Hey Guys,

I want to  do a little survey if you all don't mind. All I want in the reply is  1) What meds are you currently taking and 2) How many headaches (on average) are you getting a day.

Your input is greatly appreciated.

Chris

Just tapered off lithium (yesterday was last dose). No preventatives currently.

Getting hit 6-8 times per day.

Forgot to add: Trying to judiciously use triptans - only when this weak-assed human can't take it anymore. Averaging once per day.

Thanks Brew!

Come on guys, 17 views and one reply >:(

It's 30 seconds of your time. :'(

Chris

I am not in cycle, but this is my formula during the year and during this past cycle.

I consume 25 rivea corymbosa seeds once a month as a preventative.  I think because of this, my last cycle only lasted 14 days with 1-2 CH/day and I only had one cycle for the entire year compared to two.
So I went from 8 weeks of pain last year to 2 weeks this year.

I used a total of (10) 2 mg Imitrex injections in that two week period only at work.  Monster energy drinks during the first signs.  Exercise, avoiding triggers etc....  9mg Melatonin before bed each night.  I don't have O2 at the moment, but I expect that to be my MAIN abortive next cycle.  This can reassure me that the seeds are working correctly.  As we know the triptans and melatonin can interfere with how they work.  I'll have O2 when I get to my new neuro in December.

approx 40-45 rc seeds every three months as a prevent.  I do not take any Rx meds for ch.

0 headaches per day.  I have had only one ch since the end of May, 2009.  :)

Beth

Without meds I was averaging 4-6 a day. I went on Lithium and Verapamil and reduced that to 2 a day. My cycle ended about 3 weeks ago when I was on verapamil (320 mg.) only. I think Lithium reduces the frequency of the HAs and suspect verapamil ends the episode.
Jim

1.)   a.  topomax 50 mg daily
        b.  no caffeine

2.)  0 CH's

was getting 8 ch/day.  I am on fentanyl patch and am getting 0 hits for last 9 years.  However, please note that I tried many, many, many different meds to no avail.  This is a last resort.  It is addictive and otherwise provides me with no side effects however, many side effects are listed and I am just one of the lucky few.

Without meds...3 to 6 CH's per day

With meds...3 to 6 CH's per week

Meds... 3 or 4 "Nature's Way" Kudzu, 1,000 to 1,500mg of Taurine per day. 9mg of Melatonin at bedtime. Hot coffee for shadows. O2 for hits.

Sorry, but this took me 1 minute, 47 seconds!  >:(   ::)

Karla, as I wouldn't suggest using opiates to fight CH, if it works for you, that's great.  I assume you are closely monitored with your doc with that because it's more powerful than street heroin in some cases.  You may not feel side effects especially if you're using very small doses, but  I would be afraid of heart problems etc...  As we all say, what works for some, won't work for others.  Sorry for being nosey, I was just curious.

Daily Year 'Round
25mg Paxil
!0 mg Amitriptaline
10 mg Verapamil

Daily During Cycle
25mg Paxil
!0 mg Amitriptaline
60mg Verapmil
2.5mg Zyprexa to abort
(I have 4 mg Imitrex for emergency...have never taken it but probably should)
(I use to always use Nasonex (steriod) but my insurance wouldn't pay for it this time and I missed it.)

Most effective Rx over the years of many meds...Verapamil.
I have cycles once yearly for 8 weeks...Fall, but use to have them twice yearly for 8 weeks...Spring/Fall
I have 1-3 hits per day until meds kick in.  Usually have 1-2 days per week with no HA.
When I started Verapamil, I skipped 2 years.

Joni

Thank you to all that replied. I am going to try and put a litle something together of what dosages and meds seem to work best overall.  I have alot of time on my hands since losing my job to mexico. 

Please keep them coming, so far it i under a 10% post rate. you guys can do better. If some choose not to make it public you could pm it to me and I assure you no names will be used.

Thanks again

Chris

P.S. Weatherman, unfortunately there is nothing I can do to get you that 2 minutes back, however you could try typing classes ;)

Please see the cluster survey button on the left side of your screen.  If you click on this button it will bring up a survey to take.  However, it has a button at the top of the page that you can click on to see current statistics for the question you are asking plus more.  It is toward the middle of the survey report.  Hope this helps answer your question more quickly.

Taking 1200mg of lithium and 480mg of verapamil - 1 to 2 hits a  day.

360 mg Verapamil SR per day

Kudzu capsules 2x per day


4-5 hits per week before adding kudzu

2-3 hits per week after adding kudzu

ClusterChris wrote on Oct 16^th, 2009 at 4:18pm:

P.S. Weatherman, unfortunately there is nothing I can do to get you that 2 minutes back, however you could try typing classes ;)

[smiley=crackup.gif]   [smiley=bigtiny.gif] [smiley=damncomputer.gif]

Ok, I deserved that.  ;D  And yes, I do need typing lessons!

My cycle just recently ended (I hope), but I was having 1-3 headaches a day.  I was on 2 prednisone tapers (each 6 days long) and that blocked all but one headache (although I didn't care for the side effects or the withdrawl afterwards), O2 was working maybe 40% of the time (all previous cycles it had worked about 90%) and Imitrex injections when all else failed (usually once a day while not on prednisone). 

Thanks again guys!

Karla,

I have seen the survey, what I want to see is the connection with meds and amount of hits . And that survey is over 10 years old now.

Chris

Melatonin and oxygen
0-3 / day

I have them chronically...3-4 a day...Currently on nothing...Tried Verapamil and Topamax...to no avail...I use trex sometimes and trip injections. They work well for me but I haven't found any preventative yet..

Medication:

Verapamil 120mg daily
Oxygen (when needed)
Imigran injectable (I haven't tried this really as I don't ever feel in control enough when a bad one comes on)
Solpadol 3000mg daily (deals with constant migraine/tension pain)
Pizotifen (for migraines)

Headaches:
I have about 10-14 shadows (KIP3-5) daily and a very bad cluster (KIP7-10) twice a week.
I also have problems with ringing in my ears, double vision and constant tension/migraine pain.

I have only just got the Verapamil and Oxygen (yesterday) so don't know how much of an effect this will have on the above information at the moment.

PFDAN everyone

Edit - Missed off Imigran

Verapamil SR 240 mg morning + 120 mg night as preventative.
When the beast begins to make it's presence felt: -
2 x 500 mg Paracetomol + 2 x 15 mg Codeine immediately,
then high flow rate oxygen for 20 to 25 mins,
then 1 x 12.5 mg Almotriptan, followed around 4 hours later by another 1 x 12.5 mg Almotriptan.
I bail out of this escalation if and when something begins to take effect.
Points to note: -
Only permitted "judicious use of Almotriptan" by consultant neuro after 1 mini-stroke (TIA) episode and told to use Paracetomol and Codeine initially instead, but it often has little or no effect (surprise,surprise!).
My CH is not 'classic' in the sense that I usually get hit once each day almost every day, starting in mid afternoon and lasting into the evening, sometimes still in evidence when I hit the pillow. Never strikes during night.
Just gone 5 days without a CH visit for first time in 8 or 10 years  - keep your fingers crossed for me.
Cheers,
JoeKen.

Episodic.....usually hit 5.30pm.......7.30pm and an hour after sleep ( the biggy ).   Started prednisone taper followed with Verapamil 160mg daily....oh, and O2 ALWAYS on standby.  Two weeks into the Verapamil all I now get are shadows (at the times mentioned) Ice packs work for these annoyances.  Hopefully got a lassoo on the bastard   :)

Archie

1) None
2) None

Was getting them every night at 11:31 to be exact...an hour after going to sleep.  Started kudzu and sometimes Taurine.  The kudzu seemed to work as I didn't have a headache for 6 nights.  Last night the bastard snuck in again.  ( I'm chronic, as it has been relentless for a year and a half).  Still waiting on my oxygen from my doc.

Medications

Prophylactic doses
Verapamil:  480 mg AM (2 X 180 + 1 X 120)
Topomax:  100 mg bedtime

Abortive doses
Imitrex nasal : 20 mg allowed twice daily

Also use O2 at 15 lpm (highest regulator we can get here in Ottawa)

Number/Intensity per day

2-3 Kip 4/5 right now after nearly 12 weeks.  By random chance, I had a Kip 7 in the GP's office last week during a follow up which really opened her eyes  ;)  Dearly hoping I'm on the end of this cycle as I'm running out of sick leave and getting really antsy that I may be heading into chronic  :'(

Thanks guys and Gals Please keep them coming I know there is alot of you that can take a minute to respond.

Chris

Jeremy's Dad, I think the same thing when my cyles go longer then normal. Don't worry about it I just had my longest cycle to date and am all good now. 17weeks >:(

Whilst in cycle I can get anything from 6 hits or more per day.

Medication...I'm not on any preventative meds.
I do the usual Prednisolone taper and then its on to my abortives like 02 and imigran injections.

Good luck with the survey and please let us know how it went...!



Lefty..!

Currently taking verapamil.. on my way off of it on to lithium. And I get one headache a day usually

Would you like and answer from my sister that is not on this site?  She gets 1-2 headaches per day and takes nothing but Imitrex injections.  Since she started this, she has no shadows or clusterbrain feelings and her cycles are shorter.  She has the worst Clusters in our family...since she was 16 and is now 62.  She says she doesn't even dread them anymore and it was truly a disability most of her life that she constantly feared.  She had them twice yearly for 6 weeks, but much shorter now.

Joni

no meds, waterx3, awaiting O2 - 5 to 6 hits every day from 1 hour after bed through to late morning, getting worse, lasting much longer, week 5 now...  RC seeds on order

1) 2 613mg Kudzu x3 a day
     O2@ 25 lpm for breakthroughs

2) 0 hits if I don't miss dosages (usually)
       shadows (k3-k4) 2-4 times/day