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Topamax or Topiramate? Any Exerience With This Medication?

Stone

Senior Member
Messages
371
Location
NC
I've recently been prescribed this medication and have NOT had a good experience with it. Has anyone else ever used this medication? Have you had any success with it? Have you had a negative experience with it? Please share.
 

heapsreal

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Messages
10,133
Location
australia (brisbane)
Hi, I used this to help leg pains i get at night and interfere with my sleep. I started with 25mg and it worked well for awhile with pain and sleep but needed to increase the dose until i got to 100mg, prior to that i had no side effects at all then hitting 100mg i had a constant metallic taste in my mouth and constant reflux that wouldnt go away with antacids, these side effects dont sound bad but they were at an unbearable level, so i stopped. I can understand why they say people lose weight on it cause u feel to sick to eat. I moved to topamax as lyrica had pooped out on me but after stopping topamax i then moved to neurontin which is doing the job fine although lyrica was better for sleep, i may go back to it down the track though. I have taken the occassional dose of topamax at 50mg with other sleep meds and it has helped improve sleep quality.

Can i ask what u are using topamax for???

cheers!!
 

Stone

Senior Member
Messages
371
Location
NC
Sure, I was using topamax for severe and constant nerve pain in my legs that has been diagnosed as neuropathy. The primary care doctor (not the neurologist) started me on 25 mg twice a day. The first day I took one since I got it filled in the afternoon, and within an hour of taking it I was hysterically crying and feeling unbearably hopeless and my pain was terrible. The next day, I took one and within 30 minutes I could feel my pain start to ramp up to maddening levels, and again had uncontrollable crying. Also, I could not eat at all on this medication which is very bad since I've been trying to stop losing weight. This insanity continued till the middle of the next day when my husband took me to the emergency room where I was told to stop taking the medication because it was making my pain worse. I'm going to call my doctor now and leave him a message about my bad topamax reaction.

I had high hopes and was encouraged by what the pharmacist said when we picked up the medicine, but it's not to be. I don't do well on meds like this ever. I can't take Neurotin, Lyrica, Cymbalta, Savella, or Chantix. Now I can add Topamax to the list.

I'm glad it worked well for you for a time and it's too bad the side effects overtook the benefits. Good luck with your current regimen. BTW, I don't think Neurontin is considered helpful for sleep in general. Best of luck to you!

Thank you for sharing your experience. It's so helpful to me.
 

serenity

Senior Member
Messages
571
Location
Austin
i could hardly walk the next day after taking Topomax for sleep. i never took it again. my limbs were heavy & i was so tired i could harldly move. not what i am looking for.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,133
Location
australia (brisbane)
look into gabitril its also an anticonvulsant which may help with nerve pain and help with sleep. Other things worth looking into are tramal, klonopin or valium or low dose amitrptyline or doxepin, the last2 are antidepressants but are old school and can be sedating and were used for nerve pain prior to all the new drugs like lyrica etc, also look into muscle relaxants, i have found baclofen helpful for good sleep but there are many oither out there too.

So maybe have a google of these things then ask your doc to trial them.

cheers!!!

hope something helps u soon, i feel your pain.
 

Stone

Senior Member
Messages
371
Location
NC
I've tried some of those and others. Neurontin does absolutely nothing good or bad. Lyrica makes me unable to stay awake under any circumstances. Cymbalta caused violent, take-me-to-the-hospital stomach pain and vomiting. Savella made my orthostatic intolerance intolerable, and I had to literally crawl to the bathroom and sit on commode with my head down. Very fun medication. Valium does nothing for the pain. Klonapin does nothing for the pain. Low dose amitryptaline worked well for years early on in the beginning of my disease but it caused carbohydrate cravings so bad I gained 60 pounds on it. I recently gave it another try and had to stop because of the 'donut dreams' and I started eating in my sleep, and it did nothing for the pain. My doctor today has called in for me the 5th anti-convulsant medication. I have horrible reactions to these medications. I called back, spoke with the nurse, of course, and told her that I will not take this medication until the doctor explains to me why he thinks this 5th anti-convulsant medication will help me and not give me a bad reaction. The reason the neurologist who diagnosed me with neuropathy did not put me on such a medication is that I can not take them. I also told the nurse that I am too sick to tolerate another reaction and another trip to the emergency room. Puh-LEEZE!
 

Mimicry

Senior Member
Messages
180
I'm resurrecting this thread because I started taking topiramate for my chronic migraine five days ago and am feeling absolutely miserable. I saw a neurologist on Tuesday and he gave me three treatment options: botox injections, CGRP blockers (Ajovy/Emgality) and topiramate, and I wanted to try this one first because it's cheap. The other ones are super expensive and I would have to ask my spouse for money.

The neurologist warned me about the side effects so I braced myself, but it's still terrible. I'm nauseous, dizzy and depressed, can't remember anything, can't eat anything, and feel like I have the worst hangover of all time. I've read that the side effects usually pass with time and I just have to wait, but I still have to raise the dose at some point. Welp. I guess I'll see what happens and if I'm gonna be able to tolerate it.
 

heapsreal

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Messages
10,133
Location
australia (brisbane)
I'm back on topamax as of December last year for constant headaches and replacing lyrica as it put alot of weight on me. Interesting seeing my reaction to this Med 13 years ago and how I couldn't tolerate it as now I can tolerate it alot better.

I don't have any side effects or mood or feel drowsy from it, although I know it's a common side effect. It does help somewhat with the headaches which I think are pressure headaches, chronic intracranial hypertension. Topamax can help your body produce less fluid that sits around your brain and spinal cord which can be over produced in pressure headaches.

I tried botox and I didn't notice much at all. I guess they can help migraines but if you have pressure headaches they won't help.

The other way topamax helps with pressure headaches is losing weight. I've lost almost 30kg since stopping lyrica which in itself has helped and adding topamax. Weightloss does seem to have reduced the intensity of my headaches.

If you can't tolerate topamax, lyrica is an option but be careful with the weight gain from it.
 

Mimicry

Senior Member
Messages
180
I'm back on topamax as of December last year for constant headaches and replacing lyrica as it put alot of weight on me. Interesting seeing my reaction to this Med 13 years ago and how I couldn't tolerate it as now I can tolerate it alot better.

I don't have any side effects or mood or feel drowsy from it, although I know it's a common side effect. It does help somewhat with the headaches which I think are pressure headaches, chronic intracranial hypertension. Topamax can help your body produce less fluid that sits around your brain and spinal cord which can be over produced in pressure headaches.

I tried botox and I didn't notice much at all. I guess they can help migraines but if you have pressure headaches they won't help.

The other way topamax helps with pressure headaches is losing weight. I've lost almost 30kg since stopping lyrica which in itself has helped and adding topamax. Weightloss does seem to have reduced the intensity of my headaches.

If you can't tolerate topamax, lyrica is an option but be careful with the weight gain from it.
I'm already on Lyrica, for seven years now, and while it's been great for my nerve pains it does nothing for the migraines, unfortunately.

Good news, the side effects have lessened, and I've been feeling pretty good for two days! Bad news is now I have to start increasing the dose. 😵
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,133
Location
australia (brisbane)
I'm already on Lyrica, for seven years now, and while it's been great for my nerve pains it does nothing for the migraines, unfortunately.

Good news, the side effects have lessened, and I've been feeling pretty good for two days! Bad news is now I have to start increasing the dose. 😵
I wonder if it's the combination that's making you feel dizzy, depressed and feeling hungover although I can imagine the nausea and can't eat being the topamax.
The highest dose of lyrica I was on was 300mg twice a day and it smashed my chronic headaches and my insomnia almost vanished, I could fall asleep anywhere lol put the weight climbed rapidly. I dropped the dose down to 150mg twice a day after a short period which slowed down the weight gain etc. I went through a period where I was getting alot of break through headaches/migraines and was taking an extra 150mg of lyrica as I needed it. My wt sky-rocketed and I don't think it helped symptoms as I developed sleep apnea.
Adding topamax almost instantly helped me lose some weight and then slowly tapering the lyrica I lost more, eventually to the point the sleep apnea went. I think the headaches have lessened but I'm not convinced they were migraines but intracranial hypertension. I don't drink tea or coffee and stopped cola drinks over 6 months ago so been caffeine free for awhile. But what I've found helpful now is actual 2 or 3 non consecutive days I take a Caffeine pill at 5am and half at 10am and I'm almost headache free those days. It seems to make the other days easier, maybe it has carry over effects on the brain somehow. The old theory is it can help constrict dilated blood vessels that are causing the headaches??? I know it's helping and it's cheap. I tried one round of botox and got nothing even though they say you need to have a couple of rounds but I can't justify the cost.
I wish you luck with the headaches. 🤞🙏
 

Mimicry

Senior Member
Messages
180
I wonder if it's the combination that's making you feel dizzy, depressed and feeling hungover although I can imagine the nausea and can't eat being the topamax.
The highest dose of lyrica I was on was 300mg twice a day and it smashed my chronic headaches and my insomnia almost vanished, I could fall asleep anywhere lol put the weight climbed rapidly. I dropped the dose down to 150mg twice a day after a short period which slowed down the weight gain etc. I went through a period where I was getting alot of break through headaches/migraines and was taking an extra 150mg of lyrica as I needed it. My wt sky-rocketed and I don't think it helped symptoms as I developed sleep apnea.
Adding topamax almost instantly helped me lose some weight and then slowly tapering the lyrica I lost more, eventually to the point the sleep apnea went. I think the headaches have lessened but I'm not convinced they were migraines but intracranial hypertension. I don't drink tea or coffee and stopped cola drinks over 6 months ago so been caffeine free for awhile. But what I've found helpful now is actual 2 or 3 non consecutive days I take a Caffeine pill at 5am and half at 10am and I'm almost headache free those days. It seems to make the other days easier, maybe it has carry over effects on the brain somehow. The old theory is it can help constrict dilated blood vessels that are causing the headaches??? I know it's helping and it's cheap. I tried one round of botox and got nothing even though they say you need to have a couple of rounds but I can't justify the cost.
I wish you luck with the headaches. 🤞🙏
I'm glad you got rid of the headache with pregabalin (edit. and the caffeine pills, of course! I'm super brainfoggy again and can't see properly so I have a hard time reading long texts, but that's a problem I've had for years, not due to the topiramate 😅). I can't use higher doses than 75 mg of pregabalin at a time (during the day, anyway) because it makes me feel so drugged and hazy. I usually take 25 mg during the day and 75-150 mg at night. The sciatic pain is the worst at night and prevents me from sleeping, whereas during the day I can usually distract myself.

As for the depression and other side effects... What makes you think it's the combination? Depression is a super common side effect of topiramate especially on higher doses, it's one I come across a lot when I read discussions about the side effects on reddit, for example (depression, taste disturbances and paresthesias seem to be the most common ones). My neurologist warned me about depression as well but said it would probably pass with time.

Have you talked to a doctor about your suspicion that it's IH? Aren't there meds that help with that specifically?
 
Last edited:

heapsreal

iherb 10% discount code OPA989,
Messages
10,133
Location
australia (brisbane)
As for the depression and other side effects... What makes you think it's the combination?
Just think possibly the combo as both are generally sedating or more of a downer type meds. That's my only reasoning behind it. Both could possibly enhance each other's effects positively or negatively??
Have you talked to a doctor about your suspicion that it's IH? Aren't there meds that help with that specifically?
Yes, IH, topamax is used for it. It can lower cerebral spinal fluid which can be excess and cause IH.

So many side effects can occur with these drugs and very individual on who gets them. It's very trial and error. I hope you find something that helps. Sounds like your sensitive to dosages even with lyrica.
 

Mimicry

Senior Member
Messages
180
So. I've been on topiramate for a month and increased the dose to 50 mg a week ago. I've been experiencing increasing lactic acid burning in my legs, arms, hands and back, shortness of breath, tachycardia, chest pains and dizziness and read that the symptoms could be due to topiramate induced metabolic acidosis. Apparently topiramate can do that because it's a carbonic anhydrase inhibitor, and ketogenic diet puts me in a special risk group for acidosis. I'd love to eat a normal diet but for some reason carbs aggravate my gastroparesis and I really hate vomiting every day so keto it is... anyway, I had a phone appointment with a neuro nurse on Monday and asked about the symptoms. She contacted the neurologist and sent me a message yesterday informing that I should taper down the dose.

I guess that was the end of my topiramate adventure.
 

Mimicry

Senior Member
Messages
180
Also, I think other ME patients should also be aware that topiramate can put you in acidosis. Many of us already have a problem with lactic acid and in addition to that many pwME are on keto diet to control their symptoms.
 
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