Topiramate and Brain Fog: What Users Say (Page 5)

• Ali...
• August 8, 2016

For Migraine Prevention "I've suffered from my first bout of migraine as a teenager to now 49. The last 10 months has been actually hell. I'm on blood pressure tablets, levothyroxine. Then symptoms started back in April: tingling arms, legs, numbness, brain fog, memory loss, stumbling, falling over, intolerance to light and sound. Head pain from hell, ear pressure, nausea, etc. 24/7 my life was stopping. Had a CAT scan showed I had empty sella syndrome. Migraines lasted daily for 5 months, so the neurologist placed me on Topiramate, and so far, wow, I slept for 3 days. Head pain and symptoms started to go and now I am starting to feel like me again. What works for one person may not work for the next, but for me, so far, pain and symptoms have gone."

• You...
• October 21, 2016

For Migraine Prevention "I started out on 50 mg x2 a day. After a few hours, burning in between fingers, pins and needles in hands, double vision, vertigo, memory fog... Suddenly realized I was home with my kids, but how did we get here? Oh, I drove? Wow. I don't remember. Ever rode on the Gravitron? That's how bad my vertigo was, I could not lift my head up off my pillow. I actually ate more on this medicine because I felt shaky, like you would get if you hadn't eaten all day. For me, the only thing that kinda tastes close to normal was sugary foods. Heartburn. Nausea. Dry heaving. Motion sickness from waking, standing, sitting, and existing. Light sensitivity. Tremors. I'm sure I'm forgetting things, but the memory fog is too real. I felt drunk overall."

• Sid...
• July 29, 2017

For Migraine Prevention "I only took this med at the 50 mg dose for two days and quit. Felt doped up and nauseous soon after the first dose. The next day, I was completely out of sorts, depth perception was off, felt outside myself, brain fog, headache, shaky, numbness in hands, burning in heels, no appetite, nothing tasted right, pop had no sweetness. The next day, same symptoms to a lesser extent with a constant tremor, overheating with movement, confusion, mood swings, and horrible mental fog, then a headache hitting about 9 out of 10, worse than my average. I decided to discontinue that evening. The next day felt hungover, had light sensitivity, diarrhea, and an upset stomach. The next day, the cloud slowly has lifted, my taste buds have not returned yet and I'm pretty fatigued."

• LAR...
• Taken for less than 1 month
• July 18, 2015

For Seizure Prevention "I've been on 50 mg twice a day for two weeks. Started on 50 mg once a day. My seizures are only once a year, but my last one was so severe, my neurologist said it was time to treat. I also suffer from chronic migraines, so this medicine is serving a dual purpose for me. I was reluctant to start this medicine, as I've read about all the terrible side effects. For me, the side effects have been minimal. The biggest side effect I have experienced is fatigue, but it is nothing I can't manage. From time to time, I feel a pins-and-needles sensation in my feet/toes, but it's nothing more than annoying. Sometimes, I feel a little 'brain fog,' but that seemed to diminish after the first two to three weeks."

• Bee...
• October 27, 2016

For Migraine Prevention "I was put on Topamax, but the generic version about 5 years ago for migraines. The weight loss was phenomenal when I took it like I was instructed. It decreased my appetite tremendously. I did have tingling in my hands and feet for a while and was a little foggy, but nothing too bad. I actually didn't attribute these effects to the Topamax until reading others' accounts. I went from 220 to 180 lbs in under a year. I stopped taking it about 3 months ago because a friend complained that it made her hair fall out and that she was feeling mentally ill, so I got scared and stopped. Now my appetite has really picked up. I'm going back to the Topamax because my hair never fell out or anything, and I didn't feel mental. Everyone reacts differently to different meds."

• Nev...
• Taken for 1 to 6 months
• March 14, 2016

For Migraine Prevention "I had a horrible experience with Topamax... I went 72 hours without getting any sleep when I started taking it. I got the tingly feeling, I couldn't sweat or cry, I was having hallucinations at nighttime, I had the foggy feeling constantly and couldn't concentrate. I was a horrible mess. I was only on it for a couple of months before I stopped. It has been about 5 months since I stopped taking, and I still constantly feel foggy, dizzy, off-balance like I'm drunk. I do not feel like myself at all, and I'm nervous that this medication has caused permanent damage."

• AGa...
• April 28, 2021

For Migraine Prevention "I was given topiramate for headaches. It did somewhat help with headaches, but side effects were terrible! On 50 mg, I experienced shortness of breath, psychomotor slowing, breast pain, flushing, awful mood swings, tingling in my hands and feet. An ER doctor told me the medicine would not cause psychomotor slowing. I saw a neurologist who increased my dose to 100 mg. My most recent symptoms were pain/pressure in my eyes, forgetfulness, trouble sleeping, tingling in hands and feet worsened, brain fog, memory issues. I felt like I was going crazy! I even had an abnormal EEG and a neurologist still said it wasn’t the meds. Convinced it was, I stopped the medication. I have only been off for three days, and the tingling has stopped, the pain/pressure in my eyes is gone. I feel more focused and like myself again. I am sleeping better and feel better overall. This is a terrible medication! Please be aware of the serious side effects!"

• Anonymous
• Taken for less than 1 month
• June 15, 2013

For Migraine Prevention "I started Topamax two days ago. I was very scared to try this medicine because of all the side effects and put off trying it for years. So far, I have had the numb/tingling extremities and what seems to be a bit of a brain fog (trouble focusing, recalling words). I also noticed that soda doesn't taste the same. I drank one today, and it was HORRIBLE! I also feel really lightheaded. I am determined to ride this one out for as long as possible, though. I've tried most other medications without success, so this really is my last hope."

• You...
• Taken for 1 to 6 months
• February 26, 2016

For Bipolar Disorder "I started noticing the weight loss at the end of January. I weighed 235 and was down to 220 in a month without trying to diet or exercise. I was taking 100 mg then up to 200, and now 300. I weigh 209 to this date. 26 pounds in 56 days. My mind is foggy, I feel like a zombie, some days I can clean for 5 hours, I have migraines when I've never had them before in my life, my knees are in pain, my throat hurts, a numb feeling all over my body. Doctors screw you over, so be careful. I'm on a vegan diet for the past 5 days. Will update after another few months to see more of the symptoms and weight loss."

• Pra...
• Taken for 1 to 2 years
• October 14, 2021

For Migraine Prevention "I’ve been getting migraines since I was a little girl - I’m 26 now. Last year, I was getting roughly 20-25 migraines a month. I begged my doctor for a solution, and finally, topiramate was introduced to me. I was prescribed 25mg - to be taken nightly before bed. Fast forward a year later… these laundry list of symptoms I’ve never had in my life: crippling anxiety, severe depression, numbness in my hands and feet, brain fog, inability to form sentences, emotional outbursts (followed by excessive crying), excessive urination, dry mouth, zero appetite, constant nausea, shivering when it’s normal temp, overly hot when it’s normal temp, cold sweats. I’m sure I’m forgetting quite a few more. Is having 1-3 migraines a month opposed to my regular 20-25 worth it with these side effects? Absolutely not. I’d rather have the migraines. I’m weaning off this drug as I type this. I want my life, body, and mind back. Pray for me, please."

• mig...
• Taken for 10 years or more
• September 22, 2016

For Migraine Prevention "My migraines always last 8 1/2 hours of pain and nausea with 1/2 hour aura and 2 - 3 days of pain after. I started on this 10 years ago at 1 x 25 mg pill each night before bed. Since starting, I've only suffered from 4 or 5 migraines. I used to have 1 migraine every week or 2. I've spent less time worrying about when I'd next be suffering. But the side effects were terrible. Brain fog, slowing of mental and physical activity, memory issues, confusion, speech and language issues, trouble concentrating, and increased anxiety were the worst, I haven't felt like myself in years. I also had fatigue, insomnia, depression, eye problems, tingling extremities, weight gain, and occasional dizziness. I stopped it 2 months ago and am still migraine-free so far."

• cat...
• Taken for 2 to 5 years
• July 29, 2017

For Migraine Prevention "I started having menopause migraines in June 2014. My doctor started me on 25 mg daily. At first, this medicine helped me, but my migraines started to get more frequent. Over the course of 2 years, I was bumped up to 400 mg daily, the max dosage. I always felt that my head was foggy, memory was shot, problems speaking, losing sleep, no appetite, and more and more intense migraines. This medicine quit working too. I finally stopped this medicine in March 2017. I immediately noticed a difference in my head. To say this medicine is evil is putting it mildly. Your migraines can get worse while taking topiramate, and unless you pay attention to your body, you won't realize it is the medicine making them worse. Beware when taking this medicine."

• Anonymous
• September 6, 2011

Topiramate for Migraine Prevention "I have suffered from migraines for about 14 years. Took Topamax for 8 weeks. At 100 mg a day, I was having moderate headaches every single day, but no migraines. BUT the side effects were just too much: terrible anxiety, irritability, diarrhea, complete brain fog, intense tingling in fingers, numbness in feet, extreme sensitivity to cold, very frequent urination, changes in taste leading to disinterest in food. I also would not recommend this medication if you are also on birth control pills to alleviate menstrual cramps. That was one of the worst side effects for me - daily cramps for over 3 weeks. If it weren't for that and the anxiety, I may have tried to wait it out."

• Mar...
• Taken for 1 to 6 months
• February 2, 2018

For Migraine Prevention "Having come off propranolol as it ceased to be effective in controlling my migraines, I was prescribed topiramate by my neurologist. I was started on a low dose, which was increased over time. I didn't notice any substantial improvement - I still needed to take sumatriptan - but what I did encounter was a whole heap of side effects: inability to form words; struggling to complete a sentence because I couldn't remember the word I needed; slurred speech; and my mind being foggy and my memory being non-existent. Those were the ones that caused me the most problem. I also experienced more anxiety and irritability. However, my wife and son noticed me losing my temper (something I never used to do), and I became aggressive and snappy and generally not a nice person to be around. I eventually saw my GP and agreed on a timetable to wean myself off the drugs."

• New...
• Taken for 1 to 6 months
• March 12, 2021

Topiramate for Migraine Prevention "For the first few weeks, I suffered the typical side effects of brain fog, tiredness, tingling in hands and feet, and occasional stomach issues. However, after a month, these largely disappeared, as have my migraines. I plan to carry on for a few more months, as my doctor said it can take 3 months for the benefits to be fully realized."

• Hel...
• June 20, 2021

Topiramate for Migraine Prevention "Migraines: I’ve been up and down doses from 25 mg to 100 mg, lost weight on the 100 mg but felt shocking! Brain fog, irritation, food smells awful, no energy, anxiety, mood swings, suicidal, etc. Then I cut right down to 25 mg, but my migraines came back, and I’ve started upping it again and am now on 50/75 mg a day. But now back to all the symptoms I had before! It’s like a seesaw of finding the balance to be okay, but I’m not hopeful."

• Ash...
• March 1, 2017

For Migraine Prevention "After my first pill, I felt like I was going to die on this medicine. My mind blacked out. I could not think clearly. I collapsed. I could not remember anything. I could not feel my body. I could not walk. It was terrifying. I was home alone. It was not a good experience!"

• Ell...
• July 1, 2018

For Migraine Prevention "On Trokendi XR, I started having brain fog and confusion. Instead of having a full migraine, I experienced a headache halo with a heavy head feeling. I was disoriented. Waves of thinking that this medicine is tolerable, that I needed to adjust, and then feeling like I was so done. Brain fog lifted, began noticing clumps of hair falling out and no migraine, strange. I felt like I just dropped acid and I'm waiting for it to kick my ass. The next few days, my equilibrium felt off. If something took my attention off of my current task, I would forget every detail about what I was doing and would have to retrace my steps to get back. The cognitive effect of this drug is terrible. The doctor was going to get me all the way up to 100 mg on trial packs, then lay it on me at $820.00 monthly prescription. I'm so glad that I decided to get off. I have been off of it for 2 days, and my mind is starting to clear up. It builds up in your system and takes a while to flush out. My insurance plan didn't cover this med."

• fuz...
• May 13, 2016

For Migraine Prevention "I've been taking topiramate, 50 mg twice a day, for several years. At first, it worked great, and I was recommending it to all my migraine-suffering friends, but gradually, week by week, I seem to have built up a resistance to it, and recently, the migraines are back with a vengeance. I have a condition that causes the migraines, and I get them most days now. Also, I can only take paracetamol, as I take blood-thinning medication, and it doesn't work for me at all as a painkiller. The side effects I personally get with topiramate are negligible compared to the pain of migraine, I have 'brain fog' now and then, temporarily forget words, people's names, etc. But it's back to the doctor again now to ask for an alternative preventative - if there is one."

• KPa...
• May 19, 2020

For Seizure Prevention "I have sleep-related seizures, which result in me screaming out, jumping in fright, shaking, and biting my tongue/lip/cheek. Since even taking the lowest dose as the starting point of 25 mg, my sleep is totally calm. It’s so nice to not wake in fright during the night with blood in my mouth or to be screaming so loudly my voice is hoarse all morning. I used to awaken some nights thinking that someone was shaking my bed to shut me up, but it must have been my shaking which vibrated the bed. Also, my appetite is greatly reduced (bonus!), and I have no interest in that sneaky afternoon glass of wine to relax. My afternoon coffee is just fine! The medication takes a few weeks to adjust to, and you must start on the lowest dose and very slowly increase over time - you are much less likely to get that foggy feeling. I think it’s a miracle medication, and I love it!"

• rf6...
• Taken for 2 to 5 years
• March 30, 2022

For Migraine Prevention "Definitely helped reduce migraines and seemed to have a positive effect on my seizures — I haven’t had one since I started in February 2020. The weight loss is a nice addition, too. However, I now have long-term memory loss and occasional slowed thinking and difficulty finding words. I wasn’t a genius before, but I definitely feel dumber now. I know now why they call it “Dope-a-max.” I would try something else due to that, but I know the weight will come back on once I go off of it, and I don’t want to mess with my migraines possibly starting back up. So I guess I’ll continue to be a skinny, migraine- and seizure-free idiot. Insert shrug emoji here, amirite?!"

• ste...
• Taken for 1 to 6 months
• December 17, 2016

For Seizures "Topamax is an uncertainty at this time. I took it decades ago, and because no med or mixture of meds controls seizures sufficiently for me, I'm circling back. I've noticed major neurological feelings (e.g., tingling) transmitting down my legs to the point that it keeps me awake for many hours, which results in sleep deprivation and then seizure activity. It's not good at night. One reason I stopped the med years ago is because it can cause kidney stones. Not anything I want on top of seizures, plus the tingling, fogginess, and fatigue caused by Topamax."

• klo...
• July 14, 2016

For Weight Loss (Obesity/Overweight) "I only took this medicine for 1 dose (25 mg) because it made my eyes fire red. So red that people were like, what's wrong with your eyes! It took about 24 hours for it to go away. I had a pharmacist tell me not to take it, then the doctor told me to use Visine, so I just didn't take anymore after reading the black box warnings. I didn't feel hungry like I usually do, but I did feel pretty foggy."

• Fpe...
• May 20, 2021

Topiramate for Epilepsy "I had issues with finding words on this drug, and to be honest, it is a little bizarre. At times, the drug will make you feel a little loopy, especially if you haven’t eaten anything. I hadn’t noticed anything with weight loss. I eat a balanced diet and work out quite vigorously. I started it at 244 pounds and am at 242 pounds. If you are looking for some miracle weight loss drug, then it may not be for you. My neurologist even said that people come in and want it just to lose weight. I was prescribed it as I already take Lamotrigine. My neurologist said it would be a good combination. I was planning on going off of it because of forgetting the words; however, I am going to stay on it. It is either a minor side effect vs. seizures."

• Anonymous
• Taken for 1 to 6 months
• January 27, 2021

For Migraine Prevention "I have tried just about every migraine medication in the book, and topiramate was the worst. First day, I felt like the whole world was full of static. My face went completely numb for long bouts of time, longer than 24 hours at a time sometimes. After that, I noticed a huge problem with brain fog and impairment of thinking. This drug is also known in (younger) migraine patients for causing severe mental health changes. I’ve known people who became suicidal within the first week and were relieved of depression when they stopped taking it. It did decrease my migraines some, but did not stop them."