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Title: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 4th, 2007, 4:59pm I have been in a cycle for about 5 weeks. I have been experimenting with seeds and have avoided all prescription meds since none have ever worked for me. I was getting some relief from 2 big doses and then a week of little doses. I took 40 with a little mushroom on Thursday and am not improving. My hits are mostly late at night and are now at a Kip 10 each time. I want to wait 2 more days to take a big dose, so I avoiding even the little doses until then. I was managing the pain well and O2 was working quickly until a few days ago. Now I am getting hit as soon as I fall asleep and this goes on all night long. The O2 is taking longer to work and the pain is the worst it's ever been. My scalp and neck now feel like they are on fire while I am having the attack. I have had 17 hits in the last 3 days since taking the big dose of seeds. I have to sleep tonight. Does anyone have any suggestions to get me through the night with the least amount of pain? I am literally blowing through my O2 tank! |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 4th, 2007, 6:09pm I can sometimes avoid night time hits by propping my pillows up and sleeping as upright as possible. It's hard to get used to but when you're that tired, you'll eventually conk out. Good luck! |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 4th, 2007, 7:50pm Thanks. I am willing to stand up and tie myself to the wall if it helps. I just wish the O2 was more permanent. It just puts everything off for a little while. I am doing everything in my power to avoid the Imitrex because that is usually fairly temporary also. I can remember 20 years ago before meds, I would get one really bad hit in the middle of the night. I would suffer like crazy for 45 minutes but then it was gone for 24 hours. I can't take the pain that way anymore and I really have to sleep. I am like a walking zombie today after being up for three nights in a row. I am going to sit up in a chair tonight. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by Barry_T_Coles on Nov 4th, 2007, 7:59pm What slacker said; if you can prop yourself up with as many pillows as you can find to at least get you in a position where your you legs are flat on the bed & your torso is at or above 45 degrees, I agree that its not the most comfortable way to sleep but at least you can get some shut eye. My doctor explained to me that CH is not only neurological but vascular as well & if you can elevate your body in the same way you would if you had a broken foot the blood flow to that area is restricted & in our case the less blood to the head area is one way of reducing the effect. You could also check out Melatonin to help some people swear by it. Cheers Barry |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 4th, 2007, 10:19pm on 11/04/07 at 19:59:13, Barry_T_Coles wrote:
I think the melatonin could interfere with the effectiveness of the shrooms. I'm not positive on that though |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by ski2k on Nov 4th, 2007, 10:54pm Hey Jackieg... Have you tried the SPUT (small piece under tongue) treatment with the shrooms? A lot of people find this will abort an attack if taken right away. Also, make sure you're on the O2 for a good 5-10 minutes AFTER the attack goes away. I found that stopping it too soon made the attack come right back within 30 minutes. Maybe a SPUT while you're on the O2?? Just a thought... Melatonin helps a lot of the time too, but it is suspected that it CAN interfere with the seed/shroom treatment. Might want to try and avoid that. Hope this helps, and you can get some sleep! Adam |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by nani on Nov 5th, 2007, 12:45am Hi Jackie. Sorry you're struggling right now. You've been given good advice. Sleeping upright often helps, and SPUTs make excellent abortives. The only thing I might add, is to look for taurine supplements. Someone here had a lot of luck using them as a prevent, and it won't interfere with busting. Using a supplement as a prevent will help you avoid all the extra caffeine if you were to use an energy drink as an abortive. My 2 cents. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 5th, 2007, 3:55am btw, you might want to try upping the dose to 45-50 seeds. Everybody's a little different but the magic number for me seems to be around 50-60 seeds. And make sure you're waiting 5 days in between doses. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 5th, 2007, 5:56am I propped myself up. Hits at 10 pm, 11 pm, 12 am, 1 am, 2:30 am, 3:15 am, and 4:40 am. The last one being the longest and the most painful. After 25 minutes, I was betting worried that the O2 was not working. Thank God, it did! I have tried melatonin in the past with no luck. I'll try again. How much do you suggest? Also, I am out of shrooms. so it is all seeds for now. I am going to take 60 tomorrow night, since it will have been 5 days. Can I go right to sleep or are they more effective if I stay awake? I am not giving up amd I am definitely not giving in to the meds, although it is tempting. Nothing in 21 years has ever worked for me, only made me feel worse. The only things I have not tried are lithium and Topomax. I'm not really interested. I'm going to keep trying the seeds, at least 2-3 more doses. I have tried 2 or 3 times, but I hear cycles are difficult to break. I remain optimistic. Thank you for all you help everyone! |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 5th, 2007, 6:46am I'm not sure whether sleeping or staying awake has any effect on it. I usually dose during the day so I'm definitely awake. Another thing that helps me is smaller doses in between the big doses. I'll usually grind up 5-6 seeds with my teeth and hold them under my tongue for 30 minutes before I sleep everyday. Same thing in the morning. Good luck! |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 5th, 2007, 6:47am btw, how are you preparing your seeds? I usually grind them up in a peppermill and and soak them in 4 oz of water for at least 2 hours. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 5th, 2007, 7:31am I smash them with a hammer and soak them in a little white wine for several hours. The little doses were working well for 19 days. I was getting 4 hours at a time of sleep. but I wanted to take a break bedore doing the big dose tomorrow to get max effect. How long should I wait after before resuming little dose of seeds? |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by Pinkfloyd on Nov 5th, 2007, 8:33am on 11/05/07 at 07:31:38, jackieg wrote:
Hi Jackie, Sorry about the hell you're going through. Hopefully this break with nothing but 02 will help the next dose's effectiveness. Soak the seeds in water this time. They also only need to soak for an hour. I would go ahead and try the melatonin *after* the dose. I'd want to be off of it for at least a couple days *before* dosing to make sure all the right receptors are available for the LSA. Once the LSA settles in, the melatonin shouldn't hurt the effect. Hope this one does it for you. Bobw |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by Bob_Johnson on Nov 5th, 2007, 8:35am If the seeds and mushrooms are not working well, you might consider dropping them so that you can try melatonin (ca. 9mg) in the evening. Another old trick: Ergomar, 2mg sublingual tablets. One about one-hour before bedtime. In the absence of clear drug interaction data with seeds, etc., I'd not use Ergomar without some guidance from trustworthy sources. In years past, I've had good luck using Ergomar to prevent night time attacks. (This is an Rx item. Ergotamine, in various forms and combinations, has been used for decades for migraine and has been tried for CH attacks although it has been displaced by the more dependable response of the triptans.) Lastly, your experience with meds/O2 stopping being effective is not at all uncommon. Our collective experience here and medical literature is full of such experiences. Rather than continuing to use products which have stopped working, being prepared to start new trials to find a substitute is an essential state of mind. It may be old datum by now, but Dr. Diamond (of the Chicago clinic fame) use to report that the overall success rate for various meds was about 60%. That has been improved with the triptans--but it makes the point that we are a long way from finding treatments with 100% success. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by Pinkfloyd on Nov 5th, 2007, 8:37am on 11/05/07 at 07:31:38, jackieg wrote:
Since you gave it that break this time, I wouldn't wait past the effectiveness of the next big dose. Meaning, once it wears off, I'd be using small doses as needed, after the first 12 hours or so. Bob |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 5th, 2007, 12:26pm Last time I got stuck in a long cycle, with one small morning hit that would not quit, I tried the HBWR (sp) seeds. We cold not get the hull off and I ended up taking 8 whole ones. I had the worse night of my life that night. I was WASTED and sick to my stomach. i could not walk or talk. BUT THE CYCLE WAS OVER 24 HOURS LATER. I was told that I probably took too many and the hulls contained an ergot which probably made me sick. So my question is, is it possible that the ergot helped to break the cycle? If those seeds worked, how in the world do you get the hull off, it's like a rock! i can't go through another night like that because I honestly thought i was going to die. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by nani on Nov 5th, 2007, 1:17pm This would be a good time to remind everyone that RC and HBWR seeds are different, and dosing amounts are quite different. The HBWR seeds are larger, and need to peeled in order to avoid nasty side effects. Generally, one HBWR seed is equal to 5 RC seeds. RC seeds can be crushed whole. As Bob mentions above, it is only necessary to soak seeds in water for an hour. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by billyjoe on Nov 5th, 2007, 2:09pm For HBWR seeds, a pepper grinder can work. You can try to put them in whole, but I find it's better to break them apart with pliers and then grind them. After grinding, you need to sort through it and remove all the hard pieces by hand. Not a lot of fun, but not too hard either as the hard husks are pretty obvious. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 5th, 2007, 3:33pm on 11/05/07 at 13:17:21, nani wrote:
Do they lose their potency if soaked for more than an hour? |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by nani on Nov 5th, 2007, 6:45pm on 11/05/07 at 15:33:01, slacker032 wrote:
I'm not sure, but according to Dr Sewell's chemists, optimum extraction takes soaking crushed seeds for one hour in water. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by slacker032 on Nov 5th, 2007, 7:01pm Gotcha. I'd been soaking them overnight for around 5-6 hours so maybe I'm not getting the optimal results because of this. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by ski2k on Nov 5th, 2007, 7:03pm I'd like to say I'm glad you're not ready to give up on the treatment, Jackieg. There's been a lot of reports about people trying to break an entrenched cycle, finding that things get worse before they get better. I think it's great you're going to keep trying! I usually dose during waking hours, but last time I did it just before going to bed. The only difference I noticed, is I ended up having some strange (but entertaining) dreams! I don't really think it matters if you dose in the daytime or at night. Maybe dosing before bed might help you get some sleep?? I think it'd be worth a try. Some people use the seeds in SPUT fashion to abort hits, so maybe using them at night will help keep them at bay. Keep us posted, and good luck!! Adam |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by Kevin_M on Nov 5th, 2007, 7:30pm on 11/05/07 at 12:26:36, jackieg wrote:
I bought a small nail clipper, a larger set will do, depends on your fingers. The sharp edges pressed against the seed, with practice, can grab the thickness of the hull then press the clipper blades together, you'll see that portion stripped off. Takes a little practice and tedious, you may need to add an extra seed or two for the extra insides that might get scraped but it'll work and definitely better than digesting the hull. |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by jackieg on Nov 6th, 2007, 11:50am I am dosing with 50 seeds tonight. Last night was better than the night before. I took Adam's advice and stated on O2 longer. I also drank a large cofee after the first hit. I slept 1/2 hour, then 3. then 1 1/2, then 1 1/2. The hits were not quite as intense either, maybe Kip 7. Sleeping propped up did not help. I am having no daytime hits which is unusual. I am afraid to use melatonin because I'm afraid of getting hit at work if it stirs things up. I am taking these seeds tonight and praying to Jesus until I fall asleep. I'll post again with an update. Thanks again everyone for the feedback. Jackie |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by danielpeterson on Nov 6th, 2007, 5:29pm BEING into health, I surprised mySelf by seeing five (count em, 5) MDs my first episode in 2006. All I found out, besides Imitrex costs over 100 dollars a shot (got it at the ER), is that I get sick when I take Tylenol. In 2007 I did the new age route, finding Chiropractors cost a hundred dollars a session and you put peppermint under your back hairline. A WOMAN started making me a kuzu drink and that seemed to help, but now I would guess it was more about the attention she paid me than the Kudzu plant itself. I WOULD GUESS, for me at least, a lot has to do with the emotional currents going on below the surface. As I have stood up and said (as spc351 said here with the "tapping'' of the Emotional Freedom Technique) I would guess that the underlying emotional component is very, very important. READ Dr John Sarno's [u][/u]The Divided Mind. LOVE, Daniel R Peterson |
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Title: Re: Fear of Sleep... Need Quick Advice! Post by nani on Nov 6th, 2007, 5:41pm on 11/06/07 at 17:29:14, danielpeterson wrote:
Um, it probably was the kudzu. :) Read all this: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 pain free wishes, nani |
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