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Author
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Topic: topomax and irritability
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gojumo
Member
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posted 15 March 2005 12:29 PM
   
Hi guys,
I can't remember if I mentioned it or not, but i read on another thread that zinc is really good for preventing hair loss for Topa. just an fyi. This forgetting words and train of thought crappola stinks as I have to get up in front of groups of people and speak at work!!! ug! nothing like looking like an idiot looking for a simple word! Some days I want to find a cave and hide in it! My husband wants to know why I don't just go off of it. 'cause I don't have a headache! lol hard to explain. at least you guys understand. do you guys crave salty stuff? of course I feel nauseous briefly afterwards... but anyway... :0)IP: Logged |
just_plain_sleepy
unregistered
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posted 15 March 2005 04:01 PM
I am so glad I found this site. I just started taking topomax for migraine prevention two weeks ago today. My primary care doc prescribed it after a two week migraine. My migraine med was changed mulitple times, I took various pain killers, they gave me a shot, I had an MRI....I thought it was never going to break. I started on 25 mgs., increased to 50 mgs week 2. In fact, today my dosage increases to 75 mgs. I feel like have been a walking zombie for two weeks, but after reading what others have been through I see a light at the end of the tunnel. I am also experiencing the tingling sensation in my feet and hands. I take 25 mgs. in the a.m. and will take 50 mgs. starting this p.m. I am supposed to stop at 100 mgs. However, over the past couple of weeks I have had at least four headaches, but the migraine medication has worked. Did anyone else experience this? They aren't nearly as intense, but still bad. I have been told by a few people (namely my mother) haw irritable I have become. I am normally an upbeat person, but not so these past couple of weeks. All I really want to do is sleep, sleep, sleep.IP: Logged |
gojumo
Member
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posted 15 March 2005 04:13 PM
sleepy,
I have faith that it will get better for you...you had to peel me off the floor for the first two weeks, but now the topa makes me kinda hyper and I'm going to have to ask my dr about giving me something to help me sleep. go figure! the side effects differ from day to day. it's the weirdest dang drug i've ever taken... just my opinion. try to ride it out. I was a zombie and swore I'd never eat again- but things changed. good luck. keep us posted. :0)IP: Logged |
RJ
Member
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posted 15 March 2005 05:17 PM
Hey Everyone.... Must be the weather... I think we are all just feeling a little...”ugh.” I was reading over the posts and we seem to all be feeling the same way here in the last 48 hours. Another day of feeling a bit icky myself - but dragged myself to the desk.Just plain Sleepy - Welcome and stay with us... it's a good place to be - here on the board. Gabbysdad - sorry you don't feel well 2day.
 Hope 2morrow is better.
Princess - I feel for you. The “weaves” stink. I happen to fall to the left at random sometimes. Sounds like Goju too...is experiencing the "I know what I want to say - I just don't know HOW to say it" syndrome. I can't stand when this happens to me.... Lately, I just plain forget what I AM SAYING. For instance I was mid sentence answering someone's question on the phone about a program - and suddenly - forgot - literally - what I was talking about.  I don't know if it is the headache or the Topa - but whichever it felt horribly embarrassing. Jeez - at least if it was Alzheimer’s, I'd forget that I forgot. I don't even have that capability! No, I was just sitting there……..la – tee- da……dead silence……. and what exactly does one do in this situation? “Um, excuse me, could you tell me what I was just saying to you ? I am on this medicine and it makes me forget what I am doing.” How horrible! No, I pulled a “ Can you hold please.” out of my arse, then a “Now, where were we?” Still didn’t go so well….. Felt like a heel. Goju - I am with you on the cave plan. I am serious about the “Migraine Mansion.” If I win the lotto BIG... I am building us one and getting us a private charter - You are all welcome to it. It'll be our escape. Maybe we'll erect it in Mexico for Gabbysdad - or Cayman...my favorite place on earth. 
RE: salt...it was the ONLY thing I could actually taste for a long time. Glad to hear you are getting the appetite back. That is good. Even more happy to hear that the headache is staying away for you. Yes - I have asthma and yes,it was horrible - especially about a month after starting the Topa. Topa thickened my mucus, I was puffing away on the Albuterol like it was O2. Had to go back on the Advair. Now that I am on the Advair - I am fine. Just have to make sure that I really watch it with the colds and keep the Lysol close. Princess has some good insight on this too…. I think she had a ‘bout with it also. Hope you guys have a better day tomorrow… wishing sunshine your way. Take care, - RJ
[This message has been edited by RJ (edited 15 March 2005).] IP: Logged |
chappy
Member
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posted 15 March 2005 09:32 PM
wow this is strange stuff this is my 3rd day on topamax and it feels like a lifetime the days are a blur. It didnt take long for the taste of diet coke to go it was the day following my first dose. (of 25mg) I am very tired or foggy headed but yet I cant really sleep the first night I slept well except my dreams were very vivid but the next two nights have been like my mind wont shut off I keep looking at the clock thinking "I need to go to sleep" someone please tell me this will pass. The first night I took it at about 8 and was so tired by 9 but the other nights i waited till about 930 to take it. Does anyone seem to have a time that works well ? Anyway I am feeling hopeful though that this will help the migraines IP: Logged |
gojumo
Member
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posted 15 March 2005 10:03 PM
Hi guys,
Well... I have a friend that is excited about the topa side effects because he says he may actually be able to outwit me now... lol.
RJ: I spoke a little soon on the appetite thing. Here's my new plan... I think I'll put a really tight (can't think of the word), ummm, rubbery...ummm, oh..rubberband,(sorry), around my wrist and just snap it really tight anytime I think of eating! lol! just jokin'! thought this might remind me that every time I want to eat it just doesn't seem worth it lately... I feel nauseous afterwards...
**Today I could have sworn that I had a migraine but the Topa wouldn't let it through; anyone ever feel like that before?
***Chappy: it seems we all start out that way; it will get better. This board really helps. I look forward to it every day. It helps me feel normal.Good night to all.
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Princessdinkydi
Member
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posted 15 March 2005 10:58 PM
Good evening.....the sun went down!!!!
That's it...Moderator ---we need a smilie with vampire fangs..... Welcome Sleepy! Glad to hear that your head is feeling better! I am suprised to hear that you are titrating so quickly though! Otherwise what you are describing is pretty normal as far as S/E's go. We have a running joke around here....if you want to warn people about how you feel, don't wear any make-up (women)/brush your hair (men) and people will get the hint RJ: YUP. on everything except the sunshine..(hiss) Sorry to hear the new combo isn't working so well anymore. It's a shame that this wasn't the new "wonder cocktail"....now we'll have to go back to the science lab and find something new. .....start thinking of that martini name..... Chappy: HON I FEEL FOR YOU. I remember how the hours seemed like days. The first month or two seemed endless. Let me tell you it will pass dear....just be patient. Have you asked your Dr for a sleep aid? Rx strenght? I've been on one since I started Topamax. My head hurts so much that without it I'd never sleep. My goal is that once I don't have headaches/or symptoms of headaches anymore I won't need the sleep aides either....but until then I am a hopeless insomniac along with being a vampire Goju: Rj and I were just discussing this. Our nuro's most definately believe that the Topa subdues the migranes but lets symptoms "slip" out....like sensativity to light...mild headaches, upset stomach, etc.
As far as your appetite...when do you take your doses? am or pm? Sometimes it helps me to eat anything right away in the am before I take my first dose. I don't have the stomach for anything else during the day, but at least I have that first little meal in. I have noticed that without that first little meal I am tons dizzier throughout the day. Maybe you could try that? [This message has been edited by Princessdinkydi (edited 15 March 2005).] IP: Logged |
gabbysdad
Member
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posted 15 March 2005 11:19 PM
RJ - thanks for the kinds words. But the headaches are back, so I will go back onto the topamax, in addition to the antibiotics which I think are doing no good.I have to get another MRI in 2 weeks to see if the antibiotics did anything for my sinuses. No caffeine in the am is not a good thing for me. I have a hard enough time waking up. So I will post again in a few days after seeing it the topa makes a difference with the terrible migraines. gabbysdad IP: Logged |
just_plain_sleepy
Member
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posted 16 March 2005 11:46 AM
Thanks to all for the kind words of support - it means so much! As I'm sure you all know, finding this board is a blessing for me. I can try to explain to people what is going on with me, but no one gets it. All of you do! My dosage increased yesterday to 75 mgs (25 am & 50 pm) and I had an extremely rough night - my stomach was a mess! I am so nauseous today and the thought of food makes it worse. My taste is completely off - not just soda. A lot of food tastes spoiled or something. I can't quite put my finger on what it is. Has anyone else experienced this? If so, what did you do? The only thing I can stand right now is water. I am also experiencing some of the same things as others: lack of concentration, random breaks in thought (right in the middle of a sentence) and dizziness. As I said before, the worst for me is being so sleepy. Again, thanks to all for the kind words and for any and all suggestions. It makes my day knowing I have a place to come where people "get me". IP: Logged |
just_plain_sleepy
Member
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posted 16 March 2005 01:43 PM
gojumo - I am a fellow missourian! I just read through some of the previous posts and saw that you are too! Where in MO are you located?I just have to reiterate, as many before me have, I feel so "normal" here. I am confused about something though. Do the SE go away once the mg levels off? I'm not to that point yet and won't be until I hit 100 mgs., but do they ever go away? Or does it differ by individual? IP: Logged |
chappy
Member
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posted 16 March 2005 01:52 PM
help had a terrible night my loving husband and I had a arguement and he seems to think I am acting wacko which really hurt my feelings.But what I am wondering is if this could be because I was taking amitriptyline and it mad me very irritable I think more inside then I let show there were times when I felt like I was going to freak out but anyway I stopped taking it four days ago when I started the topa so I am hoping if I am acting strange that it is the combo of withdrawls and getting used to the topa. Had anyone else used amitriptyline and if so how were the withdrawls I was only on 25 mgs but I am very sensitive to meds. Well I just needed to vent I am still frusterated because 4 days is not long enough on any med to know if it is working or not and the other option is horrible migraines which Lord knows I cant handle . Thanks for making me feel welcome to be strange IP: Logged |
Becky
unregistered
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posted 16 March 2005 02:08 PM
I just want to reccomend Topamax! I have had chronic migraines my entire life and Topamax has been the only medicine to stop them! I take only 75 mg/day split b/w am and pm and I have been practically migraine free for almost 6 months!!! I used to get migraines 3-4 times a week. The key to this drug is to be patient, I wanted to go off of it after 2 months because it was not working yet, but my neurologist made me wait and I am so glad he did.
There are some side effects: tingling in the feet, decreased appetite, some memory and word choice problems. But I would much rather deal with these slight annoyances than be totally incapacitated with migraines every other day.
Also - be careful if you are on birth control - it can decrease its effectiveness.
I highly reccomend Topamax! I hope it can help some of you!IP: Logged |
RJ
Member
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posted 16 March 2005 02:24 PM
Becky - Welcome! Thanks for the recommendation....stay on the board. It's a great place 2 B!Princess- You're cracken me up...I'm wishing the sunshine your way without the squints of course Chica! The hissing is scaring me. I put on garlic and holy water. J/K  (Lost Boys) Chappy-
I am really very sorry to hear that you had a bad evening. It's hard to disagree with people that you care about - especially when you feel, maybe they are not understanding YOU. That can feel really hurtful. You do sound normal in your frustrations and what your are posting, to me, if it is any validation. I hope that today gets brighter. Wishing strength and better vibes your way,
RJ [This message has been edited by RJ (edited 16 March 2005).] IP: Logged |
Princessdinkydi
Member
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posted 16 March 2005 03:25 PM
Chappy:Don't you dare feel guilty. YOU ARE IN PAIN.
This will pass. I'm sure your hubby is just scared for you, but he needs to understand that this is better than feeling the pain of the migraines. At least until they can find a med without the S/E's. IP: Logged |
Princessdinkydi
Member
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posted 16 March 2005 03:33 PM
Sleepy: Until you catch a cold (sniff)  RJ: You're too funny. However I think I know now who's been sending all this sun. For 2 weeks straight it's been nothing but sunshine and daisies up here. (I'm getting pretty flippin tired of hiding under the covers so knock it off with all your "vibes" would ya?) --Hey I bought a pair of jeans the other day....down two sizes....guess this isn't ALL bad huh?
IP: Logged |
gojumo
Member
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posted 16 March 2005 04:39 PM
princess-I take my doses at 7 and 7, but no time seems to be good for me to eat. ;0( gummy bears stay down ok. lol. slippery little guys. hee heesleepy- food tastes seem to come and go for me. One day chocolate tasted nasty; the next it was ok... chappy- I felt like a constant side effect complainer to my husband, so I printed off some of our comments from this board and showed him that I am not alone. It helped him better understand. Maybe you should try this. If he better understands the drug and what is wrong; he may be more understanding. hey all- you know those hand warmers for really cold days that come in packages? Like for camping trips? I actually found some in my closet last night and took them to bed. sooo tired of cold hands! lol sleepy- from Springfield in MO. you?
happy days to all! goju IP: Logged |
RJ
Member
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posted 16 March 2005 05:44 PM
Oh....Goju - good advice! - that reminds me - you guys...the heating pad has been my saving grace through most nights. I tuck that sucker down there around my feet and it keeps them warm. It works!Princess - YAY! Down two sizes. See that is somethin' to smile about. Ok - I'll quit sending sunshine. Now, if I could just use the same energy and vibe I am using for the "rays" to kill off the "graines"...
Good idea though for the monitor... we need a few Vampire smilies...and maybe a pitbull with lipstick too ( I could think of a few days that I could stamp that next to my special self)!
[This message has been edited by RJ (edited 16 March 2005).] IP: Logged |
Princessdinkydi
Member
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posted 16 March 2005 06:50 PM
Pitbull with lipstick....You get me with that one everytime. IP: Logged |
gabbysdad
Member
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posted 16 March 2005 09:01 PM
Hello all, back on the topa, and feeling weird as hell! Been spacey all day. Dizzy feeling, hard to work. Had to leave work today to go home and lay down. Really hard to drive home like this. At least people noticed that I lost some weight, thanks to topamax. Another stupid headache today, but at least its dulled by the topamax. A mansion for us "topa" users? Sounds great! But yes! It has to be in Acapulco. The weather and beaches are great. And the tacos too! Ric [This message has been edited by gabbysdad (edited 16 March 2005).] IP: Logged |
gojumo
Member
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posted 16 March 2005 10:29 PM
big whoooops- alert! alert!!!!!
so many things to remember with this drug- my dr.must have forgot to mention that my birth control wouldn't be effective while on Topamax! well hello! That might just be a freakin' important one to mention! don't jack with me mister! I'm on Topamax! lol! well. I left a message with his nurse and said I'd seen it on the internet that it lost its effectiveness with if on Topa. Well the dr. called back within 2 minutes (ya know how often that happens). with a "whoops" we need to get ya on something else. No ****. I was in quite the mood today! I saw that the birth control could lose its effectiveness on the insert, but figured if it applied to my particular birth control that surely he would have mentioned it. Well, just a word to the wise.... do your own research and question your doctor. I know we all do; that is why we are all here. Never feel bad for focusing on your meds! We are all ok!I was so stressed I asked my hubby to bring me home my fave banana split (hadn't eaten all day); down to 115 #... it tasted like Lysol. Literally. Lysol. I just started crying. big sigh. just one of those days. in case anyone is wondering just for drama sake. first preg. test was neg., but of course will have to do a couple follow ups to be sure. Have an 8 yr. old I am perfectly happy with. :0)
smiles to all- goju in mo.Sorry so long. Long day. IP: Logged |
Princessdinkydi
Member
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posted 17 March 2005 08:32 AM
HE HE!!!!!!!!!!!!!!!It's Cloudy today!!!!!!!!!!! For once my head is not THROBBING! (Grant you it's still only 6:30am, and RJ's probably not up yet to send those freakin "vibes" yet but as of right now the sun is not out!!!!)----how twisted is the life of a migraine sufferer? IP: Logged |
just_plain_sleepy
Member
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posted 17 March 2005 10:10 AM
Happy St. Patrick's Day to all!I woke up with a horrible headache and it is still with me. My boss decided it was a good time to point out there was an article in the local paper's business section (Kansas City Star) this morning regarding migraines and the effects on businesses - the number of missed days, etc. Thanks so much, boss!! Not really the way I wanted to start my day! It's not like he doesn't know what is going on and what I am dealing with regarding Topa. Just another reason why I am thankful for all of you! The last line of the article does mention treatment benefits (nothing specific though). I was able to eat a little last night, but it messed with my stomach. I ate some Tums, but boy they taste bad too!!! The only thing that tastes good is H2O. I haven't weighed myself, but I hope to at least enjoy that benefit. Goju - so sorry about the banana split...nothing worse than knowing something will taste great and being sorely disappointed! I can't eat anything sweet right now...it is like pouring sugar in my mouth...I guess that is a good thing?!? Also, the drug interaction with the pill. My pharmacist said something, but didn't have too much info....said to talk with my doctor. How reassuring. Isn't that their job? By the way, I'm from Kansas City (originally from Lee's Summit). Princess - down 2 sizes - good for you!!! as I said before, hopefully I will benefit as well...only time will tell! I wish everyone a good and headache free day!
Laura [This message has been edited by just_plain_sleepy (edited 17 March 2005).] IP: Logged |
gabbysdad_2003
unregistered
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posted 17 March 2005 11:50 AM
dang headaches are back in full force again.topa is not helping. Vicodin is last resort for me, because I just can't do any work while taking that stuff. And after having been gone for 8 days, I have work piling up. I can't believe that the MRI showed nothing if I have headaches every day, and topamax is doing nothing for me. Anyone have any suggestions for vitamins or natural remedies that may help, even slightly? Ric IP: Logged |
gojumo
Member
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posted 17 March 2005 12:22 PM
hey sleepy, I grew up in Grandview... small world...
well as far as the birth control, called the topa hotline and they said that 50-200 a day will not effect it. all that worry for nothing! don't they know I don't need any additional stress!
so sorry for you guys that topa isn't helping your headaches! I have never found anything else that helps. Talking to the Topa nurse did help me this morning. I called the manufacturer. She said about 4% had the cough and heavy feeling in their chest that I do...
well, hang in their everyone; at least spring is here- gojuIP: Logged |
notanat
unregistered
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posted 17 March 2005 05:49 PM
well went to the neuro today for my follow up. why is it that neurologists offices have the brightest lights in them? I was feeling fine untill I got there! then with all the fluorecent bulbs and pen lights being shined directly into my retnas, the good feeling were not so much there anymore. o well. still i have to say overall the topamax really has been doing its job dispite all the goofy s/e. Ive gone from averaging 4 headaches a week (and a 13 day marathon that finally drove me into the DRs office) to only 3 in the past month. and even those havent been full fledged ones, almost phantoms, migrain-wannna-be's that couldnt quite make it. unfortunately I have one right now. excuse me while I pop a midrin and take a quick cat nap ZZZZZZZZZZZ
Looks like 100mg a day is my stopping point. ok with me. this is enough tingling and stupidity. I just applie for a newjob (same company, new position at a diferent location)and Im dreading the interview! not being able to find the words it not a situation I want to be in at that particulat time. I find myself relying on nonverbal communication more-using hand signals whever possible, I think my coworkers are getting used to it.IP: Logged |
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