Author |
Topic: Newbie from Indiana (Read 1313 times) |
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
 
 
Gender: 
Posts: 11720
|
 |
Re: Newbie from Indiana
« Reply #25 on: Feb 4th, 2005, 3:59pm » |
 Quote  Modify
|
Hi Boyce, how did you get on today?
Hope you have a new arsenal to battle the beast with!
Helen
|
|
 IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Boyce
New Board Newbie
Gender: 
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #26 on: Feb 9th, 2005, 9:53am » |
Quote Modify
|
on Feb 4th, 2005, 3:59pm, LeLimey wrote:Hi Boyce, how did you get on today?
Hope you have a new arsenal to battle the beast with!
Helen |
|
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!! 
had a PFDAN yesterday.....wishing that all of ya'll can get some of those too!
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Newbie from Indiana
« Reply #27 on: Feb 9th, 2005, 10:17am » |
Quote Modify
|
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!
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #28 on: Feb 9th, 2005, 10:45am » |
Quote Modify
|
on Feb 9th, 2005, 10:17am, LeLimey wrote: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! |
|
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
|
|
IP Logged |
|
|
|
SLanegan
New Board Newbie
I am an American Soldier!!! Proud of what I do!!!
Gender:
Posts: 30
|
|
Re: Newbie from Indiana
« Reply #29 on: Feb 9th, 2005, 7:25pm » |
Quote Modify
|
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
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #30 on: Feb 17th, 2005, 6:17pm » |
Quote Modify
|
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.
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
|
|
IP Logged |
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: Newbie from Indiana
« Reply #31 on: Feb 18th, 2005, 8:07pm » |
Quote Modify
|
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
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #32 on: Feb 20th, 2005, 9:57pm » |
Quote Modify
|
Yes....nose blowing and sneezing are triggers for me too...
PFDAN's to all....
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #33 on: Mar 4th, 2005, 1:05pm » |
Quote Modify
|
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 
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.
|
|
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Newbie from Indiana
« Reply #34 on: Mar 4th, 2005, 2:13pm » |
Quote Modify
|
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
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
jokrs2
New Board Old Timer
Eventually He will make us pain free!
Gender:
Posts: 480
|
|
Re: Newbie from Indiana
« Reply #35 on: Mar 4th, 2005, 3:29pm » |
Quote Modify
|
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
|
|
IP Logged |
Given strength, courage & a sound mind!
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #36 on: Mar 4th, 2005, 4:36pm » |
Quote Modify
|
on Mar 4th, 2005, 2:13pm, nani wrote: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 |
|
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)
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #37 on: Mar 4th, 2005, 5:00pm » |
Quote Modify
|
on Mar 4th, 2005, 3:29pm, jokrs2 wrote:| 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 |
|
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!  ) 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....
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #38 on: Mar 4th, 2005, 9:18pm » |
Quote Modify
|
on Mar 4th, 2005, 4:36pm, Boyce wrote:
................on a positive note, first kudzu this morning at 8 (300mg Solaray)....no usual late morning HA....yet (it's 4:35PM here)...................... |
|
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....
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Newbie from Indiana
« Reply #39 on: Mar 5th, 2005, 5:58pm » |
Quote Modify
|
How did you get on Boyce?
No news is GOOD news I hope *fingers crossed*
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #40 on: Mar 6th, 2005, 2:34am » |
Quote Modify
|
on Mar 5th, 2005, 5:58pm, LeLimey wrote:How did you get on Boyce?
No news is GOOD news I hope *fingers crossed* |
|
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
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #41 on: Apr 14th, 2005, 5:15am » |
Quote Modify
|
HI all.....
Wondering where I went? 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 
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!!!
|
|
IP Logged |
|
|
|
Kris_in_SJ
New Board Hall of Famer
There's no place like home.
Gender:
Posts: 1539
|
|
Re: Newbie from Indiana
« Reply #42 on: Apr 14th, 2005, 8:32pm » |
Quote Modify
|
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
|
|
IP Logged |
I'm a small woman in small town being chased by a VERY BIG BEAST!
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #43 on: Apr 15th, 2005, 1:44pm » |
Quote Modify
|
on Apr 14th, 2005, 8:32pm, Kris_in_SJ wrote: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 |
|
Thanks, Kris.....and yup, I've got this MB bookmarked....and will be looking in regularly....
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #44 on: May 5th, 2005, 11:10pm » |
Quote Modify
|
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..... 
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: Newbie from Indiana
« Reply #45 on: May 6th, 2005, 7:19am » |
Quote Modify
|
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?!!! 
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
SusieWong
New Board Newbie
I love YaBB 1G - SP1!
Gender:
Posts: 17
|
|
Re: Newbie from Indiana
« Reply #46 on: May 6th, 2005, 12:55pm » |
Quote Modify
|
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 
|
|
IP Logged |
Tomorrow is another day.
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #47 on: May 8th, 2005, 12:20am » |
Quote Modify
|
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....
|
|
IP Logged |
|
|
|
Boyce
New Board Newbie
Gender:
Posts: 45
|
|
Re: Newbie from Indiana
« Reply #48 on: Jun 20th, 2005, 3:15pm » |
Quote Modify
|
Bump.....
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.  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  and save the Relpax for the afternoons....
|
|
IP Logged |
|
|
|
jcmquix
New Board Hall of Famer
Gender:
Posts: 738
|
|
Re: Newbie from Indiana
« Reply #49 on: Jun 21st, 2005, 10:31am » |
Quote Modify
|
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.
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).
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. 
I hope you also find PF days real soon. 
|
| « Last Edit: Jun 21st, 2005, 10:33am by jcmquix » |
IP Logged |
Would the owner of the propane torch, egg beater, pipe expander and vise grips please claim these items. They're lodged in my head and I need the space. (burnt-toast)
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss