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Author
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Topic: topomax and irritability
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Emily
unregistered
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posted 20 February 2006 12:10 PM
 
ok I totally forgot my question though... Do people post often enough on here? I want to ask some questions but am unsure as to whether I will get a reponse... IP: Logged |
Princessdinkydi
Member
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posted 20 February 2006 02:43 PM
 
quote:
Originally posted by gmaxcook:
Kimberly and gang,
Thanks, I'll keep sticking it out awhile longer. I hope its just a "bad patch" right now. I've had a headache most of the day. I'm moving much closer to the hot tub, I've been trying to decide on the sunroom. I'm getting close to not caring about the sunroom. I just want/need that tub now. Why do you think I was having such good luck with no headaches at 200 mg daily? Then all the sudden, headaches after headaches for days. Jeez! I'm wondering if the lack of food is causing the headaches, I'm not eating much. You guys are wonderful. If I do anything tomorrow, I'm calling a contractor about a sunroom. hahah! I actually have to work! Sheila
Shelia! YES!!! Fasting will cause headaches!
Sweetie, you need to take some time and educated yourself on migraines. This will only help you in your fight to feel better. During the onset of a Migraine, one of the the things that happens is we go into a "fasting" period....can last for days. If you don't catch yourself doing it you can make your Migraine sooo much worse. If you catch it, (along with catching other signs) you can actually prevent the Migraine all together. Notice I always capitalize the word Migraine, I have a high respect for our condition.....therefore have tried to find out as much as I can. Go to the links and the bottom of our pages here and click home.....they have wonderful information articles for us!  IP: Logged |
Princessdinkydi
Member
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posted 20 February 2006 02:47 PM
Welcome Emily!Yes we post often on here... Could it be that your husband built up a tollerance to Topamax and just needed to switch off for awhile? I have been on Topamax for almost 2 years now and am up to 800 mgs a day.
I keep having to bump up because my body "gets used" to the dosage and it becomes ineffective.... I also am on Neurontin....has he tried that?
It does not work as well as Topamax, but at least it would be better than nothing at all. IP: Logged |
Princessdinkydi
Member
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posted 20 February 2006 03:00 PM
Kim where the heck are you that you had a long holiday weekend??
Don't know who mentioned the "flecks of blood in the sinuses" --sorry--- but have doc Rx a saleen spray.
Had that last winter. With all the meds my sinose started bleeding all the time.
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gmaxcook
Member
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posted 20 February 2006 03:34 PM
princess and others,
it was me with the "flecks", I totally think Topa has screwed up my sinuses, one of the prices I'm paying for now. I know, I know, I try not to skip and not eat....YES, MOTHER. (Smile) Sometimes we need hit upside the head, I think. My fingers are so crossed right now, this is a good day. I'm 30 days into 200mg a day and the first 3 weeks only saw 3 headaches!! The last week has given me twice that!! Thats what has gotten me so worked up, everything was going so well. I couldnt imagine why I was having such a back-slide. I'm still too new into the whole Topa deal to be immune to it, I just started....shoot, I cant even remember....is that a Topa moment?? It was December. I'm hanging on...guys, thanks for being here. SheilaIP: Logged |
Princessdinkydi
Member
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posted 20 February 2006 04:12 PM
Ah sweetie, don't beat yourself up....
Yes it's the stinkin Topa....amazing we can even walk straight sometimes.You'd think eating would be a "no brainer" Sometimes it takes someone to point out the obvious. IP: Logged |
DebbieWest
Member
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posted 21 February 2006 05:13 AM
Hello, remember me? the depressed mad girl on topamax? Well i am slowly reducing the dose under the watchful eye of my doctor (now just 25mg at night)and once i got back down to 50mg a day my concentration went through the roof - i can read a book again from start to finish, words aren't dropping out of my head. But most importantly the tears and tantrums are nearly gone i have control back, the down side is the headaches whilst i am weening off this drug but i was near suicidal so at the moment i don't care! And get this my triptan works again!! yipee! All my family have said i'm a different person, they can't believe what the drug turned me into.I'm also going for counselling to help me deal and cope with stress, excitement and basic emotions because i don't seem to have a middle level just all or nothing. Anyway thought i'd let everyone know of my progress so far. Debbie IP: Logged |
RJ
Member
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posted 21 February 2006 02:48 PM
Hello Everyone -Welcome Emily! Debbie - I am glad to hear you are doing better. That is great news! (: I had a bout of a migraine this weekend, and it made me so crabby.  I am just plain frustrated. I found myself going on strike with the medicine. By Sunday I had a total meltdown, because I can hardly afford these medicines anymore - even with the insurance. Does anyone else ever feel like this? Everytime I have to take another "relief" med, all I can think is "ill" and "dollar signs".... I am sure it is hormones too. The worst part is - I would just start to think the migraine was gone and then, it would come right back. I'd lay down and it'd feel better and then I'd stand up and move and - it'd be right there. However, I feel like if the relief medicine isn't working (and right now I am a little miffed with the Topa), there is no use in putting it in my system. Does anyone else go through this? I was also experiencing a ticking on the left side of my head. I believe - a spasm. Does anyone ever experience spasms on the side of their head? Wondering,
RJ IP: Logged |
LP
Member
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posted 21 February 2006 03:24 PM
RJ, sorry to hear you've been feeling so bad. It sounds like everyone has had a bad time. I had a round of mild headaches last week that wouldn't go away with anything. I went to my neuro. last week and am going to try a new combination. He said there is probably going to be a new medicine approved and coming out that will be about 85mg imitrex and something like Aleve. Something about that combination might seem to help the headaches. Before topa. I used to get great relief with imitrex. Now just partial relief. He wants me to try imitrex with 1 Aleve for my next headache. You might want to talk to your doc and see if that would be an option (also he said the other triptans with an Aleve would do the same). I know for me, the topa has taken care of TONS of my headaches, so I'm left with a few that I'm trying to figure out what they are and how to get rid of them--it seems harder than it used to be. They just linger on. Maybe this week will be better for everybody. IP: Logged |
Princessdinkydi
Member
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posted 21 February 2006 09:22 PM
quote:
Originally posted by RJ:I had a bout of a migraine this weekend, and it made me so crabby. I am just plain frustrated. I found myself going on strike with the medicine. By Sunday I had a total meltdown, because I can hardly afford these medicines anymore - even with the insurance. Does anyone else ever feel like this? Everytime I have to take another "relief" med, all I can think is "ill" and "dollar signs".... I am sure it is hormones too. The worst part is - I would just start to think the migraine was gone and then, it would come right back. I'd lay down and it'd feel better and then I'd stand up and move and - it'd be right there. However, I feel like if the relief medicine isn't working (and right now I am a little miffed with the Topa), there is no use in putting it in my system. Does anyone else go through this? I was also experiencing a ticking on the left side of my head. I believe - a spasm. Does anyone ever experience spasms on the side of their head? Wondering,
RJ [/B]
You're not ganna want to hear what I have to say, but I know you and I'm ganna say it anyway.
Girl you don't have an ounce of quit in you.
Would you just give in and let the meds do the job?? I HATE it when my ENTIRE day is ruined by a Migraine, but you know what?
When I wake up and I know it's a doozie....I just make plans to keep my hinney on the couch.
Doesn't pay to keep poppin the pills....and try to keep the schedule, it's not ganna help, it'll only make it worse. [This message has been edited by Princessdinkydi (edited 21 February 2006).] IP: Logged |
gmaxcook
Member
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posted 21 February 2006 10:14 PM
RJ,
YES...I had the TICKIN in my right ear all night last night. It was wild, at first I thought my heart was palpating a hundred miles an hour. It was just the right side. Its happened a couple times this week. Princess...Sorry, I have to disagree, sometimes we HAVE to keep a schedule. At least I have to. I wish like crazy I could park my hinney (Is that spelled right?) I would, believe me if I could! Someone posted once, asking if/how people still worked with headaches and medications? Thats a good one. I have the answer, you just stumble forward in a half medicated, half dazed, state....and if you are lucky enough to not be totally under the influence of drugs and unlucky enough to have a headache... you stumble forward, shading your eyes against the light, straining to concentrate, and hope the searing pain will at least diminish to a roaring thump before the end of the day. Then the next day, you do the exact same thing again. Rather depressing, huh? Sheila IP: Logged |
cookieb.
unregistered
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posted 22 February 2006 01:17 AM
hi all,
i am new around here, but i have been reading your posts for awhile. i have been taking topomax for two months now, and i am up to 150 as of today. i have had severe migraines since i was a kid. i have tried everything: depakote for years, imitrex, neurontin, etc. i hate the taste of maxalt. frova is pretty good. topomax is working really well for me. i have had a few doozies, but axert and frova have worked pretty well to take the edge off of them. i am hoping to stay at 150-200. my side effects have been pretty minimal. i have had the tingling, some irritability, the flat soda taste, but they have pretty much passed. i am hoping for the weight loss you all are talking about! it's just so helpful to be in a place where other people understand the agony of migraines. i was hoping that after menopause they would cease, but no such luck. fortunately, i am not having the monthly nightmares, but i am still having to deal with certain triggers. what's the deal with alcohol? i don't drink much, but once in awhile i like to have a drink when i go out for dinner. thanks for being here you guys. IP: Logged |
DebbieWest
Member
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posted 22 February 2006 06:12 AM
Hey guess what... how one day can turn your whole life into a living nightmare... my work has just sent me a letter saying they are terminating my contract when it runs out in march. even though i have been signed of by my doctor and have played ball with them and let them have access to my medical records and gone to their occupational health doctor who told me they wouldn't get rid of me!Black hole is swallowing me up again. Debbie [This message has been edited by DebbieWest (edited 22 February 2006).] IP: Logged |
LP
Member
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posted 22 February 2006 08:41 AM
Debbie,
I'm so sorry all of this is happening to you. As we can see looking back on this board, migraines can have some devastating and unfair consequences on our lives. People who haven't been in our shoes do not understand and consider it more of an inability to cope with stress (they like to say we have tension headaches) and if we are women, relate it to being emotional. It makes me so angry the way you are being treated since these headaches are under no control of your own. If our disease were something visible to the human eye, we would be treated more fairly. Here in the US, we have laws that do not allow our work to be terminated due to a disability (although sometimes is does happen). Would an attorney be able to assist you in keeping your job? I can't imagine even what the cost might be. It is just a thought. I will be praying for you that a solution will come and maybe even a better job with a more "human" and compassionate employer. Take care, Lydia IP: Logged |
Shannon
Member
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posted 22 February 2006 12:07 PM
Hey, all. I was overseas for awhile. Let me tell you, 48 hours of straight travel will certainly mess with you you enough to give you a migraine from you-know-where. Then the jet lag that brings--whew! There is not enough meds in my cabinet to help undo the week long headache that came with that.But even so, I have been on 300 mgs for almost 6 months, and I thought it was helping, but it seems now that I am having just as many headaches as before. I feel like I can't leave the house without Imitrex because I still get migraines so often. I'm getting grumpy again. I've now been through all the ups and downs of Topa for a year. I feel like I have been on almost every other preventative and I really, really needed this to work! My neuro mentioned the possibility of going up to 400 mgs but he is pretty hesitant to do that because I have lost so much weight. He said the weight loss will get worse with dose increases and if I go up the weight loss will be worse and I simply can't afford to lose another pound. I guess Topa better than nothing because the headaches are daily with no medication at all. But with a beta blocker or with Topa I still seem to get headaches a few times a week. I am so frustrated. I feel like I am living life in management mode and I cannot live life parked on the couch. I have to function. I don't know if adding Neurontin would help. but I dread the thought of living life with the side effects of medications and constant headaches for years to come. It is literally depressing. I went into the Topamax so hopeful that the headaches would go away for long stretches. I am a really optimistic person and I feel like I have a disability that limits me and I find that unacceptable. I want a solution. I don't want to be a sick, grumpy person. I want to enjoy life and have fun with my kids. Sorry for venting and adding nothing productive. I know you all understand when no one else does. Shannon IP: Logged |
RJ
Member
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posted 22 February 2006 12:28 PM
Debbie -I am sad/upset for you. Is there anything we can help with? Like LP mentioned...How is the UK law/counsel with protecting your rights? In the US we have HPPA. It is an act that protects an individuals privacy. It allows us to relinquish our records/personal information from anyone we disclose it to and exercise our ability to protect ourselves from them discussing them/ discriminating, or retaliating against us. Here is a good site for looking at some privacy issue examples that people have been held accountable for when you feel like it:
http://er.hipaaps.com/examples.html
In the US,if someone violates HPPA then, we contact the EEOC http://www.eeoc.gov/
- and within the state, such as mine, IDOL. If the employer is involved, they are fined (and the government LOVES getting money) and then that sets a precident for a civil suit (Tort) with the employee. Does the UK have anything like this for you in place - where you can relinquish your employers rights to access your files? Does it have anything for you to file discrimination based on disability, if you are terminated?
The first thing that came to my mind when I was reading what you posted this morning was if you ever post here on the board, from work? It sounds like possibly you are being discriminated against?
I am sorry Debbie to hear of any of this. I hope we can be of some support here. Sincerely,
RJ
[This message has been edited by RJ (edited 22 February 2006).] IP: Logged |
LP
Member
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posted 22 February 2006 03:37 PM
I think if we are looking for a cure or a near-cure we will set ourselves up for failure. My neuro. has prepared me well and is upfront with me. He feels that someone who has daily headaches with migraines, who has been through multiple treatments with no longterm success, will have to always deal with certain issues. He feels at the point I am at, I will have side effects from medications. There is no preventative med. to control my headaches that is strong enough that will not have side effects (this was difficult for me to accept). I also have to accept that I will always have migraines, but that we are trying to decrease them. They cannot be totally covered up with a preventative medicine for a long term period. I have accepted that it is ok to have one a week, and if I have something really stressful happening I might have 2. This is much better than a daily headache. I know these 2 things are difficult for us to accept, especially since we all are sick and tired of feeling so crappy and wanting to be normal and take care of our kids. I know I would love to know what it feels like to not have a headache and at the same time not feel medicated. I am learning to appreciate the fact that I now have days when I don't have headaches, and am learning to deal with the side effects of the meds. It is ok with me too when I get a headache, since I have been prepared that I most likely would still get headaches every once in a while. We all need to remember where we came from and know that topamax is not a cure. IP: Logged |
DebbieWest
Member
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posted 22 February 2006 04:28 PM
Thank you everyone who replied to my earlier post. RJ i haven't ever posted from work so they don't know about this site. I have found some good advise and i am going to go to a solicitor (I'm in the UK) as the Disability Discrimination Act now includes migraine. And i was advised today that my work seem to be discriminating against me because of my migraines as i have written evidence that at every monthly reveiw my manager in his own writing has written that i am a hard worker and produce excellent work! Its never enough for them is it?I will let you all know how i get on... i have been crying all day long, now have a headache and my eyes are red raw and stinging! Thank you all so much for looking out for me. x IP: Logged |
Princessdinkydi
Member
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posted 22 February 2006 05:04 PM
Hey guys.
RJ thanks for passin on Ms. Monthly...appreciate it! For whatever reason she decided to come early ....probably because I posted to you...LOLAt any rate, wanted to let you know that Spacey e-mailed to let you all know she's in for surgery and couldn't post due to complications with our server.
Her surgery has nothing to do with her Migraines, but wanted to let everyone know so we can all say a prayer or two for a quick recovery. IP: Logged |
Princessdinkydi
Member
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posted 22 February 2006 05:15 PM
Shelia,My concern for RJ and everyone is that Migraines can lead to strokes if we are not careful. My life has been completely devistated by Migraines. I am sensative to the issue hon. On the weekend there really isn't anything that pressing that needs to be done
IP: Logged |
Princessdinkydi
Member
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posted 22 February 2006 05:20 PM
quote:
Originally posted by DebbieWest:
Hey guess what... how one day can turn your whole life into a living nightmare... my work has just sent me a letter saying they are terminating my contract when it runs out in march. even though i have been signed of by my doctor and have played ball with them and let them have access to my medical records and gone to their occupational health doctor who told me they wouldn't get rid of me!Black hole is swallowing me up again. Debbie [This message has been edited by DebbieWest (edited 22 February 2006).]
Debbie....you sound like you could use someone to relate to.
I got my Migraines from being exposed to sewer gas at my office.
You can guess the rest. IP: Logged |
DebbieWest
Member
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posted 22 February 2006 05:23 PM
Princess did they your employer help you at all? did you ever try and get em for it?IP: Logged |
mlwach
unregistered
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posted 22 February 2006 06:34 PM
I wonder if anybody has ever heard of this. I got off the topomax about three weeks ago due to depression. My doctor wants me to take Wellbutrin because I basically had a meltdown in her office. About a week ago I started feeling lightheaded and I thought it was from the Wellbutrin and I wanted to stop. I phoned the doctor and she says that the lightheadness is not caused by the Wellbutrin but from Topomax withdrawal. Apparently some people experience lightheadness either getting on or getting off. There is no timetable as to when this will go away. Has anybody heard anything like this? The doctor said to drink more water. I already drink 10 glasses a day. HOw much more can I drink? Mary IP: Logged |
Princessdinkydi
Member
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posted 22 February 2006 08:05 PM
Deb:Oh yes, I am not taking this laying down.
My life is He double hockey sticks right now, but I am involved in a major lawsuit right now. I have 3 lawyers and about 10 doctors that work with me. To answer your questions about monitary issues I'd rather you e-mailed me directly. [This message has been edited by Princessdinkydi (edited 22 February 2006).] IP: Logged |
RJ
Member
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posted 22 February 2006 08:36 PM
Princess -I probably did pass her on......I wish I could PASS HER OFF!  Hmmmm - let's see. How could we do that, without creating more havoc? What's a girl to do? You, Princess, and Sheila both have good points. I understand them both. Too bad I was so tired this morning that I thought Debbie wrote Sheila's... Ugh. Sorry Debbie. I edited that. I agree with the stumbling through the day part. I hear you with the sitting on the couch thing too though princess. My daughter is pretty demanding though and there is only one of me and no one else. I am to the point where I am almost scared of taking medicine any more. I'd sure hate to see what my liver really looks like. A rugby maybe?? Anyway - you know....Dooo Da. Can't live like that. LP had a point too, in terms of not setting an expectation that Topa is a "cure". But I don't really want to give up on finding the understanding behind why my body behaves like this. They told Einstein he was a nut. They told Amelia Ehrheart she couldn't fly. I wouldn't let an MD tell me to deal with this and accept this (and god help him if he ever does  ). I'd fire my MD if that came out of his mouth. Sure there should be a point of contention with understanding what your body is going to do. But - I want to understand it a little more. That is the greed in wanting to get better. I feel like it is only healthy for me - and everyone - to once in a while to not feel OK with feeling crappy. It's not all ice cream cones and cabbage patch kids when this pain has got you by the seat of your pants at any given moment. However, - Like I posed to my MD - "what happened in that given moment to alter my body?" If it went one way, it can go the other. There is an answer here. I don't think the key to success here is to stop looking for a cure, in order not to fail, or to be let down. There will be a better answer to it someday - and better management. I do believe that. - RJ IP: Logged | |
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