Topomax
-
angelicamb
Re: Topomax and hairloss
POINT TAKEN AND THE SUGGESTION IS CORRECT. All of us are in need of an appropriate forum to discuss Topomax. We have outstayed our welcome here. I have taken the liberty of creating a Topomax forum in the Yahoo coomunity: http://groups.yahoo.com/group/TopomaxUsers. I am out of time now, but will work on copying some of this stuff over later so that we can encourage people to start using it!!!!!!!!!!!!!!!!!
Re: Topomax and hairloss
Dear 'guest'
As one of the 'good people' of UBPN, let me respond.
This message board IS titled 'Traumatic Brachial Plexus Injuries'. The subject of this particular thread is 'Topomax' and that title was placed there by the first poster posting this thread. So I'm not sure where the confusion lies.
We have allowed this thread to continue even though it is not on the topic of brachial plexus injuries because topomax is a medication that some in our community have tried or might consider trying and it is good to hear all the anecdotal evidence of experiences with this particular drug, its effectiveness and its side effect.
I thank everyone who has responded on this because we all benefit from our joint experience.
Nancy Birk
UBPN President
As one of the 'good people' of UBPN, let me respond.
This message board IS titled 'Traumatic Brachial Plexus Injuries'. The subject of this particular thread is 'Topomax' and that title was placed there by the first poster posting this thread. So I'm not sure where the confusion lies.
We have allowed this thread to continue even though it is not on the topic of brachial plexus injuries because topomax is a medication that some in our community have tried or might consider trying and it is good to hear all the anecdotal evidence of experiences with this particular drug, its effectiveness and its side effect.
I thank everyone who has responded on this because we all benefit from our joint experience.
Nancy Birk
UBPN President
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Topomax and hairloss
There is no confusion to those on the message board. It was entitled "Topomax" and that is what they were discussing.
Re: Topomax and hairloss
Nancy I might point out that pepole on the drug have the inablity to add thair name to the posting they have just typed out. I dount know if the drug do's this or some other brain disorder. Or is it that they are two handed and do'nt have but a name on thair work/posting.............Paul
Re: Topomax and hairloss
Good by no name. And take your ADD WITH YOU WHAT EVER that IS, WE DON'T WANT IT. I have no use for pepole that don't have a name. I mean what can one say when refering to the person [ a hores with no name] Re: Topomax angelicamb Posted: Apr 21, 2003 1:43 PM wow what was that all about ??????????? I missed that one. Oh Oh I was busy with my post Brachial Plexus oparation by two very great doctors.
So go to your WWW.ADD/BRAIN-DEAD.COM http://groups.yahoo.com/group/TopomaxUsers.
AND ENJOY YOURSELF...............GOOD BYYYYYYYYYYYYYYY
sighed by
585 Paul H. 585
So go to your WWW.ADD/BRAIN-DEAD.COM http://groups.yahoo.com/group/TopomaxUsers.
AND ENJOY YOURSELF...............GOOD BYYYYYYYYYYYYYYY
sighed by
585 Paul H. 585
-
Karen Hillyer
- Posts: 562
- Joined: Fri Sep 06, 2002 1:36 pm
Re: Topomax and hairloss
Dear Guest
I would like to respectfully point out that this message board is called TRAUMATIC BRACHIAL PLEXUS INJURIES BOARD
and that ubpn stands for UNITED BRACHIAL PLEXUS NETWORK
I think that your sarcasm is unwarranted.
The thread was originally started by a person affected by tbpi who was enquiring about the use of Topomax for pain relief of this excrutiatingly painful injury.
I truly feel that your response is inappropriate.
I would like to respectfully point out that this message board is called TRAUMATIC BRACHIAL PLEXUS INJURIES BOARD
and that ubpn stands for UNITED BRACHIAL PLEXUS NETWORK
I think that your sarcasm is unwarranted.
The thread was originally started by a person affected by tbpi who was enquiring about the use of Topomax for pain relief of this excrutiatingly painful injury.
I truly feel that your response is inappropriate.
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Topomax and hairloss
I think what's happening is that if you type 'topomax' into a search engine, this thread comes up high on the list of results and people click on it and come straight onto this thread without realising it's just one thread about Topomax on a message board about Traumatic Brachial Plexus injuries. However, 'guests' snotty responses aren't warranted, especially after Nancy Birk clarified the position.
If you type in 'Topamax' instead of 'Topomax' you get a lot more results about the side effects, one site says you should report side effects to the FDA or the manufacturers. I just say this for your information, I personally have no problem whatever with anyone discussing this drug here whether or not they have a bpi, because it is one of the drugs presribed to people with bpi, and the information shared here is relevant to us, as Nancy says.
Because of the traffic this site receives this thread is likely to remain high on a results listing even if you start a new support group elsewhere, so it will probably continue to generate replies. As I said, I have no problem with that and maybe those that do could just avoid this thread, it's easy enough not to click on it.
If you type in 'Topamax' instead of 'Topomax' you get a lot more results about the side effects, one site says you should report side effects to the FDA or the manufacturers. I just say this for your information, I personally have no problem whatever with anyone discussing this drug here whether or not they have a bpi, because it is one of the drugs presribed to people with bpi, and the information shared here is relevant to us, as Nancy says.
Because of the traffic this site receives this thread is likely to remain high on a results listing even if you start a new support group elsewhere, so it will probably continue to generate replies. As I said, I have no problem with that and maybe those that do could just avoid this thread, it's easy enough not to click on it.
-
jennyb
- Posts: 1183
- Joined: Fri Nov 02, 2001 5:24 pm
- Injury Description, Date, extent, surgical intervention etc: January 1980 Yamaha RD200 vs 16 wheeler truck, result, 1 totally paralysed right arm. I was 21, now 54. I had no surgery, I don't regret this. Decided to totally ignore limitations (easily done aged 21) adapted very quickly to one handed life, got married, had 3 kids, worked- the effect of the injury on my life (once the pain stopped being constant) was minimal and now, aged 54, I very rarely even think of it, unless I bash it or it gets cold, then I wish I'd had it amputated :) Except for a steering knob on my car, I have no adaptations to help with life, mainly because I honestly don't think of myself as disabled and the only thing I can't do is peel potatoes, which is definitely a good thing.
Re: Topomax and hairloss
Just to make it a bit clearer, here's the home page for UBPN's message boards http://ubpn.org/messageboard/index.jsp If you click on the 'Traumatic Brachial Plexus Injuries' link, you come to the list of threads, of which this is one titled 'Topomax'. This thread is NOT a message board, it's a thread on a message board.
Sounds like everyone here has problems of one kind or another, please don't fight any more :0)
Sounds like everyone here has problems of one kind or another, please don't fight any more :0)
-
admin
- Site Admin
- Posts: 19873
- Joined: Mon Nov 16, 2009 9:59 pm
Re: Topomax
I came across this message board as I was looking for information on Topamax. I have been on it for 7 months because of migraines. I have also experienced these side effects. I only wish I knew about them sooner. I thought I was loosing my mind. My husband had no idea what was wrong with me. I would just start screaming at him or the kids one minute then I would be crying like a baby. I also am loosing weight. When does the weight thing taper off. I am 5'4" and have gone from 125 to 99lbs. The doctor doesn't think it's the meds. I also have had diarrhea for about 6 weeks now. Has anyone else have this side effect? Is there a blood test to check for levels of if Topamax could be the problem? The doc wants to send me to a gastro.. I think it's the pills.
Re: Topomax
Mary, Mary, Mary, !!!!!!!!!!!!!!!!!Woooooooooooooo, Your go Jenny, I pass on this one. I have BPI trapee to do.Do you think its the pills Jenny? Paul