Author |
Topic: Going down (Read 580 times) |
|
KevinD
New Board Newbie
I love YaBB 1G - SP1!
Posts: 20
|
Yeah I'm gonna feel sorry for myself. I had a good run a Verapimil but my worst fears were realized a month ago. I saw it coming. It doesn't work any anymore and I've been getting clobbered. This is the first time my wife has seen me go through this and I don't know if she'll be able to handle a life time of it. Just bought a house and now I wonder how long I'll be able to hang on to my job. I went on Topamax, followed by Lithium and am combining it with Melatonin. This is pretty much self prescribed. I have not much confidence in my neuro. Been doing lots of research on local docs and can not get in til late March. A chronic clusterhead can not get in to see somone for 2 months??? Even if this latest round of drugs will start to work, I have no choice but to move full speed to try to get this electrode surgery. I refuse to go through drug after drug after drug and have no quality of life. I have already been in contact with the Mayo clinic in Arizona who will be reviewing my records to see if I qualify and they gave me the names of some other places in my area who do the procedure. Sorry to go on an on but I knew you people would be the only ones who could possibly understand
|
|
 IP Logged |
|
|
|
Edski_1
New Board Veteran
All the years combine...they melt into a dream...
Gender: 
Posts: 197
|
 |
Re: Going down
« Reply #1 on: Feb 2nd, 2004, 1:39pm » |
 Quote  Modify
|
What else have you tried Kevin?
I've had good success with Dopeymax, but I'm episodic, and suspect that my case is less severe than a lot of folks, especially since I've needed nothing but topamax since starting it....
But that's only been a not quite a month. I'm hoping after a few months my cycle is done and I don't have to deal with this shit again for another, oh decade...and I've learned so much especially from this site. From the sound of your post you've probably tried a lot of the standard treatments...
But yes, this is the place to come for suggestion, and to vent. Don't be shy. Plenty of ears here. 
|
|
IP Logged |
This is the mystery of the quotient; upon us all a little rain must fall...
|
|
|
henzey
New Board Junior
civics queen who beats the beast most of the time
Gender: 
Posts: 81
|
|
Re: Going down
« Reply #2 on: Feb 2nd, 2004, 2:15pm » |
Quote Modify
|
Hey, I would be a little bit cautious about combining Topamax or Lithium with melatonin as there is very little information out there on interactions between them. I did try taking a small dosage of melatonin (1 mg at night) with a small dosage of Topamax (25 mg per day) two days in a row and got a bear of a shadow headache all the next day both times. Some others also reported this same effect. It may not do the same for you, but there has not been a study of these combinations together, especially over any prolonged period. I do plan to give melatonin a try again, but once I am off the Topamax for good.
|
| « Last Edit: Feb 2nd, 2004, 2:17pm by henzey » |
IP Logged |
civics queen CHead
|
|
|
Samantha_Smith
New Board Veteran
I love YaBB 1G - SP1!
Gender:
Posts: 217
|
|
Re: Going down
« Reply #3 on: Feb 2nd, 2004, 3:08pm » |
Quote Modify
|
Sorry to hear that you are having a bad time. I know how frustrated you are. Before you put electrodes into your face have you ever thought about getting Botox injections or nerve blocks? For some people Botox/nerve blocks works wonders but for others they do nothing at all....the same story applies to all ch meds.
I know how angry you are about trying med after med after med after with no results and more pain............but electrodes (if this is the procedure I believe it to be) are no guarantee. There have been reports about them being implanted and then moving which causes scar tissue. The scar tissue inhibits the electrodes ability to reach the nerve and interrupt the pain signal. I'm not trying to burst your only balloon of hope I'm just worried about this new procedure because we don't know much about its long term effects yet.
But hey...you have to do what you have to do. Every case is different. I really do hope it does work. You deserve relief and a normal life. Congrats on your new home.
There is a "CH Supporter's Message Board" on the web site for people like your wife who may be afraid or new to the whole CH thing and need someone to talk. There's lots of ears here. Hang in there!
|
|
IP Logged |
"Tact is for people not witty enough to use sarcasm."
|
|
|
mediccpc
New Board Newbie
Gender:
Posts: 27
|
|
Re: Going down
« Reply #4 on: Feb 2nd, 2004, 3:11pm » |
Quote Modify
|
Sorry you are going through this brother. I also had a problem with my spouse understanding the nature of the beast. This is the secong bout she has had to endure. Bring her to this web-site so she can read and understand what it is we go through. That seemed to help my wife. It truly is a different understanding. Good luck.
|
|
IP Logged |
|
|
|
KevinD
New Board Newbie
I love YaBB 1G - SP1!
Posts: 20
|
|
Re: Going down
« Reply #5 on: Feb 2nd, 2004, 3:51pm » |
Quote Modify
|
I wondered myself about this topamax,litium, melatonin, combo. My doc didn't say anything but I will get off the topamax once I know the Lithium is fully in my system , maybe in a couple more weeks. I sometimes can not keep my eyes open and I guess 15-20 mg of melatonin a day is too much. I'm just trying anything to avoid spending anymore money on imitrex. No, I haven't gotten the O2 yet. Thats next on the agenda.
If the Lithium works, I will not become complacent. I will not wait til it stops working. I have to do something to avoid this crap.
Couple questions....ANyone had success going back to verapimil a 2nd time after being off it for a while.
How many chronic's here are functioning normally in their live's? I just bought this house and I'm either in pain or too tired to do anything
|
|
IP Logged |
|
|
|
tommyD
New Board Hall of Famer
Anything not impossible is compulsory.
Gender:
Posts: 525
|
|
Re: Going down
« Reply #6 on: Feb 2nd, 2004, 5:57pm » |
Quote Modify
|
Kevin -
You may want to consider an alternative treatment. It works well, the success rate is high, and no waiting for a referral to a neuro. By roiugh count, its successful for over 80 percent of episodics and over 60 percent of chronics.
Check out: www.clusterbusters.com for info on using indole-ring hallucinogens, particularly psilocybin (yes, that's right, shrooms), as a long-term preventative for CH.
Warning - it's a little harder to get this to work for chronics, and you must avoid many CH meds, including lithium and especially Imitrex, while you're using it. O2 is okay, so get some of that first.
It is illegal in most places (but not all!), and its not for everyone (avoid if you are schizophrenic, or otherwise mentally unstable).
You don't need to get very high for this to work, and folks are working on a protocol where you don't necessarily need to get high at all... Read the posts here and ask questions.
-tommyD
|
|
IP Logged |
www.clusterbusters.com
|
|
|
t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
|
|
Re: Going down
« Reply #7 on: Feb 2nd, 2004, 7:09pm » |
Quote Modify
|
How much melatonin are you taking? 0.5mg keeps my CH under control, 3mg CAUSED headaches.
|
|
IP Logged |
No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
|
|
|
Virginia
New Board Hall of Famer
 
Gender:
Posts: 1067
|
|
Re: Going down
« Reply #8 on: Feb 2nd, 2004, 9:34pm » |
Quote Modify
|
on Feb 2nd, 2004, 3:51pm, KevinD wrote:
How many chronic's here are functioning normally in their live's? I just bought this house and I'm either in pain or too tired to do anything |
|
Normal? hmmmm.....I guess that's all relative.
I'm chronic and have been for about 5 years. The first year & a 1/2 were complete hell and I was just very lucky that I had a very understanding boss.
Right now I'm getting hit about 3 times a day and only one of those hits is a 9 or 10. Sometimes I go weeks with only KIP 5's & 6's...those are the good days.
Don't get me wrong....after not having a pain free day for 3 years, I'm at my wits end.
No meds were working for me so I also have gone the way of clusterbusters.com. I am starting to feel better, I think.
I definitely recommend trying it for those who have tried everything else.
Virginia
|
|
IP Logged |
The Clusterhead formerly known as 9erfan.
|
|
|
t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
|
|
Re: Going down
« Reply #9 on: Feb 2nd, 2004, 9:45pm » |
Quote Modify
|
There is absolutely no way you can function "normally" with clusters.
You don't realize how bad your life really is when you have chronic clusters until you get them under control. It is completely relative because when I was getting 2 or 3 a day I was just glad I wasn't having more. Now I see how depressed and exhausted I was and how much they affect the relationships you have, your motivation, and your ability to earn a living. These things can suck your life away, faster or slower depending upon how strong of a person you are to begin with. You feel like you're living from headache to headache.
And these damn things affect every area of your life, even when you're NOT having them. Maybe they affect your life in a GOOD way--maybe you appreciate everyday life, life without that horrible pain. Things that used to bother you don't. Hell, I can even handle a CH once in a while because the Imitrex knocks them out, anything but having them every day and night. Maybe having one intermittently reminds you about how much better things are and that you shouldn't get completely comfortable because this thing is tricky and could come back any time.
I still have difficulty functioning "normally" but now I at least function at MY "norm"!
|
| « Last Edit: Feb 2nd, 2004, 9:56pm by t_h_b » |
IP Logged |
No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
|
|
|
notseinfeld
New Board Hall of Famer
Enough is Enough. Vote Libertarian
Gender:
Posts: 648
|
|
Re: Going down
« Reply #10 on: Feb 2nd, 2004, 9:55pm » |
Quote Modify
|
(Ditto Virginia--shrooms)
Been chronic 4 years going on forever. Lost my business, house, and all my savings and have somehow managed to have a 'normal' life if working for your parents at their store at age 35 is normal. I can say that while there never is a time you're not angry, you can actually work around it. Forget living like a regular citizen. It took 2 years for me of being unemployed and living off the fat of the land to be able to make a difference in my unchosen profession, get a more modest home, and not give up hope. I was single so it was just ruining my life--not those around me. Though it does occur to me that a loving wife (for better or worse?) would have been a godsend.
Trying my second round of mushrooms this month. First time it indeed was difficult to be flapping in the breeze with no meds at all in preparation for the dosing. I also took a lot (2.5-3.0g) each time and the effects were, uh, untenable. I did manage to get complete remission from all h/a and shadows for a 5-7 day vacation between each dose. Now, thanks to the great work at clusterbuster.com, the process has been vastly improved and we're seeing some very convincing results. I hope you'll consider an anti-western approach to your (our) disgusting condition as it's the ONLY one that attempts to deal with the problem and not band aid, ineffectually of course, the pain.
One more thing--you'll notice during the p/f days a sense of mental clarity that'll help you formulate an attack. It's extremely difficult when you're being hit left and right to think clearly with the subconcious anxiety of "when's it gonna hit".
Please keep us posted.
nots
|
|
IP Logged |
-----------Democracy is three wolves and a sheep voting on what's for dinner. ---------------------
|
|
|
toader
New Board Veteran
there were fireworks on mars
Gender:
Posts: 111
|
|
Re: Going down
« Reply #11 on: Feb 4th, 2004, 9:47pm » |
Quote Modify
|
I know how you feel, man. 4 months ago, my life was hunky dory. I have my own computer security business and now I'm looking at having to shut down operations because of these blasted headaches. I'm really trying to make a go of it, but it's a goddamn freak show trying to meet with clients and conduct business while on dopeymax, let me tell you. I've had one or two Jerry McGuire moments, that's for sure.
Hang in there. Here's s my 2 cents....
1) Make the Dr. Appt even if you can't get in until late March. Call the office every morning within an hour after they open and see if they have any cancellations for that day. This worked for me and my wife got me in in 3 days instead of 3 months.
2) What's your dosage on your dope? My first inkling is to say don't give up on the meds but it's hard to make that call. I'm a newbie to this myself. I'm in my second month now and still having a hell of a time fighting this bastard off. I'm also on Verap and Topomax. Tell us your dosage so we can give you some tips.
3) Surgery? That's a trip you can't come back from and it's way too early for that talk.  Follow the shroom threads first, man.
|
|
IP Logged |
|
|
|
KevinD
New Board Newbie
I love YaBB 1G - SP1!
Posts: 20
|
|
Re: Going down
« Reply #12 on: Feb 5th, 2004, 5:23pm » |
Quote Modify
|
Actually I just stopped the Topamax. I was on 100mg for 3 weeks and it just wasn't helping. I stayed on Lithium and went back on Verapimil 2 days ago and have jus thad my 1st 24 hour pain free period in over a week. Just the 4th in about a month. I cut back on the melatonin. I was taking way too much. I know it seems too early to talk about surgery but why should I not do it? Even if the Verap/Lith combo works like a charm, I still want that eletrode surgery. The way I figure, all meds will eventually stop working because we grow resistant to them. I am not going to wait for that to happen again. I did alot of research and found a local doc affiliated with medtronics. Mayo in AZ is evaluating my records to see if I qualify for the surgery. If they say I do, I am going to pressure this local doc to do it. If he won't, I'll get it done in AZ. These frigin things have controlled too much of my life. They put the fear in you. I haven't had a drink in god knows how long. I know its not a sure thing but I feel this surgery is our closest thing to a cure right now.
As far as the other treatment. I won't rule it out but the thought of no meds for 2 weeks is pretty scary. I'd much rather try brain surgery.
|
|
IP Logged |
|
|
|
henzey
New Board Junior
civics queen who beats the beast most of the time
Gender:
Posts: 81
|
|
Re: Going down
« Reply #13 on: Feb 5th, 2004, 6:42pm » |
Quote Modify
|
on Feb 2nd, 2004, 7:09pm, t_h_b wrote:| 0.5mg keeps my CH under control, 3mg CAUSED headaches. |
|
I think that this is a really important point.....based on this site, some need more or less melatonin. Some are up as high as 9 mg per day, which is really up there. I got a shadow headache all the next day after taking 1.5 mg, so maybe I should try starting at .5 and see how it goes from there. Maybe I just don't need as much as some of the others here.
|
|
IP Logged |
civics queen CHead
|
|
|
t_h_b
New Board Hall of Famer
primary chronic since 1999
Gender:
Posts: 527
|
|
Re: Going down
« Reply #14 on: Feb 5th, 2004, 7:39pm » |
Quote Modify
|
on Feb 5th, 2004, 6:42pm, henzey wrote:
I got a shadow headache all the next day after taking 1.5 mg |
|
Henzy, in a way that's GREAT NEWS because it means that melatonin abolutely DOES affect your CH and you can probably jiggle the dose until you hit the right one.
|
| « Last Edit: Feb 5th, 2004, 7:39pm by t_h_b » |
IP Logged |
No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
|
|
|
Tara Ann
CH.com Alumnus
New Board Hall of Famer
It's always darkest before the dawn.
Gender:
Posts: 2459
|
|
Re: Going down
« Reply #15 on: Feb 7th, 2004, 9:32pm » |
Quote Modify
|
Sorry to hear you are having such a bad time with this curse Kevin. I am not chronic (doc said something bout chronic but I have been in cycle for 8 months now and not a year yet) I just got out of a 2 week stay in the hospital and have been relatively pain free for 4 days now. Not sure which of the following did it to break the 6-8 hits I was getting aday but here is what they did, Verapimil and Lithium as prevents, IV DHE treaments and Occipital nerve blocks. I also have Zomig nasal spray and oxygen as abortives, not too much success with the abortives for me, but I think it may have been because my cycle was way outta control for anything too work at the time.
Personally I would give everything and anything a try before resorting to surgery on my brain! But that's just me. Vibes to you and keep us posted on your progress ok?
|
|
IP Logged |
http://www.myspace.com/taraann77
 
|
|
|
hdbngr
New Board Old Timer
Gender:
Posts: 257
|
|
Re: Going down
« Reply #16 on: Feb 9th, 2004, 11:15am » |
Quote Modify
|
Well said, t_h_b!
|
|
IP Logged |
Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss