help needed please

[bob29]

I started my first cycle about 18 months ago, scared out of my mind! I finally got to a Nero and got put on Verapamil  few weeks later the pain was cut in half and i also got fewer hits. I had also found this web site about that same time. I was reading day and night more info the better. I found some relief that there were other people just like me. I got o2 and a non re-breather mask , that was a gift from god let me tell you. I soon got my first  RC seeds trying to bust. The first few time i didn't take enough by the 3rd time i took 75 seeds crushed soaked in water and lemon juice for hour and swallow all of it yum. i felt some weird stuff in my head on top of feeling no pain. well i didn't see any relief from the seeds but i was also on Verapamil the whole time find out that's a no no! my cycle soon ended 3 months of hell i cried so many times after big hits because i was completely on empty after.... I found mushrooms a few weeks after my cycle so i grounded them up put into 00 pills and bagged them up put in glass jar and friezed them.. I started  my current cycle about 4 weeks ago, i have been on the d3 regime since last cycle too. well i tried to bust with mushrooms 3 times now 1.5 g first  time i felt it kick in about one hour after taking it . I didn't get any relief. 5 days later take 2 g 2 days pain free. third time 3 grams what a ride, i slept all night to wake up with a good hit today and another around 1 pm today heavy shadows all day pound red bull and monster all day. i am on amitriptyline -Prozac i really don't want to play with that because i am already not feeling so good about life kinda scary for me. what am i doing wrong what else can i do? is this normal i only have enough m for one more dose. i really don't want to get back on Verapamil. please help me. i know this is a long post but i wanted to give you as much info as i knew you would ask for!!!

[Tony Only]

Other folks here can guide you better with busting than me. You are now off the verpamil right so seeds could be an option, easy to obtain when you run out of mushrooms. You can find liquorice root protocol here in the message board, it has been good to me but can not be used with medication. Here's a direct link for the article http://tonyonly.pp.fi/ch/ch_liqoriceroot.htm

I am following Facebook mostly (there is a great group called Cluster Headaches) and it really looks like D3 vitamin regimen is helping lots and lots of folks. Maybe you could adjust that and find relief? It takes a little researching what you personally might need and blood tests of course to find out your levels. All the best

[CHfather]

bob, thanks for coming here, although we are all sorry you had to.  You did a great job providing information.  Others will have smarter things to say than I do. First, I just wanted to say about your fear and sadness that there probably isn't anyone here who hasn't been where you are or had a loved one who has been where you are -- so keep talking, about anything you want.  There's lots of "venting" here -- everyone understands.

I'm afraid that the Prozac, as an SSRI, could be a blocker of your busting. The amitryptilyne (typically Elavil), which also affects serotonin levels, might also be a blocker.  I don't know enough to advise you about this, but I bet someone here does. (Elavil once was extensively prescribed for CH -- I don't know if it still is -- and it had a weird track record of helping some people a lot and others not at all. Sounds like you're in the latter category with regard to CH, but maybe it's helping some with your mood.) 

You can't just jump off the Prozac, because of SSRI withdrawal symptoms.  I'm hoping someone can help you think about that issue, and about the effects of big doses of LSA or psilo on top of those meds.

Although verapamil can block busting, there are several people here who have had some success with busting while taking it at fairly low levels.

Since you apparently took only one good-sized dose of seeds, and you were also taking other things that could be blockers, there isn't really any basis for thinking that seeds wouldn't help you (they do help most people) under the right circumstances.

Have you ever used imitrex?  That's a kind of heretical question here, but I'm wondering whether maybe the best thing for you to do is to get through this cycle with the most effective pharmaceutical meds you can get and then sort out the rest.  The D3 can also take a while to start working, and as Tony says, it's important to be doing that right.  In case, you haven't seen it, here's the file about that: http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1314134804.  If you have any questions about the D3, you'll probably get a quick answer if you post them over at the CH.com board, using the links in the file I've just directed you to.

I'm sorry I can't give you better answers, but I wanted to respond to you quickly and maybe contribute something to the conversation.

   

[Bejeeber]

Hey Bob - it sounds to me like you're doing an awful lot of stuff right, and that you're well researched indeed.

The fact that you got 2 days PF after 2g seems encouraging, and please keep in mind that some post dose hits are common even with very successful busts, so you still could see some real results from this 3g whopper you just experienced.

One thing I can think of for your future busting strategy is to maintenance bust between cycles, because it can be easier and more immediately effective that way. You probably already knew that, but this is only your second cycle, so how could you guess when the next one would start up?  :-?

That was a good first post ya left there, thanks for including the essential info. 

[Edit: I see CHF slipped a reply in while I was still formulating mine. That happens a lot LOL. About the SSRI issue - others have successfully busted while on them, so it's not necessarily a deal killer IMO.]

[BostonHeadacheDoc]

Dear Bob,

From a medication point of view, have you ever tried steroids? Prescribed steroids that is. Now I know some people have strong opinions on this, but at least it can give you some temp. relief- with a course of prednisone for 10 days or so.

Agree with the Imitrex which is sumatriptan, given subcutaneously at 4mg or 6mg to abort an attack. You should stock up on those when you are quiescent!

Kudzu would be something else to try along with nightly melatonin.

The amitriptyline dose could be increased as well, but I do not like to overly mix an SSRI and amitriptyline.

Hang in there,

BHC 

[bob29]

Thanks for the fast feed back, Bejeeber, CHfather ,Tony Only ! It is so hard when people around you don't understand what its like. being late to work, no knowing when you are going to get hit next. Last Saturday I'm getting hot and heavy with a girl and just about the time I'm about to get lucky i feel the pain start working up my neck and i run to the oxygen, needless to say i didn't finish what i started. I have gotten a prescription for imitrex the pill.. i hate taking them plus they are not cheap. My mom takes zomig so i hit her up from time to time 30.00 a pill that's allot. i only take tex and zomig when at work or long ways from my oxygen. I just feel so hopeless.... thanks for the replies again! yes seeds are an option tony.. yeah just not sure about getting off antidepressants cold turkey makes me nervous.. but then again it only 5 days!!! I also smoke has anybody quite and seen results?

[Bejeeber]

I have gotten a prescription for imitrex the pill

A couple things about that in case you're not already up on it:

1) the injectable form is significantly faster acting tends to be much more effective for us CH'ers. Half doses (3 mg) or less will reliably abort an attack, and of course dramatically conserve fund$ and lessen side effect risk. Instructions for administering partial doses here:

http://www.clusterheadaches.com/imitrex.html

2) From what I've seen the Imitrex, Zomig, etc. triptans will likely more completely block your busting efforts than Prozac or Verapamil will, and are generally detoxed from for 5 days before a bust.

[CHfather]

As BostonHeadacheDoc says (or suggests) in his post, you really want injectable imitrex. You're just guessing with the pills if you try to time them before an attack, and they're pretty ineffective once an attack has begun. 

Can you not have O2 at work? What about in your car? 

No -- you can't go off the antidepressants cold turkey, or at least most people can't and you probably shouldn't (in my opinion).  Gotta do a taper, I think.  But Jeebs is saying maybe they're not blockers, and he's also right that it could be "post-dose hits" that you've been experiencing with the psilo, and that would be a positive sign.  (Post-dose hits, or slapbacks, are very common when busting -- attacks that are more severe than your typical ones, or occur at odd times. Usually they only occur with the first couple, or maybe three, doses. They're considered a good sign that things are being shaken up.  I can't tell enough from your description to know whether they sound like slapbacks, or not.)

It sounds like your attacks generally do not occur at regular times -- Is that correct?

Can I tell you two things that are good news?  First, you got a fast diagnosis. I was reading the other day that the average time between a first doctor visit for CH and an actual CH diagnosis is seven years!  I know more than a few people who went for many years being misdiagnosed and mistreated.  And second, you got oxygen, which, as you say, is a life-saver.  Not only do the misdiagnosed people not get oxygen, but very often even people who are diagnosed correctly have doctors who don't or won't prescribe oxygen.  In a recent study, almost half of CH patients were not getting oxygen prescribed to them.  I'm not saying you should count your blessings, because there's no blessing in having CH (some silver linings, maybe), but you've had some good fortune in your diagnosis and treatment, and you're in the right place for things to get a whole lot better for you.

[Pos1964]

Hi Bob,

I think everything is said already and I know from experience that what is written here, can help you, these are very experienced people here!

The only thing I can add is that: no, you can't quit could turkey from antidepressants, it's just not save to do so.

But the good news is, the shrooms are also working for depression. My partner Jan is a chronic CH, he has had a lot of depressions in the past. Since he started busting, he feels so much better and hasn't been depressed at all ever since while this time of year (winter over here) he normally gets a depression.

I should note that he's also on the 3D regimen which is also helping.

Best of luck!

[MoxieGirl]

Hi Bob,

Looks like you've come to the right place for good advice.

This demon, as I call it, is a bugger to kill, if killing it is even possible. There is no quick fix (deep brain stimulation maybe). In my experience, shrooms and/or seeds are the best thing going.

Just over a year ago I was putting a date in my calendar for when I was going to exit planet Earth if I didn't find a solution before then. That's when I started on mushrooms and seeds. The reason I was at that point in my life is because I've had this demon since 2007, and a long cluster free gap was 3 weeks. In 2011, they got really bad. 1-5 hits every 2-3 days for the whole year. By Nov 2011 I'd had enough.

In December that year I started with my first dose of seeds and some mushrooms a friend gave me. I've been busting off and on ever since. Have done 20 something busts, and now enjoy the occasional 20 days or so between attacks.

It is getting better. It does get better. You just have to hang in there and trust that things are working, even if you don't get immediate results.

The slapbacks (the 2 or 3 hits you get within a few days of busting) are not fun. But they are a sign the demon isn't liking what you are doing, and that's a good thing.

There are two times, in my book, when getting an attack is particularly bad. One is when driving, the second is when you are in an intimate situation with someone, or even just yourself. I used to get hit a lot then. Very frustrating.

Hang in there Bob.

MG

[Ajax]

I tried everything and was a 10+ year lab rat until my wife found this site.  Imitrex Injections got me down from 3+ hours per hit down to 30 minutes or less. 

My first busts were very difficult due to all the medications i was trying.  Prednisone was my only solution and that stuff sucks!  When I cleaned my system and then busted I was CH free for 3 years!  You have come to the right place, these guys know what they are talking about.

[spiny]

Bob,

Never be concerned about your post being too long or anything else here!!! Info is good for members so they can advise and it is also good to state it and get feedback that says 'normal'.

It is much harder to bust a cycle than avoid it with maintenance dosing. Just to let you know. It sounds like you are approaching it correctly. As stated above, taper off the Prozac when you decide to throw it overboard. As Doc said, a short course of Pred. can be a BIG help. Long term use can cost you your hips! Short term, it is the only pharma that really helped me. Tapering off of it was bad as my cycle was not terminated and came back hard.

Slapbacks are a bitch. Wrong time of day/night, worse, different all around. But, they are a good sign and hopefully that is what you are experiencing now. Bottom line, they run for a day or three and then are gone. When the head says 'hello' again, it is time to bust again.

The dragon is devious. Barometric pressure drops are really hard on many sufferers. Right now, there is bad weather all over the country with baro drops that kick in the CH for many. What I am trying to say is, there is more to this condition than we often think of. You bust, it sucks, the bust must have failed. Not necessarily.

Give that last bust a few days yet before you decide. If you are still in a really bad place, take Doc's advice and get a steroid for short term relief. But, that two days that you were PF the last bust indicates, to me, that you are getting there. It is not an easy or always short road, but it definitely goes to a better place than where you are now. Getting the cycle killed will most likely improve your mood so much you won't want the Prozac!!!!!

In 2011, I had a 6 month cycle. In 2012 it lasted 7 months, all night, every night. This year? The occasional 'hello'. Nice difference. 8-)

BTW: Congrats on the quick diagnosis and getting the O2! 8-)

all the best,

spiny