Anyone take Topamax/Topiramate/Trokendi? Questions for you--

[ame]

So I've been on some form of this (right now TrokendiXR) for about 5 years, and I have noticed a SERIOUS decline in immunity since I've been on it. I know that there's some known side effects--confirmed by at least one doctor and the pharmacist--regarding "bronchial infections" and "unknown other infections" for up to 28% of those taking this drug. Since I would fall into that percentage, I am looking into other options with my doctor, although I am told that most if not all drugs in this class offering have the same side effect issues.

I wanted to know if anyone else who might take this drug has also noticed the same kind of issues, or any similar issues in getting basically any damn virus/sickness that goes around and having no real ability to fight it off like you used to?

 

[AGBF]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I am not sure what comfort it will be to you, ame, but I have not experienced this with Topamax.

Deb

 

[ksinger]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Depends on what you're taking it for, but have you tried Neurontin? It's a similar med often used for the same things. I think it has a less crappy side-effect profile.

I confess I've not taken Topamax though, I'm currently working my way slowly up on the Neurontin for nerve pain. I've taken it before but seem to recall it making me quite loopy. We shall see...

 

[ame]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Depends on what you're taking it for, but have you tried Neurontin? It's a similar med often used for the same things. I think it has a less crappy side-effect profile.

I confess I've not taken Topamax though, I'm currently working my way slowly up on the Neurontin for nerve pain. I've taken it before but seem to recall it making me quite loopy. We shall see...

It is for (what we assume is) vestibular migraines or possibly an epilepsy condition. They can't figure out the issue, but it's helped with the majority of the symptoms. But I cannot do this constantly being sick crap. It's destroyed any of my immunity.

 

[ksinger]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Depends on what you're taking it for, but have you tried Neurontin? It's a similar med often used for the same things. I think it has a less crappy side-effect profile.

I confess I've not taken Topamax though, I'm currently working my way slowly up on the Neurontin for nerve pain. I've taken it before but seem to recall it making me quite loopy. We shall see...

It is for (what we assume is) vestibular migraines or possibly an epilepsy condition. They can't figure out the issue, but it's helped with the majority of the symptoms. But I cannot do this constantly being sick crap. It's destroyed any of my immunity.

Hmm. I can't speak to the migraines or seizures, although Neurontin is an older seizure med that is now used primarily for calming nerve pain. And hot flashes. Weird huh?

I assume your doc is monitoring your lymphocytes by regular CBC w/diff, yes? Are your numbers down significantly? If they aren't actually down, is it possible that you're just having a temporary spate of bad luck? Has the increase in infections been going on for a long time now? (I'm grasping at being positive here.....I know how frustrated you must be)

I feel for you, having to take meds that suppress immune function. My last overall lymphocyte count was in the 700+ range, which is pretty low, but not low enough for my neuro to take me off the med I'm on - it's a med which can open you up to PML, which will kill you if you develop it. But for some lucky reason, I've not been catching anything. Whew. Infections of any kind with MS, can set off a relapse, so they are to be avoided if at all possible.

I hope you and your doc find something, because yeah, being sick and feeling like crap all the time is, well, crap.

* PML = caused by the JC virus, stands for progressive multifocal leukoencephalopathy. Yes, say THAT 3 times fast! ha!

 

[pinkjewel]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

ame- I'm not sure it's the meds. I think viruses have mutated and become stronger. I am normally a pretty healthy person, but I have been sick since the week before Thanksgiving. I can't seem to fight off this virus and secondary bacterial infections. I'm now just finishing my third round of antibiotics after being diagnosed with pneumonia the day after Christmas. It's ridiculous- and the more run down I'm feeling the less I am able to fight off additional infections. But, I am not alone. My internal medicine physician said in 27 years he has never seen a year like this one where people just do not get well. The bronchial infections linger, the low grade fever, malaise, and just when you think you're getting well- it hits again.

 

[ame]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Depends on what you're taking it for, but have you tried Neurontin? It's a similar med often used for the same things. I think it has a less crappy side-effect profile.

I confess I've not taken Topamax though, I'm currently working my way slowly up on the Neurontin for nerve pain. I've taken it before but seem to recall it making me quite loopy. We shall see...

It is for (what we assume is) vestibular migraines or possibly an epilepsy condition. They can't figure out the issue, but it's helped with the majority of the symptoms. But I cannot do this constantly being sick crap. It's destroyed any of my immunity.

Hmm. I can't speak to the migraines or seizures, although Neurontin is an older seizure med that is now used primarily for calming nerve pain. And hot flashes. Weird huh?

I assume your doc is monitoring your lymphocytes by regular CBC w/diff, yes? Are your numbers down significantly? If they aren't actually down, is it possible that you're just having a temporary spate of bad luck? Has the increase in infections been going on for a long time now? (I'm grasping at being positive here.....I know how frustrated you must be)

I feel for you, having to take meds that suppress immune function. My last overall lymphocyte count was in the 700+ range, which is pretty low, but not low enough for my neuro to take me off the med I'm on - it's a med which can open you up to PML, which will kill you if you develop it. But for some lucky reason, I've not been catching anything. Whew. Infections of any kind with MS, can set off a relapse, so they are to be avoided if at all possible.

I hope you and your doc find something, because yeah, being sick and feeling like crap all the time is, well, crap.

* PML = caused by the JC virus, stands for progressive multifocal leukoencephalopathy. Yes, say THAT 3 times fast! ha!

5-6 years, where I am on such strong antibiotics for almost half the year that I can't get anything stronger without going to the hospital. And it's progressively worse every year, this calendar year since last January (which from November 15-Feb 16 I was on an antibiotic all but 11 days straight.) I have been on some form of antibiotic trying to fight this shit off more than half the year. Into late Feb, then again June, July into early Aug, then again now since early November. Solid save for about maybe 7 random days.

They cannot give me anything stronger without admitting me to the hospital. And we can definitely link it to since I've been on this drug.

 

[ame]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

ame- I'm not sure it's the meds. I think viruses have mutated and become stronger. I am normally a pretty healthy person, but I have been sick since the week before Thanksgiving. I can't seem to fight off this virus and secondary bacterial infections. I'm now just finishing my third round of antibiotics after being diagnosed with pneumonia the day after Christmas. It's ridiculous- and the more run down I'm feeling the less I am able to fight off additional infections. But, I am not alone. My internal medicine physician said in 27 years he has never seen a year like this one where people just do not get well. The bronchial infections linger, the low grade fever, malaise, and just when you think you're getting well- it hits again.

Usually I start about the week before Thanksgiving with what starts with a virus that because my body can't fight it off, turns into such a vicious infection, I have ended up in the hospital, but they can't give me anything stronger. I am on my 6th round, and nothing is working. I have to see an infectious diseases specialist at this point, because no one can help me.

But like I said--it didn't start to do this til I got on this specific drug.

 

[AGBF]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

My daughter was on Gabapentin and, on a high dose, it caused her to faint. After seeing her suddenly topple over in her bedroom, I told the doctor we were not going to continue that one. My dog is on it and is thriving. My best friend was on it and it did not work for her. The amazing thing is that all three of them were on it for different reasons. My daughter took it as a psychiatric medication; the dog takes it for his skin condition (his itching); my best friend took it for pain. Topamax also seems to be a "fixes everything" medication. I know it was originally prescribed for seizures, but everyone seems to have taken it. I take it to prevent migraines and it works for me.

AGBF

 

[House Cat]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I have been taking topamax for ten years for migraine. I am not having immunity issues. It hasn't been fantastic for preventing the migraines either. I was having migraine on top of migraine and decided to try Botox. It worked to stop the pain cycle. I won't ever be without it again.

I take Gabapentin/Neurontin for nerve pain. I feel that it adds to my cognitive issues. But my nerve pain is outrageous and I see no other alternative.

 

[azstonie]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

My daughter was on Gabapentin and, on a high dose, it caused her to faint. After seeing her suddenly topple over in her bedroom, I told the doctor we were not going to continue that one. My dog is on it and is thriving. My best friend was on it and it did not work for her. The amazing thing is that all three of them were on it for different reasons. My daughter took it as a psychiatric medication; the dog takes it for his skin condition (his itching); my best friend took it for pain. Topamax also seems to be a "fixes everything" medication. I know it was originally prescribed for seizures, but everyone seems to have taken it. I take it to prevent migraines and it works for me.

AGBF

Finn, my Westie avatar, takes an NSAID (metacam) and gabapentin once daily for musculoskeletal pain and has done really well---14 years old. Maggie my female Westie, takes metacam and twice-daily gabapentin, also for MSK issues, does well on it.

 

[azstonie]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Ame, I'm sorry to hear you're going through this. Regarding failing antibiotics---we're in serious trouble because antibiotics are played out---ineffective thanks to overuse. None in the research/development pipeline at this time. Therefore, our future looks grim. Its been widely publicized in many public forums and infectious disease docs have known for quite some time. ID docs started combining antibiotics to get traction but that's about done for now.

 

[AGBF]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

My daughter was on Gabapentin and, on a high dose, it caused her to faint. After seeing her suddenly topple over in her bedroom, I told the doctor we were not going to continue that one. My dog is on it and is thriving. My best friend was on it and it did not work for her. The amazing thing is that all three of them were on it for different reasons. My daughter took it as a psychiatric medication; the dog takes it for his skin condition (his itching); my best friend took it for pain. Topamax also seems to be a "fixes everything" medication. I know it was originally prescribed for seizures, but everyone seems to have taken it. I take it to prevent migraines and it works for me.

Finn, my Westie avatar, takes an NSAID (metacam) and gabapentin once daily for musculoskeletal pain and has done really well---14 years old. Maggie my female Westie, takes metacam and twice-daily gabapentin, also for MSK issues, does well on it.

We are both dog lovers, azstonie, so a very brief threadjack. Griffin (my Newfie) is very used to Gapapentin now. But I will never forget the first time I gave it to him. The vet never told me to give him a small dose at first or warned me that it might make him sleepy and it totally knocked him out! I had this enormous, 150 pound black ox asleep and snoring in the middle of the living room for hours! I was very surprised...to put it mildly. He is so huge that I wouldn't have expected this.

Deb

 

[azstonie]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I can just picture him as you described!!! I sure love Newfies, I wish I could meet Griffin, what a good good boy he is Finn would love him.

 

[Kelinas]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

 

[ksinger]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

This post is less for you, who (sadly) have your own store of medical wisdom now. This is going to be a rant about doctors.

I feel your pain. As someone who has been through much more of the medical maw than most, here is what I've learned.

I can't speak to military docs, but I'm pretty sure it's not that much worse there. It's plenty bad out here.

Of all the specialties I've had contact with - and I've dealt with quite a few now - neurologists are typically right up there with the worst. The tend to be very arrogant (and I'm not entirely sure why) and to treat patients like children, or supplicants. They are often dismissive of the pain you report, while trying alleviate pain they have decided needs relieving, even if you've told them you're OK with that one. And mine commented last time I saw him, (I was having a really bad day), "Well you're flat today." The male doc equivalent of telling a woman to smile? I was thoroughly pissed. We proceeded to have what amounted to a protracted set-to for the entire visit. He slagged another doc's observations (which I had mentioned in passing) THROUGH me, as in, he was frothing at ME for what she'd said. I told him "Hey, if you have a problem with what she said, you need to take it up with her!", "Well...I wouldn't...." And I said, "Well, what you are really saying here is that she's full of crap." Huffy, "I did NOT say that!" Me, "Yes, you did." Then he airily assumed I was going to have an MRI in Dec. I calmly said, "No, I'm not going to do that." I could tell he was not pleased, "Well that's how we track your disease and see if the med is working." I said, "I've had enough MRIs for a while - I've had 9 in the last 2 1/2 years and I'm not doing another until June of next year. He, very defensive, "Well I didn't order that many!" Me, "I don't care WHO ordered them, I'm not doing another one!!" (He ordered 7 of them BTW) Of course, in his defense I will say that he's newly minted and about 12 years old (not a day over 30, and probably under). I'm quite old enough to be his mother, and thus see his reactions as the defensiveness, competitiveness, and arrogance of youth. So yeah, while he was not hiding his eyerolls very well, I was making some "observations" about him in return, and he didn't like it much. I'd like to switch to an older, more seasoned doc, but MS specialists are hard to come by, and the other ones around here are dicey, even as they are considered top notch. (They are on the pharma dole, and I don't like that)

Bottom line? I don't let docs tell me how I should feel, how much or what kind of pain I can or should feel, or how I should prioritize that pain. And I research every drug, because they usually won't tell you all you need to know. And I don't necessarily share their love affair with their techno toys.

So, OK. I'll shut up now. But I'm with you, all of you, who are having to make tough choices and buck doctors. They are the experts, but at the end of the day, you have to live in your body, and only you know what you can stand.

 

[ame]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

MY HAIR HAS BEEN THINNING LIKE HELL FOR YEARS TOO!

I messaged my dr about this today because my EEG that I had last week came back as Normal. Now it does not explain why I have the symptoms, but my MRI, MRA, CT and EEG are ALL normal this time around (Actually all were normal BUT the EEG last time...) So...I told her I need to find a solution, and I want off this med. I am going to have to ween myself off I think, because I cannot freaking be sick like this all the time. I explained that I am about to be admitted for an IV antibiotic with this infection, and there's a hell of a culture growing. They can't figure out how to treat it, and that the pharmacist and doctor have both commented that up to 25% of people on this drug have issues with recurrent serious bronchitis and "other explained infections" and I am clearly in that percentage.

So...I need off.

 

[Marquise_Madness]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I only took it from April-November for migraines and it didn't cause that, but it did cause memory loss/cognition issues for me. I think I was on 500mg a day. I take propranolol now and my migraines are better managed.

 

[Marquise_Madness]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

I had the pins and needles in my nose, cheeks, fingers, and legs. It was the darnedest. I thankfully was warned about kidney issues, but I also had memory problems and was nauseated all the time.

 

[House Cat]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

MY HAIR HAS BEEN THINNING LIKE HELL FOR YEARS TOO!

I messaged my dr about this today because my EEG that I had last week came back as Normal. Now it does not explain why I have the symptoms, but my MRI, MRA, CT and EEG are ALL normal this time around (Actually all were normal BUT the EEG last time...) So...I told her I need to find a solution, and I want off this med. I am going to have to ween myself off I think, because I cannot freaking be sick like this all the time. I explained that I am about to be admitted for an IV antibiotic with this infection, and there's a hell of a culture growing. They can't figure out how to treat it, and that the pharmacist and doctor have both commented that up to 25% of people on this drug have issues with recurrent serious bronchitis and "other explained infections" and I am clearly in that percentage.

So...I need off.

Ame,

I'm tellin ya, give the Botox a try. See if your insurance covers it. Mine does. Then look up on google the Botox migraine pattern to see if you are good with it. Honestly, they use the tiniest needle and are so fast, I could barely feel my neurologist working.

Did you have lesions on your brain from the migraines on your MRI?

My hair is thinning too.

Be very careful about weaning yourself off Topamax. I've started a shitstorm of symptoms doing that on my own. I thought 100mg/wk was slow enough. It wasn't for me.

Keep us posted. This infection sounds horrible!

 

[DAF]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I've tried to take Topiramate twice for migraines and both times it gave me horrible stomach pain. It has many off-label uses - it's even being used in combination with another drug for weight loss. I've had migraines for over 20 years and they significantly worsened two and a half years ago to the point that I had a constant funk in my head24/7 and migraines at least five out of seven days per week. My new neurologist is a gift from God. I'm on Duloxetine (generic Cymbalta) and Propanolol (BP med - beta blocker) which have significantly reduced the funk in my head. I've recently begun Botox injections in my head muscles and that has helped significantly with the frequency of migraines. Relpax is my abortive med for when I do get a migraine. I have lots of triggers: foods, crying and perfume.

Have you seen a neurotologist?

 

[AprilBaby]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I have been on/off topomax several times over the last three years. The first time I quit was because I was getting upper respiratory infections. I had all the initial side effects. Every time after that the side effects became less as I started. I just quit again 200 mg/day cold turkey (I never get withdrawal problems). My migraines seemed worse on the topomax than off. I see the Chiropracter for neck adjustment and that seems to work better. I did get drastic loss of appetite which was great but no weight loss.

 

[Kelinas]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

I weaned myself off of it (against my neuros wishes) but at a decrease of 25mg per week. It took about 2 months to fully stop.

I've tried 90% of the abortive medication on the market - it was damn near impossible to make them understand why the meds didn't work!
I get SEVERE nausea and vomiting during my episodes. I'd take a abortive and a anti nausea pill, then throw up the pills 20 minutes later (still intact btw)
Then I tried the melts (Maxalt) still didn't help.
Then the nasal inhaler which helped my head about 20% but was so nasty it made me sick even more.
Finally, they out me on the injections which worked wonders (Imitrex)
Then my new Neuro apparently got kickbacks from a pharma company and changed my presciption to Sumavel Dose Pro - which is "needle-less" but uses gas to push the meds through the skin, usually leaving a softball size knot on my stomach / thigh.

Ugh I hate the memories.

My triggers were stress, lack of sleep, bright flashing lights, caffeine and oddly enough, being startled.

 

[AprilBaby]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

Imitrex (pills) don't work for me at all. I have fiorcet with codiene which works sometimes. For some reason the Dr won't give me maxalt. My triggers are stress, lack of sleep, and barometric pressure.

 

[ame]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

*long post incoming- sorry!*

I took Topiramate for 5(ish) years for migraines.
Within the first 48 hours, I had a "pins and needles" feeling in my face - this remained until I was weaned off the medication. My face was in constant pain but I was told by numerous neurologists that I should suck it up because I should be grateful to have that pain vs a migraine.
I sucked it up for the entire 5 years. How stupid was I?
Then within the first week, ny short term memory was gone. I found myself forgetting how many quarts were in a gallon, forgetting that I had something in the oven ect.
my ex husband was a lifesaver at this point. I don't know how he put up with me
Then I started noticing my hair drastically thinning & falling out, and going from curly to wavy.
Followed by kidney infections and always getting sick.
Wasn't until year 5 that a pharmacist warned me of the damage Topiramate can have on your kidneys.
I booked another appointment with my Neuro and asked him about this- he nonchalantly responded with "this? This stuff is horrible for you. However, in your case, you gotta weigh the pros and cons. Yea it damages your kidneys but at least you don't have migraines"

I started the weaning process that day.
Fast foward to now - my hair is still thin as can be, but no longer falling out.
My memory is back and pretty sharp.
No more pins and needles on my face .
And my kidneys are functioning at 70/85 % - I don't understand why one is in better condition than the other.


My entire experience was with military hospitals, so Dr attitudes may vary. Most of mine sucked donkey balls.

Fwiw- I haven't had a migraine in 8 months.
Turns out my neck was severely misaligned due to being hit by a car when I was 7. Two chiropractic adjustments and I've been good. I took that effin ne3d for no reason.

MY HAIR HAS BEEN THINNING LIKE HELL FOR YEARS TOO!

I messaged my dr about this today because my EEG that I had last week came back as Normal. Now it does not explain why I have the symptoms, but my MRI, MRA, CT and EEG are ALL normal this time around (Actually all were normal BUT the EEG last time...) So...I told her I need to find a solution, and I want off this med. I am going to have to ween myself off I think, because I cannot freaking be sick like this all the time. I explained that I am about to be admitted for an IV antibiotic with this infection, and there's a hell of a culture growing. They can't figure out how to treat it, and that the pharmacist and doctor have both commented that up to 25% of people on this drug have issues with recurrent serious bronchitis and "other explained infections" and I am clearly in that percentage.

So...I need off.

Ame,

I'm tellin ya, give the Botox a try. See if your insurance covers it. Mine does. Then look up on google the Botox migraine pattern to see if you are good with it. Honestly, they use the tiniest needle and are so fast, I could barely feel my neurologist working.

Did you have lesions on your brain from the migraines on your MRI?

My hair is thinning too.

Be very careful about weaning yourself off Topamax. I've started a shitstorm of symptoms doing that on my own. I thought 100mg/wk was slow enough. It wasn't for me.

Keep us posted. This infection sounds horrible!

Everything I've read/heard/been told, says weaning needs to be 25mg every other week, and not to ever go cold turkey or you can have a grand mal and die. That last part is the most important one they stressed.

PS: The culture isn't "final" yet, but it's staph plus something else. They ruled out TB or any related TB family infections, so yknow, that's good. I am about tired of this. STILLLLLLLLLLLLLLL sick.

RE Lesions: No. None. In fact: EEG is normal, clean. ALL the scans are clean. Doesn't explain the issues, but all the scans are clean. I see her next week, and I am not leaving without a "let's start weaning now, and then figure something else out."

I don't have active headaches. We think it's vestibular. I can count on one hand or less how many I have in a year and most of those are related to being ill.

I've tried to take Topiramate twice for migraines and both times it gave me horrible stomach pain. It has many off-label uses - it's even being used in combination with another drug for weight loss. I've had migraines for over 20 years and they significantly worsened two and a half years ago to the point that I had a constant funk in my head24/7 and migraines at least five out of seven days per week. My new neurologist is a gift from God. I'm on Duloxetine (generic Cymbalta) and Propanolol (BP med - beta blocker) which have significantly reduced the funk in my head. I've recently begun Botox injections in my head muscles and that has helped significantly with the frequency of migraines. Relpax is my abortive med for when I do get a migraine. I have lots of triggers: foods, crying and perfume.

Have you seen a neurotologist?

I have for years, and I am about to find a new one because, direct quote, "there are no reported immunosupressive side effects with this drug. Whatever you're being told about it causing infections is false." Uh, it's printed in the insert with the prescription. And I am bringing it with me. Besides that, the pharmacist showed me in the drug database, the pulmonologist showed me in his database, and it's on drugs.com. It's pretty well known apparently.

The botox thing is fascinating to me, I don't get the normal migraine thing, like standard definition. I don't get headaches really. I get like...vertigo type spells, vestibular craziness.

As far as the weightloss thing--It NEVER affected my appetite, if anything made it worse.

I have been on/off topomax several times over the last three years. The first time I quit was because I was getting upper respiratory infections. I had all the initial side effects. Every time after that the side effects became less as I started. I just quit again 200 mg/day cold turkey (I never get withdrawal problems). My migraines seemed worse on the topomax than off. I see the Chiropracter for neck adjustment and that seems to work better. I did get drastic loss of appetite which was great but no weight loss.

God I wish I had THAT side effect. It never happened. My old neuro made a huge ordeal about it, how I needed it too because a drastic weight loss would take pressure off my brain as well...well, it never happened for me. Big jerk promising me I'd be thin and dumb. Only that last part happened on this drug.

But anyway, according to my neuro, these upper respiratory infections can't POSSIBLY occur.

 

[Kelinas]

Re: Anyone take Topamax/Topiramate/Trokendi? Questions for y

http://www.ehealthme.com/ds/topamax/upper%20respiratory%20tract%20infection/

Https://www.drugs.com/answers/topamax-pneumonia-bronchitis-respiratory-illness-718885.html

http://www.webmd.com/drugs/2/drug-14494-6019/topamax-oral/topiramate---oral/details/list-sideeffects

All of these state that upper respiratory infections are common

Plus I'm adding pictures of other sites saying the same