Baby aspirin is my new emergency migraine med. For several years I took Advil (ibuprofen) or Tylenol Arthritis (acetaminophin) as my rescue med. Doc prescribed amitriptyline which worked but turned me into a zombie, so I never took it unless it was a weekend and I planned to be in bed all day.
I had a migraine attack yesterday—took 2-3 baby aspirin (which I guess would equal a full dosage of aspirin, not sure how different the two are in chemical makeup if at all, besides just dosing differences?) and poof— migraine improved within an hour. Took two more an hour or two later and migraine totally gone. You think doc would have recc’d it to me, but she only recc’d excedrin migraine, which I told her I didn’t feel comfortable with because of the caffeine (already on stimulant for other condition) and now I wish I had looked into using aspirin by itself sooner to control my migraines.
Neurologist had me on Topamax (topiramate) and I was also on another diuretic for hormonal acne (spiranolactone). I drink a ton of water like probably 200 oz a day—so I never thought dehydration would be an issue. However, no matter how hard I tried or how consistent I was with my topamax I always got migraines at the 24 hour mark as the medicine wore off.
Athough I am not a doctor and can’t prove for certain, I suspect now that many of my “migraines” may have been dehydration headaches. Since first decreasing and then finally fully stopping topiramate fully and going down on my spiranolactone (25mg a few times a week vs. 50 every day) 2-3 months ago, my migraines are 2x a month versus 5 or 6 days a week.
I also ocasionally take migraine relief by Hylands, which helps as well.
I’m sure this post seems silly. Like who hasn’t tried aspirin? Or realized they might be dehydrated because of a med? But I wanted to share my experience in case it helps anyone else.

Hi guys- I’m 20, and I just found out this past Monday.
I had grown up with tension headaches nothing too bad until this last year I had what had seemed to be at the time ( the ER claimed it to be) an ocular migraine but now I had the exact same one on Tuesday and we’re leaning towards focal seizures, I cannot speak or see partly out of my right eye while there is also flashing lights in the corner, my head shakes and jaw clenches. But I also my first tonic clonic with tongue bite and all 3 weeks ago.
This is all so new and how in the world do I wrap my head around it ? I was living on my own, working in a doctors office, in my last years of my bachelors in psych and by the graces of the universe 3 weeks ago I knew I needed that Friday off and I had to go home for the weekend early ( visiting my parents at home 3 1/2 drive away). I wouldn’t have been with my parents normally but I knew I needed to be because my world was about to change.
The emergency room put me on Topamax and it was awful, granted it was only two weeks but I felt like I was talking like I was stoned all the time and just couldn’t think. (Which brings me to another question how does weed play into epilepsy?? I was a stoner but I don’t want it to be a trigger, it’s helped my headaches and migraines).
My neurologist put me on Zonegran which so far has felt good- working my way up to 300mg starting 100mg week 1 and so on.
Driving was also my HUGE escape im just at a loss of how to even process this. I’ve been in therapy for 8 years and hell I’m going to school to be one and I just feel so stuck.
Moving back in with my parents is also such an adjustment but something scary was one of my episodes that I completely ignored which I shouldn’t have, my bf actually remembered and picked up on was one morning in February I had woken up and gotten fully ready for work then I remember turning around spinning falling to the ground and then waking up 20 mins later and just being worried about being late to work.. so with these episodes and an abnormal EEG- here we have it I’m coping with having epilepsy. It just doesn’t seem real even writing this. 20 years of my life has just been well normal and now this is my new normal. It’s just a lot.
You all are so resilient- your words have already helped so much. I’ll take any advice I can get. Thank you 🤍

Kicking off my Effexor journey…tomorrow. I say this because I keep putting it off out of fear of the onboarding and withdrawal symptoms when titrating off. My neurologist prescribed a week at 37.5mg ER then to switch to 75mg until my three month check in. Getting nervous to take though low key feeling this may be more manageable than the constant dizziness, aura in vision, migraines, light and sound sensitivity triggers, vertigo attacks. I have a one and two year old and am terrified that I will become emotionally unavailable for them and not be able to feel fully present starting Effexor.
Anyone have experiences and success with Effexor for vestibular migraines? Looking for encouragement to finally kick off this treatment as the vestibular migraine symptoms are truly SO debilitating. Looking to avoid topamax because many side effects are literally what I’m trying to solve with medication.
Any tips as I onboard other than taking same time every day and with food? Anyone recommend morning vs night?
Thanks in advance!

My doctor prescribed me propranolol to take for migraines, constant headaches, and possibly help with my tremors. She said if I didn't like it though she would switch me to Topamax. I'm nervous about the beta blockers because even as a smoker my blood pressure never gets high. She told me I could increase my sodium intake if need be but my feet swell if I do that. Anyone have any thoughts or advice? I'm already on buspar and zoloft.

I’m current 6.5 weeks and I’m truly miserable and have been crying day and night. My OP was 29.5 (rounded up to 30) back in 2021. Couldn’t tolerate topamax/diamox so I have been on Lasix since early 2022...about a month before becoming pregnant I was starting to experience lightheadness and was advice to drop to 10mg I unfortunately gained about 25lbs as well before getting pregnant and this pregnancy was definitely unplanned I’m 25 and just recently graduated. So a lot of variables. My NO just told me no more Lasix and said get a c-section bc im high risk. I’m already symptomatic and I have hypochondria and I am terrified and miserable, I’m having so much nausea (no vomiting) and can’t even eat or drink water, but I force myself to, and I feel miserable whether I’m full or have an empty stomach. My head hurts and I’m scared to walk around because my mind is telling me what if i collapse..I get dizzy google says it all is possibly early pregnancy. My mind is saying what if it’s IIH flaring and I’m ignoring an emergency. Tylenol barely helps..only my mom knows (I’m scared to tell my father and siblings) and I feel so alone my partner and I weren’t on the best terms when I found out, he’s trying to be there for me but I don’t want him around me. I just keep crying because I don’t know what to do. I feel horrible for considering termination but then I’m scared of termination recovery. I’m scared if my body can take carrying full term.
How were you all able to tell what was simply pregnancy symptoms vs IIH? I don’t do well with physical discomfort (the hypochondria) but this is also my first pregnancy I don’t know what’s normal for me. I’m just so scared and feel alone. Any advice/ genuine prayers/words of encouragement are appreciated

Hello! I was given samples of Qulipta that lasted for 2 weeks and then found out insurance won’t cover it (or nurtec). Of course the Qulipta worked, but my insurance insists I have to try other methods before going back. Got approved RX for topamax and I don’t know if that’s the right decision. Does anyone have any experience with switching from one of these to the other? Any insights? TY!

I (29M) apologize for a lack of brevity; after ~8 years of working to sort out Psychiatric concerns, I've recently been diagnosed with migraines.
Thanks, in advance, for anyone who is/has been willing to read and respond to my "short novel"...
{All information in this post is a result of my best effort [over the past ~2 months] to learn about migraines, both: in general and in my circumstances; If I've misspoken or presented erroneous information at any point, I apologize ahead of time.}
​
Hopefully, others might be able to relate to some or many of these experiences, provide insight into several questions: presented near the bottom of this verbose post, and potentially provide a sense of guidance to someone: like myself, who is seeking to learn.
​
It wasn't until a few months ago that I could strongly assert that: some of my symptoms did not fit well into the domain of psychology: Namely, What I now understand as being, perceptual distortions within Alice In Wonderland Syndrome (AIWS). But to recap the past ~8 years, roughly...
Psychiatric Diagnoses:

• Generalized Anxiety Disorder (GAD)
• Bipolar Type 2
• Social Anxiety
• Avoidant Personality Disorder w/ Masochistic traits
• Cannabis Dependency Disorder (Edit: in remission)
• PTSD (w/ Depersonalization/Derealization) [Albeit, mild; and I'm not certain to what degree the DPDR is attributable to PTSD: as opposed to being part of AIWS and a presentation of migraine {Aura?}]
• High-Functioning Autism (mild, ASD)

The hard part for me to reconcile is that: I've never given much thought to "Migraines" because I almost never have had the stereotypical 'Attack/Headache'. The only clearly notable time in my life that I had such was back in 2016 during my first clinically-significant Major Depressive Episode (which was preceded by Acute Anxiety, and accompanied by a small degree of psychosis: prior to seeking medication).
During this obviously stressful time-period, I was developing episodic abdominal pain: which lead to an ER visit [Concluded as a somatic manifestation of the anxiety and stress of everything else: which seemed faisensible]. I was also experiencing the more typical, intense, pulsating, migraine headache: on a ~daily basis... Unfortunately, I just assumed that it was a similar manifestation of stress and depression: given that, before this point, I had no understanding of either psychological symptoms or neurological symptoms.
I now understand that: the abdominal pain could have been a presentation of migraine (precipitated by the stressors), and the headaches were not simply a symptom of Depression (and the excessive fatigue that followed these attacks was far more likely Postdrome symptoms: rather than just depressive lethargy).
​
Stepping forward to 2019, I was working with a psychologist to try to understand about certain 'abnormal' symptoms. I did my best to convey what these experiences were like: seeking to learn if they were Psychotic symptoms, Dissociative symptoms, or something different altogether.
Unfortunately, I could only talk about them in a circuitous manner, given their nature; and as a result it seemed like we never shared a mutual interpretation of any conversation held over the ~3 month period that I worked with this Psychologist. Eventually, after it seemed clear to me that he was unable to help me gain any further understanding, we decided to part ways and he diagnosed me with having **Schizo-Affective Disorder -> ~**A Combination of a psychotic disorder and mood disorder (Seen as Depressive type, at that time).
This diagnosis really didn't sit well with me: as it didn't fully align, and it felt like he diagnosed these symptoms as such in a manner that was more like a consolation prize than a verification that the symptoms accurately matched the diagnosis. I digress... [I did, however, separately, seek an MRI: to just check for the obvious, potential neurological issues; it came back Negative.]
​
Jumping forward to the present, I wouldn't say I experience that I can easily recall any other times that I've experienced headaches of such (what is now understood as) clearly Migraine Attack nature. Unfortunately, these various 'abnormal' symptoms still seemed to be falsely attributed to inaccurate diagnoses or never addressed in any regard. So I sought a referral to a neurologist to help assess these concerns from a perspective beyond that of psychology.
​
The neurologist spoke briefly about 'silent' Acephalgic Migraines and Alice In Wonderland Syndrome. I knew about AIWS, only slightly, because I had looked up Macro/Micro-Somatognosia: A distortion of one's body-size (LargeSmaller) than it should be. (Proprioception/Kinesthesia: the sense that lets us perceive the location, movement, and action of parts of the body, would be the 'Sense' that is perceived in a distorted manner.) I had looked into Somatognosia, as it was one of the handful of symptoms I had been trying to convey to the aforementioned Psychologist; at the time, however, I felt that "Alice In Wonderland" seems like some far-fetched rarity of a condition/diagnosis/etc ...
Welp, after an Negative result on an EEG (checking for Epileptiform Discharges), he diagnosed me with "Migraine Aura without headache - Migraine Equivalents" and "AIWS" (Which we both acknowledge doesn't have an official DSM or ICD code, as of current).
I felt completely comfortable regarding the AIWS diagnosis. After all of these years and ruling out almost all reasonably applicable psychiatric diagnoses: accepting those that do fit, it's relieving to finally have the understanding that: The predominate, outstanding symptoms were/are perceptual distortions [Where the person is cognizant of their abnormal experiences and can retain the ability to reality test] (as opposed to Hallucinations: Positive symptoms within psychotic disorders, or Illusions: a more significant misattribution of stimuli).
I'm glad that I can put a name to many of my otherwise difficult to describe past experiences in childhood:

• Baader-Meinhof Phenomenon: When something newly experienced then start to seemingly show itself everywhere.
  • Example: You become pregnant and start seeing signs of pregnancy everywhere. The prevalence of pregnant women in society hasn't magically increased, but you're instead more cognizant of the subtle signs and clues that cue you into the fact that this person or that person is likely expecting a new baby.
  • Personally, this was always apparent regarding math. Whatever I was learning about in math class: be it Geometry, Calculus, Statistics, I would start to seek out and apply that information to every applicable aspect of life. I'll always remember most of Calculus as a result of associating Integrals & Derivatives to the motion of a car.
• Deja Vu: A new environment feels familiar.
• Jamais Vu: A familiar environment feels unfamiliar.
• Presque Vu: Feeling like your on the cusp of some epiphany, breakthrough, or divine understanding.
  • Like having a word on the tip of your tongue, but far more intense.
• Deja Vecu: Feeling as if you've already lived through a specific sequence of events.
  • The stimuli of the past ~5 seconds feels as if they're, somehow, something you've already experienced and have lived through.
• DePersonalization: ~detachment from ones body (For me, it feels like my body is running on 'cruise control/autopilot'...
  • I know that I'm making cereal of my own volition {Because I want and intend to eat cereal}, but the bodily (Kinesthetic) movements don't necessarily feel like they register as strongly as normal
    • It's like how it feels when your car still accelerates when going up-hill, with the cruise control set, and you simply don't feel the same feeling: the feedback of the caengine traversing through the peddle and to your foot, as if you had to press the accelerator manually.
• DeRealization: Feeling as if reality is not 'real' or lacks fidelity.
  • I often experience this with many of the 'Vu' Phenomenon
• Quick-Motion Phenomenon [TachySensia]: an accelerated distortion of one's psychological sense of passing of time: often people feel they are moving or sensing things more quickly and commonly perceive external sounds as louder than typical [~Hyperacusis].
  • Example: It feels like when you're playing Super Mario games and Mario hits the Star, becomes temporarily invincible, speeds up slightly, and the hear the extra sound of his altered state "Det-det dah... det-det da-det-det, da-da dah... da-da da-da-dah..."
• Macro/MicrOpsia: Objects appear largesmaller than they are.
• TelOpsia/PeliOpsia: Objects appear furthenearer than they are.
• Macro/MicroSomatognosia: Feeling like one's body or part of oneself is largesmaller than it should be.
  • Pink Floyd*- "Comfortably Numb"*: ... When I was a child, I had a fever. My hands felt just like two balloons. Now I've got that feeling once again; I can't explain, you wouldn't understand... This is not how I am...
• ProsoPoMetaMorphOpsia: Distortion in the perception of peoples' faces.
  • Think Picasso/Francis Bacon paintings...
• Time Perception Distortions: A Distorted sense of the overall passage of time (Not quite the same as Accelerated psychological time: TachySensia*, or Slowing of psychological time:* Protracted-Duration*.*)
  • For me, Deja Vecu causes me to, at times, enter an almost delusional contemplation of whether: life is deterministic (Free-will vs Determinism debate), if reality is a form of simulation (Simulation Theory), or if everything I perceive is merely a figment of my own imagination (the Philosophical concept of Solipsism)...
    • These, and thinking about synonymous concepts: Reincarnation, 'Nietzsche's doctrine of eternal recurrence', creationism, divine-will/plan, etc., often cause me to question the overall passage of external time.
• HypnaGogiac Memory Intrusions: Visceral perception of memories, akin to PTSD Flash-backs, which occur within the transition from being awake to falling asleep.
  • For me, I experience a recurrent 'memory' that is a blend of several memories... but it's usually annoying (Intrusive) because it induces a mild emotional fear: despite the 'memory' not actually being representative of a distinct singular past event...
    • There are HypnaGogic 'Hallucinations': Awake -> Asleep
    • Moreover, HypnoPompic equivalents: occurring in the transition from Asleep -> Awake

​
Over the past 2 months, I've gone from knowing relatively little about neurology towards knowing a great deal more; but my knowledge of the domain: the presentation of migraine equivalents, specifically, is still something that seems a bit hard to grapple with.
​
I've more recently asked family members if they have ever had such experiences: AIWS symptoms or Migraines. Come to find out: my maternal-maternal Great-Grandmother had Classic Migraines w/ Photo-phobia, and several days of post-drome hangover; my maternal Grandfather had some form of migraine that would wake him up in the morning: for which he was given Tylenol + Codine (Tylenol 3?); and my mother herself has Classic Migraines w/ typical aura symptoms but a more dull headache.
​
I'm hoping some of you might be able to provide me a greater deal of insight regarding two specific experiences; I presume they are, in fact, quite common within migraineurs, I just have yet to understand the best way to describe or categorize what these experiences happen to be.

• First Question: My maternal grandmother recalls her mother attesting that: Once the migraines began, if she would end up puking, then everything became, almost instantly better. As to discuss it in a manner as to imply it was almost something to look forward to.
  • I, myself, have always had a similar sense: I experience some degree of 'Aura' (although I'm unsure how to describe it, as it might be more of a somatic sensation: rather than any typical, visualized aura) after which I know that I will puke soon [~5-15 minutes]. Once I puke, which I often look forward too (and even sometimes induce), everything returns to normal, almost immediately.
    • Do you experience such relief from puking, when experiencing certain migraines?
    • If so, Do you know what type of migraine they are classified as (for you); What kind of Aura do you experience that is indicative that you're almost certainly going to puke? How prevalent or frequent is this experience for you: Every Migraine, "X" % of Migraines, Once a month, a few per year?
• Second Question: My mother and I have talked about her migraines: the typical visual auras she experiences [They start with Dark Scotomas followed by Scintillating Scotomas/Fortifications, Jagged Lines, Colorful 'Visual-Lightning': which cross her field of view] and the dull headaches that follow.
  • When discussing the dull headache, she indicated that it wasn't the pulsating, severely debilitating headache one would commonly attribute to migraines. She said it was more akin to eye-strain. I mentioned that whenever I've felt such**, "it feels like someone has placed a suction cup on my eye and is slightly pulling on it",** like there's a pressure on/around my eye, or a sense of strain in my eye-socket. She agreed to that general description, mentioning that: for her it's not necessarily debilitating and she can still function; it's still unpleasant, but of a mild severity.[I recognize that vasodilation is said to be one of the main components of the 'Pain' side of a Migraine Attack. Nociceptors, CGRP, Meninges, the Trigeminal Nerve, etc...]
    • Do you experience migraine attacks as a ~dull, non-pulsating, yet: persisting and unpleasant, form of eye strain/pain?
    • If so, Do you know what type of migraine they are classified as (for you); What manner would you use to convey this sensation/pain? How prevalent or frequent is this experience for you: Every Migraine, "X" % of Migraines, Once a month, a few per year?
• Lastly, If you experience any of these symptoms, What, if any, medications have you found to be helpful (For prophylactic use); and how many months of use did it take for your medication to seem efficacious? {It appears a trial for a migraine prophylactic is intended to be a minimum of 2-3 months: assuming no adverse side-effects present.}
  • I've trialed ~31 medications over the past ~8 years, for psychiatric symptoms, a fair number of which are said to be merit-worthy for migraine prophylactic use. I already have a curated 'Short-list' of medications that are even left for consideration.
  • I'm not in need of an Acute/Abortive medication, since: by the time I'm aware of any of these experiences, they're already, mostly, over... I don't have any current cognizant awareness of Prodrome symptoms that would be of any precursor to the actual symptoms.
  • I'm not seeking any form of direct medical advice (Rules #1 & 2)... Just simply asking about whether anyone has had similar symptoms and better luck with something like Propranolol (Beta-Blocker), Topamax (Anticonvulsant), Etc.

​
I feel reasonable knowledgeable regarding the general discussions to be had; but it's just a bit difficult to grasp the high degree: of variability for which migraine presents for different people. Moreover, with regards to my circumstances, I don't necessarily experience much, if any, headache/attack
I'm sure those who have migraines of any form can understand how an atypical presentation can contribute towards making it hard to know what other experiences are temporally-associated symptoms, and how this dilemma would make it difficult to determine what route is most sensible to take: for forward-looking treatment efforts.
​
Thanks again.

I've had a complicated run with with VSS. I never had it or any symptoms before. I've interacted with quite a few of you on here before and made some friends (hi guys!).
I majored in neuroscience. Spent 5 years studying the brain we grew to hate. Long story short, due to lack of availability of neurologists, I had a neuro who put me on zoloft and gabapentin simultaneously (initial complaint was migraine w aura, parasthesia), I developed what I know now is visual snow. It got really, really bad once the doctor ramped the zoloft though.
Anyways fast forward over a year later - I have a cluster of symptoms. I got a neurologist who is Princeton and Harvard trained in New Jersey, for anyone who is in the states and in NJ. His name is Dr Eric Geller. He's very familiar and welcoming to helping the condition. Reach out if you want. I work with him in the operating rooms as well as his colleagues (we do deep brain stimulation for parkinsonism, and epilepsy. I work with very, very good neurosurgeons.)
I also have partial seizures (genetics and brain injuries- I ride motocross, snowboard, skateboard. Last concussion was Jan 4th.)
Wirh dr geller, I reinstated topiramate. We are titrating up again slowly. It's not a cure all, but my tinnitus is lessening. Once I get to around 75-100mg, my after images lessen, photo phobia gets better, headaches decrease, and my static is a little softer.
Topamax has a horrible reputation. But if you dig, you'll find it actually is the only neuroleptic with neuroprotective properties. In addition, it modulates both Gaba and glutamate. So it has helped my motor issues from tremors, along with other VS problems.
Again, not giving medical advice- but this thread is filled with doom and gloom for the most part. This med combined with atropine eye drops from the floater doctor in TX have kind of given me a semblance of a normal life, for now. (Sans seizures or other issues.)
So why am I posting this- because, people recycle the same things on here over and over. So If this is useless- skip it. But if you haven't tried low dose topiramate with a GOOD neurology doc, maybe give it a shot. It's controlled my symptoms to a point where I live very comfortably, and sometimes I don't think about VS. And I didn't Have a light case of it - my doc told me on the intake "boy, you really got the mixup of symptoms don't ya?"
Also, I've been in cognitive therapy for about a year. I mix everything as best I can. Feel free to reach out.

Hello! It currently feels like my neck is turning into wood and I have an ice pick right in my eyebrow and my dorm neighbors are blasting music. I’m in my third year of undergrad and generally a really good and ambitious student. I’ve had migraines for a while, but had gaslit myself into thinking they were headaches and normal until they showed up on MRI and about 50 people told me that dying everyday isn’t normal. But quite recently my migraines have been getting much worse, and it feels like I’m getting them most when I Really need to be functional.
This January, I had a month-long class during which I was non-functional for 2 weeks after a disastrous Topamax experience. I now have two essays to turn in for an “incomplete” deadline by Sunday. These should be well within my capabilities as it is a lower level class in one of the subjects I do extensive research on, but it genuinely feels like everytime I sit down to try to do them, I get the worst migraine in my life to the point where my computer screen makes me want to tear my eyes out. And I don’t even feel That anxious, so idk if there’s some self-conscious worry or perfectionism that’s messing with me or if it is just that I Happen to be working on this after I’ve exhausted myself through other triggers.
Please Please, do you have solid advice on how to navigate college with stress-induced migraines? Or how to work when one is occurring? What part of this is psychological vs physical? How do I emotionally not stress myself out or shut-down over having inconvenient migraines?
(I respect and truly admire those of you who chose to find paths outside of academia and prioritize your health in that specific way. Although I am working on radical acceptance in other ways, I personally am not ready for that decision yet—I still want to see if there are ways for me to continue doing this work that I love in this academic environment.)

Can someone please explain the difference between these two to me? I keep hearing horror story after horror story about Diamox on this sub, and it wasn’t even brought up to me as a possibility by my neuro. I was put straight on Topamax and my symptoms were reduced almost immediately and I’ve noticed almost no side effects. All I’ve noticed really is a change in how things taste.
At first I thought Diamox might have been for worse cases (my op was 26, and I was only diagnosed based on other symptoms and slight papilledema), but there are people on here with lower pressures being prescribed it too, so I don’t think that’s it either. Is topamax less effective overall? Is it just less studied? Or am I right in being weirded out that everyone seems to be getting given the medication with worse side effects?
Editing to add: I’m doing a bit of research on my own and it’s not turning up much, just that Diamox is considered the primary treatment. I wanted to add that I was put on topamax when iih was suspected but not diagnosed. I was technically put on it for migraines and my neuro said it would help if it was iih while we went through other diagnostics. My mom was on it for migraines when she was younger too and she has never even been suspected for iih. No other medication was suggested or brought up once I was diagnosed, I was just told to continue the topamax.

So my VSS has been pretty stubborn as anyone else's I'm not gonna stay on reddit much longer as I have a great new neuropsychologist and neurologist who are helping me manage things best I can and the whole feedback loop of on and off reddit and catastrophizing etc. We already know is not healthy. Anyway just wanted to share something anecdotal:
When I use 1mg clonazepam, and the lowest concentration atropine drops from the floater doctor, I have almost ZERO symptoms for a good 24 to 48hrs at a time. While I am not here to give medical advice or give opinions on meds, I'd like to hear thoughts about why this combo works so well and WHY doctors or researchers can't make something as a safe alternative to a benzo by now??
I hate taking them and really avoid it. I've had the same 30 of them since June. But to see and experience anecdotally that this combo of meds alleviates my symptoms, I find it important to share when we see things work for us. I just don't like that it involves a benzo. I've been on lamictal, topamax, gabapentin, keppra, and depakote, and those medications made me wish I wasn't alive. I tried so many doses and XR VS regular pills, you name it. Antiepileptics and mood stabilizers / psychotropic meds do not do well with my body. So, I ended up just getting off a lot of meds and My neuro for now just has me rotate low dose clonazepam as needed. For the most part I take it like once a week, sometimes I don't take it at all.
As far as symptom reduction: No static No wobbly vision No head pressure, eye pain, or migraine No anxiety (duh) Strangely enough, no ghosting anymore on text Phone, computer, tablet, in my car screen- it's gone (I usually have pretty gnarly ghosting vertically, specially with black and white contrast.)
Symptoms unaffected: Light sensitivity After images Halos / bursts etc. Visions a little blurred (I'd expect so)
Overall, right now, this combo is giving me the closest thing I ever remember for clear vision and comfortable days but I know it's only experimental for me right now. It's something im not gonna make a routine on. Just wondering why there's no other drugs they have figured out to get similar affects?? Anyway, wishing you all good health and a happy new year! !
disclaimer - I am not saying to use benzos in this post. I'm just explaining one thing that has actually worked in symptom reduction for me and hypothesizing why something Like a benzo that works on GABA receptors works, but supplements and other things that have similar mechanisms have not benefitted myself or others. Please don't think this is a thread where I am encouraging or suggesting what anyone does or takes for medicine. Consult with your doctors for that.

I’ve been on 75 mg of topamax for 2 days now working up to 100 mg. It seems whenever I try to drink some alcohol or after eating some foods I get a bad stomach ache/feel like I’m going to throw up even though the doctor said I should be able to drink some. I read last night topamax was prescribed off label to get people to help stop drinking but does anyone else get sick when trying to drink while on this drug? I noticed it was worse compared to being on 25 mg vs 75 mg.

I was taking topamax 25mg for a month and it worked really well for me. Unfortunately I developed horrible acid reflux as a side effect that was so awful I'm currently having to ween myself off of it. I've seen posts about zonegran being a good alternative for those who can't handle topamax. I was wonder if anyone here had similar stomach issues with topamax and switched to zonegran and didn't have those side effects? I've tried several different migraine preventatives so far and none have been as good as topamax. TIA

I was taking topamax 25mg for a month and it worked really well for me. Unfortunately I developed horrible acid reflux as a side effect that was so awful I'm currently having to ween myself off of it. I've seen posts about zonegran being a good alternative for those who can't handle topamax. I was wonder if anyone here had similar stomach issues with topamax and switched to zonegran and didn't have those side effects? I've tried several different migraine preventatives so far and none have been as good as topamax. TIA

Good afternoon, epilepsy. I am 36f and have had frontotemporal lobe epilepsy (it's bingo in Broca's area, for you neurologists out there) for just over a decade now. I am not a doctor, but I have taken two different medications for my seizures over time.
My doctor kept me on Keppra for years, and it had a very bad effect on my already borderline personality. (It is known to have a side effect called "Keppra rages" and I was VERY angry.) Levetiracetam also barely affected my seizures, but it did make them come is clusters of slightly smaller numbers. That is, I would have up to a dozen if I wasn't on meds, but only about half a dozen on Keppra.
Anyway, about a year ago I finally was put on something different: Topamax. I have mixed feelings about Topamax, aka Topiramate. I still have seizures, but they come in clusters less often. I sometimes can feel myself regain awareness quicker, but not always. Also, I often have partials that I feel could have gotten worse had I not been on this. The Keppra did not seem to help with partials becoming tonic-clonic.
The biggest problem I have with Topamax, though, is that it has made me a total idiot, especially with words. My seizures are in some of the brain dealing with language, so this may be part of the issue. Before the Topamax I only had problems speaking when I had seizures. Now, though, I have major issues with remembering words, especially names everyday. (I couldn't remember who the Watergate president was earlier today. 🙄) The difference, though, is that the aphasia I have during a seizure makes it so that I can't repeat the word, even if I've just heard it.
One more thing: my seizures are usually monthly, but I have breakthrough partials more often on Topamax than I did on Keppra, for sure.
So, in conclusion, I really never liked Keppra, and from what I've read about it, not many people do. Topamax is no miracle drug, but I would definitely say it's better than Keppra in many ways. I have also read that Topamax makes people kind of a ditz in general, so just be aware of that.
Thanks for your time! I hope you found this helpful! Remember: epilepsy sucks. 💜

I am working with a new medical team to try and get my weight under control. In addition to meeting with a nutritionist, a trainer, and seeing a therapist, I am also trying medication as prescribed by a licensed PA.
My insurance does not cover any official weight loss drug so we got creative. I was presented with the choice of topamax or metformin as if they were equally valid choices with no discussion of side effects. I had taken metformin 20 years ago so I thought, let’s try something new!
I guess shame on me for not doing more research but I got the topamax today and looked at the attached potential side effects sheet and…yikes. Then there seems to be perhaps conflicting information on which drug can help more?
Has anyone else taken topamax and had it been effective? It seems like a lot of potential issues for maybe not the best pay off? Kicking myself for not asking more questions but I tend to go in to these things with the attitude of “they went to school for this, not me.”

I do know we are all different and tolerant to certain medication more, but when it comes to being a safer option with the least side effects, what would you guys say is the best out of these three? I have heard about the terrible side effects from topamax, propranolol making people have chest pain, significant lower blood pressure, dizziness, and some side effects as well with amitriptyline.
Im willing to just finally give in and give one of these options a try.

Yesterday, after a year and a half, I finally got to see a neurologist! And he was almost speechless… I’ve been suffering 20-25 migraines day a month for years, and my PCP never suggested I see a neurologist. It wasn’t until I found this subreddit that I pushed to see one. My PCP had basically been throwing random meds at me, hoping one stuck, and that was about all she did.
The neurologist spent almost 2 hours with me, going over the “migraine diet,” what is and is not “normal,” going over my confirmed triggers, assumed triggers, symptoms, all of it. Everything. He said I’m technically classified as severely disabled.
He wants me on Botox, like yesterday. But I have to fail one more class of drug before my insurance will cover it. I’ve failed amitriptaline, topamax, and depakote already. I’m on propranolol for 2 months now.
I cried when I left his office because for the first time in years I felt seen and heard and cared for.
Now that the big step is done and everything was truly explained to me, I’m looking to find out the best accommodations I can ask for at work. Today I got cleared to move into a private office, so I’m away from the main thoroughfare of traffic and noise, and I can use warm-light lamps instead of fluorescent lights.
I don’t know what else to ask for. I’d like to be able to be in office vs telework (ADHD, separation of space/tasks). I already have FL-41 glasses and blue light glasses. My supervisor is aware of my migraines, and we’ll file FMLA as soon as I hit my one year mark.
What are some accommodations you’ve asked for and received at work?

Has anyone switched from taking the Brand name Topamax to the generic? I have been on Brand Topamax for many years and it is sooo expensive! I am trying to take the same dose of Topiramate now and am having bad headaches, but it has only been a few days. I’m wondering if I just need to get used to it?

I have been on Diamox for 3 months. I quickly ramped up to 4,000mg per day. My pressure went from 34 to 43 during this time (diagnostic LP on 1 August 2023 and therapeutic LP on 31 October 2023).
I have just started Topamax. Taking 3,000mg Diamox and 75mg of Topamax daily.
My question is for people who have been on both: what are the differences? I kind of hate that we’re changing meds right now. It seems like Topamax is affecting my mood.
I have stent surgery on 6 November so maybe I will ask to stop the changes…..
What do you think?
I’m not feeling well at all. And it’s a new kind of feeling poorly.

I have daily chronic migraines, and have done one infusion of Vyepti. I had a noticeable improvement, but it wore off completely three weeks before I’m due for my next infusion. Back to daily migraines, and I am extremely susceptible to rebound headaches, so my Neuro wants me to use an interim daily medication to get me through this next month. She recommended low-dose Depakote. I have trialed Topamax, and reported a mild side effect on a low-dose so it would be a fight to get her to give it to me again. She also recommended Cymbalta, but from what I’ve heard that’s not that effective for migraines? Has anybody tried any or all of these and what would you recommend as the most effective one that kicks in fastest for a short period like this ?