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Terri

Energy drinks

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Hi, my partner suffers from episodic clusters, las year we were lucky and he managed to skip a year, but they have come back this year, and earlier than normal, he can only take 2 sumitriptalin injectors aday, due to the side effects,  and he does have oxygen on a regular basis,  but that doesn't always seem to help, I've just had to sit and watch him go through yet another 20 min cluster only this time hes pulled the muscles in his belly.

I hate having to watch him go thro all that pain, even punching himself in the leg to try n help the pain, I feel so useless I just want to cry, we are sleeping separately as well atm, is it true that energy drinks may help to relieve some of that pain, also what about accupuncher ( sorry my spellings bot that good ) do you think that help 

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energy drinks can be helpful.  Those energy shots can help some and are easier to "chug"  Actually anything that promotes vasoconstriction can help (like caffeine).  Taurine also has some benefit.  He can lessen the side effects of the sumatriptalin by getting vials or dividing doses (search for method).  Usually 0.2 mg is enough and you don't get side effects as readily.

 

Remember suma is a two edged sword and rebound headaches are not uncommon.  O2 first as an abortive, suma as a last resort.  Prevention with D3 is worth exploring.  Read the New Users-Read here first at the header.  Best of luck

 

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Terri, there's a lot of advice here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  

I'd strongly suggest you read it through. 

It could be that he's not using oxygen at optimal efficiency.  Yes, an energy beverage helps a lot of people -- as Pebbles' says, a lot of people prefer the "energy shots" such as 5-Hour Energy, which are actually more powerful than the larger drinks like Red Bull and can be drunk down quickly as he starts on the O2.

You could also see a link there for how to split Imitrex injections, as Pebbles' suggests.  Well, I'll put the link here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

D3 regimen is an essential part of what he needs to do. There's a link within the first link I gave you above.

A competent doctor might give him a prescription for steroids, which might at least give him some pain-free time.  Verapamil is another preventive that helps some people. (All covered in that first linked post.)

 

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Thank so much, will check out the link now, doesn't help that he so negative, I can understand why, hes in so much pain , I told him about the energy drinks but all I got was "i already drink them at work, it doesn't help" , but not gonna give up x

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Being negative is all part of the game, it happens to me all the time. I am chronic so I do not have cycles but deal with this every day every year. I try to take a look at myself from the outside and find it kind of funny that I was chosen to deal with this and was chosen because I can deal with this. I am a big fan of the 5hr energy drinks or anything similar off brand type drinks like this with the caffeine and taurine. Walmart and dollar general both sell drinks like this. For some push ups, jumping jacks or some other vigorous activity can also help lessen the pain at the start of the attack. Oxygen is the biggest help, the faster you can get to it and the faster you can fill your lungs the better. Do you have the cluster mask and a high flow regulator for your tanks?  

Cluster headaches suck but you are in the best place to fight them. read this site as much as you can and ask questions. Look into the vitamin D3 like mentioned by the pros above and read up on busting it could change your and your partners life. 

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On 9/10/2019 at 2:23 AM, Terri said:

doesn't help that he so negative, I can understand why, he's in so much pain , I told him about the energy drinks but all I got was "i already drink them at work, it doesn't help"

A lot of people with CH are negative in the sense I think you are using it -- resistant to things that we "outsiders" think might help them. I include myself as an outsider because I don't have CH, my daughter does. My daughter was so mad at me as I was going about getting a proper oxygen system set up for her!  She had "tried" oxygen with a very ineffective system, concluded that oxygen didn't work for her, and didn't want anything more to do with it.  The new system works great and probably helped save her life, along with other ideas from here, but it's my belief that many people with CH have been so disappointed by things that they hoped would work but didn't that they would rather avoid having that disappointment again than try something else.  It wouldn't be surprising if your partner has had bad or inadequate advice from doctors (as I mentioned, it doesn't look like he was prescribed any preventive) and probably way too much "I get headaches, too, and here's what I do ..." input from well-intentioned people who have no idea what he's going through.  For that matter, you and I have no real idea what they are going through, only that they are suffering terribly. 

Recognizing that everyone's experience is different and I might be overgeneralizing, there are related phenomena that are worth considering in case they might apply to your situation. Like many other people with CH, my daughter only very rarely wants to talk about CH. She just wants to try to forget that it's real. When an attack is over, she wants to go back as much as she can to "normal" life and not dwell. There are a lot of people who come to this board when they are in cycle and stay as far away from it as they can when they're not in cycle. Also, there are many reports about people with CH doing all they can to hide what they are going through from others. There was a woman here some years ago whose husband and family had never seen her having a CH attack. Maybe that's extreme, but we have had many supporters here over the years feeling bad because the person with CH wanted them to go away, leave them alone, when they were having an attack.  I'm going to go ahead and say that I think that's in part because no one wants to be seen being that vulnerable, that helplessly in the control of something so awful. I know there are other reasons, too, but I do think that's one of them.  I was reminded a little of that today in a post by @Dana129, who wrote about watching a video of someone having a CH attack, "I felt like my safe haven had been somewhat breached when someone had posted a video of an attack." So I'm just saying that CH is probably unlike almost anything else in the way that it can push away people who want to help. Many people here have worked that out with their supporters in one way or another, but it can be challenging. He is blessed to have you there. 

 

Edited by CHfather

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CH father I think you're right.. I try to avoid my children and wife from seeing me in pain. I fight almost all my ch in the garage. I don't want my children to worry about me. They aren't little anymore but they along with others don't have the understanding of the amount of physical pain, therefore I think it's pointless to be around them during an attack. I have my diagnosis I do the best I can to accept it. I don't look for simpathy or to make it worse on anyone in my house. Its really not thier problem anyway so why put the burden on them. Help to me is calling the drs for me to make and appt or just a hug. Giving me space to fight it. Talking to others who have ch is where you're understanding will come from. My suggestion is to ask the person with ch what they expect from you or what they need. Ive been pain free for 5 months and this is my first post. You were saying something about some of us staying away from the site while pf and I'm one of them. Mostly because it consumes enough of my life so I owe it to myself and others to live the most I can in-between cycles. Its not any easy thing to swallow know that ch might chase me my whole life. I take my hat off to the rest who stay and help the new comers. I have deep respect for those of you. I hope I don't sound harsh. 

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The sumatriptan 6 milligram injectors only last me 2 hours, then the attack returns. The 100 milligram sumatriptan succinate pills keep the CH away for 6 to 12 hours. The injectors work really fast and abort the CH in 1 to 20 minutes. The pills take 20 minutes to an hour and a half to work. If i had to choose between the pills or shots, I'd take the pills. The relief is longer with the pills.

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Hi 81007!

If your hits are regular in their timing, you might be able to take that pill early. Always get hit at 8pm? Take one at 7pm perhaps. It might help you get relief sooner via the pill. Just  thought.

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As soon as I get a regular attack schedule, it seems to change. I use Red Bull to speed up the medication absorption rate. Usual protocol is 100mg sumatriptan succinate pill, 1 can of Red Bull chugged and hyperventilate oxygen for 15 minutes. I have tried MM the last few weeks and have managed to reduce the sumatriptan to 50mg. I was military and am now retired. But the VA and the military are being very stingy with the sumatriptan. The verapamil I was prescribed made me so weak I had a hard time getting out of a chair. Last night a CH seemed to go on forever. Finally stopped it with a Q-tip soaked in lidocaine stuffed up the nostril. Stopped it within a minute. Sometimes that doesn't work either.

I am going to see if I can get a physician to put me on a treatment of ketamine intravenous to stop my chronic cluster headaches. I am reading good things about ketamine in a sub anesthetic dosage. Hypothesis is that it works by neuroplastic repair.

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Hey 8!

I know several chronics that are having very good results with ketamine nasal spray. From my experiences with the VA that would probably be a hard sell with any of their docs though!  When I still relied on the VA for medical treatment they let me have 9 imitrex dose packs per month....are they only giving you the imitrex pills?

DD

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Hi DD,

           Yeah they are rationing 9 pills a month. I managed to get another doctor to give me Ajovy and sumatriptan injectors. I called TEVA pharmaceutical and they admitted Ajovy does not work for CH. Getting a new civilian doctor soon, if he can't get me the ketamine. I will go to a ketamine clinic.I have had three sinus surgeries and they did not help with the headaches. I was exposed to radioactive beryllium oxide in military service and it has been nothing but a big coverup since then. I have been considering treatment in Mexico as a very last resort. I saw a doctor in Mexico a few months ago and his fee was $8.

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21 hours ago, 81007 said:

The 100 milligram sumatriptan succinate pills keep the CH away for 6 to 12 hours.

I don't know what this means.  Are you saying that you feel an attack coming, take the pill, and then you don't get an attack for 6 to 12 hours?  So maybe you're thinking that the pill acts as some kind of a short-lasting preventive?  I'm not asking these things to critique your clarity -- I'm just trying to figure out what's going on.  Apparently O2 + Red Bull sometimes works and sometimes doesn't.  And it's mysterious to me that your attacks come back two hours after a full 6mg injection of sumatriptan.  It is possible to split those injections, and those who do find that 2-3mg is sufficient, but if 6mg is so inadequate, maybe you don't want to.  https://clusterbusters.org/forums/topic/2446-extending-imitrex/

A few thoughts:
Have you looked into the D3 regimen that has helped hundreds of people?  http://www.vitamindwiki.com/tiki-download_wiki_attachment.php?attId=7708
Is your O2 system optimized (flow rate of at least 25lpm; high quality mask)?
While Ajovy doesn't work for CH, Emgality might.  Have you tried getting that prescribed?
Were you doing MM without the recommended five prior days off of triptans?  (Could be that your dose is so low that it doesn't matter as much, but the full 5-day detox is recommended.)
You might give an energy shot like 5-Hour Energy a try instead of the RedBull.  The shots actually have considerably more caffeine and taurine (considered to be the effective agents) than the full-size can of RedBull, and they're easier to get down faster.

Of course, considering what you have said, my big question is whether you actually have CH, or whether you have been misdiagnosed.  Have you taken indomethacin?  If so (and if you remember), at what dosage and for how long?

 

 

 

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I have an attack,  I take 100mg sumatriptan. Pain goes away for 6-12 hours. I wash the pill down with can of redbull and hyperventilate O2@15 lpm for 15 minutes. Usually stops the attack. 95% of the time...

Verapamil had my blood pressure so low, I could not get out of a chair.

No indomethacin yet.

D3 does nothing.

Got the mask.

My guess is I have a case of acute chronic cluster headache that is extremely refractory. Usually 3 attacks a day.

I seem to have lots of triggers. Smells, foods, weather, you name it, I probably have it. Processed foods seem the worst.

I don't pace or fidget when I have CH. I lay down in the bed and try to stay calm. Moving about makes it worse.

I asked for Emgality and got Ajovy. Doctor did not listen. 

I am getting a new neurologist this month. Seen about 6 doctors over the last 3 years. Finally got a diagnosis April 2018.

 

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Since I asked you all those questions and you answered them, I feel compelled to respond. First, to say I'm really sorry for all you have been through and are going through.  Beyond that, I have very little to offer.  I'd say that trying indomethacin seems to make sense.  As you probably know, it does effectively treat hemicrania headaches that are CH "lookalikes" (but hemicranias are typically (though not always) unresponsive to oxygen).  I assume you mentioned that you have to lay still during an attack because you know that is contrary to a CH diagnosis. I'm not saying it rules out that diagnosis, although you would be the first person with CH that I've seen in ten years at this board who can (or must) do that.  15lpm is fine as long as the bag on your mask is full whenever you're ready to inhale using the most effective method. If the bag isn't full at that point, a higher lpm will lead to better aborts.  When you say "D3 does nothing," I'm just making sure that you mean you have tried the full D3 regimen that I linked you to.  You could have your D level checked with a standard blood panel at your next appointment.  I hope you get more help, or at least sensible prescriptions, from your appointment this month.

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Last year I sliced my hand open. Got six stitches. A couple times I almost burnt the house down, left food in the oven. With the CH's I tend to want to stay still as possible. I just got over of a CH the other day and was doing the laundry. When I opened the clothes dryer door, the heat made my head hurt again. I closed the door and went to lie down. I sometimes get a headache from going outside in the heat, I quickly rush back in the house. Southern Colorado is having a heatwave and is a desert , so it is very dry.

So basically I find that being still keeps the pain to a minimum, while raging, shouting and moving about is counter productive. I fear collateral damage from the CH. I keep trying to explain to the local VA clinic that driving 300 miles round trip to get Sumatriptan from Denver is dangerous, but they really don't care. Military facilities in Colorado Springs refused me more Sumtriptan last week too. All my concerns seem to fall on deaf ears. And they all wonder why veterans commit suicide...

 

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Hey 81007

So I used the sumatriptan pills one cycle kinda like youre describing but like you said they only cover so many on insurance. The pills are cheap though I used to get a box of the 100mg for under 20$ out of pocket after my insurance wouldn't cover them. As long as you have a script call around for out of pocket prices.. I used to use the 50mg and get 4 to 6 hr breaks from headaches and the 100mg would last about 8 to 10 so I would take them at night to sleep. The only reason I stopped that way because when they wore off I would get my attacks and it seemed pointless after a while. 02 and energy drinks work for me now. Rather quickly too.

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