New Here

[defiance]

Hello everyone

 

I am new to this forum.  My father suffers from cluster headaches and about 3 weeks ago his headaches returned.  I was wondering for those who use oxygen therapy and sumatriptin what is the success rate of this form of treatment and how long are you pain free when you use it?  I have done research on LSD and how it works wonders but there is no way I can get my hands on anything like that.  However, If anyone here uses LSD I would greatly appreciate any information you could give me as far as how well it works for you.  I myself do not suffer from cluster headaches but as someone that has to watch someone suffer on a daily basis.....it just kills me.  To everyone on this forum who suffers I am so sorry you have to know such a horrible pain.  Any feedback is greatly appreciated.  Thank you and I wish you all the best.

[Rod H]

Oxygen is our saving grace used correctly it will abort a headache 100% of the time for me. Imitrex works but the side effects are more frequent headaches. There is tons of information on this website and many knowledgeable people here to help. Spend an hour or 2 and read everything here. There are other options then lsd that work well.

[jfrillin]

My husband has had CH for 5+ years.  Took 2 years to be "officially" diagnosed.  I have done a lot of research on my own because the Neurologist / headache specialist has only presribed Imitrex for him.  Hardly mentioned O2.  After reviewing Oxygen therapy on this website and what exactly you need to effectively abort an attack....it has (so far) been doing the job.  We have the big tanks M90 of O2, and more then two to get us through.  We have a 15 lpm regulator and found that what all the research say's that 25 lpm works better at aborting an attack with uninterrupted flow does make a big difference !!!!    However, our O2 provider does not provide a 0-25 lpm regulator.  So to answer your question....so far the O2 has been doing it's job.    We understand what you are going through....it is HELL for a loved one to watch their family member go through this and you feel very helpless.   All you want to do is take their pain away and you can't. 

[defiance]

Thank you Rod H and jfrillin for responding I truly appreciate it.  I will fight as hard as I can to get oxygen therapy for my dad until the headache decides it has done enough damage and goes away for a while.  It is hell when you are forced to stand there unable to do anything to help alleviate the pain.  I have never seen suffering of this magnitude.  Again thank you for responding to my questions.  Take care

[CHfather]

Oxygen and triptans are abortives.  They make the pain go away, but it will come back pretty much on its regular schedule.  "Busting" with psychedelics ends cycles and can prevent new cycles. So, two different kinds of things--abortives and preventives.  Verapamil is a pharmaceutical preventive.  The vitamin D3 regimen is a very effective natural preventive. 

More about oxygen: https://clusterbusters.org/oxygen-information/

More about D3: https://clusterbusters.org/forums/topic/1308-d3-regimen/

Both of these are strongly recommended.

More about busting in the numbered files in the "ClusterBuster Files" section.

Your dad should also try drinking a cold energy shot, such as 5-hour energy, at the first sign of an attack.  That can be an effective abortive, or at least reduce the amount of pain.

Is he using sumatriptan injections?  That's the most effective abortive form of sumatriptan (as opposed to pills, which help practically no one, and nasal spray, which helps some people).  If he is using injections, he should be splitting them.  More about that here: https://clusterbusters.org/forums/topic/2446-extending-imitrex/

[defiance]

CHfather thank you so much for this helpful response.  I will definitely look at it in detail and hope that my father can see some results from it.  Unfortunately he does not take sumatriptin as he has heart issues and that medication can cause future problems including another heart attack.  We are fighting to get the oxygen tank for him at the moment.  I have read such great things about psychedelics regarding cluster headaches but I just can't get that stuff.  Thank you again for your helpful comment and links.  

[CHfather]

Try to get him to do the D3.  That helps some people pretty quickly, and helps most over the long run.  A don't neglect trying the energy shot, if his health will handle it.  He can just try a strong coffee at the onset of an attack.

 

No idea how old your father is, or his other statuses, but it's my understanding that Medicare won't cover oxygen, Medicaid won't cover oxygen, and the VA won't.  "Regular" insurance should.  If the fight becomes impossible or just too difficult, you can consider doing what many have done and creating your own system using welding oxygen.  You can do that quickly and easily.  If you decide to go that way, just ask.

 

As Rod says, there are easy to acquire/legal to buy and possess substances, particularly rivea corymbosa (RC) seeds, that are used by some "busters" with very good success to treat CH.  Read the file on LSA here: https://clusterbusters.org/forums/topic/684-5-lsa-seeds-of-the-vine/ And also read the core files--for example, the one about "the busting method."  Again -- get back to us if you decide to proceed.

 

Has he tried a prednisone taper?  That can sometimes stop a cycle, or at least give a break.

 

Several people here have said that they put their feet into a bathtub with water that's as hot as they can stand at the start of an attack, and it can abort an attack pretty quickly.

 

Many people say that melatonin at night, starting at maybe 6-9 mg and working up as necessary, helps them.  Some people go up into the high 20s of mgs before they get real relief.