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Title: Newbie from Indiana Post by Boyce on Jan 24th, 2005, 10:57am HI all.... I'm a newbie to this board, but not new to CH's For almost 15 years and two sinus surgeries, I fought with my ENT, trying to get newer and better pain killers, I was convinced that I had chronic sinusitus and so was he. Cat scans, MRI's at least once a year. He finally gave up and sent me to a Neurologist who diagnosed me as a cluster headache sufferer within 15 minutes...It was the first time I'd ever heard of CH's. I fit the checlist to a 'T', I use Prednisone as a maintenance, and Maxalt for the headaches... Stress seems to bring on an attack for me.....for example, I have three kids and have had an attack within the first few months each time. I'm currently about 1 week into an attack , and I seem to run 2-3 headaches a day...... So now I'm off to read up all the info on this board, it's a great resource already, and I've only been signed up for an hour or so.... |
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Title: Re: Newbie from Indiana Post by LeLimey on Jan 24th, 2005, 11:25am Hi Boyce nice to meet you! Reading the info here is about the best thing you can do, its a little goldmine! Have you tried O2? Its works brilliantly for me and I can't recommend it enough. If you have any questions about any treatments or therapies feel free to ask any of us and - thisbit is VERY important!!! - Let us know how you are getting on! Helen |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 24th, 2005, 12:47pm LeLimey.... Thanks for the response.... I'm just gald to finally know what the problem is....for so many years I struggled with it, killing my liver slowly with ridiculous amounts of OTC sinus tylenol, et all....was convinced for awhile there that I had a tumor of some sort....I may be the first person in the world to be happy to be diagnosed with CH's...When I have a cluster attack, I generally get 2-4 headahces a day, starting with about 10 mins after I wake up....I've found that caffeine in large amounts is a trigger and so is just one drink of alcohol in any form.... I haven't tried O2 yet, but have given it quite a bit of thought. I'm reading up on it on the board in another window right now :) Though I must say, being an old hippie, the 'shroom treatment intrigues me, tho I'm a bit afraid of the legal issues here in the US, as bad as the HA's are I still have my freedom ;;D The Maxalt seems to help, but sometimes can take 30 mins to take effect, and from what I'm reading, those that use O2 or shrooms successfully seem to get relief in just a few minutes....which is why I'm looking into O2 and/or shrooms.......and they're both natural wich appeals to my old hippie side again... I find it interesting that most migraine sufferes seem to poo-poo at CH's when I talk about them....especially when I say they are supposedly worse pain, but less in length (I've never had a migraine, so I don't argue)..... anyway....that's awful long winded for a newbie, so I'll quit there..... ;;D |
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Title: Re: Newbie from Indiana Post by Bob_Johnson on Jan 24th, 2005, 2:00pm Imitrex injection is generally better for clusters because it's faster acting than the other triptans. Since clusters hit hard and fast, you need an abortive which goes to work ASAP. |
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Title: Re: Newbie from Indiana Post by dagger on Jan 24th, 2005, 3:27pm By all means, stop thinking about 02 and get it! It is very effective for me and lots of others here. Good luck. |
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Title: Re: Newbie from Indiana Post by JJA on Jan 24th, 2005, 4:21pm on 01/24/05 at 12:47:36, Boyce wrote:
Freedom from jail or freedom from pain...I'm not sure which is more valuable. For a lot of us, there is no cost too high to get your life back. Still, it's not a decision to be made lightly. Being in jail with CH would sure suck! Jesse |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 24th, 2005, 5:42pm on 01/24/05 at 15:27:14, dagger wrote:
I've got an appointment with my Neurologist day after tomorrow to discuss it, I like having the portablility of the Maxalt, but if the O2 works faster, I want some of it at home.... Thanks for the reply.... |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 24th, 2005, 5:51pm on 01/24/05 at 16:21:02, JJA wrote:
Amen....though by some of the stories I read here, I don't have it too bad...my clusters last usually 5-8 weeks and I get 3-5 HA's a day during that time....and I've been known to go 1-2 years between clusters.... It's pretty cool to have such a resource for this...my first post was this afternoon and I'm already picking up some good advice....thanks again.... |
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Title: Re: Newbie from Indiana Post by LeLimey on Jan 24th, 2005, 6:00pm You can get smaller cylinders which you can take in the car with you or keep at work so O2 is portable too! Just something to bear in mind when talking to your neuro. Let us know how you get on with that too won't you? Helen |
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Title: Re: Newbie from Indiana Post by Kris_in_SJ on Jan 24th, 2005, 8:40pm Hi Boyce, Welcome to the family - sorry you have to be here, though. I think I would have only one big concern about the treatment you mentioned you're receiving. That would be Prednisone as maintenance. Many of us truly benefit from a Prednisone "taper-down." But we usually take it to avoid hits until other preventatives have a chance to kick in. Prednisone over the long haul can really wreck your body, your immune system and your bones. Many here take calcium channel-blockers as prevents (like Verapamil) at high doses. When started at the same time as the Prednisone (which is tapered off), it can really help. I can't speak to Maxalt - never tried it. Imitrex injections are my abortive savior - 5 minutes, and gone! I found alot of info at this link. It has helped my doc, as well: http://www.future-drugs.com/admin/articlefile/ERN020304.PDF Good Luck and Keep Posting, Kris |
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Title: Re: Newbie from Indiana Post by Redneck on Jan 24th, 2005, 10:56pm Hey Boyce The 02 is my lifesaver, I never go anywhere without at least a D cylinder in my truck. I have recently been using the 10mg Maxalt MLT that dissolves instantly. It seems to work rapidly. Good luck with the beast. Jim |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 25th, 2005, 8:07am on 01/24/05 at 20:40:39, Kris_in_SJ wrote:
Hey Kris..... Thanks for the concern on the prednisone.....I think I used the wrong terms when describing the way I'm using it. I am using it as a 'taper down' (60 mg for 2 days, 50 mg for 2 days, 40 mg for 2 days, etc....) and not an ongoing maintenance drug. I am all too familiar with the pred, my wife has had Crohn's disease for 20 years now, and I've become familiar with it's ugly side effects (it is after all a steroid and long term use is well documented as being detrimental to the body in several ways) I hadn't heard of the Verapamil or similar treatments for maintenance, but you better believe I'll be discussing it with the Neuro tomorrow morning... Thanks for the tip, this board gets more useful as a resource by the hour :) |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 25th, 2005, 8:23am on 01/24/05 at 22:56:38, Redneck wrote:
Hey Jim.... The Maxalt works well....it's purty cool (that's a redneck term for the rest of you out there ;) ) the way it dissolves on my tongue, and it doesn't taste too bad... I guess rapidly is a relative word, I find that it takes me about 30mins to get relief from the Maxalt unless I catch it with that very first 'hey, was that a headache starting?' twinge....then maybe only 15 mins of dancing before the relief washes in.... I'm also not real jazzed that I can only take Maxalt 3 times in a 24 hour period, I seem to be running more than 3 HA's a day when I'm clustering.... I really am interested in exploring the O2 as a solution, I'm not a crunchy-chewy, all natural, granola 3 times a day type (no offense to those that are :-* ) but the idea of being able to abort a CHA with just pure O2 and no drugs really appeals to me.... --Boyce |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 26th, 2005, 10:20am on 01/24/05 at 11:25:42, LeLimey wrote:
Helen.... just in case you're keeping score at home, I had an appt with my Neuro this morning, but he cancelled due to illness (something about not trusitng a skinny cook [smiley=laugh.gif] ) So I am rescheduled for Friday the 4th of feb which is like 9 days away...... So I have nothing new to report, other than I'm giving some thought to the welder's supply O2 setup, This Maxalt makes me twitchy and jumpy for a few hours them I feel like a zombie....I had a whopper of a HA last night woke me up after I went to sleep and another good one this morning at work....last night was 35 mins this morning was 45....I have a Respiratory Therapist friend so I could get the rebreather mask prolly free, my question is, does anyone know if your local home improvement store that sells welder's O2, also sells the valve to give me the right pressure/amount? (I'm pretty naive about it, never welded a thing in my life) |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 29th, 2005, 4:27pm So...the Neuro is still sick....his asst wasn't about to prescribe o2 without talking to him first.....told me I might try my GP....So I called them up, and they were all about giving me an o2 script, but without a 'desat test' that showed below 96% in my blood stream (not gonna work) or the OK from the Neuro (who is still out sick) the medical supply house wouldn't touch the script.... So I got some melatonin and benadryl today...gonna try that cocktail tonight....see how it works.... In the past few days it's been worst in the mornings....waking me up early with a 8-9 kipper.....hit it with the Maxalt, but then it's back in 2 hours, just as bad.... |
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Title: Re: Newbie from Indiana Post by msharpe2k1 on Jan 29th, 2005, 7:03pm Does anyone really know HOW to take the oxygen ?? I have tried it,at 3 am several times..just sitting on the end of the bed inhaleing in seems to intensify the pain...its too quiet..all I feel is the blasting pain behind my left eye and to suck oxygen for 15 min,as my neurologist tells me to do, is not doing a thing for me. It is an unbearable 15 min...I just get up and start the slight banging head on the wall trick,not hard,but just enough to give me pain somewhere elese for the moment..does oxygen work for anyone elese,and if it does,how the heck do you get thru waiting for it to work ??? -mike |
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Title: Re: Newbie from Indiana Post by Boyce on Jan 29th, 2005, 10:03pm Hey Mike.... I've not been able to try it yet.....but from what I read here, it's important that you get started on it right at the onset of the HA.....Check around in the MB here, there's some good tips on how much/how long/what kind of equipemnt..... And maybe some of the o2 vets will post some tips in this thread, if we ask nice ;;D --Boyce |
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Title: Re: Newbie from Indiana Post by yikes-another-one on Jan 30th, 2005, 9:50pm hardest part about waking up in pain, is you do not know how long it has been hurtting. I am a VERY sound sleeper, and if it doesn't become a k7, I will just roll over and go back to sleep. Most people that have success with the O2 say they hit it as soon as their eye waters and starts to twitch....not knowing if a shadow will progress to a full blown headache. KEEP a JOURNAL...that way you will know about what time of day it will happen, and can be prepared. It sucks to get hit a 3am every morning, but setting an alarm at 2:30 and sucking on oxygen, might just be the trick you need. Also check the tip, flow rate high, like 12 or 15, I hope I red that tip right.... my headaches last 50 minutes anyway so even taken the Zomig pills helps me survive. Knowingit will end, and not torture me for hours that is enough to keep me from tearing my eye out. good luck and best wishes. TJ |
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Title: Re: Newbie from Indiana Post by RichardN on Jan 31st, 2005, 2:01pm Boyce and Mike 02 is my only abortive . . . I go nowhere without it! If I'm awake, I will use it at the KIP2-3 level and kill him in a few minutes. If asleep, and wake with KIP 4-5, it takes a bit longer (I don't look at the clock anymore, just breath til it's gone) . . . then back to sleep without getting out of bed . . . NO DANCE! When I first got my script for 02, the day after the worst CH I ever had - still holds that position - I demanded and was given 02 and Verapamil. I was aided in that endeavor by material printed from this site. While the doc did give me an 02 script, it was for an 8lpm regulator, cannulae (little two-pronged nose thingy) and he indicated a 4lpm flow-rate. The way I used it was to turn the regulator to 8 lpm, hold my thumb over one of the "thingies", hold the other one to my mouth and breath slowly enough that you can feel the overflow . . . that is, breathing less than the regulator is putting out. This is a waste of 02, but you end up breathing closer to 100% 02 which is what you need to abort. 02 pain? . . . I hesitate to mention this, because it might deter someone from trying oxygen . . . . and if you have CH, you really need to give it a shot. So . . . . . . sometimes in the beginning, I would. after a few minutes, get an additional and distinctive "spike" in my temple . . . sometimes quite severe . . . I would stop, give the "spike" a few minutes to subside, and hit it again. Usually by the third round, he was beat. Yes, I had those occasions where he had too good of a hold by the time I woke, and couldn't avoid the dance . . .. but the important part of this messages is that the dance became the exception, not the rule. I seldom have any indication of that "spike" anymore, and have become so aware, day or night, of impending ch . . . the 02 is there, ready, and EFFECTIVE! Anyone else have the "spike"? You owe it to yourself to try. Hardest part is getting the script. Copy the pertinent info. Probably more than you wanted to know, Ramblin' Richard (02 lover . . can ya' tell?) |
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Title: Re: Newbie from Indiana Post by LeLimey on Jan 31st, 2005, 3:38pm Hi Richard! And you other guys too! I do'nt get the spike you mention but if I don't continue to breath the O2 at a lower rate for about ten-twenty mins after the ch tones down I ger a rebound with a vengeance! For me at least its important to not just stop but to lower the LPM and carry on for that bit longer.. but like Richard says O2 is the best! I can't advise you about valves and stuff with welders O2, the best one to ask would be Jonny as I know he has spoken of it before. Hope this helps and good luck on the 4th Boyce! Helen |
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Title: Re: Newbie from Indiana Post by Kris_in_SJ on Jan 31st, 2005, 3:56pm Hi Guys, I'm not a O2 girl - Imitrex injections are my abortive of choice. However, be sure you have a tank with high flow (8-12/min) and a non-rebreather mask. See the oxygen info to the left. For welder's set-up, Jonny is the man with the info. There's a link to him and several other experts at the bottom of the oxygen page. Good luck! Kris |
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Title: Re: Newbie from Indiana Post by BlueMeanie on Jan 31st, 2005, 9:34pm Welcome to Clusterville Boyce. Looks like you've got alot of good info already so I'll leave it at that. Hope your cycle is a short one this time around. |
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Title: Re: Newbie from Indiana Post by Boyce on Feb 1st, 2005, 3:14pm Hey Blue..... Thanks for the posts all....got my O2 yesterday....(long story short, the ins comany refused to pay for any more Maxalt until next month and the doc was out sick 'again')....however it's scripted at 3 lpm with nasal cannules.... Fortunately, I have a Resp. Therapist friend, who brought over a non rebreather mask and a straight mask...the non-rebreather was no good, couldn't keep the bag inflated at 8 lpm (which is the max on the regulator) but we taped up the holes on the straight mask, and ran with it at 8 lpm....it works like a champ, aborted three HA's with it, one last night and two today.....although they don't go completely away, they go down to kip 1-2 which I can live with......thinking if I can get 10+ lpm in a non-rebreather I can zap them completely... Still keeping my appt on the 4th with the Neuro and going to try and get the script fixed so I can use the non-rebreather and get a high flow regulator.... The Dr's office gave me some Relpax samples,(since the ins quit paying on triptans until next month) Took one last night before bed and slept like a champ....fisrt time in this cycle (3 weeks today) I haven't been up at the 4-5-6am timeframe with a kip 7+.....not sure if it was the o2 or the Relpax or even (wishful thikning) the cycle breaking early..... Things are looking up fo sho.....and I have alot of the people in this group to thank for helping me keep informed and sane ;;D ;;D ;;D ;;D ;;D |
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Title: Re: Newbie from Indiana Post by LeLimey on Feb 1st, 2005, 3:18pm Oh Boyce I'm chuffed to bits for you! Imagine what you'll do with a higer rate of O2 huh?! Its a long wait to Friday but please let us know how you are getting on again. It boosts all of us to hear someone getting on top of it! :) |
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Title: WRe: Newbie from Indiana Post by RichardN on Feb 2nd, 2005, 1:04am Way to go Boyce, See why those of us it works for are so jazzed about 02? I do have the 15 lpm regulator, but like yourself, was given the 8 lpm reg to begin with, which is why I posted the 02 info re 8lpm/cannula. They had to special order it and the non-rebreather mask was backordered forever . . . ended up getting one from a local hospital. My 02 supplier now has three other patients using 02 to abort clusters and I have sent them to this site to learn why (they've also given me about 12 free tanks over the last few months (I usually pay $10 per tank). Make the beast stand in the corner . . . you don't wanna' dance. ;) Be safe, Richard |
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Title: Re: Newbie from Indiana Post by LeLimey on Feb 4th, 2005, 3:59pm Hi Boyce, how did you get on today? Hope you have a new arsenal to battle the beast with! Helen |
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Title: Re: Newbie from Indiana Post by Boyce on Feb 9th, 2005, 9:53am on 02/04/05 at 15:59:52, LeLimey wrote:
Helen... My Neuro couldn't have been nicer about it, but more clueless about o2 therapy....basically asked me how I wanted the script to be written, and wanted me to report on how it worked...Got my 15 lpm regulator yesterday (wasn't near the o2 when the beast came knocking yesterday afternoon so used the Relpax to abort it). I did however abort a HA with it about an hour ago, waiting to see if it stays gone....found with the 8 lpm's I could get them down to kip 2-3, but they would be back in 2 hours even worse.....so quit using the o2 over the weekend until I could get the large regulator....now that I have it, as long as the larger flow rate keeps the HA's away, I want to try an wean off the triptan, I don't like the jittery/jumpy feeling it gives me I started the 2nd round of prednisone cycle breaker, and the cycle is down to 2 HA's a day (tomorrow is 4 weeks on this cycle) Been taking Relpax 1-2 times a day, augmented with bayer aspirin (think I read aspirins would bolster triptans' effectivness at the Robbins HA clinic webpage somewhere) I've also found that 12 mg melatonin + 25 mg benadryl at bedtime helps keep the nighttime beastly visits away. I don't think the light at the end of this tunnel is an oncoming trian after all!! [smiley=laugh.gif] had a PFDAN yesterday.....wishing that all of ya'll can get some of those too! |
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Title: Re: Newbie from Indiana Post by LeLimey on Feb 9th, 2005, 10:17am Well I always find that staying on the O2 for another 10-20 mins but at a lower rate after the beast has gone stops it from coming back too. Otherwise I have got rebounds from it in the past.. I'm glad you have it now though, thats great!! And fantastic about the pain free yesterday.. here's hoping you get a few more like that SOON! |
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Title: Re: Newbie from Indiana Post by Boyce on Feb 9th, 2005, 10:45am on 02/09/05 at 10:17:30, LeLimey wrote:
Thanks....I'll try that if it continues the pattern the way it was....I have been faithfully watching the clock and shutting down after 20 mins exactly every time....right now I'm about 2.5 hours past aborting the 8AM HA with the hi flow O2.....no sign of the beast yet (knock wood) --Boyce |
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Title: Re: Newbie from Indiana Post by SLanegan on Feb 9th, 2005, 7:25pm Hello to my new brother!!! I am so glad you feel the same way I do about this site. I found it a few days a go and WOW, what a absolute godsend for you and all of us clusterheads. You have already gotten a bunch of info for many more brothers and sisters out there that I don't want to give you any more. I just want you to know that we all know your pain and are always here for you. Someone is always on. So keep coming back. I haven't gone a day without spending time with you all. Hope your cycle is short and many PFDANs ahead for you and all!!!!! Master Sergeant Sean |
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Title: Re: Newbie from Indiana Post by Boyce on Feb 17th, 2005, 6:17pm Hey alll.... Update on my story.....5 weeks now the cycle is still here >:( Another round of pred late last week and I started feeling a little better, had a few PFDAN's but now have a head cold and seems the HA's are getting worse again. I do have the 15 lpm reg and the non-re-breather mask... Here's my newest observations.... O2 works better for me at nights, during the day I get rebounds sometimes... Aspirin with the Triptan (relpax) seems to extend the effects... Melatonin/Benadryl cocktail helps me sleep all night. ;;D Having a head cold and a cluster cycle at the same time is just plain bad news.... wearing a non-re-breahter mask in traffic gets a lot of curious looks.... PFDANs to all ! --Boyce |
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Title: Re: Newbie from Indiana Post by Kris_in_SJ on Feb 18th, 2005, 8:07pm Might be interesting to note - Eric (E-Double) was doing very well until he got a bad cold. The sneezing, nose-blowing thing turned out be be triggers for HA's he hadn't had in awhile. So sorry! Keep with your regimen. Kris |
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Title: Re: Newbie from Indiana Post by Boyce on Feb 20th, 2005, 9:57pm Yes....nose blowing and sneezing are triggers for me too... PFDAN's to all.... |
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Title: Re: Newbie from Indiana Post by Boyce on Mar 4th, 2005, 1:05pm Started on the Kudzu this morning....2 150mg Solarays, plan to take 2 more tonight.....trying to get off Triptans, I don't like the tired, yet jittery feeling they give me....Also started another prednisone cycle breaker yesterday....60mg for 2 days, 50mg for 2 days, 40mg for 2 days, etc.... I'm now about 7 weeks into this cycle, I know I shouldn't mess with trying a new med now, as this cycle (if it's like it has been in the past) will only last another couple weeks max.....and then I won't know if it was the kudzu or just the end of the cycle.... More interesing observations..... full blown CH's are always in the same spot, however my 'shadows' are in random spots around my head.... GNC sucks...(at least in Columbus, IN) Wifey can tell when I had a HA that day, by my "headache hair" She says after I rub my forehead/temple for an hour or so while dancing, it gives the front of my hair a distinctly greasy look :P I can blow my left nostril when I have a head cold (I'm a right side CHA guy), but if I blow the right nostril it will trigger a CHA. |
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Title: Re: Newbie from Indiana Post by nani on Mar 4th, 2005, 2:13pm Hi Boyce, nose blowing is a trigger for me, too. Not blowing my nose on that side can lead to inflamed sinus', which is also a trigger for me. :-/ Please post your info on the kudzu thread on the meds board, also. It's helpful to have all the info in one place, I think. Hope it works fast! Thanks and PF wishes, nani |
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Title: Re: Newbie from Indiana Post by jokrs2 on Mar 4th, 2005, 3:29pm First of all welcome to the site. Sorry about your diagnosis. Lots of help here. I would recommend trying all the "legal" abortives etc... as hallucinogens are not psychologicaly tolerated by many people and can be extremely dangerous. Additionaly buying them from someone put's you at the will of their knowledge of what was picked. VERY DANGEROUS as there are many look-alikes. Plus like what was said earlier "jail with CH would not be of interest. Best wishes and PFD's to you. Joe |
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Title: Re: Newbie from Indiana Post by Boyce on Mar 4th, 2005, 4:36pm on 03/04/05 at 14:13:39, nani wrote:
Yes, thanks, I've been watching the kudzu thread with great interest and when i get to a weeks time I will put a post in the survey thread.....on a positive note, first kudzu this morning at 8 (300mg Solaray)....no usual late morning HA....yet (it's 4:35PM here) Oh and on the blow vs stuffy.....I've actually taken to hiding in quiet corners at home/work and picking my nose on that side to sort of grease the wheels in getting it to run out without having to blow.... (i know, that's gross, but I've done worse) ;;D |
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Title: Re: Newbie from Indiana Post by Boyce on Mar 4th, 2005, 5:00pm on 03/04/05 at 15:29:54, jokrs2 wrote:
Joe.... Oddly enough I was relieved to get the CH diagnosis....finally have a name for the beast. I do have some recreational experience with hallucinogens (shhhhh! :-X ) but that would be a last resort....I can't imagine at this point getting off the triptans for 5 days just to try it.....best wishes and PFD's to you as well.... |
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Title: Re: Newbie from Indiana Post by Boyce on Mar 4th, 2005, 9:18pm on 03/04/05 at 16:36:31, Boyce wrote:
Just an update....Shadows all afternoon....2 more 150mg Solarays at 530PM....started kip2/3 HA around 6pm, still here at 9PM....just took my 9mg Melatonin, 25mg Benadryl, and 1 more 150mg Kudzu (that's 750mg today, too much?, not enough?) Going to bed early tonight and without a triptan (relpax) before bed for the first time better than a month....wish me luck.... |
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Title: Re: Newbie from Indiana Post by LeLimey on Mar 5th, 2005, 5:58pm How did you get on Boyce? No news is GOOD news I hope *fingers crossed* |
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Title: Re: Newbie from Indiana Post by Boyce on Mar 6th, 2005, 2:34am on 03/05/05 at 17:58:18, LeLimey wrote:
Well let's see....I'm now 48+ hours off relpax and onto kudzu.....mostly PFDAN's .....I find that 300mg at once of kudzu is too much for me, makes me tired and light headed....first day I took 300mg @ 8am that was OK, I was at my desk at work all day, 300mg @ 530pm which really made me drowsy and woozy.....and 150mg @930pm with my 25 mg benadryl and 9mg melatonin. before I literally dropped into bed..... Today I started with 150mg @ 9AM, then 150mg @ 1pm, 150mg @ 6pm, and 150mg @ 12 midnight...it's now 2:25am and I'm just now getting to bed (that's a long story) had an exercise triggered kip 2/3 around 6pm (which is a first for me, execise usually does my cluster head well..., and a slight, nagging, two sided (suspect it was sinus, I've still got a good head cold) HA around 6 this morning, two aspirin and back to sleep.... The first day on the Zu I was getting some pretty good shadows all day (kip 3/4 for 10 mins at a time).....then I realized that I had forgotten the aspirin I was taking 2 x a day with the Relpax...so on day 2 I added that back and and the shadows are minimal..... so mixed results for now....Zu is doing a good job, not as good as the relpax was....but I'm going to give it at least a full week to see if I can figure out how it will work best for me.... PFDAN's to you all.... --Boyce |
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Title: Re: Newbie from Indiana Post by Boyce on Apr 14th, 2005, 5:15am HI all..... Wondering where I went? ;;D I went to Hawaii, about a full week after my cycle ended, and tested my alcohol trigger with a week full of Luaus, beers and MaiTais [smiley=me&mb.gif] well....my cycle ended after a few weeks on Kudzu.... Now I am a victim of too much beta testing.... I have three possible reasons for my cycle ending: 1. - Kudzu....4 weeks or so of it and the cycle is gone 2. - Massage....friend of my wife's who is a massage therapist, was giving me weekly massages, concentrating on the head and neck. 3. - Time....This was a 12 week cycle for me, which is longer that usual, tho not unheard of. next cycle, I'll have to be more selective in my approach, as hard as that is to do....whatever gets rid of the beast for the moment is what I'll do....just like always... PFDAN's to all!!! |
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Title: Re: Newbie from Indiana Post by Kris_in_SJ on Apr 14th, 2005, 8:32pm Hi Boyce, I'm just glad you're feeling better and had a great vacation complete with alcohol in all forms. Also glad to hear from you again. Stick around, my friend. You're sure to help someone else who comes along. Hugs, Kris |
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Title: Re: Newbie from Indiana Post by Boyce on Apr 15th, 2005, 1:44pm on 04/14/05 at 20:32:51, Kris_in_SJ wrote:
Thanks, Kris.....and yup, I've got this MB bookmarked....and will be looking in regularly.... |
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Title: Re: Newbie from Indiana Post by Boyce on May 5th, 2005, 11:10pm AAAARRRRRRRRRGGGGGHHHHHH! 5 weeks pain free....and now it appears another cycle has started..... 4 days now with hits at least 2x a day.... :( Back on the kudzu I go.....This is the first time I've seen less than 6-7 months between cycles....keep your arms and hands inside the car at all times...here comes the CH rollercoaster again..... [smiley=yikes.gif] |
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Title: Re: Newbie from Indiana Post by LeLimey on May 6th, 2005, 7:19am Oh bugger.. Boyce I'm so sorry to hear you are back in cycle again. Thats not fair. Get yourself some kudzu again as it really seemed to do the job for you last time didn't it? I like hearing from you but not like this so get it sorted okay?!!! ::) |
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Title: Re: Newbie from Indiana Post by SusieWong on May 6th, 2005, 12:55pm Really sorry that you're being hit again Boyce-and so soon after the last time-seems sooo unfair. Keep strong and try to keep smiling. :( Sx :-* |
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Title: Re: Newbie from Indiana Post by Boyce on May 8th, 2005, 12:20am Thanks, ladies..... Yeah....well, the good news is that I had enough of a break between cycles to have a nice vacation.....and with the Kudzu, I haven't really been hit hard except the first couple days, when I refused to believe they were CH's......kept thinking just bad sinus HA's....but was just fooling myself..... going to try and get through this cycle on Kudzu alone....we'll see how it goes.... |
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Title: Re: Newbie from Indiana Post by Boyce on Jun 20th, 2005, 3:15pm Bump.....[smiley=wave.gif] well....I tried, but either the demon has found it's way around the Kudzu or the Solaray folks stopped making the kudzu strong enough. [smiley=huh.gif] I'm inclined to believe the latter, because I started taking 2-3 capsules at a time after getting no HA relief from just one as I had before. And noticed a distinct lack of the shakey/light headed feeling that I experienced taking more than one capsule the first go-around with Kudzu, I also noticed that with bottles, #2 and 3 the capsules are a much lighter green color, not sure that has any bearing on it. However, I had to go back on th Relpax 2x a day, with the O2 to fight off either the 9am or the 8pm HA's (depending on what time of day I took the Relpax... Seems to manage it pretty well. The cycle is easing up some now, the morning HA's are gone, only getting hits in the afternoon, and taking 1 Relpax at night to help me sleep through the night. if I keep getting afternoon hits, I may start Benadryl/Melatonin back up at night [smiley=sleep.gif] and save the Relpax for the afternoons.... |
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Title: Re: Newbie from Indiana Post by jcmquix on Jun 21st, 2005, 10:31am [smiley=wave.gif]Hi Boyce Well I am not sure if I am supposed to do it here, but Thanks for the vote of confidence. I just go off the handle at times and I found out that is better understood here, than doing it at home. [smiley=hammer.gif] I know things can only get better, I get to go see my GP Doc this evening at 6, after work. He already said that he can not do much for me, but I am going to finally get to see the new Nero Doc next Thursday (Thank God). [smiley=bow.gif] I am going to ask my Doc for something temporary, like Trex (Inj) just to get me through this wk & wkend. But I am going to also stay on the Benadryl/Melatonin at night with the Hott shower and early bed time. I know I had several visits from the BEAST last night (this am), but I am atleast stirring the BEAST up. [smiley=bash.gif] I hope you also find PF days real soon. [smiley=thumbsup.gif] |
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Title: Re: Newbie from Indiana Post by Boyce on Jun 21st, 2005, 11:01am Hey Charlie..... my best advice for that Neuro appt is to go into it having done all your homework....print and take all the info you can find about treatments and diagnosis of CHA's.....here's a couple PDF's I found particularly helpful.... http://www.headachedrugs.com/pdf/HA2005.pdf http://www.brightok.net/~mnjday/chtherapy.pdf I had to educate my Neuro some, and now when I get into a CHA cycle....all I have to do is call his office and get the scripts I need (o2 and Relpax). When I am hard into a cycle....I take Relpax 40mg twice daily, each does gives me about 8-10 PF hours....then when the beast starts showing it's face between doses, I knock him down with O2. I use 15 lpm (the local medical O2 house doesn't have a regulator that gives 12 lpm) and usually 15-20 mins is good for me. I recommend huffing the O2 for 5-10 mins after the pain goes away, if I quit the O2 as soon as the pain leaves, it comes back in 15 mins worse than before.... |
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Title: Re: Newbie from Indiana Post by jcmquix on Jun 21st, 2005, 12:00pm [smiley=wave.gif] Hey Boyce, Thanks for the information, believe me I am going to use all of it when I get to see my Nero Doc for the first time. I did get all the info in the links that you left me there, and thanks again. [smiley=bow.gif] I just hope my GP can give me some relief for a few days, I am about to go burry my head in the sand. [smiley=bigcry.gif] I am gonna get real pushy with him today, [smiley=hammer.gif] cause I still have over a week before I will see the new Doc. [smiley=smokin.gif] Have a PF evening, I will be on Yahoo Mess Thingy later, I am jcmquix, look me up if you are on. |
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