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HannahFroukje
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Putting together a list of things
« on: Jan 1st, 2004, 6:56pm » |
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Hi folks,
Okay, Jos and I are done with the cycle and back to normal life (thanks to the crazy-mushroom team). We’ve had some blissfull days of piece and normal way of life, everthing’s back to normal. But all that has happened still has me thinking a lot. Because there are still a lot of other people suffering.
I contacted the Dutch organisation for clusterheadache to see if there was something I could do.
But I also have something of my own that I'm working on. See, I am still on a part-time school. This school is about chronic diseases, it takes on a holistic view on them. To me that’s short for: every disease is unique, there are no two bodies alike. I’m not sure yet if I’m going to open a real practise of my own when I've finished this study, my main purpose when I started it was pure interest (and yes, I wanted to learn more about possible other cures in helping clusterheadache, perhaps very simple things, since regular meds don't always solve the problem and never fail to create a few extra problems on the side).
Well, I’ve got a request. I’ve put together a little list of things we MIGHT think of in releaving clusterheadache and/or migraines. I found those in books on orthomolecular treatments. Some of these I’ve heard mention, some only in a few cases, others in a lot of cases (like melatonine). The request is, if you could all let me know if you’ve EVER used one of these things, and noticed SOME effect on your clusterheadache. I don’t care if the effect was only small or only temporary, Perhaps it did only shorten your attacks a little bit, or the effect wore out.
I would very much like to start making a list of ALL substances that have SOME kind of effect, then sort them out the best I can, try to find info on it, try to figure out WHY it is helping and try to LEARN from it. Will take me some time but hey, it's worth it  .
I’d be most obliged if as many people as possible could give a reaction if they see something they’ve used with some effect. If you see one in the list that you’ve used, please let me know which dosage you used, what the exact effect was, how long it lasted. If it’s not on the list, please add it. If you don’t want to discuss it here, please PM or email me.
I am not interesting in knowing if anything mentioned here did NOT help for you (that's not the point and we all know that this differs a lot), but please let me know if something on the list DID help you. It's not about setting up a big discussion, as long as you're sure that it helped YOU that's good enough for me.
Please note: don’t go using anything on this list without further inquiry, there’s some things on it, you’re not supposed to use when pregnant (example LSA) or when on MAO-inhibitors (example: L-thyrosine, 5HTP) or things you can’t use together (example: mushrooms and melatonine)..
If some are interested in the results, and I get enough reactions, perhaps it would be interesting to file it here, with the amount of “hits” per substance and the kind of effect (no names ofcourse).
Okay, here’s the list:
Vitamine B complex (mention which vitamine B's you used)
Melatonine
Psilocin
LSA
LSD
Feverfew
Magnesium
Arnica fytotherapy or homeopathy
Hypericum (St. Johns Worth), fytotherapy or homeopathy
Apis (dito)
Millefolium (dito)
Hamamelis (dito)
Melilotus (dito)
Cannabis indica (hashiesh, weed, pot)
L-tyrosine
DL-phenylalanin
Ginkgo Biloba
L-Glutamine
Quercitine
L-tryptophane
Vitamine C
Fosfatidylcholine or lecithine
Fish oil EPA/DHA
Chelation treatment
5-HTP
Skull cap
Some kind of diet (avoiding certain foods)
Aroma therapy (peppermint oil, other oils, which?)
If you list something homeopathic, please mention the potency too.
Feel free to add something of your own
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Giovanni
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Re: Putting together a list of things
« Reply #1 on: Jan 1st, 2004, 8:10pm » |
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Okay Hannah,
Episodic for 10 years; CH started at age 47 with usually 2 cycles per year fall and spring. Occasional break through CH in the winter at random now. Last two years cycle begins in early March and lasted 5.5 months, 4.5 months. The cycles are now much longer, but with lower frequency of cycles.
Vitamine B complex (mention which vitamine B's you used)--B-6 with melatonin 6mg--see below.
Melatonine --Started melatonin @9mg+6mg B-6 for the first time on June 13, 03 P.M. during my last cycle. I was headache free that night. I continued melatonin for approximately 3 months thereafter and was headache free (few minor shadows the first week). This was in combination of Verapamil 240CR that was increased to 360CR. Cycle ended one month earlier than the year before.
Psilocin --Used one time during early winter because of random shadowing (same as last year). Dosage 1.7 grams dried. Results: Shadows have been eliminated. Plan on dosing again before my March cycle is due to come to try to avoid cycle altogether.
LSA
LSD
Feverfew
Magnesium
Arnica fytotherapy or homeopathy
Hypericum (St. Johns Worth), fytotherapy or homeopathy
Apis (dito)
Millefolium (dito)
Hamamelis (dito)
Melilotus (dito)
Cannabis indica (hashiesh, weed, pot)
L-tyrosine
DL-phenylalanin
Ginkgo Biloba
L-Glutamine
Quercitine
L-tryptophane
Vitamine C
Fosfatidylcholine or lecithine
Fish oil EPA/DHA
Chelation treatment
5-HTP
Skull cap
Some kind of diet (avoiding certain foods): Avoid alcohol when in cycle
Aroma therapy (peppermint oil, other oils, which?)
If you list something homeopathic, please mention the potency too.
Hanna, I do not know if you want these but:
Imitrex injections: Used to abort individual headaches--very effective and fast usually within 5 minutes if taken early. Last cycle used approximately 125 injections.
Verapamil CR @240 and 360--seemed to make a difference last cycle when it was increased from 240 to 360. Other than that, seems to make a difference if I don't take it. I am trying to ween myself totally off of this medication as I am now down to 120 CR.
Need any other information, give me a PM.
Giovanni
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ave
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Re: Putting together a list of things
« Reply #2 on: Jan 2nd, 2004, 5:36am » |
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Just a note, I contacted the Dutch headache patients' magazine year before last and had an article published on shroom therapy, pictures and all.
I also contactd the head of the Clusterheadache group and passed on my shroom information.
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jflynn
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Re: Putting together a list of things
« Reply #3 on: Jan 2nd, 2004, 10:04am » |
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Melatonin is the only thing that has worked for me and it works great.
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HannahFroukje
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Re: Putting together a list of things
« Reply #4 on: Jan 4th, 2004, 4:59am » |
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Thanks for replying ....
But you don't need a degree in statistics to find out that two replies will not be really significant. 
Pity .... we could have helped other people together in the future. Perhaps I'd better take this another route.
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ave
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Re: Putting together a list of things
« Reply #5 on: Jan 4th, 2004, 7:13am » |
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Best way is to put the question on the general boardmessage .
also, have you checked the list of cluster resources, over at ouch?
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floridian
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Re: Putting together a list of things
« Reply #6 on: Jan 5th, 2004, 9:07am » |
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In addition to several things on your list (melatonin, 5htp, magnesium, feverfew), I think I have had some sucess with:
tea catechins (green or black tea)
turmeric extract (curcumin)
both of these are anti-inflammitory and reduce TNF, Interleukins, Nitric Oxide, and other chemicals that are elevated in cluster headaches.
St. Johns wort - improves hypothalamus-pituitary-adrenal axis, increases serotonin in hypothalamus, reduces some types of immune hyperactivity. Must be started months before headaches normally occur (in episodics) as short term effects are small.
Cayenne (chili) pepper in capsules - depletes substance P, one of the pain neurotransmitters that is elevated in clusters (substance P causes the burning streak sensation on the forehead and temple).
Two years of last three, I have had no headaches. I still know I am in cycle - I get disturbed sleep, irregular heartbeat, twitching and slight shadows or flickers just like before, but not full blown headaches. I can't say what has been most helpful as I have taken several things.
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Paigelle
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Re: Putting together a list of things
« Reply #7 on: Jan 5th, 2004, 12:36pm » |
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Feverfew - did not help CH, but did help with migraines.
Magnesium - just started this as a daily supplement, with hopes that it will prevent next cycle.
Nothing else I can think of. Except excruciatingly hot strong coffee. Ask Floridian, he can explain the effects of caffeine and coffee in general. Very interesting.
By the way, so happy to hear Jos is doing better. Have a happy, pain free New Year!
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ave
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Re: Putting together a list of things
« Reply #8 on: Jan 6th, 2004, 4:22am » |
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Tried myself:
Magnesium - gave me the wet plops, no help
MSM - nothing whatsoever
Inhaling vicks/kamfer/lavendel - nothing
Nose plasters - I sleep better but that's all
Meditation - no help, beyond being better able to endure
Ice pack on the soft spot on the top of my head
Read about on this board:
Ingesting Ginger
Peppercream up the nose, or on side of the eye/nose
Inhaling menthol
Hot sauce under the tongue
Cider onder the tongue with blue cheese
A cut apple left overnight till it's brown
Sleep with your windows open
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pubgirl
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Re: Putting together a list of things
« Reply #9 on: Jan 6th, 2004, 7:44am » |
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The cluster survey in the link to the left will give you the list of the main medications used by people who have visited here and how they rate them, but not all the 'alternatives'.
Wendy
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HannahFroukje
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Re: Putting together a list of things
« Reply #10 on: Jan 6th, 2004, 8:02am » |
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Thanks very much for all reactions so far. I will take a note of anything that did help someone and include details mentioned.
To whipe out misunderstandings, my request was not about regular meds like imitrex, verapamil or whatever, but to get together every single substance that has helped a single person.
I DID read the section about the alternative meds, but sometimes a lot of other things pop up, and people say "Here is something that helped MY clusterheadache". And you don´t always see these on the ouch board, perhaps because it´s too unique or doesn´t help "enough" people. We too tried the blue cheese and vinegar and it only made him sick. We too tried the grapejuice, and it only gave him stomach cramps. But that doesn´t rule out that it couldn´t help anyone ELSE!
I´m not trying to find THE remedy for ALL. Perhaps that takes some getting used to .... but I think others can handle that better  . I´m just trying to make an inventory to learn from and perhaps to be able to give a few people some tips by being able to give them a list, which is a LOT handier then having to read 2000 links first to see if there is anyting else.
Just think ... it could happen that someones clusterheadache disappeared for 5 years, and by looking at the list and seeing "banana´s" mentioned on it by one single person, he might be able to conclude that it must have been the banana´s because the only time he´s been eating banana´s was in these 5 years ... right? So then he could just TRY and see if it were the banana´s. Just a goofy example ....
I hope I explained this enough now. Hey, and it's just a MOMENT of your time, right? You might save another person a lot of time.
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Margi
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Re: Putting together a list of things
« Reply #11 on: Jan 6th, 2004, 3:16pm » |
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Hi Hannah
this might save YOU a lot of time, too - it's on the OUCH board...
http://www.clusterheadaches.org/resources/non_script_treat.htm
I'm surprised you list cannabis in your list of things that sufferers have found success with. It's a trigger for a lot of people! St. Johnswort can be, too, as can any herb. I hope everyone's careful with herbs as "headache" is a very common side effect!!
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thomas
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Re: Putting together a list of things
« Reply #12 on: Jan 6th, 2004, 4:46pm » |
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Hot steamy showers. Melatonin, magnesium, prosac combo. amerge, zomig, axert, sansert. pounding the side of your head, sticking your head in the freezer, saline nose spray, physical exercise, those are most of the things I've done to help.
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Opus
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Re: Putting together a list of things
« Reply #13 on: Jan 6th, 2004, 7:12pm » |
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This is my primart abortive which works 90% of the time.
The main ingredient is a oil combo called M-graine. It is for migraines but can be used to treat CH with added peppermint oil and lavender. The peppermint is what really helps the lavender is just to counteract the peppermints side effects of burning and pounding heart. I have found
that 2 drops M-graine, 2 drops peppermint and 1 drop lavender works best for me. I put the oils in one hand, then I rub them together, cup then over my nose and breathe deeply through my nose. This has usually worked for me in about 15 min. I tried the treatment as a preventative without success. the ingediants of M-graine are Basil (Ocimum basilicum), marjoram (Origanum majorana), lavender (Lavandula angustifolia), peppermint (Mentha piperita), Roman chamomile (Chamaemelum nobile) and helichrysum (Helichrysum italicum).
I do not know the exact amounts of each.
I am using 12mg a day of fast acting Melatonine with good sucess as I am on my 2nd PF day.
Opus/Paul
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HannahFroukje
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Re: Putting together a list of things
« Reply #14 on: Jan 7th, 2004, 2:10am » |
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on Jan 6th, 2004, 3:16pm, Margi wrote:Hi Hannah
this might save YOU a lot of time, too - it's on the OUCH board...
http://www.clusterheadaches.org/resources/non_script_treat.htm
I'm surprised you list cannabis in your list of things that sufferers have found success with. It's a trigger for a lot of people! St. Johnswort can be, too, as can any herb. I hope everyone's careful with herbs as "headache" is a very common side effect!! |
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Yep, I DID read all that margi, it's very good and we got a few tips of our own there. But we were wondering at the same time for how many people did this work ... and there were a few things that helped a little for us that weren't in the list.
Yes St.JohnsWorth and cannabis can be triggers. And again I say that if you see anything on the list you haven't tried, don't go trying it at once, it just might be your trigger instead of your relief. Don't worry, I'm carefull, I know how it goes, I've got a timebomb at home myself (when he's in cycle).
I'm trying to contact ouch on this ....
Thanks again folks for your contribute (now that didn't cost ya' a whole day , now did it?) . Thanks 
Opus, you seem to be one of the few that is helped by aroma's ...  . And congrats very much on the success with melatonine. That's great!!!!!  I hope it stays that way.
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| « Last Edit: Jan 7th, 2004, 2:13am by HannahFroukje » |
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ave
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Re: Putting together a list of things
« Reply #15 on: Jan 7th, 2004, 3:41am » |
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Some people do want to help but don't get it. I posted an appeal on the main board, and this is one ofthe contribs.
I'll try to quote
Quote:
let's hope more people will come forward. Just have a little patience.
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HannahFroukje
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Re: Putting together a list of things
« Reply #16 on: Jan 7th, 2004, 4:10am » |
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Ok, I´ll rephrase ....
I am patient ...  , I´ve got two years for this if necessary.
Perhaps it would be best to PM people of this board personally ... but I am not sure if people would feel uneasy with that. What do yo'all think off that? Would it be better? Thanks for putting it on the general board  , perhaps that makes a difference.
See, perhaps it sounds a bit ... prosumptuous (is that a good word) but I would have to reach at least a few hundreds of people to make the list have any use (I would note down which substance has been of any help, and after let´s say 250 people you should be able to say, ah pepper helped on 20 of these people, but for 2 of the 250 it was a trigger. Or: avoiding eating banana´s helped for 2 of them.
Let me know if personal approach would be better.
I hope to be able to help the dutch organisation out with this too.
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| « Last Edit: Jan 7th, 2004, 4:30am by HannahFroukje » |
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Turts
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Re: Putting together a list of things
« Reply #17 on: Jan 7th, 2004, 6:13am » |
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Feverfew- reduced number of daily headaches within cycle
Aroma therapy - lavender bath oil or drops on the pillowcase reduced intensity or kip of headache
Change to diet-
non-consumption of alcohol reduced intensity and regularity of CH
Coffee (strong) used as an abortive
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| « Last Edit: Jan 7th, 2004, 6:16am by Turts » |
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juvy
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Re: Putting together a list of things
« Reply #18 on: Jan 7th, 2004, 6:27am » |
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Hannah,
note, I do not have CH, I have a rare version of CPH
when hit i use:
Ice packs on the head and throat (relieves the pain and burning sensation)
Mint tea (relieves the tension in the neck and shoulders)
prescription meds do not work for me any more so when the list is gathered if you can send me a copy I would be ever so greatful.
Cheers,
Juvy
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HannahFroukje
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Re: Putting together a list of things
« Reply #19 on: Jan 7th, 2004, 10:22am » |
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Juvy and turts, thanks so much (I wished I had knows of the mint tea before ... I would have tried that on Jos).
If I may ask juvy, did you ever try drinking icy cold water yourself? Jos´s headaches are relieved by cooling them to almost freezing with ice packs, and he´s relieved a LOT by drinking ice-water (not just a few sips, but at least a whole cup at once, if he can stand it ...). Ever tried? Just curious.
Hannah
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ozzman
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Re: Putting together a list of things
« Reply #20 on: Jan 7th, 2004, 10:36am » |
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One non-medical way I treat my cluster even if it works for a few seconds is to hold my head in a sinkful of icy water, hold my breath for as long as I can last, come up for air and repeat, works better than the ice pack.
Ozzy
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Margi
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Re: Putting together a list of things
« Reply #21 on: Jan 7th, 2004, 12:21pm » |
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on Jan 7th, 2004, 2:10am, HannahFroukje wrote:
Yep, I DID read all that margi, it's very good and we got a few tips of our own there. But we were wondering at the same time for how many people did this work ... and there were a few things that helped a little for us that weren't in the list.
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But, Hannah - that's how the list was comprised - from folks who these treatments DID work for....are you looking for a total NUMBER of people? You'd almost have to go back to the old board archives and start there, I would think, to get an accurate number. Like any cluster treatment, nothing works for everyone. I think this is an impossible task, to find how many people something worked for, therefore. Some things work once, but then not the second time - I would think "numbers" wouldn't be accurate.
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HannahFroukje
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Re: Putting together a list of things
« Reply #22 on: Jan 7th, 2004, 12:57pm » |
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on Jan 7th, 2004, 12:21pm, Margi wrote:
....are you looking for a total NUMBER of people? You'd almost have to go back to the old board archives and start there, I would think, to get an accurate number. Like any cluster treatment, nothing works for everyone. I think this is an impossible task, to find how many people something worked for, therefore. Some things work once, but then not the second time - I would think "numbers" wouldn't be accurate. |
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I know the complications, but I'm sure it is not at ALL impossible. I work with this kind of data every day. Only thing you need is time, persistence and answers. If you've got that , in a few years you will have detailed info. It's not that hard, it just takes time.
But perhaps the board is not the right place.
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| « Last Edit: Jan 7th, 2004, 1:17pm by HannahFroukje » |
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amen
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Re: Putting together a list of things
« Reply #23 on: Jan 7th, 2004, 4:05pm » |
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I haven't seen this on your list yet, but here it goes. I started a cycle in October after being PF for 5 years. On December 13th, I went and had a "Cranial Sacral Massage" I believe my cycle was coming to it's end at the time, because I had gone from 3 attacks a day down to 1. But I did have a CH the morning before my treatment, so I know it was not completely gone. The day after my treatment I had a regular headache for most of the day. I waited to take something until the end of the day because...well because a regular headache is a walk in the park compared to CH. Anyway after I finally took an Aleve for the HA, I have been PF since. If you do a search on "Cranial Sacral Massage" you will get a lot of information on what it is all about. It's hard to explain, I believe it worked for me. Hope this helps.
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Prense
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Re: Putting together a list of things
« Reply #24 on: Jan 7th, 2004, 10:19pm » |
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Works or helps
- Preventatives
none
- Abortives
Imitrex (about 90% of the time)
O2 15ml X 15 minutes w/ non-rebreather mask (50% or so effective)
SCALDING HOT shower (temporary reduction of pain level)
Coffee (black-same result as shower)
Didn't work or help at all
- Preventatives
Verapamil (up to 480mg/day)
Depakote (up to 1000mg/day)
Inderal
Melatonin
Indomethacin
Naproxen
- Abortives
Ibuprofen
Aspirin
Motrin (800mg)
Maxalt (both MLT and normal) 5 and 10mg tried
Lidocaine (2% and 4% in the nose)
Demoral
Fiorinal (w/ and w/out codeine)
Darvocet
Percocet
Tylenol w/codeine
Feverfew
Excedrin migrane
Ice (frozen peas or whatever handy)
Running (opposite effect)
I think that's it...
Additionally, 10 years chronic...never episodic, if you need that as well.
Chris
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| « Last Edit: Jan 7th, 2004, 10:20pm by Prense » |
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