Aa
topamax help
Hello I was decompressed 2/2010 with complete success expect head aches witch I have since figured out are due to stress my nero put me on topamax for the headaches the topamax has changed me so much it has completely ruined my life..... i need to no the fastest way to safely wean myself off this crap I have completely lost my mind with it im only on 25mg in the am and 50 at night this stuff has made me insane I have dropped 40 pounds I do not eat or sleep i have chased the love of my life right out the door and im about to loose my job to i would rather have a bullet in my head than this (no im not going to kill myself) My Dr told me to taper over 3 weeks I cant live like this for 3 more weeks... any advice would be great.. HELP!!!!!
COMMUNITY LEADER
I am so glad u figured out what was causing the issue for u, and meds do affect each of us differently.....I could not take more then 12.5 mg of it a day.....it is a very low dose, but I do see a difference when I do not have it.....
it took a good month before i started having any noticable problems with this med and i was only on 25 twice aday till 3 weeks ago then only 25 in am and 50 in pm im not saying you, will but there was 3 of us at my work the other night talking about this, that had been on it and all of us had the same problems with it, to different degrees so becareful with it dont hesitate to speak up if youstart having weird issues while on it dont let go on so long like i did LOL
thats pretty much how they told me to do it and just the 3 days of cutting out that extra 25 im a lot better read my long post at the bottom this is a scary med I have never been one to tolerate any meds anyway but to have the dr who prscribed it not listen to me is scary to......
I started the topamax in april due to new onset headaches my surgery was a complete sucess actually i never had headaches before my surgery (surprise suprise) as I said they were due to stress I had surgery because I had vertigo so bad I was vomiting in my sleep and my entire left side was numb...
I am a nurse I know what topamax is really for LOL just lowering it by the 25 at night for 3 days is helping Im super sensitive to all meds anyways but this med is BAD news and my nero told me 3 times it wasnt the problem im mad as hell I went from a normal person to one who is terrified of my own shadow, obessive compuslive,plagued by non stop panic attacks, tremors so bad i couldnt write, mood swings the list goes on and on....I have lost 40 pounds since the middle of july.... Its like a monster has been turned loose in my head and it is scary as hell....
I now have 3 new doctors a counslor and now they was me to go to a shrink (I cant spell LOL) to write scripts for more meds to calm me down... this is insane!!!!!!
What it took to figure out what the problem is was i got talking to a friend of mine at work who is a brand new NP and she was on this crap she to went nuts and had thoughts of harming her husband so we sat down and did a time line of when my crazyness started (I also have a lot of things going on in my life that are out of my control that helped pushed me to the edge) and figured out and sure as **** each time i upped my dose i got alittle crazier but the reason my drs didnt think it was the meds was because of the other things i had going on (Long story short i was stalked for 2 months and assaulted and no one believed me i was being stalked till she attacked me) add the med problem to that and its surpising im even able to write this LOL yeah reading this it sounds like a bunch of nonsense but its a sad true story..... So i would rather have the dam headaches back and be ME again and im not going back to the doctors unless im dying ever again i give up on them THE END !!!!!!!!!!!!!!
I am a nurse I know what topamax is really for LOL just lowering it by the 25 at night for 3 days is helping Im super sensitive to all meds anyways but this med is BAD news and my nero told me 3 times it wasnt the problem im mad as hell I went from a normal person to one who is terrified of my own shadow, obessive compuslive,plagued by non stop panic attacks, tremors so bad i couldnt write, mood swings the list goes on and on....I have lost 40 pounds since the middle of july.... Its like a monster has been turned loose in my head and it is scary as hell....
I now have 3 new doctors a counslor and now they was me to go to a shrink (I cant spell LOL) to write scripts for more meds to calm me down... this is insane!!!!!!
What it took to figure out what the problem is was i got talking to a friend of mine at work who is a brand new NP and she was on this crap she to went nuts and had thoughts of harming her husband so we sat down and did a time line of when my crazyness started (I also have a lot of things going on in my life that are out of my control that helped pushed me to the edge) and figured out and sure as **** each time i upped my dose i got alittle crazier but the reason my drs didnt think it was the meds was because of the other things i had going on (Long story short i was stalked for 2 months and assaulted and no one believed me i was being stalked till she attacked me) add the med problem to that and its surpising im even able to write this LOL yeah reading this it sounds like a bunch of nonsense but its a sad true story..... So i would rather have the dam headaches back and be ME again and im not going back to the doctors unless im dying ever again i give up on them THE END !!!!!!!!!!!!!!
COMMUNITY LEADER
I really feel that the Chiari is always symptomatic when it is congenital, it is just that we r so use to how we feel we consider it "normal" until it spikes or flares up with multiple symptoms at once...Chiari symptoms cycle and the Drs never connect them...and they did not have MRI's to use to dx back when I was a child or even in High School....so, bcuz as we get older and have more stressors to aggravate it so we go for answers and they think it only started....nope.
Well HA's can be caused by so many diff things...and just the trauma of the surgery itself and the healing process as there was swelling....
But continued HA's it could be allergies, or a post op related condition...I really feel all HA's have a root cause....just like I feel reflux has a root reason for it and just taking meds is like a band aid and hides or covers up the issue....I do not like to accept meds to reduce pain when they do not know y I have the pain and by that I mean rest on the fact this is all I need to do, I know I need to find y I have the pain....not just reduce it.....
I feel like I am rambling...sorry if this does not make sense....
@ Selma - u r so true that each one of us is so very different.
I've suffered from headaches since as far back as I can remember. I remember them being really bad between elementary school and junior high, when I got Mono. My mom says that I complained of them even before then.
My NS says that my Chiari could have been asymptamatic prior to me developing Mono and became symptomatic at that point. But there is no way for him to tell. Like u I have been diagnosed with all sorts of things regarding my headaches. Migraines, chronic everyday headache syndrome (What the fageebees is that??), tension headaches, stress related headaches, and the list goes on. It's funny that all of these 'diagnosis' and never one MRI...makes me wonder why one was never done, if for no other reason as to 'just make sure'. I have always told the drs that my headaches feel like my brain is too small for my skull...funny that is kinda what it is...
Fortunately for me there seems to be no other issues besides the Chiari. Yes, I get migraines, but like u said, what is really a migraine?? But a really big headache...
My Chiari surgery has definitely been a success (in my opinion anyway) as I have seen a huge improvement in my headaches (less frequency and whentheycome less painful) as well as my neck and shoulders and surprisingly my lower back pain...though ithinkthat may be also attributed to the weight I have lost (over 40 lbs) since the surgery. I wasn't an obese person but I was definitely heavier than I should have been. That could have been a cause of the lower back pain as well.
I've suffered from headaches since as far back as I can remember. I remember them being really bad between elementary school and junior high, when I got Mono. My mom says that I complained of them even before then.
My NS says that my Chiari could have been asymptamatic prior to me developing Mono and became symptomatic at that point. But there is no way for him to tell. Like u I have been diagnosed with all sorts of things regarding my headaches. Migraines, chronic everyday headache syndrome (What the fageebees is that??), tension headaches, stress related headaches, and the list goes on. It's funny that all of these 'diagnosis' and never one MRI...makes me wonder why one was never done, if for no other reason as to 'just make sure'. I have always told the drs that my headaches feel like my brain is too small for my skull...funny that is kinda what it is...
Fortunately for me there seems to be no other issues besides the Chiari. Yes, I get migraines, but like u said, what is really a migraine?? But a really big headache...
My Chiari surgery has definitely been a success (in my opinion anyway) as I have seen a huge improvement in my headaches (less frequency and whentheycome less painful) as well as my neck and shoulders and surprisingly my lower back pain...though ithinkthat may be also attributed to the weight I have lost (over 40 lbs) since the surgery. I wasn't an obese person but I was definitely heavier than I should have been. That could have been a cause of the lower back pain as well.
I recommend that you listen to your Dr. because I am sure that there is a very good reason to wean off the topamax. I just want to share I was taking 25 mg twice a day for a week and was very mood and really sick I then got a very bad back spasm I went on and read the side effect and muscle spasms was one of the rarer side effect so I just quit them cold turkey because I figured it was hurting more than it was helping. I felt better with in 2 days. I'm just telling you my experience. Please don't think that I'm advising that you do the same as I don't want you to get ill.
COMMUNITY LEADER
Well first, we can not compare as I do have other related issues so I continue to have some symptoms...I have EDS which can cause HA's especially with the instability of the cervio cranial junction...I also have tethered cord which is still pulling down on my brain stem, and I have bulging disks in an area of stinosis which can also lead to a CSF obstruction....so, I was told the TOPAMAX will help change the type of HA's and at first I seemed to have more then I was having as I adjusted to the med as that is something in itself....but once I adjusted it did change my HA's I still get them but with out the med they r far worse.
The surgery is to restore CSF flow and slow progression of the condition.,...for some it also relieves symptoms...for others with related issues it only helps some of them and it is still 100% better then I was b4...and I continually get stronger each yr out from surgery...which is good cuz I am looking at a few more....
It really depends on what else u have going on...for so many that r on meds post op they had set backs and r finding out what related issues they have post op....I really feel if they knew pre op it would have made a diff....
I expected to have issues post op as I was prepared by my Drs....this is y I am not allowed to drive etc...they feel if I have to turn my head to look for traffic to quickly bcuz of the disk and the stinosis I could have a block of CSF and a drop attack while driving...so until that can be fixed....I am not allowed to drive....as I say, we r all diff as to what is going on....my ER visit is still open ended as to what caused me all that pain in July and Aug....it could have been the TCS or the EDS...or something new???
Right now the only rx med I am on is the Topamax...and once I ran out and I was feeling really bad, I did not realize just how much this low dosage helps me, now I do....
Chiari surgery can also cause those pressure HA's in some...as some people develop ICP post op, it is the way their body responded to the surgery....sometimes it is bcuz they had EDS and did not know, and sometimes EDS is not a factor...
Having surgery is a risk, like Forrest Gump said it is like a ""box of Chocolates u don't know what u r going to get"....and that part of what he said can be said to explain ne major surgery not just chiari surgery....
If u r having HA issues, I would look into all related conditions to see if they could be the reason...I hate pain meds bcuz u do not feel new pain when on them and no way to know if u r getting worse, so I do not like taking pain meds for ne length of time....TOPAMAX is not a pain med, it just changes the type of HA I get...sometimes I can handle them with out taking nething, some days I have to take Ibuprofens....
U may be one of us that gets migraines...but what is a migraine, but a constant HA...and I get those and was dx'd with those when in High school....would I stop and accept that dx....nope.
Hope this helps
Selma, can I ask u a question? R u on Topomax for migraines?
The reason I ask is this: I am taking Depakote (another anti-convulsant and the third I've been on and feel it has worked best for me) and have been taking it for probably about 6 months or so prior to my surgery. My goal with surgery was to decrease medications in regards to my headaches. I've been successful as far as pain meds go so that's a plus. I was wondering whether the Depakote is something I will ever be rid of? I asked my NS about it and he suggested speaking to my Neurologist since she is the prescribing dr on those meds. He suggested to follow up with her 3-6 months post op(which reminds me I need to call and schedule an appointment with her-lol) and discuss the Depakote. Here is my concern, Depakote was used for my Migraines (as needed Migraine medicine like Imitrex, etc make me horribly sick and I feel worse than just having the migraine) as a preventative measure, however my Chiari surgery was to fix the 'pressure' type headaches I was getting due to the amount of pressure from the Chiari and also to allow for the proper flow of fluid, right? So do they go hand in hand? I'm so confused now...would having the decompression surgery relieve the migraines or is that something different? I know my different types of headaches (migraine, sinus, tension, pressure, etc) and I know what works best for each of them as well. But I now worry that going off the Depakote might throw me back into the 'migraine cycle'. Especially after hearing that many post decompression surgery peeps are still on what I see as preventative meds. Any suggestions for me, Selma? I'm curious to get ur input, ur so knowledgable always!
Thanks a bunch and sorry I just rambled my head off!!
~Jen~
The reason I ask is this: I am taking Depakote (another anti-convulsant and the third I've been on and feel it has worked best for me) and have been taking it for probably about 6 months or so prior to my surgery. My goal with surgery was to decrease medications in regards to my headaches. I've been successful as far as pain meds go so that's a plus. I was wondering whether the Depakote is something I will ever be rid of? I asked my NS about it and he suggested speaking to my Neurologist since she is the prescribing dr on those meds. He suggested to follow up with her 3-6 months post op(which reminds me I need to call and schedule an appointment with her-lol) and discuss the Depakote. Here is my concern, Depakote was used for my Migraines (as needed Migraine medicine like Imitrex, etc make me horribly sick and I feel worse than just having the migraine) as a preventative measure, however my Chiari surgery was to fix the 'pressure' type headaches I was getting due to the amount of pressure from the Chiari and also to allow for the proper flow of fluid, right? So do they go hand in hand? I'm so confused now...would having the decompression surgery relieve the migraines or is that something different? I know my different types of headaches (migraine, sinus, tension, pressure, etc) and I know what works best for each of them as well. But I now worry that going off the Depakote might throw me back into the 'migraine cycle'. Especially after hearing that many post decompression surgery peeps are still on what I see as preventative meds. Any suggestions for me, Selma? I'm curious to get ur input, ur so knowledgable always!
Thanks a bunch and sorry I just rambled my head off!!
~Jen~
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
I am so sorry u r having this issue as a result of this med, I too take TOPAMAX...however I am on an even lower dose then u r....the reason is my dr started me on a low dose and when we tried to go up, I had issues, and we went back down and this is where I am ok....it could be that it is too much...I only take 12.5 mg b4 bed, and I ran out and thought it may not make an difference, but it did I felt awful until I got back on them.....
I understand the weight loss, I did not have this issue with the med, although I hoped I would lose some....I also am aware this med can have many side effects and we r all diff as to how we respond to it.....
But as u cut back u may find a place where it works for u....just a thought.
I would not advise stopping too quickly as I learned from running out, this med even on a very low dose can and will affect u when u do not take it.....
If u have sick time at work or vacation time take it as u step off this med to help keep ur position.....
I am not sure if u used all ur FMLA quota if u r eligible....but something to look into as it can save ur job.
I sure wish I could be more helpful besides the fact that I am only two weeks into topamax and the only side effects I have are tiredness and everything I eat tastes werid. I have only lost 6 lbs - I'm not sure if more is to come off. What kinda symptoms do you have?!
Ok I noticed a typo...sorry!!!
When I was talking about weaning in a 12 day schedule it was a one pill reduction every 4 days not 5...sorry for the OOOPS!
When I was talking about weaning in a 12 day schedule it was a one pill reduction every 4 days not 5...sorry for the OOOPS!
Topomax is in a class of drugs called anti-convulsants. The original use of Topomax is for preventing seizures, mainly in Epileptic patients.
However, it has been use with much success for preventing migraines(in much lower doses as u r on). The side effects are great an unfortunately many. One serious side effect is glaucoma in the eyes (I had a friend who got this and literally lost her eye site for a short period of time). I was on Topomax pre-decompression surgery but my friend called me an told me about her eye issues and I quickly stopped it! To me my site was more important than having a headache.
Ur side effects are all common with Topomax, not that that makes u feel any better. I'm sorry for the grief and agony it has caused u. I understand how u feel, sometimes meds just don't work for us!!!
I have a few questions, have u been in Topomax since the surgery in 2010? if Sony is important to wean urself off of it. Even though u r not on it for seizures, stopping it cold turkey can cause seizures. Did ur doctor suggest a weaning schedule? I have weaned off of anti-convulsants before and 3 weeks sounds about right, maybe a bit long but not to where it is completely off base.
Reduce ur pill by one a day for a week and continue that until u aren't taking them anymore. I have done this over a period of like 12 days under direction from my Neurologist. One pill reduction every 5 days. Usually they will recommend eliminating the night pill first (it sounds like u take 2 at night and 1 in the AM? Is that right?) then the second night pill then finally the AM pill.
I know it sounds like too much but it is very important to wean off of medications u have been on for so long (if u have) especially anti-convulsants!
Fortunately, Topomax has a relatively short half life (19-24 hours) so within 2 days the drug is virtually out of ur system...
I know I just babbled away and I'm sorry to go on and on.
I hope this helped and if u have any questions just ask or u can private message me through here as well.
HUGZ and I hope u r doing much better soon!!
~JEN~
However, it has been use with much success for preventing migraines(in much lower doses as u r on). The side effects are great an unfortunately many. One serious side effect is glaucoma in the eyes (I had a friend who got this and literally lost her eye site for a short period of time). I was on Topomax pre-decompression surgery but my friend called me an told me about her eye issues and I quickly stopped it! To me my site was more important than having a headache.
Ur side effects are all common with Topomax, not that that makes u feel any better. I'm sorry for the grief and agony it has caused u. I understand how u feel, sometimes meds just don't work for us!!!
I have a few questions, have u been in Topomax since the surgery in 2010? if Sony is important to wean urself off of it. Even though u r not on it for seizures, stopping it cold turkey can cause seizures. Did ur doctor suggest a weaning schedule? I have weaned off of anti-convulsants before and 3 weeks sounds about right, maybe a bit long but not to where it is completely off base.
Reduce ur pill by one a day for a week and continue that until u aren't taking them anymore. I have done this over a period of like 12 days under direction from my Neurologist. One pill reduction every 5 days. Usually they will recommend eliminating the night pill first (it sounds like u take 2 at night and 1 in the AM? Is that right?) then the second night pill then finally the AM pill.
I know it sounds like too much but it is very important to wean off of medications u have been on for so long (if u have) especially anti-convulsants!
Fortunately, Topomax has a relatively short half life (19-24 hours) so within 2 days the drug is virtually out of ur system...
I know I just babbled away and I'm sorry to go on and on.
I hope this helped and if u have any questions just ask or u can private message me through here as well.
HUGZ and I hope u r doing much better soon!!
~JEN~
Have an Answer?
You are reading content posted in the Chiari Malformation Community
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
