Author |
Topic: Dopeymax Works (And I Hate It Fot It) (Read 473 times) |
|
toader
New Board Veteran
there were fireworks on mars
Gender: 
Posts: 111
|
 |
Dopeymax Works (And I Hate It Fot It)
« on: Mar 17th, 2004, 7:12pm » |
 Quote  Modify
|
Toader experiment is over. Dopeymax works.
Grrrrrrrrrrrrrrrrrr.
I've been on 200mg/day for 3 months now and got sick of the side effects. Nuff is nuff says I. I can take the pain. I wants my brain back.
Yeah, right.
I started tapering myself off about 2 weeks ago. Bad headaches kicked back in last week. Night attacks started again 2 nights ago. Now I'm pissin my pants and beggin for my stupid pills again. Yeah, got O2 and Trex, but that kills the pain for 2-3 hours top.
Back to the neuro. She is putting me on depakote and topamax now. Can't get my blood levels up fast enough so I'm doin a drip tomorrow and hope to hell that brings some sanity back.
Should have just stayed the course and stayed stupid until my cycle was done.
Too stupid to know the diff.
|
|
 IP Logged |
|
|
|
Edski_1
New Board Veteran
All the years combine...they melt into a dream...
Gender:
Posts: 197
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #1 on: Mar 17th, 2004, 8:18pm » |
Quote Modify
|
Man, sorry to hear that...
Wonder if I'm headed down that road soon. Wonder if I'm just getting down from having a hard time fonding a job or blaming the med. 
The funny thing is after about 2-3 weeks I seeme to loose the "dopey" effects...when I stop taking the potassium supplement I still get an occasional tingle sensation, especially in my feet, but the major side effects have passed.
I guess we're all different. 
|
|
IP Logged |
This is the mystery of the quotient; upon us all a little rain must fall...
|
|
|
Prense
CH.com Alumnus
New Board Hall of Famer
Kerry is an idiot!
Gender:
Posts: 1607
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #2 on: Mar 17th, 2004, 8:34pm » |
Quote Modify
|
on Mar 17th, 2004, 8:18pm, Edski_1 wrote:| The funny thing is after about 2-3 weeks I seeme to loose the "dopey" effects...when I stop taking the potassium supplement I still get an occasional tingle sensation, especially in my feet, but the major side effects have passed. |
|
When I was on the max, I thought the dopey feelings passed too. My wife informs me that they did not pass at all and got worse with the dosage increases. Perhaps I got "used" to the dopiness?
Hell if I know.
Chris
|
|
IP Logged |
Where does the white go in a snowman when the snow melts?
|
|
|
Connie2
New Board Junior
Gender: 
Posts: 74
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #3 on: Mar 17th, 2004, 10:07pm » |
Quote Modify
|
Question... I'm on dopeymax too 125 mg. I too have some of the side effects but am not seeing the results yet. Next week I move up to 200 mg per day. When did you start seeing results? I'm havin a rough go of it the last 3 wks. I'm Chronic CH. Been getting hit with level 8 to 10 4 times a night. I've got o2 and have been sucking it from the hose. It doesn't work for me. When do the PF days come?! I'm getting hit hard. Exhausted.......Connie
|
|
IP Logged |
|
|
|
toader
New Board Veteran
there were fireworks on mars
Gender:
Posts: 111
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #4 on: Mar 17th, 2004, 10:40pm » |
Quote Modify
|
Connie,
Sorry you are getting the night attacks - its a bitch. 
Thing is that Dopey doesn't work alone. Most everyone is on Verapamil and hopefully you are taking this as well. I'm on 720mg/day. Also, if you're not on Melatonin, consider trying that too. It's available OTC. I'm taking 9mg nightly.
I found that once I got on this cocktail, my night attacks gradually decreased in less than a week. Still had daily pain for 3 months, but hey - I'll take it - just as long as my brain can sleep without fear.
Any other abortives? Got Trex?
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #5 on: Mar 18th, 2004, 6:31am » |
Quote Modify
|
Sorry so late to respond. Another night of hell. I tried Verapamil and have very low B\P to begin with so as you can imagine that didn’t work out so well. I’ll give Melatonin a go but will run that by my doc first. Sleeping without fear sounds like a far away dream to me right now. I do have trex but my neuro advised me not to take it due to the list of other meds that I am on but are not working. Here they are. I am thankful for good health insurance but it’s not doing me a lot of good if the meds don’t work! So here it is… Inapsine, Magnesium, Aventyl, Depacon (didn’t help at all – made me vomit and gain weight), Benadryl, Diphenox, Zophran, Senokot, Ambien, Zyprexia, NSS, Hytone, Thorozine, Toradol, DHE. A few of these are Im inj. I am officially in CH hell and I want out! Part of my post is venting and I apologize for that. I really wanted to know when the dopeymax was gonna kick in. I say bring on the dose! I don’t care how stupid it makes me or how many flippin bananas I’ve got to eat! Thanks again, Connie
|
| « Last Edit: Mar 18th, 2004, 6:36am by Connie2 » |
IP Logged |
|
|
|
Edski_1
New Board Veteran
All the years combine...they melt into a dream...
Gender:
Posts: 197
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #6 on: Mar 18th, 2004, 7:47am » |
Quote Modify
|
Connie, everyone is different, so it's hard to say. From the articles I've read, if topamax is going to work results should be seen relatively quick-within a few wekks.
My personal experience was as such: almost immediately I did not need any abortives, and for about two weeks I had daily headaches that were much less severity and duration than my normal CH...these gradually diminished and now I only get the occasional shadow. From the standpoint of pain management this med has been a Godsend.
I'm not sure what it's doing to me pshychologically, though.
As for othr meds, I'm not on anythign else specifically for CH, but I do take Diovan and Norvasc for HBP...not sure if there is any effect from those on my CH situation.
|
|
IP Logged |
This is the mystery of the quotient; upon us all a little rain must fall...
|
|
|
AlienSpaceBabe
Guest
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #7 on: Mar 18th, 2004, 10:40am » |
Quote Modify
 Remove
|
DOPEamax worked for me but made me a complete idiot. By the third week, when I hit 75mg/day, I was dumb - the fourth week, at 100mg/day, I was unable to function at work or drive a manual transmission car without killing the engine.
Benefit - CH relief
Cost - idiot
Cost outweighed the benefit for me
Good luck to you - hope it works for you with few side effects!
|
|
IP Logged |
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
 
Gender:
Posts: 3241
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #8 on: Mar 18th, 2004, 7:27pm » |
Quote Modify
|
Toader -
You know my experience with Dopeymax. I was not fond of sitting at work and halfway through a conversation completely forgetting what the hell I was talking about and who I was talking too.
The HA's seemed to be lessening, but I was to busy throwing up to care much. Hell even had a doc at the er test me to see if I was pregnant because it sounded like bad morning sickness. I could not live like that. But I can understand being at the point where you dont care anymore.
Connie - I wish you luck hun and some people did not have side effects. It seems that you either do or dont with topomax. So if you are not having them now, you might be a lucky one.
Toader - load up on Garfield now and enjoy it while it lasts. 
Tia
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #9 on: Mar 19th, 2004, 5:02pm » |
Quote Modify
|
Hi Tia,
Yes, I am having all of the side effects. I too feel like I need a palm pilot to keep track of where I parked my car at the super market or even which isle the milk is in at the store that I’ve been going to for years. I feel full all of the time. I can’t put a complete sentence together. Slurred speech, blurred vision… the works but I'm hoping that it will beat the crap out of sitting up all night fighting and beating the right side of my face with a telephone like a crazy woman because I just have to feel some other sort of pain if just for a little while. I got my first shot of Botox Injections today. I have heard that they have helped a very small group of people with CH and a larger group of people with Migraines. I am Chronic with both. I don’t care If my life is short due to taking liver killing meds. I’m aiming for some sort of quality… I'm taking quite a few abortives and a few preventatives and we will see what happens. Thank you for responding. Connie
|
| « Last Edit: Mar 19th, 2004, 5:04pm by Connie2 » |
IP Logged |
|
|
|
Tiannia
New Board Hall of Famer
Life does not apologies......
Gender:
Posts: 3241
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #10 on: Mar 19th, 2004, 5:25pm » |
Quote Modify
|
Connie, I hope the best for you. I know that some people get over the side effects. I hope you are one. I understand that pottassium suppliments can help with the shakes.
Have you considered the clusterbusters technique? There are people that swear by it.
I hope that you find some relief.
Good Luck
Tia
|
|
IP Logged |
The curious paradox is that when I accept myself just as I am, then I can change. - Carl Rogers
|
|
|
toader
New Board Veteran
there were fireworks on mars
Gender:
Posts: 111
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #11 on: Mar 19th, 2004, 11:41pm » |
Quote Modify
|
5 hour Depecon drip yesterday. Plus Morphine and bunch of other stuff I can't even pronounce. Yeah, did the technicolor yawn - yeee haw.
Now I'm on Depakote and Topamax - like the twins my mother always warned me about.
One thing I notice about this site ... 90% of the drugs don't work on 90% of the people - either by choice or genetics.
And somehow, in the end, all roads lead to mushrooms.
|
|
IP Logged |
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #12 on: Mar 20th, 2004, 5:14am » |
Quote Modify
|
Please let me know how the Depekote Dopeymax combo works out for you. For me, while On Depakote, Verapamile and Prendisone it didn't do a thing but make me sick as a dog and 20 lbs heavier. The latter of which was probably the Prendisone but that's nuttin but an after thought. I really don't care about the weight gain at this point. I just want out of this Cluster grip. Let me know. Connie
|
|
IP Logged |
|
|
|
MarkV
New Board Junior
have a beer
Gender:
Posts: 71
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #13 on: Mar 20th, 2004, 9:11pm » |
Quote Modify
|
I was on Topamax 100mg, Depakote 500mg, and Verapamil 360mg at the same time. My headaches were suppressed.
After my kidney stone, I tapered off of Topamax, having been on it for a year. Right now I can't believe how much sharper I am at work. It took a few weeks, but my head is so much clearer now and I can remember things, think clearer, etc. I can't believe how much better I feel mentally.
The headaches did come back though, so I recently went on 900mg lithium in combo with the verapamil and am tapering off the depakote too. This mix has been working like a charm so far (fingers crossed).
Mark
|
|
IP Logged |
don't have a cow
|
|
|
Connie2
New Board Junior
Gender:
Posts: 74
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #14 on: Mar 22nd, 2004, 8:16pm » |
Quote Modify
|
Update: I did get my first Botox Inj on Friday 19th. So far, I'm still getting hit with CH 10 3 a night lasting 20 to 35 min and the after burn from those pluse the Daily Migraine LVL 8 so, no help yet. The doc said give it at least a week to kick in if it's gonna. I'm supposed to call him on Friday and give him the report. I'll keep posting as promised.
Connie
|
|
IP Logged |
|
|
|
Lobster
CH.com Alumnus
New Board Hall of Famer
Gender:
Posts: 2016
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #15 on: Mar 22nd, 2004, 8:41pm » |
Quote Modify
|
I am only on 75mg Dopey. Been there two weeks. AbsoFuckingLutely hate the shit. Informed my doctor today that I want off of it. He kinda talked me into staying on it until we see what my other med changes do. So one or two more weeks of the side effects.
Stepped the Verapamil up to 480 a day and he started me on Baclofen (20mg a day), which I have been wanting to try for a few weeks.
Rock
|
|
IP Logged |
Rock beats Scissors.
|
|
|
Edski_1
New Board Veteran
All the years combine...they melt into a dream...
Gender:
Posts: 197
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #16 on: Mar 22nd, 2004, 11:24pm » |
Quote Modify
|
Rock...how's it treating you for the pain, though? Ultimately that's the major consideration, although the SE's have to be given due consideration. They can get to be too much. But cluster pain sucks and el Dopa CAN do a number on the Beast...
I really want off the shit too, but I have to give it credit for keeping the pain at bay. And I can feel the Beast lurking...it's there. If I miss a dose I can feel the shadows creeping in.
Do give it a chance. You might not notice the SE's as bad in a couple of weeks...
|
|
IP Logged |
This is the mystery of the quotient; upon us all a little rain must fall...
|
|
|
toader
New Board Veteran
there were fireworks on mars
Gender:
Posts: 111
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #17 on: Mar 22nd, 2004, 11:51pm » |
Quote Modify
|
Look, no disrespect - the side effects of all this stuff is huge.
I just added Depakote to my mix last week. I feel like a damn chemo patient. Been on the Depecon drip and pukin my guts out since then. My headaches are significantly better overall, but what a price to pay. . .
Does Topamax make you a bumbling dumbass? Pbbbbbbt. Does that improve over time? YabbaDabbaDoo! Is it worth the side effects? Probably yes, but only you can answer that for yourself.
Think there are easy answers out there? Think again. You're screwed. Pick your poison.
|
|
IP Logged |
|
|
|
hdbngr
New Board Old Timer
Gender:
Posts: 257
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #18 on: Mar 23rd, 2004, 5:04pm » |
Quote Modify
|
Mark:
Did the Topomax cause a kidney stone? Is that one of the side effects?
V
|
|
IP Logged |
Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
|
|
|
MarkV
New Board Junior
have a beer
Gender:
Posts: 71
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #19 on: Mar 23rd, 2004, 6:25pm » |
Quote Modify
|
hdbngr,
Yes the topamax caused it. I started Topamax in Feb '03. Passed a small stone in November '03 which knocked me to my knees in the shower before I went to the ER. Got a cat scan and xray at that time and it showed another one in my kidney.
That one exited the kidney in February '04 and got stuck in the ureter. It was the most sickening pain I ever got.
I had to have it endoscopically removedl 3 weeks later (I think I posted incorrectly in the past and mentioned the surgery as lithotripsy). Anyway, the scope was not fun.
|
|
IP Logged |
don't have a cow
|
|
|
hdbngr
New Board Old Timer
Gender:
Posts: 257
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #20 on: Mar 24th, 2004, 9:00am » |
Quote Modify
|
Holy Cow. Well, now I know....
I just went to the Doc with really awful abdominal pain. I thought maybe it was a cyst of the female persuasion -ruptured or something. It was the only thing I could think of that could hurt that bad.
They ordered an ultrasound of the female region and came up with exactly nothing (they didn't scan the kidneys or the bladder). Went home feeling sheepish until it got worse instead of better. Two more weeks of this and The mother of all stones showed up. I saved it and took it back to the Doctor with me. They asked if my diet had changed, and don't know what caused it. Topomax was not mentioned as a possible factor. Have a referral to a urologist in June. Sure hoping they don't decide to scope anything on me, although it is probably a lot less painful for a woman than a man.... yuck.
Have you posted anything about the Topomax/kidney stone connection on the main board?
|
|
IP Logged |
Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.
|
|
|
MarkV
New Board Junior
have a beer
Gender:
Posts: 71
|
|
Re: Dopeymax Works (And I Hate It Fot It)
« Reply #21 on: Mar 24th, 2004, 7:05pm » |
Quote Modify
|
hdbngr,
I don't think I've mentioned it on the main board. I mainly stick to reading the Medications board. However, the general precautionary warnings of Topamax show that stones are a potential. However, a 1.5% potential chance as written? Don't know if I believe that. I think its higher. Here it is from http://www.orthomcneil.com/products/pi/pdfs/tpamax.pdf:
Kidney Stones
A total of 32/2,086 (1.5%) of adults exposed to topiramate during its development reported the occurrence of kidney stones, an incidence about 2-4 times greater than expected in a similar, untreated population. As in the general population, the incidence of stone formation among topiramate treated patients was higher in men. Kidney stones have also been reported in pediatric patients. An explanation for the association of TOPAMAX® and kidney stones may lie in the fact that topiramate is a carbonic anhydrase inhibitor. Carbonic anhydrase inhibitors, e.g., acetazolamide or dichlorphenamide, promote stone formation by reducing urinary citrate excretion and by increasing urinary pH. The concomitant use of TOPAMAX® with other carbonic anhydrase inhibitors or potentially in patients on a ketogenic diet may create a physiological environment that increases the risk of kidney stone formation, and should therefore be avoided. Increased fluid intake increases the urinary output, lowering the concentration of substances involved in stone formation.
Mark
|
|
IP Logged |
don't have a cow
|
|
|
|
|
|
Home
Help
Search
Members
Member Map
Login
Register
Reply
Notify of replies
Send Topic
Print
test rss