And here I was thinking I had outgrown them :p  No such luck, the beast is back. 

I was just having a conversation with someone on Facebook about CH and they suggested I try busting.  I'm not overly keen due to the legalities.  Aside from that I wondered if anyone here who also suffered from fibromyalgia had given it a try and if it caused any untoward effects.

Cheers,

Hope everyone is keeping well x

Kate

The complexity and unknowns about fibro.... are such that I'd suggest consulting a headache specialist (not necessarily a neurologist unless you  confirm that they have education and experience with complex headache disorders)

My first reaction to your question: see,

Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Thanks Bob.  I just had a quick look at that link.  Ummm were you wondering if I did have clusters?  I definitely do, was diagnosed many, many years ago now and use oxygen to abort which thankfully does work in around 10 mins. 

I will go back and read more of that article, I couldn't see any mention of fibromyalgia.  From some of the studies I have read which of course are somewhat speculative... there is perhaps a link to the hypothalamus which is interesting as CH is thought (?) to be generated from there too.

Anyhoo will go back and read.  Was really just curious to know if anyone here who had fibro had tried busting and how they went.

Cheers.

I assume that you are using one of the meds which is a preventive/reduces attacks. An abortive, as the only treatment, is inadequate.

The cluster-like message is not complete, i.e., a month never passes when a new condition, which appears to be Cluster, is found to arise from a non-headache condition. The issue being raised is: if it appears to be Cluster but not resonding to the usual Cluster treatments, then the doc should consider that it's a cluster-mimic condition.

As to the source of Cluster:

Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
==============================
Handb Exp Pharmacol. 2007;(177):129-43.   


Serotonin receptor ligands: treatments of acute migraine and cluster headache.


Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]
=================================================================
J Clin Neurosci. 2010 Mar 11.

What has functional neuroimaging done for primary headache ... and for the clinical neurologist?
Sprenger T, Goadsby PJ.

UCSF Headache Centre, Department of Neurology, University of California, 1701 Divisadero St, Suite 480, San Francisco, CA 94115, USA.

Our understanding of mechanisms involved in primary headache syndromes has been substantially advanced using functional neuroimaging.

THE DATA HAVE HELPED ESTABLISH THE NOW-PREVAILING VIEW OF PRIMARY HEADACHE SYNDROMES, SUCH AS MIGRAINE AND CLUSTER HEADACHE, AS BRAIN DISORDERS WITH NEUROVASCULAR MANIFESTATIONS, NOT AS DISORDERS OF BLOOD VESSELS.

PMID: 20227279 [PubMed]

Thanks again Bob. 

I started getting CH in 1987.  Finally got the diagnosis in 2002, found this site in 2005 and everyone here was very helpful.  I will be forever thankful!!

I have done the merry go round with the drugs and ended up on the verapamil for many years but found that they extended my cycles and made the hits more severe and the day time shadows relentless.  I stopped taking all drugs around 2010/2012? 

After stopping all drugs my cycles started breaking up, I was getting a few hits here and there rather than a full cycle. 

I've just started a cycle about 3 weeks ago for the first time since then!!  I don't want to take any drugs, they don't seem to agree with me and as I say the oxygen works and knocks out a hit in about 10 mins and the hits aren't so bad ~ maybe because I know that relaxing and just accepting the pain is the easiest way to get through.  It is the fatigue that gets to me more these days, I'm not scared like I used to be.  The feeling of internal bruising the next day is also a bit of an issue.  But other than that I feel that it is all quite manageable.  When I came to this site in 2005 I was a mess.  Now I feel in control.

I really just wanted to know if anyone here who had fibromyalgia had used the RC seeds and if they had any untoward effects e.g. caused a fibro flare.

:)

Kate in Oz wrote on Jul 12^th, 2014 at 9:34pm:

I've just started a cycle about 3 weeks ago for the first time since then!!  I don't want to take any drugs, they don't seem to agree with me and as I say the oxygen works and knocks out a hit in about 10 mins and the hits aren't so bad ~ maybe because I know that relaxing and just accepting the pain is the easiest way to get through.  It is the fatigue that gets to me more these days, I'm not scared like I used to be.  The feeling of internal bruising the next day is also a bit of an issue.  But other than that I feel that it is all quite manageable.  When I came to this site in 2005 I was a mess.  Now I feel in control :)

Ummmmm....golly...that was just a delight to read Kate! Your insights mirror many of my own... it took me so many years...but experience and this ch.com family led me to the same conclusions. I just didn't know how to say it...thank you!

My thoughts and prayers are with you in this other battle.

Best

Jon

Hello Kate, good to hear from you again, although it's sad your CHs are back. And that you've compounded your suffering with FM. Just a side note, if you haven't been monitoring us for the past couple of years, the vitamin D3 regimen begun by Batch so long ago seems to be very promising. Since D3 isn't a drug per se I thought you might be interested. If you recall, my CHs tend to be chronic and intractable. I'm not the best advertisement for the D3 regimen but it does seem to have helped even me. Just a thought. Welcome back! blessings. lance

Thanks Jon and Wimsey.  Any excuse to come back and see what everyone has been up to  :P

Yes I am aware of the D3 regime and happy to see people talking about it on other social networking sites eg. Facebook.

Slowly but surely people are becoming more aware and that is a wonderful thing.  Knowledge is power!

Hope you are both doing well.

x

Sorry to hear the clusters are back.  I have not had any personal experiences with people that have fibro and taken psychedelics, but because I have a friend who has fibro I have looked into it a bit.  I have 3 anecdotal accounts of people with fibro taking psychedelics and the only thing I have heard is that it got them pain free, for at least the night they were taking them.  This does not mean that this will be your body's response, just that there are 3 people out there that have had this as a reaction.  I have not been able to find anyone who said that they had a flare up after taking the psychedelics, your response could be very different.  I will say this-- I started looking into this because the science is behind it.  The serotonin problems associated with fibro seem very similar to the serotonin issues that could be going on with Clusters.  When I talked to my neuro (who specializes in headache medicine but also treats a number of people with fibro) and mentioned these 3 peoples accounts he said that people with fibro taking psychedelics and going pain free while they are on it did not surprise him at all.  I wish we had time in that appointment to discuss it further but we did not.  The big question that I would like to know from these people is what about afterwords?  In the weeks after the psychedelics did the fibro get any better?  With the way they seem to have long lasting effects on clusters it would not surprise me, especially with the documented longish term effect that the psychedelics have on the brain.  There is also the issue of RC seeds.  They are pretty weak in terms of hallucinogens, it may not do much of anything for the fibro.  Good luck.  If you decide to try this option let us know how it goes.

-Ricardo

Hi Ricardo,

Thanks for that information, really appreciate it.  It is interesting to hear that psychedelics worked in terms of pain relief for the fibro.  I was at a party a few weeks ago and was offered some wacky week  :P (first time I've had that in years!) and it did wonders for my body pains!!   Not sure that I am going to bust but if I do I will post again.

Cheers. 

Glad to know you got some relief, at least from the fibro.  There has been a good bit of evidence showing cannabis can help fibro symptoms pretty dramatically.

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-Ricardo

Thanks for that link Ricardo  :) not really surprised to hear that at all. 

Cheers