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Topic: no longer chronic (Read 23677 times) |
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pam s
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Re: no longer chronic
« Reply #200 on: Feb 22nd, 2005, 10:31pm » |
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on Feb 14th, 2005, 6:28pm, E-Double wrote:
Spent over an hour in my car ...emptied an E tank and 1/2 an injection and still didn't break.
Honestly the worst one I have had in a while.....I'm usually able to abort quick!
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Wow, when that happens, it is time to try plan Z. I've never had trex not abort a CH -- and I've never had one less than a 10 except at beginning and end of cycle. Last cycle I aborted every single one, but the cost was huge. The cycle was at least two weeks longer than normal, and I was having the CHs all day long*. Plus I got terrifying side effects. If things go as planned, next cycle I will not go back to trex.
*Trex does cause an increase in CH frequency:
Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.
Headache Centre, INI Grottaferrata, Rome, Italy.
OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature. BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial. METHODS: Six CH sum-naive patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described. RESULTS: All six patients had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. In all patients, the CH returned to its usual frequency within a few days after SQ sum was withdrawn or replaced with other drugs. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache. CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.
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Pam
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Mr. Happy
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Re: no longer chronic
« Reply #201 on: Feb 23rd, 2005, 12:08am » |
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on Feb 22nd, 2005, 10:31pm, pam s wrote:| next cycle I will not go back to trex. |
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So what's your options? I'm all ears.
RJ
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miapet
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Re: no longer chronic
« Reply #202 on: Feb 23rd, 2005, 9:14am » |
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Bob . . .thanks for the 'bump' *smiles*
Well, we just hit the . . .all thank to the magic of the fungus .. . .
Which, btw, Mr. Happy, is what I believe PamS has in mind . . .no more trex. . . only the fungi . . . .
*positive light and energy*
miapet
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pam s
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Re: no longer chronic
« Reply #203 on: Feb 23rd, 2005, 8:51pm » |
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on Feb 23rd, 2005, 9:14am, miapet wrote:
Well, we just hit the . . .all thank to the magic of the fungus .. . .
Which, btw, Mr. Happy, is what I believe PamS has in mind . . .no more trex. . . only the fungi . . . .
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Correct, Miapet. When I tried it before I was detoxed but already at the end of a cycle, so my data is not useful -- but I do believe it killed off nagging day-long shadows I'd developed as a result of trex. I will try it as a cycle abortive next time.
Congratulations for making it to 40 weeks! I've been following this thread with astonishment since May. This is one case history that will make history!
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Pam
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LeeS
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Re: no longer chronic
« Reply #204 on: Feb 24th, 2005, 3:48am » |
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40 weeks! Wow - full-term  8lb 7oz! Have we a name yet? 
Congratulations D and Kim!
All the best with it next time Pam. Have you considered a preventative measure rather than an abort? Seems like cycles are harder to get rid of once they're established.
Good luck.
-Lee
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Friend
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Re: no longer chronic
« Reply #205 on: Feb 24th, 2005, 8:46am » |
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I have a question....You say that you use the fungus as a preventive. Can I ask how you do that? I get them about 3-6 months out of a year and was thinking if I just do fungus like every 2 months then maybe it will just stop it. I am just looking for advice on how this works because soon I will be trying it. I dont want it to start at all. Any advice??
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vig
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Re: no longer chronic
« Reply #206 on: Feb 24th, 2005, 10:26am » |
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I managed to miss an entire, scheduled episode by taking a few doses before the anticipated date....
nothing.
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Cooked Brain
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Re: no longer chronic
« Reply #207 on: Feb 24th, 2005, 12:17pm » |
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Oh yeah baby! 
I usually dont drink but for this one:
6 beers later:
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pam s
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Re: no longer chronic
« Reply #208 on: Feb 24th, 2005, 9:00pm » |
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on Feb 24th, 2005, 3:48am, LeeS wrote:
All the best with it next time Pam. Have you considered a preventative measure rather than an abort? Seems like cycles are harder to get rid of once they're established.
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Thanks, Lee. My cycles are usually around 3 years apart so I have a while to go. The time of year is not entirely predictable, although the last couple have been in summer, so I am a bit afraid to take a pre-emptive dose and possibly incur the wrath of the beast unnecessarily.  I certainly don't want to wait until a cycle is established, but it usually takes several days before that happens, so I'm hoping at the first sign I can nip it in the bud. But I am still reading posts and learning about how to proceed.
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Pam
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LeeS
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Re: no longer chronic
« Reply #209 on: Feb 25th, 2005, 4:27am » |
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OK Pam, wise move - no need to shake things up unnecessarilly
on Feb 24th, 2005, 8:46am, Friend wrote:| I have a question....You say that you use the fungus as a preventive. Can I ask how you do that? I get them about 3-6 months out of a year and was thinking if I just do fungus like every 2 months then maybe it will just stop it. I am just looking for advice on how this works because soon I will be trying it. I dont want it to start at all. Any advice?? |
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See http://www.clusterbusters.com for full details Friend, but here's a starter for ten.
Quote:9. Maintenance Doses
After breaking your cycle or if you are currently in remission (between cycles) it is reported that one single dose taken on a schedule of "once every six months" will stop cluster cycles from returning on their regularly scheduled basis. Many people are enjoying years of a continued cluster free life by keeping on a regular schedule of maintenance dosing. This period between required doses is different for everyone and is sometimes determined by the onset of a "shadow" as a precursor of an oncoming cycle. It is generally accepted that a period not to exceed 6 months between doses is good insurance to stop a full blown cycle's return. It is much easier and more successful to keep a cycle from starting than it is to break a cycle.
Maintenance doses vary but people that have success with one single dose.......should avoid further doses once the cycle is broken, unless the symptoms get worse. Your body chemistry may have found it's balance, so best not shake the bottle again. Switch to preventative doses between episodes, therefore once every 3 months, starting in 6 weeks time. Use weak doses - once battered it doesn't take much to keep the beast at bay. After 2 years without any CH reduce the frequency of maintenance dose to once every 6 months. After a further 2 years you may escape with just an annual dose. |
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All the best with it.
-Lee
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Ellick
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Re: no longer chronic
« Reply #210 on: Feb 27th, 2005, 9:38am » |
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iwanabeer too.
Suggest you check out clusterbusters.com. All the details are on there.
Ellick.
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Pinkfloyd
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Re: no longer chronic
« Reply #211 on: Feb 27th, 2005, 1:50pm » |
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on Feb 27th, 2005, 9:08am, iwannabeer wrote:I have read and read until my brain is mush (wasnt a long journey) and I can't find an easy way to get a hold of these shrooms, nor can I find anyone speaking of a dosage other than in g measurements. Can someone please help out in "dummy" terms?  |
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There aren't any easy (legal) ways of procurring them. Best bet is to grow them. All the info you need is on the clusterbusters website. If they work, you'll want to be able to have them in the future so you might as well begin the growing process. Is it worth $50.00- $100.00 and a few hours time to possibly have a neverending supply of medication? You don't need to stop your current treatment plan to begin looking forward to possible relief.
What other form of measurement would you like? Grams are about the only way to measure them. Example; 1.5 grams of dried mushrooms. Its better than saying, grab a small handful
If you don't have a digital scale for mail that measures in 1/10 of a gram, they are available online for 20 bucks. Or, there are cheap ways (under a dollar) to make simple balance beam scales.
Good luck,
Bobw
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miapet
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Re: no longer chronic
« Reply #212 on: Feb 28th, 2005, 2:21pm » |
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hahahah, i love this thread!! and everyone who posts on it too!!!!!
our baby name is 'hootchie' hahahahah (actually, we're playing with 'baby' names right now .. .i want a t-cup-baby *L*)
Preventatives . . . I hate how this sounds, but y'all are all different, so when to do the prevent is going to depend on you. D does his every 2 to 3 months. He would prefer to be able to push the time out more, but I won't let him . . .it has taken us well over 1/2 of this time to learn what his pre-cycle tells are. When the beast first came knocking, he had never heard of CH, and wasn't aware of the 'before' stuff . .. and, since 'it' never left (UNTIL THE FUNGUS) he never learned what they were . . .NOW we know . ..so, sometimes 8 weeks, sometimes 12 weeks . . .maybe, this time, it will be 16weeks? (we can hope *G*)
much love to all of you .. .and let us all continue counting our pain free time, and keep adding more people to the pain free list (which means more counting, but i'm okay with that *G*)
OH and guess what???? We are even discussing flying now!! I'm still holding out with 'why tempt the beast' but D is pushing for a plane ride *g*!
*positive light and energy*
mia
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iwannabeer
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Re: no longer chronic
« Reply #213 on: Mar 2nd, 2005, 5:06am » |
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Miapet,
Since beginning this treatment, have they completely dissapeared? I mean, the usual triggers don't even set them off? Ie.. alcohol, afternoon naps, alcohol .......etc.
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miapet
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Re: no longer chronic
« Reply #214 on: Mar 2nd, 2005, 11:44am » |
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iwannabeer .. .during the first 2 doses, peanuts gave D a h/a . .. since the h/as have been totally gone now, D and I have been able to have a few drinks together, take naps together, eat Chinese food, eat shrimp, and a host of other things that USED TO trigger h/as . . . now, I've been a little freaked every time D trys something that used to mean a ch would whack us before we could enjoy it, but, so far, it's all been good *g* . .. and, it's really nice to sip a cold beer on a hot day . . .. among other things *wink*
Oh, did I say it:
*positive light and energy*
miapet
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Ellick
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Re: no longer chronic
« Reply #215 on: Mar 3rd, 2005, 3:50pm » |
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I have been drug free for 5 days now. It's been tough. Last night and the night before up every hour, holding on tight to get downstairs quietly and stick my face in to the 02 mask. Have to get through the rise in pain each time before 02 starts to work.
Checked with my Dr about my plans to try psilocyben and about how soon I'd be drug free. Reckon Sunday is the earliest.
My Drs said why not go for it and are keen to find out how I get on.
It's hard not to put all my hopes in to this. I have past experience of psilocybin recreationally when I was younger so I know what to expect. I also know that when used in non abusing ways there is no evidence that I have heard of or read to suggest it is harmful.
This episode has been a tough bastard, feel like I've sometimes been in the shit pits of hell (excuse the language). I am fighting hard to keep my objectivity in that it may not work for me and I have to stand up again and fight again. I'm tired.
Fingers crossed for me.
ET.x
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Pinkfloyd
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Re: no longer chronic
« Reply #216 on: Mar 3rd, 2005, 6:31pm » |
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on Mar 3rd, 2005, 3:50pm, Ellick wrote:I have been drug free for 5 days now.
Checked with my Dr about my plans to try psilocyben and about how soon I'd be drug free. Reckon Sunday is the earliest.
ET.x
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We're all pulling for you.
I especially confident you'll be happy with the results considering you've been able to go completely drug free for this length of time.
5 days is usually enough. I'm wondering why your doc feels a longer period of time is needed. Which drugs were you using and did he feel it would take until Sunday for them to clear?
Bobw
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Ellick
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Re: no longer chronic
« Reply #217 on: Mar 3rd, 2005, 6:51pm » |
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I was taking sumatriptan and verapimil. I think the doc was just looking at giving some sort of margin. They, my Drs are supportive. I know more about Ch than they do and there is enough respect for me to get on with it.
BTW they are both female.
Thankyou for your support, it is so important when we are at a low ebb.
ET.x
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LeeS
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Re: no longer chronic
« Reply #218 on: Mar 4th, 2005, 4:45am » |
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Congratulations D and Mia
All the best with it Ellick. Keep us posted as to how you get on.
-Lee
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iwannabeer
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Re: no longer chronic
« Reply #219 on: Mar 4th, 2005, 4:53am » |
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someone please tell me how to do that quote thing with the blue box. I hit the quote button, but my text goes in with the quote, and no blue box thing........comfrused
Also, I am going to try the fungus tonight, but am not drug free. I am still taking the Carbatrol to keep the beast away. Any advice from anyone? Will the Carbatrol negate the effects of the fungus? Or vice versa? Not sure what to expect, gonna do it anyway......
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| « Last Edit: Mar 4th, 2005, 4:56am by iwannabeer » |
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miapet
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Re: no longer chronic
« Reply #220 on: Mar 4th, 2005, 11:07am » |
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Thanks Lee!
Ellick .. .don't feel discouraged . . .the beast does funny things when the shrooms are kicking him to the curb . .. it may take more than one dose . .. it may not . . .but we'll all be pulling for you *smiles*
iwannabeer .. .i have no clue about that particular drug . . but, if it's only for CH, if you can detox, it would be best (myopino) . .can you use o2 while getting off it?
*positive light and energy*
miapet
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iwannabeer
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Re: no longer chronic
« Reply #221 on: Mar 4th, 2005, 5:49pm » |
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Its primarily for controlling seizures in epilepsy patients, but it keeps my h/a down to mere shadows, nothing over kip3. It affects my equilibreum somewhat though. Not enough to lose my balance, but enough that you dont feel comfortable riding a motorcycle, and you still get a 6 or a 7 if you drink alcohol. Might sound like Im whining, but some things in life you really shouldnt be without....lol
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iwannabeer
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Re: no longer chronic
« Reply #222 on: Mar 5th, 2005, 6:41am » |
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on Mar 4th, 2005, 4:53am, iwannabeer wrote:someone please tell me how to do that quote thing with the blue box. I hit the quote button, but my text goes in with the quote, and no blue box thing........comfrused
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Ok Miapet, I figured it out, after hitting the quote button, just be sure you dont remove the little "quote" inside the brackets, and it'll come out in the blue box.
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| « Last Edit: Mar 5th, 2005, 6:41am by iwannabeer » |
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E-Double
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Re: no longer chronic
« Reply #223 on: Mar 5th, 2005, 7:06am » |
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This is the most awesome thread!!!
Righteous!!!
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I can't believe that I have to bang my
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But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
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Renee
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Re: no longer chronic
« Reply #224 on: Mar 5th, 2005, 7:28am » |
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Eric,
A bit late but.....I have taken indomethacin while dosing and had no problems with the indo altering the effects.
With that said, I quit taking the indo after a few doses as the ice pick hits had disappeared with dosing as well. Once the indo was out of my system I found that I had less "regular" headaches as well.
If you choose to stop the indo, detox off it slowly as it is an anti-inflammatory. I don't know what dosage you are taking but I was on 200mg per day. I quit all at once and felt like I had the flu for a few days. Do a taper, in my opinion.
Hope this helps!!!
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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