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Cluster Headache Help and Support >> Medications, Treatments, Therapies >> Rate your treatments on Remedyfind
(Message started by: pam s on Jan 7th, 2006, 5:14pm)

Title: Rate your treatments on Remedyfind
Post by pam s on Jan 7th, 2006, 5:14pm
Remedyfind is a great meds-rating/experience website with a new section on clusters. Whatever your treatment experience -- now including alternatives -- it would be helpful to post it on Remedyfind for others to read about. Here is the email I got from Brett, the webmaster, after referring him to this board, about the new pages for alternative treatments (I sent him the Clustermasx link):

Hi Pam Ė thanks for the suggestions. I know that Cluster headaches are one of the worst possible experiences known to humans, and I am very willing to add any treatment listings that might be of use.  Based on your suggestions, I have added these listings -

Morning Glory (Ipomoea Violacea)
http://www.remedyfind.com/rem.asp?ID=21262

Hawaiian Baby Woodrose (Argyreia nervosa)
http://www.remedyfind.com/rem.asp?ID=21261

Ololuique (Rivea Corymbosa)
http://www.remedyfind.com/rem.asp?ID=21263

Psilocybin Mushrooms (Psilocybe)
http://www.remedyfind.com/rem.asp?ID=21264

If you have any more info on that rebreather unit from the UK, please let me know and I can add it as a brand.

If you could do some ratings of the cluster treatments youíve tried, it would be wonderful. The more personal experiences we can gather, the more helpful the data will be in the long run. Your experience with the triptans would be very interesting.  I would love to get this section more active. Not sure if you are involved in any discussion boards, but if you feel comfortable mentioning the RemedyFind Cluster headache section it might bring some people our way.

Here is the page for the Cluster Headache section - http://www.remedyfind.com/hc-Headaches-Cluster.asp

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 7th, 2006, 7:21pm
BTW, some of the postings (there are not many) say that vicodin and marijuana are very effective!  And this is my favorite, about trex nasal spray:

"I have used up to 20mg ns 4x /day every day for years and had no problems except increased anxiety attacks. It works as fast as a shot does and is very effective."

FOUR times a day for YEARS! Yup, a wonder drug.  I wonder if he/she had clusters every day for years before trex.

Title: Re: Rate your treatments on Remedyfind
Post by LeLimey on Jan 7th, 2006, 7:28pm
Thanks Pam,
I've joined up and shall review all the meds I've used in the past year for everything.. that should keep me busy  :-/

Title: Re: Rate your treatments on Remedyfind
Post by floridian on Jan 7th, 2006, 8:45pm
I think that is a web site that requires registration, and then emails you with ads for various products and drugs they think you might benefit from.  After about a year, they stopped emailing me.

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 7th, 2006, 10:07pm
LeLimey, you are the only one who has posted anything about oxygen. (I only tried it at 5 lpm with the nose thing, during last episode, so I don't have genuine personal experience.)

Anyway, your overall rating came out 7.5 because the side effects rating is 0; perversely, 0 side effects = a rating of 10.

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 7th, 2006, 10:15pm

on 01/07/06 at 20:45:08, floridian wrote:
I think that is a web site that requires registration, and then emails you with ads for various products and drugs they think you might benefit from.


You do have to register in order to rate something; I felt compelled to do so when I saw the horrifying things posted, and no mention of alternatives. Anyway, I gave them my junk-mail address, so I will not see any emails from them.

BTW, I sent the guy a link to your website, and I notice he added some more things like ginger and taurine (though not kudzu).



Title: Re: Rate your treatments on Remedyfind
Post by MJ on Jan 7th, 2006, 11:01pm
If it helps just one other sufferer I will do it.

I dont have a junk mail setup, cant hide your e-mail addy so spammers/advertisers are going to get ahold of it.

Way to go Pam.
Its gonna take a whole night or 2 to rate the ones I know. Took 20 minutes just to do Aleve and then correct it.
Looks like you and lelimey are the only raters there so far for clusters.

MJJ


Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 7th, 2006, 11:10pm
Good for you -- it's a pretty popular site, and I can't think of anyplace else that allows you to rate such a large variety of treatments for cluster.

And yes, the few who have heretofore posted anything are clearly imposters! They have not earned the right to claim the distinction of being a clusterhead; they are mere wannabes.

I use a Yahoo email address to avoid spam.  

Title: Re: Rate your treatments on Remedyfind
Post by LeLimey on Jan 8th, 2006, 7:13am
I've sent him a link to both the kudzu info here and on Flo's website so hopefully he will add those.
Interestingly I didn't see anything about Ali..LMAO

Title: Re: Rate your treatments on Remedyfind
Post by LeLimey on Jan 8th, 2006, 7:15am

on 01/07/06 at 22:07:57, pam s wrote:
LeLimey, you are the only one who has posted anything about oxygen. (I only tried it at 5 lpm with the nose thing, during last episode, so I don't have genuine personal experience.)

Anyway, your overall rating came out 7.5 because the side effects rating is 0; perversely, 0 side effects = a rating of 10.


Pam I noticed that too but I didn't know how to change it... o2 should be a ten all the way for me!

Title: Re: Rate your treatments on Remedyfind
Post by floridian on Jan 8th, 2006, 8:19am
The junk email idea is one of those brilliant things I typically forget when registering for a web site  :-X    ;;D

I've also been meaning to sign up for spamgourmet or a similar free account - it lets you create on disposable email addresses on the fly;  create an email with any number of permited replies (up to 20 for spamgourmet) and all the registration/account mgt can be taken care of... it the website sends too many things, they just dissappear.

http://www.spamgourmet.com/

http://email.about.com/cs/dispaddrrevs/tp/disposable.htm

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 8th, 2006, 12:50pm

on 01/08/06 at 07:15:18, LeLimey wrote:
Pam I noticed that too but I didn't know how to change it... o2 should be a ten all the way for me!


It's easy -- you just hit the edit button. I did it in response to the nitwit who said Imitrex nasal spray was so effective he/she only had to take it four times a day for years!

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 8th, 2006, 12:54pm

on 01/08/06 at 08:19:11, floridian wrote:
The junk email idea is one of those brilliant things I typically forget when registering for a web site †:-X † †;;D


I learned the hard way, after turning too many primary accounts into spam recepticles.

BTW, this is what Brett the Remedyfind guy said about your website:

" This is a great (overwhelming!) site. I will go through the list and see what I may have missed.

I admit that the cluster headache section on RemedyFind has taken second fiddle to migraines, but this is a good opportunity to bring it up to speed. After reading the other vicodin ratings I did remove two of them, as it was clear they should have been placed under migraines instead.

Added -

L-Taurine
Zyprexa (Olanzapine
Trigger Avoidance: Sleep Apnea Treatment
Diagnostic Testing: Polysomnogram (Sleep Apnea Study)
Cayenne Pepper (Capsicum annum)
Butterbur (Petasides hybridus)
Inositol
L-Tryptophan
Hydration Therapy (Drinking Water)
Kudzu Root (Pueraria Lobata)
Mangosteen (Garcinia Mangostana)"

So if just a few people will rate these things (since not many have), it will bump some remedies onto the main page. Right now, the leading effective treatment is Clusterheadaches.com, since LeLimey and I both gave it a solid 10.
;)

Title: Re: Rate your treatments on Remedyfind
Post by Gator on Jan 8th, 2006, 2:05pm
Interesting website.  This is going to take a while to get through, but I'm definitely adding my two cents.  ch.com got a straight 10 from me as well.  I love this place.





Title: Re: Rate your treatments on Remedyfind
Post by MJ on Jan 9th, 2006, 12:49am

I gave ch.com a little lower rating for side effects because of its addiction potential.  ;;D

Title: Re: Rate your treatments on Remedyfind
Post by MJ on Jan 9th, 2006, 1:28am
Part of an e-mail from me to Brett @ Remedyfind

"Your site was mentioned on CH.com and I hope you will see an increase in reviewers. There is concern regarding the published E-mail addresses however and due to spam some major hesitation to post"

And part of his reply back to me.

"I was wondering if you could pass this on to the CH.com board for me? I joined the board and read some of the posts, but felt that it might not be appropriate for me to post since I donít have cluster headaches. †There seems to be some misunderstanding about email addresses etc. at RemedyFind and Iíd hate it if people donít participate on the site because of this.


Hi everyone - Brett from RemedyFind here. I just wanted to thank those of you who have shared your cluster treatment experiences, and who have been so helpful in suggesting new treatments to add. I still have some work adding some more, and fine-tuning some of the previous listings. I've added a link to CH.com on the home page of the section - http://www.remedyfind.com/hc-Headaches-Cluster.asp

I feel compelled to respond to some misinformation about the site that I noticed in these posts. These had to do with email addresses being visible to other users, spam email being sent etc.. First off, when you register, your email address is never seen by anyone (except for the site administrator - me). †There is an "email" function on the site which allows members to email other members with questions, but this is done through a form on the site and the person doing the emailing never sees your email address. If you choose to respond to them from your own PC then of course they would at that time be able to see your email address. If you donít want to accept even these anonymous emails from the site, then you can just choose ďprivateĒ as your RemedyFind member setting.

Regarding spam...we never share / sell email addresses to anyone. And we donít send out any emails on suggested products / treatments as I saw mentioned in one post. I donít know how this misunderstanding ever started. †If you sign up to receive the Headaches newsletter, for instance, you will be sent it every other month. Other than that, and an initial welcome message for joining the site, that is all you will ever hear from us.

Anyway, I just wanted to clear this up. We would be extremely grateful to have your participation on RemedyFind, and Iím hoping that the Cluster Headaches section will start to receive the attention it deserves. †Although I spend every day researching various health conditions, and am now pretty familiar with the varieties of ills that can beset humans, it seems that Cluster Headaches (perhaps along with Trigeminal Neuralgia) is the most excruciating chronic pain condition known to man.

Please feel free to email me with any question / suggestions / concerns.

All the best,
Brett Hodges
Founder /Editor
bhodges@remedyfind.com"

MJ
just a messenger.

Brett please feel free to post as you would fall into the class of supporter. One more rescource for all of us.
Thanks for the site.

Title: Re: Rate your treatments on Remedyfind
Post by taraann on Jan 9th, 2006, 2:56pm
Very Interesting.  I will have to check it out!

Title: Re: Rate your treatments on Remedyfind
Post by E-Double on Jan 9th, 2006, 9:47pm
I also joined.
Some things need tweaking but it is a nice site.

Title: Re: Rate your treatments on Remedyfind
Post by Gator on Jan 10th, 2006, 10:36am
Brett is very responsive to input.  I've been exchanging e-mails with him for the last few days.  He is going to be doing some tweaking on some things soon.

I asked him to add other non-rebreathing masks (not everyone has a Clustermasx) for the Oxygen section so other people could rate oxygen.  He has also added several other meds I suggested that were not on the list.  

This site could be a really valuable tool for clusterheads to look at all the meds we take on one page and see how they rate with other clusterheads.


Title: Re: Rate your treatments on Remedyfind
Post by E-Double on Jan 10th, 2006, 11:06am
One of the only things I really noticed was the need to increase dosages on some of the meds as well as frequency for some treatments.

1x per day...how about prn. ;)


Title: Re: Rate your treatments on Remedyfind
Post by Beastfodder on Jan 10th, 2006, 4:50pm
There's a few of us getting busy now - excellent

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 10th, 2006, 7:37pm
The pages are starting to look more reflective of the variety of experiences reported here, in nutshell form, though the more ratings posted, the more reflective it will be. And it certainly would lead anyone to check out this board.

†It would be nice if it could be a place to refer people who want a quick and dirty rundown of the variety of reactions people can have to a treament -- so they would know what things may be worth investigating further (i.e. on this board), what side effects to look out for, etc. †

I have used Remedyfind a lot because I have a bunch of bipolar relatives, and looking up their newest meds is like sitting down with a bunch of people and asking them what their experience with the meds was. You get a good idea of the range of reactions (wide) and common (but not necessarily official) side effects.

I am perplexed by the main page treatment ratings, though -- how does something get into the top ten? †I wonder why some currently low-scored things are in the top 10? †

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 10th, 2006, 7:44pm

on 01/10/06 at 10:36:47, Gator wrote:
Brett is very responsive to input. †I've been exchanging e-mails with him for the last few days. †He is going to be doing some tweaking on some things soon.


Thank you for doing that. Dosage tweaking still needed. Like, there's no way to indicate drinking three glasses of water as fast as you can, or 2-3mg trex injections prn.

Title: Re: Rate your treatments on Remedyfind
Post by Jonny on Jan 10th, 2006, 7:51pm

on 01/07/06 at 19:21:42, pam s wrote:
†I wonder if he/she had clusters every day for years before trex.


Whats so hard to believe about that?

I went chronic for 15 years with only ice, 2-5 HA's a day before I found an abortive that did anything.

Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 10th, 2006, 8:45pm

on 01/10/06 at 19:51:33, Jonny wrote:
Whats so hard to believe about that?

I went chronic for 15 years with only ice, 2-5 HA's a day before I found an abortive that did anything.


I didn't say anything was hard to believe.  I "wondered", no sarcasm intended.

In any case, since my personal goal is to find any kind of preventative that works (except prednisone, btdt), instead only abortives, having to use an abortive four times a day for years is not MY idea of a wonder drug, though for some it apparently is.

I believe you have found an effective preventative cocktail, which I found helpful to read about -- you might consider posting that on the site.

BTW, I went over 20 years with nothing but aspirin, hot baths, and encyclopedias (except for one horrific prednisone experience). :-)  

Title: Re: Rate your treatments on Remedyfind
Post by Linda_Howell on Jan 10th, 2006, 9:27pm



           
Quote:
BTW, some of the postings (there are not many) say that vicodin and marijuana are very effective!



          >:( >:( >:( >:( >:(  no no no!  they are Not.

Linda



Title: Re: Rate your treatments on Remedyfind
Post by pam s on Jan 10th, 2006, 10:54pm
Not to worry -- Brett took two of the three vicodin ratings out and put them in the migraine group (originally clusters and migraines were grouped together). †My own rating was something like "Take a Tic Tac. It's more effective."



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