Was speaking with someone who suffers from clusters and says he was prescribed Sativex and it changed his life. Was wondering if anyone has had any experience with this.  Hubby is in a new cycle and has not been over with the last one for a year yet...he's not taking this well because previously he was on two year cycles.  Already has his o2, but attacks are really taking a toll.  I am researching to see what other options there are without creating more problems due to side effects, etc..  Any input?  Imitrex nasal worked pretty well, but he really didn't like the heavy feeling in his head and feeling like he was under water at the deep end of the pool. 

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Also it is pain medication, so whilst it may help with that side of a CH, it won't abort the CH itself.

Is hubby using an effective preventive? Has he tried the vitamin D3 route that many of us have found success with?

How is he using his oxygen? Does he have a high flow rate 15lpm or higher? Using a non-rebreather mask?

The oxygen helps but obviously doesn't stop the constant attacks that are wearing him down.  He has an oxygen setup that works for him, not what you are recommending though.  Taking all into consideration, he's gone with a concentrator which I know you all say is not effective, but does help while avoiding the constant refilling of tanks, fear of falling asleep with the o2 and it running out, etc.  This is what works for him.

All drugs have the tendency to bring on other problems and he does not want to go that route, so a preventative is not really something he wants to do.  The D3 didn't do anything for him.  Although the imitrex nasal helped with the pain, he doesn't want to take it due to the other effects it has.  He really wants to try an 'alternative' that seems to show promise on reading about it, but the problem is getting it.  It seems to be the only thing that is a promising solution with minimal side effects.  Some may say he's not trying to help himself because he's not taking advise of others on here, but alot of it is just coming to terms with ones situation, then finding the best, manageable alternative that one can accept.  Not always cut and dry to say the least.  This is why I was asking about experiences with the Sativex...doesn't hurt to collect as much information from as many sources as possible.

This is, it appears, a brand name for a med not listed in the U.S.. Likelyl restricted to Canada/UK ???

Give us the generic/chemical name and we'll try and help.

Sativex is a patented cannabinoid oromucosal mouth spray.

We're talking about a form of medical marijuana. Although the US government names it a schedule I narcotic (right up there with heroin) and say there is NO HEALTH BENEFITS from the use of it, I disagree. I do believe that many people get help from medical marijuana in one form or another. The US government needs to rethink it stance on this drug and the possible health benefits it can have to the citizens of the US. The people of the US are accepting the notion that this may be a viable option for many patients. Although it does not help me personally with Cluster Headaches, I do believe that those who can benefit from it should be legally able to obtain, possess, and to use it.

I never understood why tobacco & alcohol is legal but marijuana is so highly illegal. It just makes no sense to me. Give the people whatever helps them.

I4B

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it appears to just be an inhalant version of marijuana. the FDA hasn't done anything about it as far as I found, so if you are a clusterer in the UK, you might be in luck.

helplesswife wrote on Jul 29^th, 2013 at 10:35am:

The oxygen helps but obviously doesn't stop the constant attacks that are wearing him down.  He has an oxygen setup that works for him, not what you are recommending though.  Taking all into consideration, he's gone with a concentrator which I know you all say is not effective, but does help while avoiding the constant refilling of tanks, fear of falling asleep with the o2 and it running out, etc.  This is what works for him. All drugs have the tendency to bring on other problems and he does not want to go that route, so a preventative is not really something he wants to do.  The D3 didn't do anything for him.  Although the imitrex nasal helped with the pain, he doesn't want to take it due to the other effects it has.  He really wants to try an 'alternative' that seems to show promise on reading about it, but the problem is getting it.  It seems to be the only thing that is a promising solution with minimal side effects.  Some may say he's not trying to help himself because he's not taking advise of others on here, but alot of it is just coming to terms with ones situation, then finding the best, manageable alternative that one can accept.  Not always cut and dry to say the least.  This is why I was asking about experiences with the Sativex...doesn't hurt to collect as much information from as many sources as possible.

I most certainly agree that it is a good idea to collect as much information that you can - but then you must commit to act on it.

Yes, individual circumstances rule the day. But, if his CH's are even close to mine - but he isn't willing to do "whatever it takes" - he is the absolute toughest SOB that ever walked the planet. I suppose it all depends upon just how much agony a person wants to accept. Best of luck in your quest to find the answers you want.

You can lead a horse to water, but..........

Marc

Tough, he is.  He is thinking long term and wants to deal with this on his own terms.  Committing to act on info is also an individual choice...in one's own time, on terms one can accept.  He's not willing to risk creating other problems in an effort to stop this one.  His CH's are I'm sure, as severe as yours...I haven't ever seen anything else reduce him to a crying blob but this.  Toughest man I know, especially mentally and I respect how he chooses to go about this.  He will find an answer that works.

helplesswife wrote on Jul 29^th, 2013 at 11:22pm:

Tough, he is.  He is thinking long term and wants to deal with this on his own terms.  Committing to act on info is also an individual choice...in one's own time, on terms one can accept.  He's not willing to risk creating other problems in an effort to stop this one.  His CH's are I'm sure, as severe as yours...I haven't ever seen anything else reduce him to a crying blob but this.  Toughest man I know, especially mentally and I respect how he chooses to go about this.  He will find an answer that works.

Then our prayers are with you and him...may all his days and nights be pain free. God bless. lance