i am running out of options!!!
        
(Message started by: chrisw on Mar 23^rd, 2007, 9:04am)

Title: help, i am running out of options!!!
Post by chrisw on Mar 23^rd, 2007, 9:04am

I used my second dose of rc seeds yesterday. 1st dose 15, 4 days ago. second dose32 yesterday. my night was the same, no change, ha every hour all night long. no better or worse than before the seeds. maybe i will try another dose of 50 in a couple of days.

i tried it without detox, im on verap, and depakote. i think i will start going off of the meds because why stay on them when they dont seem to be working anyway. i dont see how I could get any more frequent ha. they could get more painful, i suppose, in which case i could go back on the meds.

i feel like i am running out of options, and i am trying to stay optimistic, but it is really hard when everyting you try doesnt work, and the only thing that ever hellps in steriods and we all know you cant stay on them forever. this cycle is lasting three times as long as usual, all the doctor ever says is to increase dosages of the same meds that arent working to begin with . aaarrggh.

any ideas on the third doseof rc would be apprec. thanx
chrisw

Title: Re: help, i am running out of options!!!
Post by nani on Mar 23^rd, 2007, 9:10am

I have maybe 5 minutes before I have to run out the door. I'll cover what I can and hopefully someone will follow with more info.
I know that you knew that dosing without detoxing might not work. So, now you know to detox first. Start the detox asap. Have Red Bull or O2 handy for abortives. Detox for 5 days, then try again. You probably don't have to increase from the amount of the second dose. Be prepared for post dose hits. They happen, and in fact are a good indication that things are changing. Good luck, and hang in there.
pf wishes, nani

Title: Re: help, i am running out of options!!!
Post by Samiam on Mar 23^rd, 2007, 9:41am

Look first thing first. There is no giving up. There are only different paths that we can take. It's hard to feel that way when we are in pain all the time.

I'm in the height of my cycle and some days I want to kill myself some days I want to kill someone else but then it passes and another day is crossed off my list.

I went to the neuro and we are now trying Topamax which I wasn't too keen on but it was the only drug that I haven't tried. Right now I'm on 1 mg of Klonopin 100 mgs of Imitrex @ bed and O2. A lot of O2 somedays I'm on it every hr. but then some days I have hours inbetween. Today I think is going to be one of the days that I'm attacked due to the weather change.

I'm also dealing with "Mono" and Adrenal issues which limit what and how fast I can take meds. I'm also on Thyroid meds that are out of wack also. So I feel like I'm boxing air.

Hang in there. This site is fantastic and they will be here soon to give you a game plan. They have drug me from the black hole many of times.

Sami

Title: Re: help, i am running out of options!!!
Post by Bob_Johnson on Mar 23^rd, 2007, 11:34am

Unfortunately, with the exception of Imitrex injection, many of the meds we use are effective, perhaps, for 60% of users and then there is the problem of one working for a time and stop being effective.

I'd suggest rooting through these pubs for ideas.

http://www.headachedrugs.com/pdf/ha2006.pdf Dr. Robbins site. Then explore the entire site by deleting everything following. com/ and then hit enter.
=========================================================================
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002)

http://www.brightok.net/~mnjday/chtherapy.pdf

-------------------
And, MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $59 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")

HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Title: Re: help, i am running out of options!!!
Post by thebbz on Mar 23^rd, 2007, 12:00pm

Do what Nani said. Another option thing would be, do what Nani said only use mushrooms. Busting an ongoing episode with RC seeds did not work for me, had to have the big hammer.
all the best
and you have many options still. Hang tough Chris
jb

Title: Re: help, i am running out of options!!!
Post by UN solved on Mar 23^rd, 2007, 12:05pm

yea, what they said 8)

Hang in there. You're not out of options ...There's plenty of things to try.

Goodluck :)

UNsolved

Title: Re: help, i am running out of options!!!
Post by Superpain on Mar 23^rd, 2007, 1:02pm

I think your problem is detoxing. I had the same issue with shrooms. I did get some relief without fully detoxing, but I did detox at least a little 3 of 4 times. The time I didn't detox at all, it made it worse.
Unless you're on opiates or something it shouldn't be that hard to go a few days without the meds. Try it!

Got O2?

Title: Re: help, i am running out of options!!!
Post by Lobster on Mar 23^rd, 2007, 1:40pm

on 03/23/07 at 12:00:22, thebbz wrote:

Busting an ongoing episode with RC seeds did not work for me, had to have the big hammer.

Aye... with the other alternative the doses I had to take to break a cycle were far in excess of maintenance doses.
I never tried to break one with RC, but I imagine it would be difficult.

Title: Re: help, i am running out of options!!!
Post by Sandy_C on Mar 23^rd, 2007, 1:41pm

Chris - NO, do not take another dose of seeds in a couple of days.

First - you need to be detoxed from all of your CH meds. They will interfere with the intended results of the seeds. You will have to tough out the hits for a few days before you should dose again, or before you notice some relief.

Second - After detox and after dosing with seeds, you will probably get some pretty big hits that you are going to have to deal with using 02, red bull, ice, water - no meds. This also is hard to tough out.

Third - the first dose of rc seeds will take 3 to 5 days to actually begin working in your system. Do not re-dose for at least 5 days, and then dose every 5 days through the rest of your cycle. If they work for you like they worked for me, that cycle will be short, sweet, and over within days.

The seeds are not an "instantaneous" miracle in getting rid of CH pain. They need a little time and they need a body cleaned of other meds to do their thing. But, please trust me on this, they DO THEIR THING, if used correctly.

Send me a PM if you need to talk, I'll give you my phone number.

Sandy

Title: Re: help, i am running out of options!!!
Post by Superpain on Mar 23^rd, 2007, 4:24pm

Yeah, I forgot to mention that too. You're dosing too often. With shrooms I get hit real hard for up to a week afterward before they take effect. Patience...

Title: Re: help, i am running out of options!!!
Post by chrisw on Mar 23^rd, 2007, 9:56pm

thanx guys for the info,
its amazing the emotional ups and downs this syndrome causes people. one day i am crying and depressed all the time, and the next day i am ready to fight and work to kick this beasts ass.
i am never like this, i dont know if its lack of sleep or what, but its like an emotional rollercoaster.

i am starting detox today by dropping verap adn depakote by one pill a day for 2 days then another ,etc. then i will wait five days and try a dose of seeds again. i hope i can handle the hits without trex. that will be a challange.

thanx,
chrisw

Title: Re: help, i am running out of options!!!
Post by MJ on Mar 24^th, 2007, 2:34am

Hi chris

Sorry to hear you had no results YET. It is far more difficult to break a cycle with RC than to avoid one

I never had to detox as I was allready med free for CH. According to all the research and those who have gone before the detox is crucial.

I had good success with the seeds myself and in a years time have only had one major hit when I should have been in full cycle. From 8-12 hits a day for me to no hits is pretty cool.

As you probably allready know every time we switch up the meds to battle these things it allmost allways gets worse. So I would reccomend not switching things up unless you are 100% certain the seeds wont help.
Give it at least a 72 hours detox preferably a week if you can then hit it hard.

Breaking a cycle.

I differ from the others when it comes to dosing with RCseeds to break a cycle and feel that first they need to get in your system and then a dose twice a day "if" your getting hit hard. Take the seeds before bed and when you wake up
Increasing the dosage does not seem to make a difference when breaking a cycle, in fact a decreasing dose seems to have a greater effect to break a cycle.

Maybe initial dose of 30 seeds then maybe just a few seeds twice a day for a few days. Similar to a pred taper only a shorter time frame.

I will see if I cant find my initial experience thread again. Its long and boring but good inputs from others.

Title: Re: help, i am running out of options!!!
Post by chrisw on Mar 24^th, 2007, 3:59pm

mj,
thanx for posting your old thread about the rc seeds, i cant bellieve you stuck with it as long as you did. I didint think it was boring at all, it was facinating to hear how you figured out for yourself what was and wasnt working for you.
i dont know if the seeds helped me at all or not. my attacks have increased in frequency, but decreased in intensity. maybe due to seeds or maybe due to detoxing and taking less drugs. i have gotten rid of the daytime shadows, and even though i am getting hit about every hour through the night, my days seem so much better without the lingering pressure and pain. in fact, I had more shadow and phantom pain during the year before this cycle started up. i am saying these things today but everyone knows tomorrow could be a different story.
like you said in your old postings, sometimes 2 days during a cycle seems like an eternity, whether those 2 days are full of pain or pain free.

thanx again for going to the trouble to find those old posts, it was really nice of you.

im on day three of detox, only about a week or so until drug free, then 5 days until i will try the seeds again.

chrisw

Title: Re: help, i am running out of options!!!
Post by E-Double on Mar 24^th, 2007, 4:04pm

BE CAREFUL detoxing without proper medical guidance.
None of us know how your body will react and we are not doctors.

I detoxed completely off my meds last year but I was told how to do so. It was rough but at least I was safe.

You do not have to tell your doctor that you want to do so because of the alternatives but do tell him so that he can guide you.

Best of luck and be safe