when your doctor tells you to stop meds cold turkey

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

G

girlwithadog

New
Messages
188
Reaction score
0
Points
0
Another " I hate my meds post"
But my neuro S U C K S !
I'm on 100mgs of topamax 2x daily and have been 3weeks I was taken off 1000mg of keppra 2x daily because of kepprage and put of topamax. Since starting tops.ax I had my first drop seizure in 2.5 years (but likely due to low blood pressure I will get into shortly), I have lost close to 30 pounds now in less than 25 days, I am constantly lightheaded, mood swings galore, confusion, the annoying tingles and as of the last four days I have been experiencing chest pain.

Last Friday when I had the seizure I called my doctors office with the concern. I also posted on here. It took them until Wednesday before they could finally get back to me and instead of lowering my dose like I asked (I felt way too medicated), he tried to double the dose and when I refused he insisted I start taking 500mg of keppra again. I did not so I am still on only 100mg of topamax only but am also supposed to be on the keppra. So once the chest pain started I called my neuro office today upset that I'm still on the topamax. He told me since starting he would take me off and I have tried three times to be taken off and he wouldn't so today I told them "he needs to take me off the topamax already, now I'm having chest pain on top of everything else, and he said he would look into this being a blood pressure issue last year and nothing has been done about it yet!" I asked for a second opinion and now I'm getting attitude.

I'm being sent out of state for my second opinion, they know my license I suspended because of last weeks seizure. Either way, last weeks seizure happened right after i went for my morning run and right after a run your blood pressure drops, my blood pressure already averages 90/60 on a high day, I have hypo tension as is, its not too much to as that it be considered that my "absent seizures" could possibly be fainting and the abnormal EEGs were un fact just migraine which I do have. I have only had one TC which was provoked by an illegal drug. I mean, it's not a stretch at all to consider that syncope could be the cause and I'm on all of these drugs that are draining me and destroying my marriage (I'm sure you can relate to these mood swings and such) and all of this is so unnecessary) if there is a chance that I can manage this.

But with the medicine....
Uuuugh


He spent all of this time drilling it into me... "don't EVER stop the medicine, you have to stop slowly." Know what he told the nurse today? "tell her to stop the topamax and just take the keppra"
Last week only 100mg of topamax wasn't enough so I needed 500mg of keppra, now he says to stop topamax without even slowly weaning off? I asked if I needed to go in and see him before I stop and she said something about my second opinion. I would still be seeing my neuro but I got M second opinion?
I'm not on keppra yet though. Its not in my system so I guess I gotta get I in my system :/

uuuuuuggggghhhhh now I'm bugged out about that seizure thing that happens when you aren't on enough, I know I don't think I have it, I went my whole life without medication and was fine but how in the world can he be so careless like that?
 
I forgot to ask my question.... Is it ok to come off 200mg of topamax a day like that? Should I wait for the keppra to get in my system? My doctor sucks
 
girlwithadog

I am glad you are getting a second opinion, no I do not agree with stopping cold turkey on any medication but I would make an exception if I was getting chest pains. That is not good to be getting chest pains, but that is only my opinion. Change that neurologist. You were already on keppra and seen the results, so I would be thinking of another medication. Stopping cold turkey can bring on seizures as you said but in the circumstances I think I would prefer the seizures, that is only my opinion.
 
I do agree with that point, I'd prefer seizures over say, cardiac arrest lol.

I don't know what the chest pain is, only that it is deep in my chest in the left side and feels like someone has the hand in their squeezing hard. It only lasts 3 or so minutes but its enough to be concerning. The pain starts to fade and goes away but it comes back so I guess I'm switching to keppra starting tonight per neuros orders
 
girlwithadog

Its only my opinion but I think it might be the right thing to do, I will tell you about keppra as you already know about it, just be careful.
 
I question going off of Topamax cold turkey. I also needed to come off topamax quickly myself due to serious medical issues it was causing--even dropping 50 mgs at one shot caused seizures on day 4 or 5, even though I increased Keppra by 500 mgs first. I experienced mild seizures on day 4 or 5 at 25 mg reductions as well. I ended up coming down by 12.5 mg increments a week to avoid seizures. Now, I was on it a long time and wasn't having chest pains, but in general, topamax is a serious seizure med and rapid reductions or discontinuation can cause seizures in people who are taking it for migraines, with no history of epilepsy at all. I experienced great improvement of my topamax-related symptoms as I reduced; I'm still on 75 mg (down from 200) and while I will be going off it completely once I'm off clonazepam, I don't have the previous problems. Even the reductions make a difference. I'm certainly no doctor and I'm definitely not telling you what's best to do, especially since you are having chest pains, but I am concerned about this advice your doctor has given you and wonder if you should get in to see your GP and have your chest pains evaluated, getting their opinion before deciding whether to go cold turkey. Just a thought.
 
Last edited:
I went to see my go last week and they refused to adjust my epilepsy medication saying it had to be my neurologist because they were not trained to do so. I am looking for a new go as well.i have had one heck of a month
 
girlwithadog

I hope you find good ones both GP and Neurologist, I am sorry you had such a bad time of it lately but you will get through it.
 
Well it's certainly not up to me to contradict your doctor's advice :) I didn't have an easy go of tapering off topamax--but I was on a reasonably high dose for a long time and didn't have chest pain, so my situation isn't quite the same. I had an electrolyte imbalance though that was causing severe diarrhea, dehydration, status myoclonus and other things, but it was coming and going as I was taking supplements until they figured out it was Topamax. Good luck, I hope it goes well.
 
By the way, Girl--why have they said you have hypotension if you don't mind my asking? I'm just curious--I'm obviously on the same med cocktail as you and am a little hypotensive for the first time in my life--not as much as you, I tend to be around 105/58-60, where I used to be hypertensive (and was on meds for it). I haven't spoken to my dr yet but wondering if it's the meds (I used to be on different meds). Just wondering if you've ever been told it's a med side effect.
 
They haven't said why I have hypotension, its never been looked into. They said "unless it causes problems" which it does but they just blow me off. Its quite frustrating. I tell them when I stand up I feel like I'm going to pass out so I have to grab fanatically at the walls for balance and they say to stand up more slowly. So it takes five minutes to stand. That's fine and all but I'm supposed to live like this, any time I sit down I have to take five minutes to slowly stand before moving?
I spent all of my teens and early 20s taking only baths and not showers because the simple task of standing in one place for longer than five minutes made me feel faint. It still does so I just take showers more quickly since o can no longer take baths.
I have almost always struggled with some form of eating disorders. Until 8 years ago it was anorexia. 8 years ago I started to over eat and gained 80 pounds. 2 years later I became anorexic and bulimic and in 6 months I lost 90 pounds and did a lot of damage to my body. That's when I learned I had an irregular heart beat (although a paramedic defined it as a heart murmur, not sure if there is a difference). I practically starved myself and almost killed myself. I fainted (although my current neurologist says it was likely a drop seizure) while standing at work and stopped breathing for almost three minutes. My doctor said my heart pretty much gave up.

I kept up with the "diet" for another two months before I finally snapped out of it. I started therapy, saw a nutritionist and have been doing wonderfully for the last five years without any concern. Every once in a while I'm remote to cut meals to lose weight quickly but when I saw how quickly the weight was dropping from the topamax I knew something was wrong. I've been there. I've had this chest pain before, leading up to the fainting spell when I stopped breathing. I had all of this before. I've been through it all before. The low blood pressure I always there but its made much worse when I'm not eating right and the topamax is making my appetite non existent no matter how much I want to eat.

I tried to explain this to my GP but since they checked my blood work when I was only on keppra before the weight loss and before the tops.ax four months ago they don't see how things could have changed so drastically.
I have stopped the topamax, today is my first day off of it officially (I wanted to give the keppra time to get in my system) yet I'm still having chest pain. I really can not wait for the tops.ax to work its way out of my system fully. Its not even getting rid of my migraines! I've had three migraines this week alone!
 
My primary care doc won't handle my AEDs. She says I need my neuro for that.
Topamax it's one one drug I take that can help my sz's that few do help me.
I take 200MG2x day with phenobarb there's not much I can take.
Tegretol300MG3xday

I want off my AEDs I've taken meds all my life.
 
Sounds like topamax is agreeing with you about as well as it agreed with me. It' a great drug for some people for sure--for me it was pure hell and took a massive toll on my overall health--it was my GP like I mentioned who finally said 'I think the topamax is what is doing all this to you--please talk to your neuro about getting off it, and as quickly as is safe.' Since I have gone down: I don't have 'visual trails' every morning when I wake up; my electolytes have leveled off, which was becoming a borderline life threatening problem; I don't have migraines 1/4 of my days; I can eat again, although my weight hasn't changed; tingling, muscle spasms and twitches have stopped; myoclonic seizures have greatly reduced. Only issue is, topamax was more effective at controlling partial seizures.
 
Those trails were starting to happen. Three nights ago I think it was I came out from my daughters room and sat down. I grabbed my drink and felt like id just taken ecstacy. Everything had tracers. Wasn't the first time id felt like id taken ex. I really hope my neuro isn't causing more harm than good in stopping me so suddenly, today is day one off of it so I will keep updating. My first missed dose was about 7 hour ago but I have missed one dose twice before on topamax and been ok. I started keppra 500mg 2x two days ago.

I am also running a low grade fever which is mildly concerning. the fever is from a bug I picked up from my daughter. No fun. I have also been experiencing an increase in migraines over the last week and today is one of the days. Ironic, the days I forgot my topomax were the days I got the migraines as well. Maybe that's to be expected which will stink. I hope not :/
 
My trails a couple of times were bad enough there were called palinopsia--if I looked at an image, I could still see that same image at on top of the next thing I looked at, and so on. It was impossible to function, like being in a fun house or on an acid trip. The trails were often a visual aura to a migraine, but not always (the palinopsia ones were for sure, followed by nausea and light and sound sensitivity, though I rarely get the severe headaches (silent migraines)). I had trails a LOT of mornings (mornings only though). I had them for many months, until I got down to around 100 mgs. At 75 mgs, I never get them anymore at all. If you start having seizures or auras I'd call the dr--cold turkey really is a harsh way to go on topamax and not recommended usually without close dr supervision (according to all enclosed materials).
 
Just updating...
I of course wouldn't recommend anyone doing this and am rather upset at my neuro for having me do so and without his guidance, apart from "stop taking it andi will see you in February", but things are going well so far considering.
I'm coming up on 48 hours since my last dose of Topamax. No tingles in over 24 hours, I haven't had chest pain since yesterday, so far no seizures (I am on 500mg of keppra 2x a day), I feel the fog lifting and I feel my head clearing.
I have been sick though so hopefully I can make it out of this cold and medicine change without difficulties. But as I said, I believe its blood pressure as opposed to epilepsy so if I'm correct, the medication reduction shouldn't be too concerning and I just need to watch my blood pressure which I have been trying to do. I have noticed however that today I have been having more drops in my blood pressure than average which is unsettling but I will pray they turn into nothing serious.
I'm impatiently waiting on the referral from my neurologist for my second opinion, if this is an issue relating to my heart or blood pressure I would like to begin working on it now to get it under control before any more damage is done.
 
I've been thinking about you, and so glad to hear it is going well!! You will probably be fine. My seizure issues were around days 4 and 5 (topamax has a long half life), but if you went cold turkey and have had NO problems you are hopefully going to be just fine. Sure feels good going off doesnt it???
 
girlwithadog

I wondering how you were doing and it seems like its going ok so far, the being sick could be a result of how you changed medication so fast. That neurologist was not much help to you but you got through it and from here things will get better I hope. Take things easy for a few days.
 
You must log in or register to reply here.
Back
Top Bottom