I'm in my 13th week longest cycle ever. Went off the meds. 25 mg Topamax twice daily, 50mg. per day total, with Sansert 2mg. three times a day 1 tab am., one tab mid-day and two tabs at bedtime, 8mg per day total, combined with 12mg of melatonin. Neuro. gave the blessing about getting off meds., esp. Sansert, long term side effects etc. I felt they were not helping much, appears I may have been wrong.....
   While on the meds. I could get approx. 6 hours sleep per night, since going off two weeks ago, the beast hits 2 or three times per night for the past two nights. I only take 12mg of melatonin 1 hour prior to bedtime currently. Few day time hits, just constant discomfort.
    I have a neuro. appointment this coming Wed. any suggestions as to a cocktail that might work.
     I've tried Verapamil, Depakote, ergotomines and caforgots in the past with little or no results. Perdnisone worked only once, years ago, but the last time I tried it ,I suffered Anxiety attacks which I never experienced in my life, a rare side effect, went off and things were cool again. I really don't want to go there again.
     O2 has been my first line abort, and I hadn't touched a needle in about 12 weeks, until last night about 2:30 am, after two attempts at 15LPM for 10 mins. per try. I used an Imitrex infection to finally put the monster back in the box. I cut my Stat. Pens into thirds with very good results, makes the Imitex go further, as you know.
      So if anyone has any suggestions fire away, I'm begining to really get pi$$ed at this point. The nights suck ,days are more bearable , but constant discomfort to Kip 2 or 3 all afternoon.
       I've fought the beast for the past 15 years, episodic, with varying degrees of success, this cycles dragging on way to long and frankly I'm starting to get concerned. I have noticed the cycles get longer but the remission periods are getting long as well. Maybe it's just making me pay dues for a longer remission again. I hope.....

Thanks,
Baer

Hello,
   I have not even heard half of the drugs you just said. Im real sorry your cycle is hang long, Preds always busted it up for me ( thank god). Have you ever heard of clusterbusters?  read up, you tried just about everything so why not?? Good luck..


                                 Coach Bill
                                                   

Ask your doc for a trial of ergotamine, 2mg SL tabs (if they are still on the market), taking one about one-hour before bed. It's an old treatment to prevent night attacks and some folks have had good success.

INCREASE the melatonin. The research is suggesting and thus docs are recommending upwards of 24 mg.

good luck

I've been taking Kudzu myself (along with Melatonin), and about 3 days ago I increased my dosage to the recommended dosage (2 pills 3x daily) which helped to eliminate my constant day long shadows.  It also helps me abort my nighttime attacks very quickly now with the O2 because the severity is so much less.

E-Double wrote on Feb 28^th, 2009 at 7:32pm:

INCREASE the melatonin. The research is suggesting and thus docs are recommending upwards of 24 mg.

24mg? I stumble to the bathroom if I've taken 9mg.

Wow. I better make sure I don't have to pee all night if I ever take 24mg.

Or wear a nappy.

That is a very very low dose of topamax that you tried.  My neuro had me try 200mg.  Then when I had tried everything possible to no avail I got a referal to a ha clinic.  I was put on 600mg of topamax and told that 200 was a low dose.  So you may want to talk to your dr about upping that dose.  Good luck.  

By reading posts here in the past, I started taking Melatonin at night to help me get some sleep.  I also read here to try decongestants at night, and take magnesium supplements.  So 30 minutes before I go to bed I take:
up to 9 mg of melatonin
250 mg of magnesium
2 Night Time decongestants
I believe that this helps me get a few solid hours of sleep, so I can fight back later.  
Also see if you can find more info about clusterbusters.  It really works!  I know it's overwhelming when you have been fighting this long, but it you can find some it just might help!
Good luck,

I'm so sorry to hear you are going through this.   :'(  There is nothing more frustrating than to be woken up night after night by the beast.

Personally, I don't think more melatonin is going to help you sleep better in you're in the middle of a cycle.  If you are having attacks that wake you up at night, no amount of melatonin or even sleeping pills will help you sleep through that.

Abortives are your best friend right now.  If O2 works, stick with that.  Put it in a location where you can get to it quickly and easily.  If you're not at home, maybe Imitrex or Zomig.

The other drugs you are taking are preventatives.  Be careful in making any drastic changes to these during your cycle as the side effects sometimes just make things worse.

Get lots of rest.  Drink lots of water.  Get a massage.  It won't help the pain one bit, but it might help your body relax.  If you're struggling with anxiety, the name of the game is coping.  Pamper yourself as much as possible.

Hang in there. . . :)

toader wrote on Mar 11^th, 2009 at 10:57am:

Personally, I don't think more melatonin is going to help you sleep better in you're in the middle of a cycle.  If you are having attacks that wake you up at night, no amount of melatonin or even sleeping pills will help you sleep through that.

The purpose of the melatonin is not to get people to sleep through a cluster headache, but to prevent the headache in the first place, which allows for better sleep.

Melatonin is most famous for its role in sleep, but it has many functions in the body - it hits some serotonin receptors, it can improve mitochondria function, its anti-inflammatory, etc.

Here's a study that suggests that melatonin doth have power to sooth the savage beast's attack on the hypothalamus ... it showed that melatonin blocks the serotonin-2a receptors in the hypothalamus/pituitary/adrenal system.  That overlaps with the mechanism of other effective treatments (olanzapine, kudzu, clusterbusters, etc).


Quote:

Brain Res. 2000 Mar 31;860(1-2):112-8.    Melatonin reversal of DOI-induced hypophagia in rats; possible mechanism by suppressing 5-HT(2A) receptor-mediated activation of HPA axis.    Serotonin type 2A (5-HT(2A)) receptor-mediated neurotransmitter is known to activate hypothalamic-pituitary-adrenal (HPA) axis, regulate sleep-awake cycle, induce anorexia and hyperthermia. Interaction between melatonin and 5-HT(2A) receptors in the regulation of the sleep-awake cycle and head-twitch response in rat have been reported. Previous studies have shown that melatonin has suppressant effect on HPA axis activation, decreases core body temperature and induces hyperphagia in animals. However, melatonin interaction with 5-HT(2A) receptors in mediation of these actions is not yet reported. We have studied the acute effect of melatonin and its antagonist, luzindole on centrally administered (+/-)-1-(2, 5-dimethoxy-4-iodophenyl) 2-amino propane (DOI; a 5-HT(2A/2C) agonist)-induced activation of HPA axis, hypophagia and hyperthermia in 24-h food-deprived rats. Like ritanserin [(1 mg/kg, i.p.) 5-HT(2A/2C) antagonist], peripherally administered melatonin (1.5 and 3 mg/kg, i.p.) did not affect the food intake, rectal temperature or basal adrenal ascorbic acid level. However, pretreatment of rats with it significantly reversed DOI (10 microgram, intraventricular)-induced anorexia and activation of HPA axis. But the hyperthermia induced by DOI was not sensitive to reversal by melatonin. Mel(1) receptor subtype antagonist luzindole (5 microgram, intraventricular) did not modulate the DOI effect but antagonized the melatonin (3 mg/kg, i.p.) reversal of 5-HT(2A) agonist response. The present data suggest that melatonin reversal of DOI-induced hypophagia could be due to suppression of 5-HT(2A) mediated activation of HPA axis.    PMID: 10727629 [PubMed - indexed for MEDLINE

Thanks guys, the night hits continue but I have 02 within easy reach, aveage three to four per night, every two hours. The beast knows how to keep time pretty well.

I have found that if I just get back into bed, I can usually doze till the next hit. Funny how your body seems to adjust, it sucks mind you, but at least I get some rest.

The fight continues....

Baer

Hang in there.....been away from the board a couple of days, have they increased your lithium yet?

joe

Joe,

I went for my first labs since starting Lithium Thur. morning, I'm hoping the doc. will get back to me today. I talked to a physicans assistant late yesterday and the results she needed were not ready yet.

Nice of you to check in, I apperciate it, I hope we can get this under control soon, it's wearing me out.

Last night was a long one and I have scheduled a trip today that requires a lot of windshield time. It's gonna ge a long day. I had no hits during the day yesterday and hope for a repeat perfomance.

Baer

I'm with e-double. I take 15 mg usually. Shouldn't hurt to try it and if it doesn't help quit it.

Like with anything, internet advice needs to be verified or at least discussed with your doc.  Don't mess with meds or you could wind up dead.

That being said, I like to start off slowly with meds or other pills.  I started with melatonin at 4.5mg with good success.  My body builds up a tolerance to it (and a dependancy), so I have taken as high as 10mg.  The warning label says not to exceed 3mg.  I also take benadryl with the melatonin, between 50 to 100mg.  This cocktail seems to work well and I estimate has reduced my nighttime hits by 50% or more.

Hope you get some relief.
B$

My GP tried messing about with a mix of low doses of a range of drugs *silly sod*.
In the UK the guidlelines are to try a low does of each group of drugs and step up once every two weeks starting with the most effective drug known =for the specific headache unless there are counter indications, side effects or it plain does not work over two months.

Okay that level of topamax would not act as a prevenative in migraine much less CH its far too low.
That is a week 3 step up starter dose for a small female.  ::)
[I was shocked when I read that]

I am really sorry its throwing you so many nasty punches and robbing you or rest, that is plain not fair.
Hope between you and a good neuro you find something to force the thing back behind bars for a bit so you can get some sleep.