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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 56. This is the beginning of the thread.
Posted by Sooshi on March 7, 2004, at 21:53:12
I'm still hoping to find you Zonegran users out there! I need your advice!
I would appreciate any info that could be provided.
I'm considering switching from Topamax to Zonegran, and would like to know the difference in side effects and effectiveness. Topamax has never really kicked in sufficiently as a mood stabilizer for me, and the side effects are less than desireable.
Of the following side effects I experience(ed) with Topamax, do you (or did you) experience any with Zonegran?
~Extreme sleepiness when starting medication
~Cognitive dificulties, "stupids", etc.
~Blurry vision, eye pain, eye dryness
~Tingling hands, feet, face, tongue
~Difficulty typing, writing, walking
~Acne
~Increased depression, irritation, anger
~Sodas taste horrible
~Weight loss
What side effects are you experiencing w/Zon?How do you feel that Zonegran is working for you as a mood stabilizer?
Thanks in advance!
Sooshi
Posted by Joy on March 8, 2004, at 13:11:12
In reply to Nobody takes ZONEGRAN???, posted by Sooshi on March 7, 2004, at 21:53:12
Hi Sooshi,
If you go to psycho babble search in '01, you will find postings on Zonegran. It seems it was tried by a couple of people and another drug was preferred. You can go to the search and find messages. Regards,
Joy
Posted by Sooshi on March 8, 2004, at 22:10:37
In reply to Re: Nobody takes ZONEGRAN??? » Sooshi, posted by Joy on March 8, 2004, at 13:11:12
Thanks, Joy...I've already done the search thing and have read all of the past messages. I was hoping to get some more recent help from people taking the drug right now. But I guess nobody is!
Also, why doesn't the Psycho Babble search go up to AT LEAST 2003??? I like to have very current information, not years old info... (I guess I should ask this on Administration.....)
Posted by SLS on March 8, 2004, at 23:12:27
In reply to Nobody takes ZONEGRAN???, posted by Sooshi on March 7, 2004, at 21:53:12
Hi Sooshi.
I tried Zonegran for a few weeks several months ago. I am trying to treat bipolar depression. I discontinued it into the second week because I developed intense itching that my doctor thought was an allergic reaction, so I can't comment on its therapeutic potential. I have also tried Topamax. I found Zonegran to be much cleaner than Topamax with respect to cognitive side effects. Also, it did not exacerbate my depression the way Topamax did. I did find that Zonegran suppressed my appetite somewhat. Wish I could have been of more help.
- Scott
Posted by Sooshi on March 9, 2004, at 22:18:14
In reply to Re: Nobody takes ZONEGRAN???, posted by SLS on March 8, 2004, at 23:12:27
Your comments are of great help, Scott! Thanks! It's good to hear that Zonegran feels "cleaner", because that's exactly what Topa feels unlike! I've never been on a drug that had so many "dirty" side effects...
Thanks again for your input.
Posted by zero on March 10, 2004, at 22:48:01
In reply to Nobody takes ZONEGRAN???, posted by Sooshi on March 7, 2004, at 21:53:12
I've taken both Topamax, and Zonegran for migraine prevention.
Topamax had lots of side effects. The usual extreme cognitive effects at the beginning (which passed after about a month), tingling sensations in hands & feet, inability to taste some things, appetite suppression, and eventually, serious dental problems (which made me discontinue it). It worked fabulously as a migraine preventive.
Tried Zonegran to replace Topamax. No bad cognitive effects, but it made me feel very irritable so I didn't stay on it long.
Hope this helps.
Posted by Sooshi on March 11, 2004, at 9:59:05
In reply to Re: Nobody takes ZONEGRAN??? » Sooshi, posted by zero on March 10, 2004, at 22:48:01
Thanks so much zero! I've experienced every side effect from Topa except dental problems, that I know of!! Good to hear that there wasn't any cognitive effects from the Zon.
Good luck to you too.
Posted by Dr. Bob on March 12, 2004, at 8:09:53
In reply to Re: Nobody takes ZONEGRAN??? » Joy, posted by Sooshi on March 8, 2004, at 22:10:37
> (I guess I should ask this on Administration.....)
I've respond there. Here's a link:
http://www.dr-bob.org/babble/admin/20040307/msgs/323520.html
Bob
Posted by Mack on March 16, 2004, at 21:08:41
In reply to Nobody takes ZONEGRAN???, posted by Sooshi on March 7, 2004, at 21:53:12
I was taking Topamax for migraines (14 a month) and nerve damage from my back. In short, it began to make me look stupid. It made me forget friend's names at work, forget thoughts and sentences midstream, and one of my my friends thought I was taking drugs. My hands/feet tingled, and I began to drop things. I thought I was going crazy. I am now on Zonegran, and I don't notice any side effects at 100mg a day, even at 200mg a day.
Posted by Cinnaman on April 2, 2004, at 14:21:14
In reply to Nobody takes ZONEGRAN???, posted by Sooshi on March 7, 2004, at 21:53:12
Hey Sooshi, My name is Alexis and I'm 22 years old and have been recently been put on Zonegran.
It's horrible and my doctors and family don't seem to understand it's like they want to keep me "DOPED" up. That crap isn't working it's only making it worse!
Symtoms: Sleepiness-lack of wanting to do anything cause I'm always tired
Cognitive difficuilities! I thought I was the only one, man have I got really retarded. I say and do some of the most off the wall stuff. The case of the stupids 4 real
Vision-Horrible can't see for @%#$
Incresed depression, anger, hostility, irritation, uncontrollable crying, RAGE.
Weight loss- I'm not complaining bount that though.
Soda-I really don't drink so can't comment.
Tying and dizziness is unbearableSo I truly understand what your going through and hope that we can continue to share our misery together........BYE
Posted by Sooshi on April 2, 2004, at 18:00:24
In reply to Re: Nobody takes ZONEGRAN??? » Sooshi, posted by Cinnaman on April 2, 2004, at 14:21:14
Hi Cinnaman,
I'm sorry to hear that you're doing so bad on Zonegran! You're symptoms sound just like what I was experiencing on Topamax. Fortunately for me, I have NONE of those side effects so far with Zonegran, and am doing quite well with it. Since quitting Topamax and going on Zonegran, I can:See again!
Drink/taste soda! (although I don't...trying to cut back)
Find the simplest of words again!
Toes and fingers don't tingle!
Acne - GONE!!!
Irritation/Anxiety is gone!BUT, one of the side effects I am still getting is weight loss, which I need quite badly and don't mind at all!
I hope you find something better that works for you - have you tried other mood stabilizers? I'm assuming you have, since Zonegran is usually way on down the line in the order of MS's.
Let me know how you're doing,
Sooshi
Posted by redscarlet on April 29, 2004, at 15:49:49
In reply to Re: Since quitting Topamax..., posted by Sooshi on April 2, 2004, at 18:00:24
Hi Sooshi ~ I'm on Zonegran too after stopping the Topamax which I was on for around two years and had VERY, VERY bad hair loss the whole time. I'm not having that problem with the Zonegran...YEA! Can I ask you how many mg's are you taking? I'm on 200 mg's but I feel I might need more but don't want to start to loose my hair again.
Thanks for posting about Zonegran, it's nice to know I'm not the only one on it!
(Oh, I take it for Bipolar disorder)
Posted by Sooshi on April 29, 2004, at 17:29:01
In reply to Re: Since quitting Topamax.. » Sooshi, posted by redscarlet on April 29, 2004, at 15:49:49
Oh man, is it nice to finally hear from a Zonegran user!! I've had little or no interaction with anyone on this board and other boards, since I can't find anyone taking it! And I can't believe it, because it works SO WELL! Unbelievably well, especially compared to Topamax and all it's nasty side effects. I have virtually no se's with Zonegran, and I feel more stable than I have in years, and that's saying A LOT. I have not said that in a LONG, LONG TIME. That's how well this drug is working for me. omg, I feel like boo-hooing....wow....
ANYWAY...I'm currently taking 175mg's working my way up to 200 within the next 3 days, and plan on stopping there to see how it goes. I also take 300mg Effexor XR, all for BPII. I had terrible hair loss with Depakote, but none so far with any other mood stabilizer, thank goodness. I truly hope you don't get any hair loss with Z! I think 200mg's is about the average dose (I looked on remedyfind.com) but there were others on much higher dosages, so ask your pdoc if you think you need to go up some.
Good luck and Please keep in touch!
Posted by drgn_mommy on May 21, 2004, at 2:43:26
In reply to Re: ZONEGRAN WORKS WONDERS » redscarlet, posted by Sooshi on April 29, 2004, at 17:29:01
I was on topamax last year. It was hard for my doctor to get me to a good dose without more side effects than it was worth. I was still rapid cycling (I have bipolar disorder) And it interfered with my birth control and now i have a four month old. So now my doctor and I are trying again since i had to go unmedicated during pregnancy. I am on zonegran now. I have to admit I noticed soda tastes weird. But its really a good thing so now i want less of it. I am less hungry. I got stomach aches the first few days but it has eased up. I have not been on it long enough to gauge the weight loss yet. I can feel that I am balancing out again. My mania is calming down a lot. The grocery store gets me for over 200 dollars usually. I was so proud to leave under 60 today. I balance my zonegran with zoloft. I hope this is helpful in some way! And I hope to hear more from you. I too am curious about others experience since i am not taking it as FDA approved. I will be moving up to 200 mg at the end of the week
Posted by sooshi on May 22, 2004, at 8:29:11
In reply to Re: ZONEGRAN WORKS WONDERS, posted by drgn_mommy on May 21, 2004, at 2:43:26
Hello drgn_mommy! Yes, it's so good to hear from other Zonegran users, since there sure isn't many of us out there! I hope it works out for you, too. I'm at 200mg and going strong. It has evened out my moods better than anything, ever. I have never felt better, and that is REALLY saying something, since I've been battling bipolar since, well, forever, but have been taking meds for over 20 years.
Topamax was horrible (for me). Zonegran has none of those side effects, except for the weight loss part! I still tend to want much smaller, healthier meals, and end my meals much sooner. Soda doesn't taste funny to me any more...but I almost wish it did, so I would go back to not drinking it!!
Good luck on getting to 200mg! Keep me posted on how you're doing!
Posted by PCH on June 24, 2004, at 16:44:37
In reply to Re: ZONEGRAN WORKS WONDERS, posted by sooshi on May 22, 2004, at 8:29:11
Hi Sooshi, Your posts are very encouraging. Like most posters here I've tried just about everything. Currenting I am on 20mg of Marplan which is just keeping my head above water.
My Pdoc has prescribed Zonegran (50mg twice a day for first two weeks increasing to 100mg twice a day) to help with the weight gain and hopefully add to the antidepressant effect of Marplan.
I am extremely sensitive to all meds and normally start out very slowing working my way up to a therapeutic dose.
How long did it take you to build up to 200mg? What was your starting dose and how long did you stay there before making an increase?
Any other thoughts or comments would be appreciated. Hope you keep "going strong" with this one. Thanks, Phil
Posted by sooshi on June 24, 2004, at 22:47:57
In reply to Re: ZONEGRAN WORKS WONDERS » sooshi, posted by PCH on June 24, 2004, at 16:44:37
Hi Phil,
I'm glad you've found my posts encouraging! I hope the Zonegran works out for you. It is a very "clean" drug, with very few side effects, so hopefully you won't have to deal with any sensitivity problems.
I started out with 50mg once a day for a few days, then went to 100mg, and so on up to 200mg, which is where I've been at since about mid March. I'd say it took only about 2 weeks to get to 200mg, but I'm not all that sensitive to meds anymore.
I'm still feeling great on this drug, and only have good things to say about it! I only hope it works out as well for you. Keep me posted, and let me know if you have any more questions,
Sooshi
Posted by PCH on June 26, 2004, at 20:32:02
In reply to Re: ZONEGRAN WORKS WONDERS » PCH, posted by sooshi on June 24, 2004, at 22:47:57
Thanks for your reply sooshi.
I have had atypical unipolar depression for over 20 years. In additon to helping with the weight gain I am hoping the Zonegran will add to the antidepressant effect of the Marplan which at the moment seems to be pooping out.
Have you noticed any antidepressant effects from zone and if so how long did it take before they became apparent.
I really do appreciate your comments as there really seems to be very little information available about this med. Best, Phil
Posted by sooshi on June 27, 2004, at 9:35:51
In reply to Re: ZONEGRAN WORKS WONDERS, posted by PCH on June 26, 2004, at 20:32:02
Hi Phil,
As for the antidepressant effects of Zonegran...that is what I am actually most impressed with. It seems to have lifted my depression in a way that I haven't experienced in over 15 years, and that's no exaggeration! I sincerely don't know what's going on here, but since starting Z, I am actually able to experience moments of happiness, energy, ability to focus, etc! I still have my moments of down-time, but I'm able to see that they are just "moments" and not "who I am". I think it took about a month before I started feeling the effects, so hang in there! Are you having any side effects?
For some reason, it's working for me...maybe it's adding to the AD effects of the Effexor, which I've been on for ages.
I was diagnosed as Unipolar or Major Depressive until the past few years...now I believe I'm correctly diagnosed as Bipolar II. I've had more than a few hypomanic episodes, and the mood stabilizers really seem to help me.
Zonegran is helping with my appetite in that I feel much more "full" before I finish a meal, and I also just don't feel all that hungry at lunchtime anymore...or, I'll get something to eat, then sit down, and won't want to eat it. It is also helping with food cravings...I can keep myself from eating those sugary, tasty foods a lot easier now.
Anyway, hope this helps a little!
Sooshi
Posted by rockette on June 27, 2004, at 18:49:36
In reply to Re: ZONEGRAN WORKS WONDERS » PCH, posted by sooshi on June 27, 2004, at 9:35:51
Glad to finally hook into a Zonegran link!! Am switching from Topamax to Zonegran for migraine control. Did you taper off the Topamax? I've been decreasing my dosage for the past three weeks and the migraines have been increasing tremendously--am afraid if I go down to no meds before starting Zonegran I'll be smashing my skull in with head pain.
Posted by sooshi on June 27, 2004, at 19:30:51
In reply to Re: ZONEGRAN WORKS WONDERS, posted by rockette on June 27, 2004, at 18:49:36
Hi rockette!
I did very little tapering off of Topamax (400mg)...actually my pdoc said I didn't need to taper at all, but I decided to go down 50mgs every other day, or something like that. I quit cold turkey at the last 50mgs with no side effects at all, and promptly started the Zonegran that day.
What dosage are you down to on the Topa? If you're at the 25-50mg mark, ask your pdoc about dropping the Topa and starting the Zonegran. I've read a couple of other posts where Topa has just been stopped, with no ill effects.
Good luck to you, and keep me posted,
Sooshi
Posted by PCH on June 27, 2004, at 22:24:01
In reply to Re: ZONEGRAN WORKS WONDERS » PCH, posted by sooshi on June 27, 2004, at 9:35:51
Thanks again Sooshi. Your information is VERY helpful in addition to being encouraging.
I have yet to start the Zonegran as I am having some kind of toxic effect from the Marplan which I am trying to figure out with my Pdoc.
I would like to add on the Z as soon as possible though until we can sort out the Marplan situation he doesn't want to add anything new to the mix so as to avoid possible confusion as to what is doing what.
Though this is a common situation and I have been through it many times,I find it very frustrating. Particulary after hearing the success you are having with the med. I see him Tuesday and will hope to get some direction as to where to go next. An SSRI plus Zonegran seems like a reasonable option.
I have not had success with mood stablizers in the past though if I am to switch drugs I may be able to add in the the Zonegran during the transition and hopfully realize some benefit before starting another AD.
I am so pleased to hear how well it is working for you. This gives myself and others hope.
Phil
Posted by barney27 on June 27, 2004, at 22:48:08
In reply to Re: ZONEGRAN WORKS WONDERS, posted by rockette on June 27, 2004, at 18:49:36
Rockette:
I've been trying to post a response, but I'm not sure if it worked. It this comes twice, I apologize! I was on Topamax for back pain, not migraines. (I'm on Verapamil for migraines). I stopped Topamax cold turkey before my back surgery in February. Now, I'm on Zonegran for nerve pain after back surgery. I was on about 50-75 mg before surgery. My Dr. did not tell me to taper off, so talk to yours before you put yourself through the pain of stepping down. The Zonegran, however, took me about 4 weeks to get up to my current dosage, which is 400 mg. You don't want to double up the meds, but you don't want too much lag time in between either.
Good luck! Barney
Posted by SLS on June 28, 2004, at 17:11:02
In reply to Re: ZONEGRAN WORKS WONDERS » PCH, posted by sooshi on June 27, 2004, at 9:35:51
Hi Sooshi.
> As for the antidepressant effects of Zonegran...that is what I am actually most impressed with. It seems to have lifted my depression in a way that I haven't experienced in over 15 years, and that's no exaggeration! I sincerely don't know what's going on here, but since starting Z, I am actually able to experience moments of happiness, energy, ability to focus, etc! I still have my moments of down-time, but I'm able to see that they are just "moments" and not "who I am". I think it took about a month before I started feeling the effects, so hang in there!This is exciting news!
Because of your posts, I think I might give Zonegran another try. I stopped it the first time after only two weeks after I reported severe itching to my doctor. However, I'm not convinced that it was the Zonegran. It may have been the Strattera that I began taking around the same time.
Do you experience mania or mood swings, or have you been continuously depressed? Would you say that Zonegran has produced a powerful antidepressant effect?
I experience only depression, but it is suspected to be bipolar because I have had a few manic reactions to medications before.
I'll be keeping my fingers crossed for you!
Be well.
- Scott
Posted by rockette on June 28, 2004, at 19:29:22
In reply to Re: ZONEGRAN WORKS WONDERS » sooshi, posted by SLS on June 28, 2004, at 17:11:02
I swear I'm in medication hell right now. Had some surgery on my throat and am taking a mixture of meds for that (antibiotics which ALWAYS give me headaches and steroids which do wonders for burning up the stomach!!) Two more days of this then I can go back to attempting to switch to Zonegran. Afraid to make too many changes at once or I won't know how to judge "side-effects" or good effects!! I had been taking Wellbutrin with the Topamax and it was very effective for migraines except for the Topamax side-effects. Was wondering if anyone knows how Zonegran and Wellbutrin work together? Sounds like they are both "happiness" pills!! All I want is to be rid of the headaches!! Sorry for the long post!
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