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Paris1958
New Member


Date Joined Jul 2008
Total Posts : 9
   Posted 7/16/2008 1:59 PM (GMT -6)   
Hi, just wanted to say I am one of the lucky ones.  I have suffered with migraines for several years.  This drug has been a God send to me. I take 25mg bd with no side effects, I have had one migraine since commencing this drug touch wood. :-)

badgenetics1
Regular Member


Date Joined Nov 2007
Total Posts : 146
   Posted 7/16/2008 7:26 PM (GMT -6)   
No weight gain or lethargy?

Paris1958
New Member


Date Joined Jul 2008
Total Posts : 9
   Posted 7/17/2008 12:13 AM (GMT -6)   
When I started the drug (I have tried a few over 20 years), I thought the migraines were preferable and I hate them... I had the foul taste in my mouth, lack of feeling (empathy) and feeling of emptiness. I was going to give up. Sadly, the prescribing doctor gave me little information, but the pharmacist was a marvel and told me it was a transition period I was going through. I woke up one day and the symptoms weren't there. I don't have the lethargy, I feel more alive. I have no hunger though and have to force myself to eat, not sure that is a bad thing though. I am aware that my dose 50mg a day is lower than most. I was very concerned about my eyes after researching the drug, but I've been getting them checked at the opticians and he says they are very healthy. What has your experiance been? I hope good. By the way I haven't had the experiance of the 'loss of words' and clumsiness either which has been reported. I did experiance this when I was prescribed amitripiline for the migraines and a dry mouth and lethargy for the duration I was on them. I had weight gain without eating on Epilim.

Horsewhisper
Regular Member


Date Joined Jul 2008
Total Posts : 21
   Posted 7/23/2008 7:27 AM (GMT -6)   
I've been on Topamax for 8 months now. I was diagnosed with a Meningioma (non-cancerous brain tumor) that was of very substantial size about 3-1/2 years ago. It announced it's presence with a prolonged general seizure while I was at work (at a hospital). I underwent a craniotomy and excision which left me hemiplegic, and also with substantial migraines of alarming frequency (almost daily, initially). At first I was given nothing but narcotic management, neuroleptics and NSAID's along with essentially inefective Maxalt. Over time, this became somewhat more effective, although this probably had more to do with the healing process and me becoming used to them than actual effective managment. Headaches to about 4 per week over time. I was switched to Imitrex nasal about 1.5 years ago with better results, and finally started on Topamax 8 months ago with a dramatic drop in frequency, Headaches to 2 to RARELY 3 per week. I felt this was AWESOME improvement!! When they weren't fully eliminated, I was labeled a drug seeker, of course. (I had moved and had a new neurologist- a good thing in that it had brought me to the Topamax in the first place, bad in that he was a jerk who from the onset thought that I was running from my old neurologist to get more drugs- nothing could be further from the truth but he decided that he was going to be heavy handed with me) So I ended up having to go back to my old neurosurgical team back in the town that I had moved FROM in order to get any care as this new neurologist has effectively poisoned the well in the entire town. Long post, but point being that I have seen substantial relief with Topamax. Side effects for me: A little bit of peripheral tingling occasionally, some memory deficit, and some fatigue on occasion. Nothing compared to narcotic management and nothing compared to the headaches. I've had to fight to hold my weight as I lost 35 pounds that I could afford to, then 10 I couldn't. Eat every meal, don't skip any!! Hugs to all.

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 7/24/2008 2:19 AM (GMT -6)   

Hey folks,

Count your blessings!!!  I thank heaven everyday that I got off of Topamax, as it was nothing short of poison to me.  I was on too much of it and for too long, and I suffer every day with the residual brain damage.  I'm so glad that you all have had a positive result, guess I got to "take one for the team".  Nothing I can do about it now, so I'll just be happy for the rest of you.  Just promise me one thing...if you ever start having negative memory problems, you will immediately start to titrate off the medication.  Once this drug does a number on your brain function, it doesn't go away, and I can tell you, not being able to remember things from one minute to the next is a lousy situation to live with...OK?!!

Leigh Ann nono


Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ 
  • Divorced, 43, no children
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(four molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab, Trazadone, Buspar, Nexium, Tramadol, Phenergan, PROHIBITED FROM ALL NSAIDS
  • Current Problem: Internal Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


ericajones80
Regular Member


Date Joined Jul 2008
Total Posts : 25
   Posted 7/24/2008 9:47 AM (GMT -6)   
I didnt have too much luck with Topomax
Erica


Parrotrosie
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/24/2008 7:55 PM (GMT -6)   
Well, I have been on Topamax for several weeks now and it seems as tho this is the med for me. 
Not only have my migraines decreased in frequency to nearly none, but my mood is excellent!  I had been on Welbutrin, but that wasn't working so well, so they took me off that to put me on amytriptaline (did not get rid of my headaches and my mood got worse, I felt like I was hit by a freight train, and I gained 25 pounds in three months that I am still trying to shed).  So, I weaned off that and built up to 50mg in the AM and 50mg PM of the topamax and I think I love it!
 
I have mild tingling of the hands, feet, and face occassionally and not usually all at once.  I pop up early every morning awake and refreshed, I sleep well at night (has been a problem for me for years), and I actually joined a gym yesterday - which as you all know, the thought of working out with a migraine is just, well....not very pleasant.  My appetite is small, so hopefully this extra weight will go away!  Soda tastes yucky.  I have not experienced the mental deficiencies I have read about.  All in all, I feel well, first time in about ten years I can say that!  I hope it sticks!  I thank my neurologist headache specialist and you folks here!  (who knew there were specialist in that field!!!!)  I hope these comments are helpful to others. yeah

CRANKY 1
Veteran Member


Date Joined Aug 2005
Total Posts : 616
   Posted 7/24/2008 8:39 PM (GMT -6)   

Hey Parrotrosie,

Your results from using Topamax are what is supposed to happen.  You are a very lucky person, and I am so happy for you.  I only wish we all could have had your great results.  My experience has been so bad, I have to remind myself that people like you are truly helped by this medication.  Otherwise, I'd be on a conquest to have Topamax banned from the planet.  Thanks for sharing your story.

Leigh Ann



Basic info:
  • On Disability for: Chronic Migraines, serious Back and Knee problems (will need surgery eventually), moderate Depression, Anxiety/Panic disorder, TMJ, stomach problems 
  • Divorced, 43, spawn-free 
  • Surgeries: Gastric Bypass, Gallbladder Removed (followed by a week in the hospital for a Blood Clot), Impacted Kidney Stone Removed, Broken Ankle, Major Dental work(ten molars pulled, multiple cavities, root canals) 
  • Current Meds: Prozac, Klonopin, Atenelol, Stadol Nasal Spray, Lortab/Percocet, Trazadone, Buspar, Protonix, Tramadol, Visteryl, Carafate Suspension, Co-Q10, B2(Riboflavin), Remifemin(Black Cohosh)
  • PROHIBITED FROM ALL NSAIDS
  • Current Problem: Mysterious Internal GI Bleeding, possible ulcer in location of Gastric Bypass
 
"The weather is here, I wish you were beautiful."
                                             - Jimmy Buffett
 
 


bethann123
New Member


Date Joined Jul 2008
Total Posts : 5
   Posted 7/25/2008 6:12 PM (GMT -6)   
has anyone recovered from damaged broken hair after taking topamax? I am trying to ean off and afraid to loose hair or have more breakage. Will it grow back?

Parrotrosie
New Member


Date Joined Jul 2008
Total Posts : 15
   Posted 7/25/2008 7:19 PM (GMT -6)   

Thanks for your comments Cranky....I have to admit I was very leary after reading your comments and some others.  But the amytriptaline was just horrible for me.  So I figured...what the heck.    I already had some short term memory issues before starting the topamax...and figured I would not notice any difference.  I actually feel MORE organized if you can believe it.  I know this drug is used for bi-polar and manic and depression disorders and wonder if I was not suffering from some sub-clinical issue in that depression spectrum.  Really because I feel so much better in a lot of ways.   I had not had a full night's sleep since having my daughter ten years ago, and now sleep very well without feeling doped out like the last drug.  I have gone from 3-4 migraines a week to maybe one a week, if that even.  I am so sorry about your experience with the topamax, but it has honestly been a wonderful drug for me.

I believe, we all  must listen to our body and hear what is says .  Drugs are not a one-size fits all, and we all need to  talk to our doctors and each person needs to find the right fit.  I know you are searching yourself yet, for several answers and I pray you are able to find at least some relief  :-)  


Post Edited (Parrotrosie) : 7/27/2008 6:16:15 AM (GMT-6)

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