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Wilson

Questions about sumatriptan

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I need some advice.  My last cycle was over 2 years ago.  That was when I actually found out what I was having and found a doctor who would at least listen.  She prescribed amlodipine and sumatriptan. I also discovered that O2 helped break up a bad CH.  It seemed to work enough so I could work and sleep a little during the 6 weeks I had the CH's.  During that cycle and all my previous cycles, always in Jan. or Feb. , my CH's were always at night about 30 minutes after I went to sleep.  I would have 2 or 3 a night and that's it.  I handled it by pacing, screaming, and pounding on my head.  I could still cope. Then I started with the meds and O2 and then my cycle got really weird for a couple of days then stopped.

 

 after my last cycle I did 2 things, started stocking up on the sumatriptan and amlodipine and I learned how to grow mushrooms.  I dosed with mushrooms several times over the next few months and really did not enjoy the feeling much but I kept taking lower doses of a gram at a time every month or two  just to ward off a CH cycle. I had no idea how to take them , just that they were reported to work.   Then due to work and home life I just stopped taking them for 7 months I also stopped seeing my doctor and felt I had enough meds and I was tired of paying her all the time... ( no appointments, no blood draws = no more prescriptions) I am quite healthy and other than CH's I don't need a doctor.   I had almost 3 years cluster free.  I thought I would never have another CH.

 

3 weeks ago, Pow! I am in full blown cluster hell. I cannot pinpoint anything that would have brought it on except that I stopped the mushrooms.

 

On this cycle I get the CH's all the time, day and night.  Immediately started taking the sumatriptan (oral 100mg) which does work but now I am running out. I refilled O2 and bought spare tanks,  I tried the mushrooms to break the cycle but they don't work either now, then reading on this website I see why they probably are not working. Melatonin did not help either. The sumatriptan is starting to not work as long now, two doses will not take me through 24 hours anymore.

 

The sumatriptan is  not good for your body and it is very expensive and I will be lucky to get a walk-in clinic to prescribe it.

 

My question is:  Should I try to get more Sumatriptan  and try to wait out the cycle? O2 helps but I'm going through tons of it,  should I try to make it 5 days without the sumatriptan and try the mushrooms again?  I don't know how I will do it.

I would use LSD if I thought I could find the real thing but the chance of that is very remote. Without a trusted source I may wind up with some other chemical.

I started the D3 today but do not know if that will work mid cycle.

 

Thanks for any advice!

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There are people who have gone through the hell of abandoning sumatriptan for the five days, and eventually they were glad they did.  Others have not been able to find a way to do that.  Some have found that when they stopped the triptans, their attacks decreased in number and severity.  (It sounds as though maybe you are taking the pills "preventively," not when an attack has started (or when you anticipate one starting).  I don't know that that works.  In fact, for most people the pills don't seem to work in any form, as a preventive or as an abortive.  So you might not be getting much from them in any event.)

 

The D3 will help during a cycle, but for most people that effect doesn't happen quickly (I suppose it depends on what your D level is when you start and how much loading you do to try to raise it quickly).

 

Going back to your other, O2-related post, it is recommended that you stay on the O2 for 5-10 minutes after aborting an attack, since that can help hold off subsequent attacks.  It doesn't sound like you are doing that.  I can't say that your method, sucking from the hose, is a bad idea since you have said that it works effectively for you, but (a) I figure there must be a reason that a mask is recommended; and (B) using a flow that's light enough that you can stop it with your finger might not really be the best strategy.  You want to be able to take big, deep breaths.  Since you say you're going through a lot of O2, I can't help but imagine that a proper non-rebreather mask would maybe conserve O2 as well as being more effective.  You can get a non-rebreather mask from amazon for something like 6 bucks.

 

I think at your other post I suggested energy shots.  Have you tried that?  You say that melatonin didn't work for you.  It's possible that your dosage was low.  In cycle, some people get up into the high 20mgs before they get relief.  It seems you have no pharma preventive.  Verapamil, once it kicks in, can be pretty effective (at high enough doses), and it doesn't seem to interfere with busting.

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Thanks for your response!  I actually wait until I am having an attack before I take more Sumatriptan because I am down to 7 pills now and I don't want to waste them,  after I take one I am CH free for at least 6 hours but they make me feel funny and a little sick.   It does stop the attacks so I can work or sleep a little.   It takes less than an hour to work. Until then I have to rely on O2.

I will check out the mask, I never using the hose straight just seemed like a good idea and it worked.  I will also try staying on the O2 for longer, tried that today and it seemed to hold off an attack until the sumatriptan kicked in.

 

I have been including 2000iu of D3 in my daily vitamins for months now so today I kicked it up to10,000 and will keep it there.  I have tried the caffeine / Taurine energy drink, not much difference but I'll try the energy shots too.

 

I tried the melatonin at 9mg and then close to 20 and saw no difference but I will keep it up.  I think if I do go to the walk in tomorrow I will ask for verapamil, not sure if they will do it but  I think the Sumatriptan is a dead end and I should try to tough it out with these new methods.  I suffered through many attacks with nothing years ago when I did not know what they were, I think I will dump the sumatriptan tonight, tough it out this weekend and by next weekend I can use the mushrooms again.

 

Thanks for your help!

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You'll want to do all the parts of the D3 regimen, not just the D3.  That's quite important. https://clusterbusters.org/forums/topic/1308-d3-regimen/ You'll notice that he talks there about a loading process with much higher D3 levels.

 

Energy shots, even though they're much smaller, typically have more caffeine and taurine than energy drinks.

 

Verapamil should be monitored, so the walk-in might not prescribe it.  And it takes a while for the verap to kick in.  Often a steroid taper is used as a bridge to give the verap time to work.  Steroids do interfere with busting (it is generally believed).

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Wilson, I am a new member take my knowledge and experience softly as I am far from being an expert, but I have been suffering for over 14 years. 

 

You sound like your in my boat house! My preventives are Verapamil 480mG Extended Release tablets and 1000mG Depicote. This keeps the shadows and the occasional random attack away most of the year, now I cycle out once to twice per year. When that occurs the only thing that will abort my attacks is Sumatriptan 6mG auto injector pen, which is a scubQ injection. From my experience, the pill form doesn't work as my attacks come on way to fast for the pill form. All the years I have been on Sumi tell me that it can not even in pill format be used for preventive measures. Oxygen does work for me only if I am awake and catch the attack in time, and I am currently in a cycle and getting about 5 attacks per day but most of them hit while I am sleeping which makes the O2 useless. I can tell you this if Sumi helps take away your attacks and you can bear it, a large bag of ice over the side of my head that gets the attack can help abort some attacks if I catch it in time. The extreme cold basically does the physical effect of a vaso constrictor just as Sumi does to your brain vessels. So the ice may help you. And a cheap bag of ice far exceeds the dollar and cents of using Sumi. I am going to try and start using O2 therapy with ice and my preventives and see if I cannot find a healthier and affordable means of aborting my attacks. I still haven't found a way out of a cycle yet, the only thing that works for that is time. Currently my cycle is 8-10 weeks.

 

Hope it helps.

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Edmund -- Split your trex injections: https://clusterbusters.org/forums/topic/2446-extending-imitrex/  2 mg works fine for most people

Do you have a strong O2 system, with a high-flow regulator (at least 25 lpm) and a top-quality mask (http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit)???

Have you tried drinking an energy shot such as 5-Hour Energy at the first sign of an attack (even when it wakes you up at night)?

Melatonin at night? (Starting at 9mg and working up)

The D3 regimen has been very, very helpful for most people who have tried it: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Some people find that in cycle they can need as much as twice as much Verapamil as you are taking.

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Thanks for all your suggestions, I cant believe what has happened and I hate to jinx myself but here it is.  Friday night I took my last dose of Sumatriptan so I could get a little sleep and prepared to go completely drug free for 5 days relying on O2 and energy drinks alone.  It was very bad and the attacks hit every 20 minutes, knocked them back with O2, Saturday I was up to maybe an hour between attacks, I had my wife take me to stock up on extra oxygen (welding type) at Tractor Supply, I brought my regulator along and needed some before we left the parking lot!  The pain was particularly  intense and I was dreading the next 5 days.  I even had extra O2 for at work, thankfully I can do that where I work. I kept track sitting in a chair, (laying down was out of the question), I noticed the attacks were getting further apart.  I actually got some things done Sunday, slept all night and used a little O2 for a "ghost" Monday morning and have not used any O2 since then!!!  THE CYCLE SEEMED TO BREAK LIKE A MIRACLE!

 

CHfather, I did start the D3 regimen as soon as I read your reply to my post and upped the melatonin to 24mg at night but cut back last night, made me too groggy in the morning. 

I have been taking 10,000 units D3 Long with 500mg magnesium and the rest of my usual vitamin regimen that I normally take.  My normal cycle was 5 weeks or so, this one, if it is really over, was only 3 weeks.  Without your encouragement I would not have stopped the sumatriptan and would have gone out and tried to get more.

Even though I spent quite a bit on extra o2 tanks I don't even mind.  Pain free is so nice!

Another case of modern medicine making me sicker???  Everyone is different I guess. I'm glad I stopped the meds.  Thanks for that advice!

I can tell you I will be consuming my mushrooms on Friday and every 2 weeks or so after that without fail. 

 

Thanks everyone!

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I spoke too soon, I had 2 good nights and 3 days and last night before bed time, Boom.  All night sleep 30min, wake up , back on O2, sleep 30, staying on the O2 longer did not work for me and it seemed like some of the attacks were almost resistant to the O2.  I did come into contact with a huge amount of dust at work and sneezed all the way home, that may have triggered it.   Friday night I will try to end the cycle with mushrooms. Hope it works, I will be sumatriptan free for 7 days then.

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Metatonin helps me now about 80% of the time, 15mg before going to bed,when in cycle.  5mg off cycle.

Sumatriptan gives me rebound headaches.

I take tablets because they prevent a new CH, while on O2, for the next 6-8 HOURS ONLY!

If I take 2 pills a day , or more pills in consecutive days, I will be making it worse.

The only time I would take sumatriptans now is If I have to work and I just can't be on O2.

Injections cause probably rebounds headaches too. I will not take triptans on the weekends and that is enough to break the cycle or at least to have a more predictable attacks.   With triptans it is a never ending long term cycle.

 

 

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