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Author
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Topic: topomax and irritability
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notanat
unregistered
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posted 18 May 2005 08:31 AM
 
I was doing so well, I havent written in a while, but now I have a question...
has anyone else had the s/e of nystagmus (eye involentaraly moving back and forth)? Ive been on the topa for 5 months or so now, and I just started having this problem about 2 weeks ago. its not all the time, just every so often, but quite anoying. and after months of being relatively headache and s/e free, the headaches have returned (they started back up about three weeks ago) I was feeling so good....and now Im not. I dont have a neuro appt until mid June and the frustration is quickly returning!IP: Logged |
Little Stanley
Member
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posted 19 May 2005 10:22 AM
 
I feel for everyone here, this is my second go at Topo. I was on it for three months headache free the first time. Became scared of all the side effects that everyone has mentioned here plus a few bonus rounds and came off it.
Hey I just can't take the head. The pain out ways the sides. I am back on. I trated back up slowly (the key) went thru the "loom and dooms" again and have to fight the tiredness.
I do find that supplement shakes help with the weight loss if its too much tho.I certainly feel for everyone here. IP: Logged |
RJ
Member
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posted 23 May 2005 04:20 PM
Hi Everyone -I am posting before I am reading - just because I have a few minutes on the fly and Sleepy - I feel bad - cuz last week - I posted the glands for you - mis logged in my password and when I backed up - everything I posted was GONE! UGH! Frustrated. So - I thought I would write quickly the glands that I thought might be aching me. They are as follows:
Lacrimal (above my eyes)
Parotid (around my ears)
Sublingual and Submandibular (around and under my jaw line)
and I am wondering of course if the Pineal might have something to do with photosensitivity and as always.... I believe that the pituitary gland plays a role somehow with my migraines. I asked my doctor if he would just check it out. He is good. He said he would. He didn't snub me. Good doctor. So - they upped my topa. We'll see how it goes.... How is everyone. This time - I am copying this sucker before I hit the "submit" button. Gabbysdad - are you feeling better? Monitor - thanks soooo much for the info. That was more than my doc had shared in terms of being "thorough".... so thank you. No - I do not usually get an Aura. However - I do get a migraine when I ovulate... so I guess I there is more than just the menstrual cycle to it - huh?. more digging to do.... Wonder how everyone is. Hoping sincerely well and better,
RJ
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chappy
Member
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posted 24 May 2005 06:15 PM
Hi Everyone.Just wanted to post that I gave up after almost 10 weeks on topa I am now off of it. It was a hard choice to make but I am feeling so good now except the few headaches I have had. The se' were so hard for me to handle I was too emotionally weird that I couldnt do it any more and I am glad that I am back to my normal self . I went in for a MRI on monday so we will see what comes from that then I guess I will go back to maxalt when I get a migraine since I am so sensitive to meds I get so many se' . Anyway good luck to everyone I will keep checking back with you guys. Thanks for your support during "Topa" days  IP: Logged |
melissamarie
Member
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posted 24 May 2005 09:27 PM
I will start Topomax this evening and the dosage will slowly increase over the next month to see howit goes. As with all my meds, I research to death. I have chronic fibromyalgia/myofacia pain. I had it in the mild form for a long time until it became progressively worse over a two year period. Of course depression went into full blown episodes. I have been on more medications than I can recall. I keep my own medication journal, which I have done for years noting th side effects which made me stop the med incase someone tries to give it another go. I am closely involved with a Rheumotologist who specializes in Fibro and a few months ago, at a loss and limit to how much he could do for the pain, referred me to a pain management clinic associated with a Large regional hospital. They basically took me off ALL the medications I was on. apparently many were increasing the pain due to how the reacted in the body. They allowed me to keep the percocet initially but are slowly dropping that down with the use of Marinol which I take daily. I don't take the initial recommended daily dose to prevent additional fatigue. Big problem fatigue. At night I take the marinol, ativan and Zanaflex, now the new medication. The clinic is attempting to work with the medications that go into my body, and research areas of impact and try to only prescribe what is needed without stepping on another medications toes. Over the last 2.5 years, the old medications were big on weight gain. I put on over 50 lbs, so they make sure that weight gaining is not a concern with my medications. I have read many concerns with Topomax and many are positive. At this point in my life, I am willing to try anything that will help because it beats the alternative. At least the Marinol has softened the contiued detoxing of my body. I was told that it would take anywhere from 4-6 months to clear everything that has been put in my system for the last ten years to get out and for the body to know that there is no replacement. So, I wait and hope. I doubt the fibro pain will just vanish, but supposedly the amount of ibuprofin (up to 3600mgs daily), percocet, prozac, etc, has only made symptoms worse. I guess we will see how it goes. I'm hoping that the Topomax will address the pain, so I can get completely off the percocet, but a day without pain would be a GREAT day.
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LP
Member
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posted 24 May 2005 09:28 PM
Hi everyone, I have spent the last couple of weeks reading all of your messages. I have had migraines since I was a child. I am now 40. I have almost daily headaches. I went to a neuro. a month ago since I was having minimal relief with Amytrip. and neurontin. I use imitrex for relief. I have taken many over the counter meds for years. My doctor put me on Topomax and I was on it for just 2 weeks. I felt I didn't want to feel that way and it seemed that the side effects might never go away. I didn't feel well and had word-loss problems. You all seem to struggle constantly and I am now wondering if I should start it up again. I went to the doctor today and he mostly said that everything would sedate me. He has now put me on a muscle relaxant with the amytriptiline. I have some questions that I hope somebody can help with: 1) Should I try the topomax without the amytrip. (my doctor didn't want to take everything away). would this help decrease the sedation. 2) Do the side effects go away at some point? I had no relief of headaches at 25 mg for 1 week and 50 mg for 1 week. 3) Will I always have that non-specific sick feeling? 4) Any other suggestions that would help. I'm considering going to another doctor. My doctor says that the Topomax might have been the only thing to help. I don't know what to do. I don't want to replace one problem (headaches) with another (feeling unwell). I would appreciate any help that any of you could offer. I am quite frustrated today and am at a loss. Thanks, LPIP: Logged |
auntchel
Member
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posted 25 May 2005 12:30 AM
Good luck, Chappy. I gave up, too. I am enjoying the mental clarity that I've regained, but I am still having some horomone-related headaches. I am trying very hard not to take meds so that I don't get back into the rebound headache cycle. Hope it works out good for you! IP: Logged |
RJ
Member
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posted 25 May 2005 05:11 PM
Welcome LP and Melissamarie! You have come to the right place to unload and ask questions.... also to share your experiences. We seem to really learn a lot from eachother here. I have learned a TON from others. Many of these people have no idea what they have done for me on a bad day. Notanat - yes my eye gets twitchy sometimes. Always though, concurrent with the Migraine. The nuero, on Mon said he thinks mine is stress related from the headaches and enduring the pain too long....not taking my back up med (zomig...lets talk about something that tastes a little bit icky - the spray). I don't know how I feel about that answer - but I thought I'd share it with you. (I didn't read any posts before I posted last time or I'd have answered). Little Stanely - did you feel better coming back up (titrating) this time around? I noticed the second time I went back on was easier. Less SE's. I feel I am doing so much better this time. I have a few SE's but they are minimal in comparison to the bennefits. I did have a UTI earlier this month that I suspect to be from this med.
1. - Because I have never had one and nothing really changed except my dosage a week prior - and 2. Becuase the amount of RBC (14,750 -and NO - you are not reading that wrong... yea lets talk about being nervous to see blood at the wrong time from the wrong place and WBC of >75! ). Has anyone else had this happen since being on this med? My doctor thought it may have been a kidney stone, but the x-ray - says - NO. If I had one - it's gone now. Whew! I have been slacking on the water because I have been feeling SO GOOD. Not even parched anymore....That'll teach me though. I am all good though now. No complaints - and no headaches. Overall though, I truly believe that this med is for me, for the time being and has been worth waiting out. It has been close to 8 months on this round, so I can understand the commitment and empathize with those that didn't feel good on it. I was there and I did give up once before - due to SE's and asthma complications. For now though- I am down to less than 4 headaches a month. Used to get clobbered with 14 + days in a row...couldn't stand or sit without barfing in those days. This is worth the trade for now. Chappy and Auntchel - it's good to hear that you are feeling better off the med than on. Only you know what is best for YOU. Not every med - is for every one. Good for you for listening to your bodies. Takes a strong person to know when to listen to themselves over the Dr. For certain! I hope that you can kick the hormone headaches Auntchel! Chappy - I think your strong for sticking it out for that long and not feeling good about it anyway. I hope that you both feel better. Don't be strangers. Gabbysdad - JustPlainSleepy....How are you? RJ IP: Logged |
gabbysdad
Member
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posted 25 May 2005 08:10 PM
RJ & all- doing well here in Michigan. No headaches in nearly a month. I have been off topamax for about a month and no headaches, but I have gained back some weight, so I decided to go back to 100 mg a day and see what it does. It did reduce my appetite, but it has made me very edgy and angry, somewhat moody and sleepy. I will stay on until my appointment with the neuro, but I am dang glad of no headaches! IP: Logged |
Little Stanley
Member
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posted 26 May 2005 12:34 AM
RJ..
I am glad to hear your second go around is better. Believe it or not mine is not. I am just now back to 150mg daily where I was and I am struggling with many s/e's that seem to linger longer than before. I am trying to be patient. My speech and thought has got the topa funk and of course I feel much more tired than last time. However, I just simply can't go back to my head. I truly have no choice.
For everyone else that has rid themselves and are "DOIN IT" god bless you and my prayers are with you.IP: Logged |
Little Stanley
Member
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posted 26 May 2005 12:50 AM
MELISSAMARIE,
welcome and good luck.LP,
As you have read. Some of the keys to this drug are Titrating (raising your levels)up slowly and not too fast. Some of the side effects like depression, forgetfullness, kinda, loom/doom/disoriented feeling you have are all normal stuff. This med is crazy stuff. These things mainly hit at dose increases and may go away sometimes and sometimes they linger and thats why you see many people jumping ship here.
And you can't blame anyone !!!
You really must weigh the bennys.
Does it take away the pain?? And if it does is it worth living with whatever side effect(s) decided to replace it!
I am sorry to sound to sorta pessy but it is sorta hopeful...sorta???? kinda??HHMMM?? IP: Logged |
auntchel
Member
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posted 28 May 2005 01:15 AM
RJ- You are truly a ray of sunshine. I was feeling blah today, and decided to check in to see what was up. Thanks for the encouragement, and I will keep reading and occasionally putting in my 2 cents worth. Thanks again!
And to all, good luck and here's to a headache free holiday weekend (except possibly a hangover, gabbysdad?) IP: Logged |
Shannon
Member
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posted 28 May 2005 07:07 PM
Hello, All. It has been awhile since it I have posted. I have just been in a waiting game. My doc had me going up sooo slowly. I started at 25 mgs in March and just bumped up to 100 mgs this week. I sat at 25 for a month, than 50 for a month, then 75 for a month. I am still having awful headaches so I have had a hard time being patient with the long wait, but I must say, after the initial awful side effects, each bump was milder than the last. I didn't even notice the bump up to 100 at all. I think the extremely slow approach really helped. The speech problems and confusion have cleared up all together. (Do still have quite a bit of weight loss though, even with returned appetite.) Doc says most people's headaches are helped at about 100 mgs, so I am hopeful. I really need headache relief now. Not sure what I will do if this doesn't work. I am sorry to hear it hasn't worked for some of you. I hope you find what works for you. Best of luck.IP: Logged |
*World Headache Alliance*
Member
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posted 29 May 2005 10:01 AM
Dear Worried and Alone,
I am so sorry. You might begin by showing your posting to your wife. It might help her realize how concerned and worried you are. Whether or not it is the topamax causing the shift in personality, she needs to get help - not only for her own well-being, but for you and your kids. Personality change is a potential side effect of topamax so it would definitely be worthwhile for her to talk to her doctor and perhaps try another medication. Maybe her friends and family could also talk to her and let her know everyone's concerned.You can read more about the potential side effects by reading this article: http://www.w-h-a.org/wha2/Newsite/resultsnav.asp?idContentNews=866. Please stay in touch and let us know how you're both coping. Good luck.
-WHA IP: Logged |
Worried Husband
Member
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posted 29 May 2005 11:26 AM
Thanks[This message has been edited by Worried Husband (edited 29 May 2005).] IP: Logged |
betterela
unregistered
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posted 31 May 2005 06:16 AM
Hello,
I'm a Topamax user for over a year. I have long suffered the "freezing cold" side effects, I shiver all the time and layer my clothes, it's so ridiculous.
But lately, having raised my milligrams slightly, I'm also experiencing the exact opposite. I'm heating up. Almost feverish, without the fever, but to where I'm just too hot. Then.....back to cold. Such extremes. Anyone else?
Thanks.IP: Logged |
gabbysdad
Member
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posted 02 June 2005 01:55 PM
quote:
Originally posted by auntchel:
And to all, good luck and here's to a headache free holiday weekend (except possibly a hangover, gabbysdad?)
Hey, no hangovers here! I only drink about 3 to 5 beers at a time before I get tired. By the way all, I have not had a single headache in over 1 1/2 months. I have been back on topamax for about 2 weeks, only on 100 mg a day, so that's not what's keeping them away. And I really haven't changed anything in my lifestyle. Food, sleep, work, etc. Actually, stress at work is higher, sleep is less, and I am eating worse and drinking more beer. So I have no idea what is keeping the headaches away. But whatever it is, it's working. I will keep you all updated. I go to see the neuro on Tuesday, but nothing really that she could tell me. I was supposed to have a full blood workup, but I lost the paperwork and forgot to go in before my appointment, so hope she is not mad.
IP: Logged |
Shannon
Member
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posted 02 June 2005 10:05 PM
Betterela,
Is being cold a side effect? I have never heard that! I live in Phoenix, of all places, where it is stinking hot and I am freezing all the time. I actually wear a sweater inside if the AC is on. I thought maybe it was due to the extreme weight loss or something. Never heard this mentioned anywhere. Is this common? Anyone else?IP: Logged |
RJ
Member
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posted 03 June 2005 12:34 AM
Shannon -Yes! It is. I was freezing for the first three months and I still become cold very easily. My heating pad is my best friend at night when I get cold. I push it down by my feet and it seems to help out once they warm up. Gabbysdad - I am glad you are feeling so good. That is hopeful for the rest of us! Chappy - I am glad that I made you smile. I was having a trying day when I read your post, so you actually made me smile back. Just-Plain-Sleepy....where are you? I hope all is well! To the rest of you the same ofcourse. Take Care,
RJ IP: Logged |
betterela
unregistered
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posted 03 June 2005 01:24 AM
Shannon,
I had to laugh reading your post because I visited Arizona last year, and I was FREEZING with all that air conditioning going on! (Where I live in CA, we don't even own one.) I had my sweatshirt on AND sweater.
I'm not sure if it's the Topamax alone or the medication plus the weightloss that causes the 'cold'. I lost weight I didn't need to lose and then some. I am tired of being accused of having an eating disorder.
This medication has helped so much, but I could use the weight back. IP: Logged |
just_plain_sleepy
Member
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posted 06 June 2005 10:23 AM
Good morning to all!Hey RJ - I've been around...extremely busy with work. I try to check in every so often, but I haven't been around for a while. I'm up to 200 mgs of Topa a day and down to about 4-5 headaches a month. The good news is most of them go away within 20-30 minutes after I take Relpax. Unfortunately, I still get a couple of migraines a month that take me down for a few days. I've noticed the last two have coincided with bad weather (severe thunder storms). Coincidence? All in all, I can't really complain. The only SE I still experience is loss of appetite. I have lost 30 lbs to date, which would probably be more if I only ate when I was hungry - but I didn't have the energy to do anything!! Oh yeah, I am still tired most of the time, but not to the extreme of when I first started taking Topa. ETA - I forgot one other SE....carbonated drinks = YUCK!!!! I've been on Topa for months now and they still taste flat and weird. I guess that isn't necessarily a bad thing. Happy Monday!
Sleepy [This message has been edited by just_plain_sleepy (edited 07 June 2005).] IP: Logged |
Shannon
Member
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posted 06 June 2005 05:16 PM
Betterela,
You made me laugh out loud. I am a total twig in a sweatshirt! I know I look like a dork, since it is about a million degrees outside, but you are so right about the AC blowing everywhere! I have no more weight to lose! I had someone come up to me recently and whisper "Are you sick?" I am not sure if she thought I had anorexia or cancer or what. I whispered back, "No, are you?" The only nice thing about the weight loss is the freedom to eat whatever I want on the dessert menu--if only I wanted to! Sigh. I just have to stay on this when I hear people say it has reduced their headaches. I am at 100 with no relief. I have been at this dose for two weeks. I am anxious to bump up and try to find the dose that will help. I think it will be worth it. (I hope?) Until then I will just enjoy my heating pad (thanks, RJ) and sweater and drink some milkshakes. Thanks for the laugh! IP: Logged |
auntchel
Member
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posted 07 June 2005 08:29 PM
Hey, all. I stumbled across a very interesting article about a new treatment for some migraines.
RJ, it made me think about the study you are doing on glands. Here is an excerpt: "In the January 2005 issue of Plastic and Reconstructive Surgery, a study found that patients can be injected with Botox to determine which muscles in their forehead or back of their head triggered their migraines. Once the muscles are pinpointed, they can be surgically removed. The surgery eliminated migraines in 35 percent of the patients and reduced the frequency, intensity or duration of migraines in 92 percent." I am going to try to paste the website:
http://scc.healthcentral.com/bcp/main.asp?ap=442&brand=35
Scroll down, it is listed under the heading:
"HealthScout Top Stories" and is called " Migraine Pain Might Signal Deeper Problems" [This message has been edited by auntchel (edited 07 June 2005).] [This message has been edited by auntchel (edited 07 June 2005).] IP: Logged |
gabbysdad
Member
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posted 08 June 2005 01:15 AM
Hey all, just wanted to give an update.
Had a blood test last week, before my second neuro appointment. My liver counts were up, so the doc told me to wean off the topamax. It can cause liver problems apparently. So one more week of 100 mg of topa, then no more and we will see how I do. On the other hand, I have had no headaches since the end of April 2005, so the neuro wants to see me back in 3 months if I have another headache, but if not, I don't have to come back. So I may drop back in every once in a while.
RJ / Auntchel / Just plain sleepy/ and everyone else, take care! gabbysdad (Ric) - dang it's hot in Michigan! IP: Logged |
JenS
unregistered
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posted 09 June 2005 06:01 AM
Alan--
You wrote a while back about taking topomax and becoming extremely irriatable and moody, and moods coming out of you that you never knew existed. I can not tell you how much this rang true for me. The exact same thing happened to me while raising my level of topomax about 8 months ago. It was the same thing as you said-- my friends, and especially family (or even strangers!)--really anyone I would come in contact with would become the victim of my rage. It still happens sometimes actually (I'm on 180 mg of Topomax now). I hate it, it's not me. Especially with family and strangers... because with both you know there aren't as much consequences (at least that's how it is for me-- with friends, I need to at least be nicer to keep them around!) It's terrible. The drug really messes with my heart rate, my frustration levels. I've never been a really highly-tempered person. Of course, everyone has the capability of getting frustrated or angry, but not at the level or frequency that it happens now-- and especially at the level at which it happened when I first started the meds. At that point, it was just a few weeks into starting the Topomax, and I was going up fast, probably too fast. I too was borderline violent. I disgusted myself. It made me really lose respect for myself. I'm still going through a process of gaining that back now... like you said, Alan... of going back into therapy to regain that sense of self-respect. I live with my mom and step-dad, and at the time, I wanted to hurt my mom. Wow. Because she couldn't help me, she couldn't make my situation better, she couldn't make my seizures stop... but I wasn't rational at the same time-- the topomax was ****ing with my brain, confusing me, which made me feel more out of control and even more like being violent. I had never felt that way before.Anyway, I want to tell anyone reading that I understand-- to anyone who ever feels this way on this drug, or severely frustrated or angry... I still do often and have to remind myself IT'S JUST THE DRUG. I believed it was really the life situation around me-- or my mom, or whoevever, that was the problem...
Obviously there can be real issues going on with these people, but the drug magnifies everything so that it appears much huger and complex and confusing in our brains. (At least that's what it does in mine.) Anyway, hope that helps at all. Best. IP: Logged | |
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