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Author
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Topic: topomax and irritability
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LP
Member
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posted 12 February 2006 06:06 PM
  
Hey KJ,
I finally did get relief at 150 mg. My doctor had me sitting at 100mg (he said it was the top dose). I got tired of that for a month, having 4 bad headaches a week. I finally decided on my own to up my dose to try to get to 150 since it seemed like a lot of the research showed effectiveness between 100-200. I got to 150 and then went to the doctor and he was ok with the dose. After 4 days on that dose, I was much better. I've been on that for about 4 weeks, and get usually just one headache a week. Sometimes 2 but not usually. This is remarkedly better for somebody like me, who before topamax had a headache 24 hours a day, and took imitrex 4-5 times a week. I know with me, I've tried to be agressive and early on got my dose up quickly even though the side effects would be worse, trying to avoid getting back into rebound headaches. Even now, if I would take imitrex 3 days in a row, I have to call the doctor, to get something else or to go on a round of steroids. If you are taking a lot of imitrex, you may still be stuck in rebound headaches, or your dose of topamax may not be high enough yet. I have tried so many other meds so I don't have alot of other options. So far, this is the best one for me. I don't like the side effects, but the days I don't have headaches, I have absolutely no trace of a headache at all- thats a first for me!!! It is worth the side effects. Maybe what we see here on the board is that we post when we feel bad, or have problems and need advice or help. All everybody sees are the bad things and then it gives the impression that topamax has horrible side effects and everybody has a headache all the time. We should probably encourage more and put down our successes too so that others will know that there are "high" points too, especially for those new to the medication. I know I am glad that I tried topamax and am glad for all of the support you all have given me. KJ, I hope you will stick with it, I think you just need more time to get to the right dose. I wouldn't give yourself a certain amount of time, but work on the dosage, and make sure you are elimating your prescription and over the counter meds. IP: Logged |
gmaxcook
Member
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posted 12 February 2006 10:18 PM
Lydia,
Great! My Doctor paused at 100 as well, I think its written in the "books" to do that. She was all for the next step though. She actually suggested going all the way to 200 and I ordered the 100mg tablets thru the mail but in the meantime tried 150 daily with what I had at home. I found some improvement but not quite the level I wanted, so when the "big boys" arrived I started 100mg every morning and night and have had success. I had 24 HOUR headaches as well!! Since the upper dosage 3 weeks ago, I've had 3 headaches. You are right, we do growl about the side effects, but thats just us girls....we like to do that kind of stuff. Kimberly...Are you OK? Sheila IP: Logged |
missy
unregistered
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posted 13 February 2006 01:20 PM
Hello everyone,
I just recently found this site and had to write in and ask for some advice. I have been suffering from migraines since my early 20's...I am 43 now. I have just recently been placed on topomax and am on 100mg's a day. I can't tell you how wonderful it feels to not suffer from a migraine for one day after practically waking up from one every morning for the past twenty years. I also suffer from cluster headaches, high blood pressure, and have recently been diagnosed with schlerosis of the liver from all the acetominophen that I was taking for my migraines. I guess my question has to do with all the side effects. Like a lot of you on this site, I am having the tingling in my hands, but I am also getting them all over my face, head, scalp, neck, shoulders, back...it feels like my whole upper torso. Is this supposed to be like this, and is it going to last forever? I would rather have this than the migraines, but I was just wondering if any of you had them like me as well. Also, has anyone had any numbness on their tongues? My tongue has been numb since about the third week that I started. It feels really strange not having any feeling there and I haven't read anyone having this symptom. I have been on topamax for about two 1/2 months now and I am so glad that I found this site. I am not totally migraine free yet because I still get them around the time of my monthly cycle so I think my neurologist may want to increase my dose again from 100mg's a day to 150mg's soon. I am afraid that the numbness on my tongue will get worse or spread if he does increase my dose. I hope someone out there has had this same problem like me and can give me some advice. I am so happy to have found this site. I hope everyone is having a good day today. Like my oldest son shared with me, "Mom, it's so good to see you smile." I wish all of you a day that's filled with smiles. Thanks for listening.Missy IP: Logged |
Princessdinkydi
Member
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posted 13 February 2006 01:56 PM
Hey Missy welcome again!
(I posted at you on the other line)Hey guys been hiding for a good reason....double whammy. I'm up to 800mgs now. Doc(all three) don't know what they'll do next...ordering more CAT scans. On Supp shakes now cuz I haven't eaten in over a month.(then things just come out the other end just as quick).....think it's cuz of all the meds. Daughter can't handle it anymore.....went to live with her father.
I think it's because she's scared.....I guess I can't really blame her, but it cuts like a knife that my baby girl doesn't want to be with me. She says she wants her "mumma" back and that she wants a normal life.
She's 16....I suppose huh? At any rate you'd think I'd be depressed huh?  Cried for a few days straight --- which didn't help the Migraines (duh) but now, I find myself in the unique situation to just smile and say----
Work comp you WILL PAY FOR THIS!!!! I know not everyone has the ability to do that, but it is my only relief right now.
I never thought it would come down to my daughter leaving.
[This message has been edited by Princessdinkydi (edited 13 February 2006).] IP: Logged |
Princessdinkydi
Member
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posted 13 February 2006 02:05 PM
Missy--I too have found --we have a topic started on this--- that our monthly cycle triggers Migraines. RJ has some good theories about this, as well as some good solutions/preventatives. Topamax does not seem to assist with the hormones involed with this. IP: Logged |
Princessdinkydi
Member
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posted 13 February 2006 02:12 PM
quote:
Originally posted by LP:
I don't know who on here has a main goal of losing weight. I know as for myself, I'd love to lose the weight I gained over the 20 YEARS of daily migraine medications. I'm trying to keep eating so that I don't feel so sick on this medication and so MY HAIR DOESN'T ALL FALL OUT AND I NEED A WIG!!!
Hey LP: interesting note: I lost hair like crazy at 200mgs.....so I cut my hair, 9 inches of it.
(like I posted above I'm now at 800mgs)
been at pretty much high doses now for a year, and I haven't had trouble loosing hair after the 200mgs mark..... Also You know how you loose weight?
By not being able to eat and being nausious all the time. That's the joke my doc and I have.
He always tells me,
"Hey, I didn't say HOW you would loose it....I just said you probably would." Smart _ss. At any rate I wanted to tell you that I found that interesting, and also that my hair now is chin lenght, and my nails are still growing, even with all this crayola going on......just make sure to take your vitamins.
IP: Logged |
gmaxcook
Member
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posted 13 February 2006 05:57 PM
Princess...
sounds like you could use a shoulder...I wish there was something we could do to help you. My heart goes out to you. Your daughter just cant bare to see you in such pain. I was actually just thinking of you today and wondering where you were. I have my fingers crossed that something will work for you soon and you'll find relief.
SheilaIP: Logged |
kimberly
unregistered
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posted 13 February 2006 11:31 PM
Hi Everyone,Princess, I wanted to tell you that I'm sorry your daughter's not with you and that things are so rough for you. I will keep you in my prayers. Lydia and Sheila, I'm okay. Just feeling under the weather. Weak and incredibly tired. Last week I brough work home from my job, but having fought the same headache since morning, I was beat. I went to bed at 6:00. I'm having some difficulty organizing my thoughts, but at least I am spelling correctly!!!! The tingly's have begun in the hands, feet, fingers...And there's been some dizziness where I walk like a crab. However, if I'm lucky, the only people who will notice will be teenagers who will want to hail me as creator of the next cool dance faze. Your lovely little tidbits of advice have saved me from torturous instead of merely unpleasant days. I'm drinking my water and nibbling my Wheat Thins. I was wondering, though...could one's headaches be hormonally based even if she's had a hysterctomy that's left but one ovary? Even if that person is not even premenopausal? I'm sucking down 3 tablets of ibuprofin every 3 hours just to get the pain to a slow hum. I have to lie down now. I'll check the board again soon--probably in three days. I get wrapped up in my job responsibilities, but I'll poke my head in guys, and say hello.
Have a terrific week. Affectionately,
Kimberly
IP: Logged |
missy
unregistered
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posted 13 February 2006 11:40 PM
Hi Princess,Thank you for the info. about the site on hormones and migraines. I'll be sure and check it out and read everyone's experiences there. I appreciate it. Anyone have any experience still on the tongue numbness while being on topa? I hope I am not the only one feeling this side effect....feeling alittle alone in the ocean at this moment ....thanks for listening. Missy
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missy
unregistered
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posted 14 February 2006 12:29 AM
Dear Princess,I am so sorry to hear about your daughter moving out and not being with you right now. You said she is 16? I have a son who just turned 18, so I can still remember how it was to have a 16 year old. This must be such a rough time for you right now. Please know that I will be thinking of you and praying for you. I know that all of this stress does nothing to help prevent your migraines. Please try and find some peace and calm for yourself somehow if only through this board. I know your daughter is there for you. She's just handling everything the best that she can at this time in her life. I guess that is all that each of us can do....we just have to try the best that we can each day...one moment at a time. I'll be praying for you Princess. Take care. Missy IP: Logged |
Spacey
unregistered
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posted 14 February 2006 12:10 PM
Hey Everyone,All I can think of right now is, "Good Golly". Princess bless your heart, you are really going through the wringer right now. Words can't begin to describe the emotions I felt while reading your post. The others are right, your daughter is just dealing the best way she knows how, by retreating. I, too have a teenaged daughter, and sometimes their skin isn't as tough as they'd like us to believe. My thoughts and prayers are with you....Keep us posted and know that we're here for you!(I'd put in a smile if I knew how!) Missy, My tongue gets numb, also. Kind of like a trip to the dentist's office without ever leaving the house. Very weird and a bit disconcerting at times- with a nice metallic taste thrown in for good measure! It's not happening as frequently now, just started month 2, so I'm hoping it'll go away soon. Hope everyone has a great and pain free day!
Spacey IP: Logged |
missy
unregistered
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posted 14 February 2006 01:21 PM
Hi Spacey,Thank you for responding!! It's good to know that I am not alone in this tongue thing. The way you describe your symptoms sound exactly like mine so I know we are having the same side effect. I can't say that I can relate to the soda thing because I had to stop drinking soda. I used to drink diet soda like water, but then I found out that the artifial sweeteners were migraine triggers for me so I had to stop drinking them....boy, was that hard...ugh!!! I tried to go back to regular soda, but they were just too sweet for me at that point. I wonder if there are a lot of people out there that don't realize that artificial sweeteners can be a trigger for some migraine sufferers, especially nutra sweet..at least they were for me. Anyways Spacey, thank you so much for sharing. Now I don't feel so alone out there. I plan to go to the dentist soon to have my wisdom tooth pulled. I wonder how much novacaine (spelling?) he has to give me with my tongue already numb huh? (giggle) I hope everyone is having a good day. Princess, I have been praying for you. I hope you are doing alright. Missy IP: Logged |
RJ
Member
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posted 14 February 2006 06:08 PM
Hey people:Princessdinkydi - I was so sorry to read your post. How are you doing right now - today? Who is supporting you around the house with this or in the family? Do you have a support network to give you a hand with how you have been feeling lately and how you have been with your adjustment to the medication? Are things looking better with your WC case? This sounds like a major change and I am hoping that you have a good support system. I wish there was a crystal ball to fix this for you RIGHT NOW  . - Definately keeping you on my wish list of good things and in my chats with "the big guy". Also - playing power ball with your name on part of it girlfriend - and then the Migraine Mansion - for times like these. Tight hug,
RJ [This message has been edited by RJ (edited 14 February 2006).] IP: Logged |
Princessdinkydi
Member
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posted 14 February 2006 09:46 PM
Hey RJ, Missy, Spacey, GM, Kim...Thanks... Support mainly has been friends and my mom....they love me in most ways, but fumble through trying to understand migraines. They do an outstanding job of trying though. RJ; you know how Mr. wonderful is though. Otherwise you guys are it.....and I appreciate all of it! Today was a good day as far as could be expected. My girlfriend took me to her cousin who was gay and we had a "girls day" chatting and hanging out, then afterwards she did my nails..(she's a nail artist)
She did crack on me for looking too thin, but ...what can you do huh?
I know she loves me Thanks for all your warm wishes. How was everyone's Valentines day?? Any Romantic evening's for anyone??
IP: Logged |
Fusun
unregistered
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posted 14 February 2006 11:31 PM
Hi Princess,
I've just read your e-mail and I felt very bad but if you could live with this damn thing for this long, you must be a very tough
woman and your daughter will be your best friend in a few more years for sure... I remember the things I said to my mom when I was at that age-now she is my best friend. So hang in there...Everybody else: I'm new to the group and I have a really bad headache when I'm writing this and I really wish us all miraculous solutions with every problem we're facing including the migraines... Take care... IP: Logged |
Spacey
unregistered
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posted 15 February 2006 12:38 PM
Hey to the Gang, Sometimes I just read and reread the posts and think, where have you all been throughout my migraine life???? I have an understanding family, don't get me wrong, but you all really get it. The constant frustration of daily headaches and not wanting to ***** all the time, but somehow doing it anyway. And then thinking, how long are they going to put up with me? How long am I going to put up with me? Oh crap, I can't leave me! Where would I go? I know all of my favorite places!!!! Sorry, I lost it there for a minute....I'm going to see my wonderful MD in a little while and was thinking that I might have to put his head in a vise for awhile, as we talk, so he'll really understand where I'm coming from, (a Topa moment for sure!) I hope everyone's head will feel better soon, maybe a shot of tequila is called for-HA!, hugs to all. Princess, still thinking about cha and wishing you well. To all of the "newbies", I'm horrible with remembering names and I neglected to write them down before I started to write on this page. Please forgive me... welcome one and all, here's hoping you'll find what you need here within these pages and people. Spacey IP: Logged |
Princessdinkydi
Member
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posted 15 February 2006 03:42 PM
GRRRR....I just got a notice in the mail today that my Ex wants to take me to court for custody of my kids citing that I cant' properly take care of my children cuz of all this. I am about ready to go postal.
(no offense to any goverment empoyees out there it's just my way at a lame attempt at humor here) Thank THE LORD I have my faith!!!!
Some how some way this will all work out. All you out there.....look and see, there is strenght to be found here! Look at your loved ones and appreciate what they are doing for you! Seriously.
IP: Logged |
Spacey
unregistered
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posted 15 February 2006 06:29 PM
Princess, I used to be a postal employee and having been one, that expression is more apt than you can possible imagine! Considering all you've been going through I doubt that there's a court out there that would hold you responsible for your actions. (I'm just kidding, but didn't it make you smile just for a moment?)
You are really having a tough time, more so than usual right now and my heart goes out to you. We'll all keep sending hugs and well wishes your way. (May the fleas of a thousand llamas infest your ex's groin!) Spacey IP: Logged |
RJ
Member
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posted 15 February 2006 06:43 PM
OH MY GAWL..I JUST LAUGHED OUT LOUD SPACEY....SO - SO- LOUD~! OK....where do we get the Llama? Let's find him and strap him on and give him on a ride!  I am still laughing......I can't even post anything serious - except for Princessdinkidi - I am going to second this one for you! Laughing and wishing Spacey's cast upon the turd-burglers of the world,
RJ IP: Logged |
RJ
Member
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posted 15 February 2006 07:11 PM
I am still laughing.....  IP: Logged |
Princessdinkydi
Member
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posted 15 February 2006 08:34 PM
And may he have Dr. Wierdo for his attending physican!!!!LoL.....I'm rolling on the floor as we speak!!! I love this place IP: Logged |
gmaxcook
Member
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posted 15 February 2006 08:49 PM
I know someone with a llama!IP: Logged |
LP
Member
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posted 15 February 2006 08:56 PM
I am so sorry Princess for all of the things happening in your life. You've been so sick and it isn't right what your ex is doing. I hope you are able to have your daughter back home soon. LydiaIP: Logged |
Princessdinkydi
Member
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posted 15 February 2006 11:40 PM
Thank you sweetie:I am a firm believer that
"what we do in life echos in eternty" I have no worries.....just feel down some days. That's why I love coming here....you guys are my strength when the chips seem to be greesy and smashed up! There's a purpose for all this....I just wish it would be revealed....whooooo IP: Logged |
missy
Member
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posted 16 February 2006 02:30 PM
Princess,Gosh, I wish I were as witty as RJ...Llama...ha!ha!....that is just tooo funny...yes, strap him on it, slap the animal on the rump and hope in runs into a puddle of animal dung....ooh . No seriously, I am so sorry he is doing this to you. Like Spacey said, you can not be held accountable for your situation...your are suffering for godsakes!!!! I would like to see how your ex and his lawyers would be able to live in your shoes right now. I doubt very much that they could take even one bit of the pain you are going through. Yes Princess, justice will prevail in this one. I have faith in this and YOU WILL BE FINE. I belong to a prayer network and I will submit your intention (no names are given) today ok? Please pray for me as well ok? I dont' know why, but I woke up with a whopper today and the imitrex is not working. I guess I spoke too soon and jinxed myself. I have been under some stress and not sleeping too well with having to take care of my mom who is ill and having to take care of my little one who had been vomiting as well. This is also the beginning of my monthly cycle, by the topa always was able to help with that except on the day my period started. I wonder if its time to increase my dose. Have any of you ever had the experience where your chest felt tight when you took imitrex? I get that a lot and I try not to take it unless I really have to like today, but today at 100mg's it hasn't worked. I guess I just have to lie down and sleep. Can't do that though because I have to watch my three yr. old and pick up my other son later on today, plus take care of my mom (she is 69 and my dad is 77)....life goes on and these migraines come regardless huh? My prayers are with all of you. Take care everyone and hang in there. I know we are all the doing the best we can...one moment at a time. Aloha,
Missy IP: Logged | |
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