Author |
Topic: Lithium as Prophylactic (Read 2731 times) |
|
unsolved1
Guest
|
 |
Re: Lithium as Prophylactic
« Reply #25 on: Jan 10th, 2005, 6:01pm » |
 Quote  Modify
 Remove
|
I've been down the Lithium road enough to know that your method won't work for us all.
For you to think that clusters are always predictable is being close minded. I'm like Eric ... never know when a hit is coming.
Histamine has 'derailed' my clusters for now. The Lithium had nothing to do with it (although it does help others)
Since you're a clusterhead (I assume) and you have a computer (I assume) ... why haven't you been around ??
No hard feelings ... I'm glad your method seems to be helping you. Maybe it will help others.
Unsolved
|
|
 IP Logged |
|
|
|
BlueMeanie
CH.com Alumnus
New Board Hall of Famer
Gender: 
Posts: 1178
|
|
Re: Lithium as Prophylactic
« Reply #26 on: Jan 10th, 2005, 6:10pm » |
Quote Modify
|
Quote:| Clusters by definition occur on a regular schedule. |
|
Are you sure about that ? It's my guess, but episodics DO seem to have somewhat of a schedule, but Chronics are a whole different ballgame. Thanks for sharing. Your system just may help some people and that's what counts.
|
|
IP Logged |
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Lithium as Prophylactic
« Reply #27 on: Jan 10th, 2005, 6:20pm » |
Quote Modify
|
Quote:| Bob, I've never claimed all headaches are like mine. Only that part of our understanding of cluster headaches is that they occur at regular intervals as controled by the body's internal clock. You apparently agree with me because you say they can occur up to 8 times a day (which would be approximately every 3 hours) down to once every couple of days (every 48 hours). I've had them every 2 hours, which would be 12 times a day, wouldn't it? |
|
You're obviously a person who cannot be wrong. It may be part of your understanding but I have never seen anything on clusters that says they happen at evenly spaced intervals throughout the day. Some people get 4 attacks at night and none during the day. Some get 2 attacks back to back.
Lithium, much like verap, doesn't work as a rubber for everyone.
|
| « Last Edit: Jan 10th, 2005, 6:21pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: Lithium as Prophylactic
« Reply #28 on: Jan 10th, 2005, 6:56pm » |
Quote Modify
|
on Jan 10th, 2005, 5:51pm, chedden wrote:E-double: What did you do that took your headaches off the schedule? As I mentioned before, that can happen if you are using various drugs, including lithium. There are probably other ways it can be derailed.
Did you try stopping your treatment of choice and then see what happened? I simply can't imagine not having any idea when one might hit. At least, you must be able to make a guess, based on your history. Maybe one always happens after lunch or that daily briefing, or after a shower. Maybe have a few drinks to trigger one. There are only so many possibilites in 24 hours.
If that doesn't work, try taking one dose of lithium at any time point (assuming you are not on any other meds). That should prevent any clusters for a time. Then when you are hit with the first one after that, make a note of the time. Next day, do the same. The idea is to try to re-establish a regular and predictable schedule. |
|
This is my very first cycle out of 18 that I have taken any type of medication for CH.
That was the only variable.
By profession I collect and analyze data and can and can account for practically anything.
The CH this cycle was literally all over the place.
No specific times of day, freqency, duration......Totally random.
Very frustrating for any scientist!
I appreciate the question and the attempt sincerely.
That's just my body!
Best,
E x 2
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender: 
Posts: 7953
|
|
Re: Lithium as Prophylactic
« Reply #30 on: Jan 11th, 2005, 11:11am » |
Quote Modify
|
Quote:| before you tie this guy to the stake and light a fire under him |
|
I don't think anyone did that. I think we pointed out that not everyone suffers the same way or responds to meds the same way. We all thanked him for the info, too...so glad Mike got some relief!
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
vig
CH.com Alumnus
New Board Hall of Famer
CHit Happens
Gender:
Posts: 4401
|
|
Re: Lithium as Prophylactic
« Reply #31 on: Jan 11th, 2005, 11:17am » |
Quote Modify
|
glad mike got some relief, Margi.
I hope it continues.
|
|
IP Logged |
never, Never, NEVER quit. -Winston Churchill
|
|
|
Chet
New Board Newbie
Gender:
Posts: 30
|
|
Re: Lithium as Prophylactic
« Reply #32 on: Jan 11th, 2005, 11:55am » |
Quote Modify
|
Excuse me, Unsolved1, but you and all the other nay-sayers are the ones who are close-minded. I think your username says it all.
Suffer on, folks. Make them drug companies rich.
|
|
IP Logged |
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Lithium as Prophylactic
« Reply #33 on: Jan 11th, 2005, 12:22pm » |
Quote Modify
|
Quote:| Make them drug companies rich. |
|
Where do you get your lithium?
Quote:
We've all been suffering. Just because we didn't all jump on your bandwagon, doesn't mean we should have suffering wished upon us. 
Again, I will thank you for sharing your info. Someone got some relief and that's always a good thing.
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
Chet
New Board Newbie
Gender:
Posts: 30
|
|
Re: Lithium as Prophylactic
« Reply #34 on: Jan 11th, 2005, 12:29pm » |
Quote Modify
|
I would never wish suffering on anyone. It's your choice.
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Lithium as Prophylactic
« Reply #35 on: Jan 11th, 2005, 12:30pm » |
Quote Modify
|
on Jan 11th, 2005, 12:22pm, nani wrote:
Where do you get your lithium?
|
|
Lithium is one of the cheapest of the cluster meds out there. Even without a medical plan. I think the bottle of 100 tabs we got for Mike cost $12. And that's Canadian. At the time of purchase, it would have been what....maybe a buck, American? (OK, maybe eight bucks, American.) Anyone priced out Verapamil lately? Imitrex? $100 Cdn for 6 imitrex inhalers. $180 for a 60 day supply of verap. It's sure not the lithium that the drug companies are getting rich from.
So sad to see the argumentative reception Chet is getting here. Especially since he brought a gift and everything. Typical of most new treatments that arrive here though, I guess.
I'll say it again. THANK YOU, CHET!
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Lithium as Prophylactic
« Reply #36 on: Jan 11th, 2005, 12:35pm » |
Quote Modify
|
Quote:| Suffer on, folks. Make them drug companies rich. |
|
Pompous bastard!
|
|
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
nani
CH.com Alumnus
New Board Hall of Famer
Got kudzu?
Gender:
Posts: 7953
|
|
Re: Lithium as Prophylactic
« Reply #37 on: Jan 11th, 2005, 12:50pm » |
Quote Modify
|
Quote:So sad to see the argumentative reception Chet is getting here. Especially since he brought a gift and everything. Typical of most new treatments that arrive here though, I guess.
I'll say it again. THANK YOU, CHET!
|
|
You know I don't see how his arguing with us makes us argumentative. Each of thanked him, in almost every single response. And if you didn't notice...each of us has either been on or is on lithium. It just so happens it makes me feel weird, so I can't use it for my daytime hits (I don't get hit at night). Sheeesh...
|
|
IP Logged |
Others may come and go, but MY power is MINE.
|
|
|
unsolved1
Guest
|
|
Re: Lithium as Prophylactic
« Reply #38 on: Jan 11th, 2005, 1:15pm » |
Quote Modify
Remove
|
on Jan 11th, 2005, 12:30pm, Margi wrote:
Especially since he brought a gift and everything.
|
|
A Gift ???  I think not. I do believe that taking your meds in different ways/dosages may be helpful and his method may be helpful to others
BUT...
He did not bring us a cure all.
PS> Lithium takes awhile to get into your system ... right ??? So, how could one dose prevent a headache 2 hours later ??
|
|
IP Logged |
|
|
|
Chet
New Board Newbie
Gender:
Posts: 30
|
|
Re: Lithium as Prophylactic
« Reply #39 on: Jan 11th, 2005, 1:40pm » |
Quote Modify
|
To Nani:
I have never advocated being "on" lithium (or any other drug). It is always frustrating when people twist or misrepresent what one says just for the sake of defending their own viewpoint.
To Unsolved:
Precisely. It takes 2 hours for the lithium to reach maximum saturation. You time that single dose so that it reaches maximum saturation to coincide with the onset of the next cluster headache ("hit," if you prefer). I explained all that in my original and subsequent posts.
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Lithium as Prophylactic
« Reply #40 on: Jan 11th, 2005, 1:45pm » |
Quote Modify
|
on Jan 11th, 2005, 1:15pm, unsolved1 wrote:
A Gift ??? I think not. I do believe that taking your meds in different ways/dosages may be helpful and his method may be helpful to others
BUT...
He did not bring us a cure all.
PS> Lithium takes awhile to get into your system ... right ??? So, how could one dose prevent a headache 2 hours later ?? |
|
I'll tell you something. Watching my husband sleep peacefully pain free for the first time in weeks was most definitely a gift in our household. Where did anyone use the word "cure"? I sure didn't. Please don't put words in my mouth.
Chet was very patient with me yesterday through PM's, and I, too, doubted that the small dose of lithium could work that quickly on anyone. Mike is living proof that it can. And did. For what it's worth, Unsolved, I've done my homework here. Lithium is available in immediate release form. That must be the kind we have at home because Mike honestly did start to feel better within one hour of taking the pill.
And, Nani - Chet didn't start out by arguing, his first post was not combative at all. He did, as most people will, simply respond and answer the arguing that ensued. Who here among us doesn't rise to the occasion and fight back? I'm obviously one of the repeat offenders in this regard  , but I will fight for this guy's right to bring us something that helped his cluster pain in hopes that it can help another clusterhead. Guess what, it did. Isn't that what this forum is supposed to be about?
Now, I don't know Chet from a hill of beans. But he brought a viable suggestion to the board with first hand experience as a clusterhead who has found his personal control switch. (See? I STILL didn't say "cure". ) So, since Mike is otherwise med free and as the circadian pre-emptive strike idea makes perfect sense to me, we thought we would give it a shot. (I think being med-free is a HUGE part of the success here.)
Further - most folks who have been prescribed lithium have been instructed to try it at much larger doses. Mike was at 900 mgs at one point a few years back, combined with 720 mgs verapamil. It honestly didn't make much difference for him then, either. This is what Chet meant by pulsing instead of blanketing the system with lithium - we probably put too much lithium into Mike's system to be able to benefit from the resetting of the circadian clock. I dunno. Know what? I honestly don't care. Mike got a pain free night. So, obviously, has Chet. That's two clusterheads that this has helped, folks. Don't lose sight of that, ok?
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
unsolved1
Guest
|
|
Re: Lithium as Prophylactic
« Reply #41 on: Jan 11th, 2005, 1:47pm » |
Quote Modify
Remove
|
on Jan 11th, 2005, 1:40pm, chedden wrote:To Nani:
I have never advocated being "on" lithium (or any other drug). It is always frustrating when people twist or misrepresent what one says just for the sake of defending their own viewpoint.
|
|
Thread name "Lithium as Prophylactic"
|
|
IP Logged |
|
|
|
Chet
New Board Newbie
Gender:
Posts: 30
|
|
Re: Lithium as Prophylactic
« Reply #42 on: Jan 11th, 2005, 1:48pm » |
Quote Modify
|
More:
I'm going to sign off from this discussion (argument?) because I am very busy and have said most everything I have to say on the topic. I realize this solution may seem too complicated and/or too good to be true. For some of you it will be both. I hope that for some of you it will be a cure-all as well. It is for me.
Good luck,
Chet Hedden, Ph.D.
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Lithium as Prophylactic
« Reply #43 on: Jan 11th, 2005, 1:50pm » |
Quote Modify
|
I'm so sorry to see you go, DR. Hedden. I hope you continue to experience success and pain freedom with this dosing method.
You have my deepest thanks for your suggestion.
Margi
and, yes, "lithium as prophylactic" is aptly titled. Chet takes it while he is in cycle and then, as stated, tapers off it when his cycle is ending.
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Lithium as Prophylactic
« Reply #44 on: Jan 11th, 2005, 2:38pm » |
Quote Modify
|
Quote:| Who here among us doesn't rise to the occasion and fight back? |
|
Not me. I'm the least argumentative person I've seen on this board.
Make Love, Not War!
I wouldn't stress the Dr. thing. He may be a Dr. of aboriginal poetry or something (oops, I googled him and he's an IT, Instructional Technology type). In fact, working at a University, as I do, I've come to realize that the attitude and the PhD usually go hand in hand.
|
| « Last Edit: Jan 11th, 2005, 2:42pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
JoeS
CH.com Alumnus
New Board Junior
Gender:
Posts: 58
|
|
Re: Lithium as Prophylactic
« Reply #45 on: Jan 11th, 2005, 5:34pm » |
Quote Modify
|
Sure does know his knots though, if it's the same guy.
http://www.adventurecarolina.com/climbingknot.html#Hedden%20Knot
As far as the whole Lithium "argument," I only have a problem with this statement:
Quote:| Clusters by definition occur on a regular schedule. |
|
Mine are frequently late or early for their scheduled appointments.  (even in the absence of any medication, mind you).
Still, an informative thread. Could be help to many (may try it myself). Thanks for posting.
Joe
|
|
IP Logged |
Your mileage may vary. See your doctor for details. Offer void in Tennessee. Past performance is not indicative of future results. No warranty is expressed or implied. Do not taunt happy fun ball.
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: Lithium as Prophylactic
« Reply #46 on: Jan 11th, 2005, 5:54pm » |
Quote Modify
|
different guy, Joe, but LOL. 
I've since found out he's not a medical doctor - Bob was right, damnit (ow, that hurt). But he is a very learned guy though, doctor of philosophy, I believe?
we're going to get some lithium into Mike again tonight and see what happens. Hopefully a repeat.
|
|
IP Logged |
http://askusaboutourgrandkids.photosite.com/
And, on the Eighth Day...God created Beer (to stop the Canadians from taking over the world)
source unknown
IMHO (which in my universe is correct)
kathy copelin, ch.com 8/8/06
|
|
|
Bob P
New Board Hall of Famer
Shut up Bob!
Gender:
Posts: 3436
|
|
Re: Lithium as Prophylactic
« Reply #47 on: Jan 11th, 2005, 5:54pm » |
Quote Modify
|
Not sure about the knots. My search showed he spend time at the Univ. of Georgia Listserve. His posts are pretty arrogant over there too.
That's the same statement I have a problem with Joe. To say that your attacks have to come at certain intervals or else you probably have migraines just doesn't set right with me.
I can't speak to the lithium since I've never used it. No reason it wouldn't work though. Of course verap is also a very cheap medication, with few side effects and very effective as a prophylactic.
|
| « Last Edit: Jan 11th, 2005, 6:55pm by Bob P » |
IP Logged |
Mrs. Barlow, I never, and I repeat never, ever pissed in your steam iron.
"SHUT UP HUB!"
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
Gender:
Posts: 6458
|
|
Re: Lithium as Prophylactic
« Reply #48 on: Jan 11th, 2005, 9:26pm » |
Quote Modify
|
I prob. should not have gotten into the discussion b/c I have not even tried lithium yet......I just have come to learn that we are all unfortunately different which is why there is no single effective treatment
I just wish everyone some relief and that people share there experiences without condesention or arrogance.
That goes for all threads and people......
Good luck and glad you have found your trick. I will certainly keep it in mind if I ever try Lithium.
Margi thank you as always and very happy for your hubby!!!!!!!
Eric ( who will not follow his name with the alphabet soup that he has earned _
|
|
IP Logged |
I can't believe that I have to bang my
Head against this wall again
But the blows they have just a little more
Space in-between them
Gonna take a breath and try again.
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: Lithium as Prophylactic
« Reply #49 on: Jan 11th, 2005, 9:50pm » |
Quote Modify
|
Hey Margi, please let us know how hubby makes out tonight!!! I'll def be checking in tomorrow to see!
(I'm on lithium and verap, and this has been very interesting info indeed)
|
|
IP Logged |
http://www.myspace.com/taraann77
 
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss