Author |
Topic: What would you do??? (Read 922 times) |
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender: 
Posts: 141
|
 |
What would you do???
« on: Oct 1st, 2006, 2:04pm » |
 Quote  Modify
|
Hi again people, right need some advice if poss.
Ok, i'm Chronic (i think  ) been in this horrible cycle since middle of July.
Currently taking 480mg Verap & Melatonin at night.
Have been getting up to 6 horrible hits a day, then sometimes only 1 or 2, this cycle is nuts, Ch's are all over the place.
Things got so bad last week again I had to start another pred taper purley to get a couple of pain free day's if poss, well I got one anyway  , then the things seem to beak through the pred, currently coping with just one Imigran jab a day but im sure things are going to get worse as they usually do!
Anyway, i'm seeing my Neauro on tuesday & I desperatley want to try & obviously stop these ch's for a while as its affecting work & everything.
The Verap dosen't seem to be doing a great deal so would you get the Neuro to up it to say 720 mg??
The only other options I can see is to try Topomax which I don't want to cos of the side effects or try lithium?
Again with Lithium i'm not over keen cos of the side effects etc.
Don't get me wrong if either of these two were to work, stuff the side effects, being CH free is more important to me!
So is the best thing to do 1st, up the Verap & go as high on that with the neauros sayso & see if that sends the bastards into remission before trying the other meds?
Just wondering what you guys would do. Any other input or advice, greatly appreciated.
Many Thanks as usual.
Paul
|
|
 IP Logged |
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: What would you do???
« Reply #1 on: Oct 1st, 2006, 2:11pm » |
Quote Modify
|
I haven't tried topomax so I can't speak to that. I've been using lithium as my primary preventative for many years. For me the only side effects are I pea a lot for the first 2 weeks, I get a little bit of the tremors in my hands noticeable only to me, and I get a small degree of lethargy, easily overcome with a shot or two of coffee. That's at 1200 mg a day, I weigh 190 pounds for comparison. Good luck to you, sounds like you could use a break.
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #2 on: Oct 1st, 2006, 2:28pm » |
Quote Modify
|
Cheers Guiseppi.
I just want to clear something up if poss??
Lithium, is this the same Lithium as used for manic depression????
Saw a program on it the other night with Stephen Fry & it looked quite horrific  .
Just surprised as some people on here swear by it, maybe have to give it a go.
|
|
IP Logged |
|
|
|
Charlotte
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender: 
Posts: 1932
|
|
Re: What would you do???
« Reply #3 on: Oct 1st, 2006, 2:54pm » |
Quote Modify
|
Paul, I felt the same terrified way until I met Guiseppe who is one of the most grounded sane people I've met. I was all ready to request it when I went to the neuro 8-4-06. The neuro threw a wrench in my plan by deciding I do not have ch or cph. I return to the neuro on Thursday. I have idea what he will say this time, but probably more poking with the pin on my face.
If you have ch, lithium may work. For some. May not work for others.
Also, manic-depression is also a cyclical occurrence.
Charlotte
|
|
IP Logged |
|
|
|
Guiseppi
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2703
|
|
Re: What would you do???
« Reply #4 on: Oct 1st, 2006, 2:57pm » |
Quote Modify
|
Yeah, my doc said that's how they stumbled onto it for ch. The mentally ill with ch would go off their lithium and their ch would come back! One more in a long line of "accidental" medical discoveries! I'm in law enforcement and carry a gun so my medical options are very limited. Lithium has been extremely effective with oxygen, cafergot and imitrex as back ups.
When I'm on full dose of lithium my beat partners can't even tell the difference in me so believe me you're not like a walking zombie! I resisted the treatment for years because I had the same misconceptions about using a "mental illness" drug for CH. It may or may not work for you, with this condition you sometimes have to leave your comfort zone a bit! Hoping you find some peace.
Guiseppi
|
|
IP Logged |
Why are all sensors, seeking intelligent life, pointed AWAY from earth?
|
|
|
Charlotte
CH.com Alumnus
New Board Hall of Famer
I love YaBB 1G - SP1!
Gender:
Posts: 1932
|
|
Re: What would you do???
« Reply #5 on: Oct 1st, 2006, 3:45pm » |
Quote Modify
|
Ask your neuro what he or she thinks, and let us know.
I'm going to ask my neuro on Thursday if he thinks lithium may work, or if he considers the treatment plan I'm on to be effective. I believe my current med plan is as effective or better than anything in the past, so I will ask him if we can continue & perhaps modify it a bit. Not good for preventing, but better than ok for pain management.
The odds are 75 % that I will have a visual aid for the neuro to look at as I've been getting minicycle after minicycle with back to back hits for over a week.
Charlotte
|
|
IP Logged |
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #6 on: Oct 1st, 2006, 5:06pm » |
Quote Modify
|
Cheers for your replies so far people, really interesting. So the decision looks like, weather to just up the verap or try Lithium as well.
|
|
IP Logged |
|
|
|
kcopelin
CH.com Alumnus
New Board Hall of Famer
good grief
Gender:
Posts: 536
|
|
Re: What would you do???
« Reply #7 on: Oct 1st, 2006, 5:16pm » |
Quote Modify
|
As to upping the verap-many people are on very high doses-my neuro wouldn't let me go over 360mg because my blood pressure is already pretty low (90/50
I tried lithium-didn't work for me-but we are all very different. And I've met Guiseppi-he really is a poster child for normalicy.  
(Actually he's not noticeably weirder than the rest of us, which says alot...)
Good luck prcole!
PFDAN ahead for you!
kathy
|
|
IP Logged |
Words count, chose carefully.
|
|
|
E-Double
CH.com Alumnus
New Board Hall of Famer
Are we ourselves?
  
Gender:
Posts: 6458
|
|
Re: What would you do???
« Reply #8 on: Oct 1st, 2006, 5:44pm » |
Quote Modify
|
What kind of verapamil are you taking?
I had bad side effects on both Lithium and topodumbass yet preferred and had better results overall on Lithium.
The difference was blah and confused on lith vs. a vegetable and depressed on topastuff
|
|
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.
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #9 on: Oct 1st, 2006, 5:51pm » |
Quote Modify
|
Hi E-Double
I'm taking 480mg of modified release.
Ive heard there are different releases, if this isn't the right one then maybe someone could enlighten me?
|
|
IP Logged |
|
|
|
LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
|
|
Re: What would you do???
« Reply #10 on: Oct 1st, 2006, 6:12pm » |
Quote Modify
|
Paul its the sustained release that isn't so effective hon!
BTW, I tried Lithium, no side effects whatsoever but no help either. Alot of people find it useful as a combo with verap so you could start one with the other.
Good luck whatever you decide to do and don't forget where I am if you want or need anything okay?!
Helen
|
|
IP Logged |
The arsehole I'm divorcing needs to get a life and stop stalking mine
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #11 on: Oct 1st, 2006, 6:20pm » |
Quote Modify
|
Cheers Helen.
Well at least I know that i'm taking the right kind of Verapamil......all i'd like now is for something to bloody work!!!!!!!!!!
|
|
IP Logged |
|
|
|
chopmyheadoff
New Board Old Timer
Its only a headache, deal with it - SMACK
Gender:
Posts: 481
|
|
Re: What would you do???
« Reply #12 on: Oct 2nd, 2006, 3:33am » |
Quote Modify
|
hiya mate - id ask neuro to boost up the dose of verapamil. im only on 480mg a day but get 99%relief from that. i may have 1ha a week !!
im sure others on here take 960mg (I THINK) so there is still room for upping.
good luck bro !!
chop
|
|
IP Logged |
|
|
|
BB
CH.com Alumnus
New Board Newbie
I love YaBB 1G - SP1!
Posts: 0
|
|
Re: What would you do???
« Reply #13 on: Oct 2nd, 2006, 4:27am » |
Quote Modify
|
Hi there
Whether you should up the verapamil or not depends TOTALLY on how good your heart is and how low your blood pressure already is now.
Verepamil lowers your blood pressure so if its already low now you should not increase the dose or you will start fainting !!
It also can cause heart block or abnormal heartbeats if your heart cant take it. Your dr will need to monitor your blood pressure AND do an ECG to see if you can tolerate higher dose.
If your BP is fine and your heart is OK then its a good idea to up Verapamil first. The dose can be as high as 1000mg.
If not then try Lithium. Its pretty safe. The most common side effect is that it does make you a bit tired and lethargic and it causes a little hand tremor that makes your finger grips weak, so you tend to drop things but otherwise its not that bad. Of course the list of possible side effects are long, but you never know which one you would get if any at all until you try it.
All side effects of meds tend to get better once your body adjusts to it so dont be too scared of possible side effects. Plus they will all go away once you stop the meds.
Good luck with it all and painfree wishes to you.
Annette
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: What would you do???
« Reply #14 on: Oct 2nd, 2006, 10:18am » |
Quote Modify
|
don't let the lithium freak you out - the cluster dose is much lower than that prescribed for bipolarism. My husband has used it in the past and has seen mixed results with it - very similar side effects as to what Eric (E-Double) describes. A morose case of the blahs and confusion that really lingered for him after he tapered off it.
He has been as high as 720mg on the verapamil, but he did use the sustained release version of it.
I think one option always has to be to consider the possibility of tapering off everything to let your body regulate again and then trying a different route. I'm not sure if the alternatives are an option for you, but I'm a big believer in all things natural in the war against cluster. I can't count how many clusterheads who've seen their cluster cycles extended because of verapamil, and increase of hit frequency with Imitrex (Imigran). Please do discuss this option with your doctor, ok?
Oh and you're not chronic - you have to be in cycle for 12 consecutive months without a break of more than 30 days unmedicated pain freedom to be considered chronic.
|
|
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
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #15 on: Oct 2nd, 2006, 11:51am » |
Quote Modify
|
Hiya Chop,
glad the 480mg Verap is working for you & your only getting one a week.
If I only get one a day at present ive had a result!
Cheers for all the other replies, ive been reading with interest.
Margi, the reason I think im chronic is that I don't think ive been more than a week in the last 2 years without a CH,
When i m not in a cycle like the one im in now, I will still get a CH at night a couple of times a week at least usually.
Annette I know your right about the Verap & the heart stuff, I think I have a good one hopefully so the increase in Verap shouldn't be a problem, anyway I'll see what the neauro says tomorrow.
|
|
IP Logged |
|
|
|
Margi
CH.com Alumnus
New Board Hall of Famer
Nuthin like a good neck rub!
Gender:
Posts: 3757
|
|
Re: What would you do???
« Reply #16 on: Oct 2nd, 2006, 12:03pm » |
Quote Modify
|
on Oct 1st, 2006, 2:04pm, prcole18 wrote:Hi again people, right need some advice if poss.Ok, i'm Chronic (i think ) been in this horrible cycle since middle of July.
Paul |
|
sorry, Paul - I didn't realize that you had been in cycle longer than what you said here. My confusion.
|
|
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
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #17 on: Oct 2nd, 2006, 12:35pm » |
Quote Modify
|
Margi no need to apologise. Im in the middle of one mental cylcle, which is in one long cycle, even im confused!
|
|
IP Logged |
|
|
|
Mr. Happy
CH.com Alumnus
New Board Hall of Famer
If I can do it, it ain't art.
  
Gender:
Posts: 2217
|
|
Re: What would you do???
« Reply #18 on: Oct 2nd, 2006, 1:16pm » |
Quote Modify
|
Some comments on Lithium Pulsing from a while back.
Can't find the source anymore, but the recommendation on Verap was Standard, Immediate Release every eight hours. Pretty sure it was a Goadsby comment.
|
|
IP Logged |
May those who don't want any
Have memories of never getting any.
|
|
|
Richr8
New Board Hall of Famer
It's all about today...
Gender:
Posts: 1396
|
|
MAybe I'm a dope...
« Reply #19 on: Oct 2nd, 2006, 5:31pm » |
Quote Modify
|
...but I've read through here and only see one minor mention of Oxygen by G, and no inidication that you have tried it. Excuse me if you have, but if not, you need to get some today. There is plenty of information posted here on the topic and links on the left. The short version, you need atleast 15 lpm through a non-rebreather mask. It works miracle for many of us.
|
|
IP Logged |
pf wishes,
Rich
...because yesterday is history and you never know what tomorrow will bring.
"Med free"- A few seeds and lots of O2-LG but not great.
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #20 on: Oct 2nd, 2006, 5:46pm » |
Quote Modify
|
Hi Richr8
I have tried O2, it didnt do a great deal for me. I will mention it again to the Neauro tomorrow & may possibly give it another go.
|
|
IP Logged |
|
|
|
unsolved1
Guest
|
|
Re: What would you do???
« Reply #21 on: Oct 2nd, 2006, 11:22pm » |
Quote Modify
 Remove
|
Just wanted to say ... be careful with these drugs. Find out as much as you can before you take them, if possible.
Verapamil @ 400mg/day about killed me when it dropped my BP and heart rate dangerously low.
Topamax left me a spaced out idiot and caused kidney stones twice !! OUCH !!
Lithium is the only one that didn't hurt me ... but didn't help either. You'll need blood tests soon after you begin taking this. 'Lithium Levels' must be regulated.
Goodluck
UNsolved
PS. How about a Medrol Dose Pak ??
|
| « Last Edit: Oct 2nd, 2006, 11:23pm by unsolved1 » |
IP Logged |
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #22 on: Oct 3rd, 2006, 1:06am » |
Quote Modify
|
I agree unsolved1 with the danger of these drugs.
I suppose we're all in the same boat as to trying to find some much needed PF time without doing ourselves any harm with the drugs we take.
|
|
IP Logged |
|
|
|
prcole18
New Board Veteran
Thank god for Imigran Injections!
Gender:
Posts: 141
|
|
Re: What would you do???
« Reply #23 on: Oct 3rd, 2006, 5:33am » |
Quote Modify
|
Well people, just got back from the Neauro.
He's upping my Verap from 480 to 720mg today.
Had an ECG today, everything ok, gotta have another ECG on Thursday after ive been on 720mg for a couple of day's.
Seeing the Nearo again in 3 weeks time.
If the Verap dosen't work, we could be looking at Lithium, Topomax or another drug beginning with "P" (forgot what the bloody thing was called).
Anyway fingers crossed for the 720mg of Verap.
PF time to everyone.
Paul
|
|
IP Logged |
|
|
|
sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
Gender:
Posts: 10429
|
|
Re: What would you do???
« Reply #24 on: Oct 3rd, 2006, 5:53am » |
Quote Modify
|
Paul,
I hope that verap helps! In my case it did break my chronic cycle in 2005 (and gave blissful 11 months of PF time before the beast made its comeback).
Best wishes & PF time,
Sanna
|
|
IP Logged |
CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss