Topamax (topiramate) for migraine treatment in adults was first approved by the FDA (Food and Drug Administration) in 2004. If you have spent any time in migraine support groups on social media, then you have likely heard some Topamax for migraine reviews. If we were going only by these posts, we would have to conclude that the medication was simply not tolerated…by almost anyone. However, I wonder if we tend to not hear from the people that topiramate helped because they are out living their lives.
We decided to talk to our Private Migraine Strong Facebook group about their experiences with this much maligned medication to see what was up. It was eye opening and split almost 50/50 on topiramate being a life saver or a life ruiner. Stick with me while we talk about the good, the bad and the truly ugly about Topamax. I’ll also share my complicated history and give my review of Topamax for migraine.
**While Migraine Strong writes about the latest in migraine treatments, this is not medical advice. We are patient educators and all information you read should be discussed with your doctor.
Therapeutic dosing of Topamax for migraine
The average dose for Topamax is 100mg which is reached on a titration schedule over the course of one month. This is the most common ‘by the book’ dosing schedule that primary doctors would find when looking it up. The patient is prescribed:
- 25mg the first week
- 25mg twice a day the second week
- 25mg in the morning and 50mg at night
- 50mg in the morning and 50mg at night
There are some doctors that recommend taking the full dose at night so that the side effects are most prominent during sleep. Some doctors recommend taking the entire dose at night because the half-life of the medication is quite long, and it can more simply be taken as a once daily medication.
While this is a common dosing schedule, each doctor should prescribe Topamax based on the patient history and what they are trying to accomplish. Your dose might look different and could be higher or lower. Always discuss any questions about your medications with your doctor.
Realistic goals for reduction of migraine attacks
A 50% reduction in migraine symptoms and severity is the goal of all preventive medications. This is a figure that needs to be stressed by doctors and understood by patients.
I vividly remember my doctor telling me that we were going for 50% reduction and not a ‘total cure’. It’s important to have this conversation to make sure that there aren’t unrealistic expectations about what medication can do for us.
Are there super responders to meds? Yes. But if you aren’t one of them, that doesn’t mean the medication has failed you. Keeping track of your attacks and their severity can help you evaluate how much a medication is helping or not.
Birth control, pregnancy and Topamax
Topamax is not recommended during pregnancy due to an increased risk of oral birth defects such as cleft lip or cleft palate. (1) The use of Topamax with ethinyl estradiol birth control can make birth control pills less effective. This will typically occur at higher doses – 200mg daily or higher. Make sure to discuss this potential interaction with your doctor before starting Topamax. (2)
Topamax and carbonated beverages
One of the most common questions is does Topamax make carbonated beverages taste weird? In a word, yes. It’s a very common side effect with Topamax. Carbonated beverages tend to taste a little flat when Topamax is being taken. The good news is that it doesn’t last forever. Usually just a couple of months. Some people have said that they took that opportunity to wean off of carbonated beverages that had become a little too prominent in their daily routines.
Kidney stones with Topamax
Patients who take Topamax can show a depletion of citrate in the urine. This depletion creates an environment which can contribute to developing kidney stones. ‘Testing blood acid base balance, urinary pH and citrates in patients taking topiramate and suffering from kidney stones’, is recommended. (9) Talk to your doctor about checking these markers to limit the possibility of kidney stones. A 24-hour urine test might be appropriate if there is a history or kidney stones or a kidney stone develops while taking Topamax.
Hair loss with Topamax
Hair loss has been shown to happen when taking Topamax. However, it is not a common side effect being reported in 3-4% of patients older than 16. When the Topamax is discontinued, the hair loss stops as well. (3) Some members of our Facebook group have reported good results when using minoxidil to treat the hair thinning/loss. Check with your doctor to see if this is an option for you.
The good about Topamax for migraine
We asked for feedback from our Facebook group about their experiences with Topamax for migraine. The following lists were their experiences. The list of things that were considered good were:
- Weight loss
- 50% reduction in migraine attacks
- Calming of the brain to allow better function
- No side effects
- Great for vestibular migraine at menopause
- Was able to return to work, no side effects
- Improved background nausea
- Improved sense of smell (was not able to smell without it)
- Life saver
- Only medication that has ever helped migraine
For each one of these bullet points, there were multiple people who said the same things. I have consolidated them for brevity.
The bad about Topamax for migraine
- Brain fog, sometimes intense, word searching
- Lack of focus or concentration
- Weight loss, loss of appetite
- Hair loss
- Tingling in hands and feet
- Fizzy drinks tasting flat
- Burning and urgency with urination
- Crystals in urine, precursor to kidney stones
- Kidney stones
- Didn’t reduce migraine symptoms
- Cognitive issues
You will notice that weight loss appears in both the good and the bad lists about Topamax for migraine. If we are overweight and wanting to lose weight, it makes sense that weight loss would be in the good column. If we are already at an optimal weight, unintended weight loss would fall in the bad column.
The ugly about Topamax for migraine
- Lost the will to live
- Kidney stones, some requiring surgery
- Mood swings
- Burning mouth syndrome
- Extreme anxiety, angry and felt violent
- Hair loss, some bald patches
These are generally not symptoms that we should be expected to ‘live with’ when it comes to treating migraine. It’s always wise to talk to your family and friends when trying a new medication. Sometimes these symptoms become more readily apparent to them than even what we perceive.
Perceptions vs reality
Reading about Topamax for migraine reviews on social media will leave you with a sense that it is the very devil of a drug. Medication posts tend to go ‘off the rails’ on social media and there is rarely a balanced approach. Those that have had a negative experience are almost always more vocal than those that have had a good experience.
In the poll of our private Facebook group, the good and bad experiences evened out to a close split…48% positive experiences and 52% negative experiences. And it should be noted that our group is composed of many who have chronic migraine and are refractory to medications.
What to do if Topamax is prescribed for migraine
First and foremost, listen to your doctor and not the Topamax for migraine reviews on social media. If you have episodic migraine, you might be seeing your general practitioner. If you have chronic migraine, it’s best to see a neurologist or headache specialist.
Any doctor that is treating you for migraine knows YOUR medical history and is making a recommendation based on years of study and practice. It is a good idea to have a discussion with them about side effects that might appear. The pharmacist is another good option for discussing side effects to watch out for.
Topamax is one of the most effective preventive medications for migraine. (4) It has been used safely since 2004. However, some people have trouble tolerating the medication. And sometimes it is because of the above described dosing schedule. Those that are sensitive to medications might do better starting at a lower dose (12.5mg) or staying at a specific dose until the side effects being felt have passed, instead of increasing each week.
Topamax’s manufacturers recommend doctors “start low and go slow” when prescribing Topamax. This means a doctor will likely prescribe a low dose to start and then slowly increase the amount of Topamax a patient takes until reaching the dosage that works best for the patient.’(5)
While 100mg is considered the therapeutic dose, some people will not tolerate the dosing schedule or the 100mg dose. Prescribers need to ‘adjust dose and titration according to clinical outcome; use longer intervals between dose adjustments if needed.’ (6)
Coming off Topamax for migraine
Do not stop taking Topamax without first talking to your doctor. Topamax is an anti-seizure medication. An abrupt stopping of Topamax can increase the risk of seizure, even if you are not taking the medication for seizures. (7) Always consult with your doctor about discontinuing a medication. They can advise you if sudden discontinuation is appropriate at your current dose of the medication or not.
Talk to your doctor about any concerns that you have with prescribed medications. Also let them know if you are sensitive to medications. Try to think about how the medications prescribed will help you and try to not focus on the potential side effects. Expect symptoms that arise from taking a new medication to fade.
The good news is that you might not feel any side effects from Topamax and your head might start feeling better. If you notice a big improvement at 50 or 75mg, you might not need to increase your dose at that time. Discuss your progress with your doctor, and don’t discontinue any medication without discussing it with them first.
The problem with social media and Topamax for migraine reviews
Reading about others’ side effects on social media can induce anxiety and panic about having the same issues. Especially if they had a negative experience and are passionate about reliving it on social media. Their medical history is specific to them, not the rest of us. There is no way to know if you will or won’t have any of the side effects until you try it for yourself. And the more we fill our heads with others’ negative experiences, the more likely we are to experience the nocebo effect.
An example of the nocebo effect is learning about negative side effects before taking a medication and then having a greater chance of developing those negative side effects because we have that expectation. The nocebo effect can lead to distrust in healthcare professionals or lack of confidence in a treatment. (8)
Reading the side effects profile for a new medication can make us more susceptible to developing the listed symptoms. There is always a balance between being informed and having more information than is helpful.
As I mentioned before, many people on Topamax are living their lives without the need to come back to migraine support groups. The information in these groups can be so helpful but it can also be counter-productive as it is somewhat skewed.
Medications do have side effects. These are potent substances designed to alter your brain chemistry. The goal is to find a medication that reduces migraine frequency and intensity with ACCEPTABLE side effects.
My Topamax for migraine review and kidney stones
I developed chronic migraine after leaving a very stressful job. I spent 18 years with daily migraine pain. My migraine was very severe and didn’t respond to medications. Topamax was the first medication that worked for me.
Was Topamax perfect for me? No. But it helped me manage migraine along with lifestyle changes including diet, hydration, sleep, exercise and meditation. We refer to these changes as part of the Treatment Pie.
My side effects were brain fog, carbonated drinks tasting flat (resolved in a month or so), tingling in my hands and feet (less of an issue if I took it at the same time every day and stayed hydrated) and kidney stones. Ultimately, I ended up weaning off of it about a year ago to see if the kidney stones would resolve. It seems to have helped that situation.
I still miss the benefits of being on Topamax. While I didn’t love the brain fog, I was totally willing to put up with it because it initially reduced my migraine attacks from daily to about 2-4 per month. I’m still trying to find a medication that works as well for me. I’m open to trying the suggestions of my headache specialist.
Migraine happens on a spectrum
Migraine is a spectrum disorder. Some experience migraine on the mild side of the spectrum while others have a more severe experience. While we recommend lifestyle changes that can help manage migraine, those of us on the severe side of the spectrum often require medications to manage migraine. If your doctor is recommending a preventive medication, it is likely worth a try.
The headache specialist’s perspective
Dr. Thomas Berk is a neurologist and headache specialist in New York City, and the Medical Director of Neura Health. His perspective on Topamax is written below.
Although, as noted above, topiramate is one of (if not the single most) commonly prescribed medications for migraine prevention. There is a perception among many internists and general neurologists that topiramate is safe, effective and well tolerated. As a headache specialist, I find myself stopping topiramate much more frequently than starting it.
History of Topamax
Topiramate was approved for the prevention of seizures in 1996, but it was not initially developed for migraine, seizure or any neurological indication. Topiramate was initially developed as a cardiac medication in 1979, but two neuroscience chemists discovered that its unique structure fit another purpose more closely – as an antiseizure medication. Although it was not prioritized by their employer, Johnson and Johnson, in the late 1980s they continued to stick by their work, which eventually led to a formal FDA approval. Only once topiramate came to market were other indications studied, including migraine prevention.
How Topamax works
Topiramate works by modulating voltage-gated sodium sodium channels on excitatory neurons. What that means is that topiramate “quiets down” neurons that have a tendency to be stimulated and stimulate other like-minded neurons. This decreases the risk for seizure, and also lowers the sensitivities that many people with migraine may experience. It can also lead to many of the most common side effects associated with topiramate.
Topiramate is also helpful with another headache disorder, idiopathic intracranial hypertension, or IIH. IIH is caused by elevated pressure of the cerebrospinal fluid – the fluid that is around the brain and spinal cord. The pressure of the fluid can be decreased by slightly decreasing the acidity of the blood, a property that topiramate has. For this reason, many doctors recommend topiramate to their patients that have both migraine and IIH, so they can take one medication and treat both conditions.
For many people that can’t tolerate topiramate, two extended release formulations have been developed: Qudexy and Trokendi. Although topiramate itself has almost a 24 hour half-life, these formulations are gentler and better tolerated for many people. If topiramate was effective, but you just couldn’t tolerate a higher dose of it, your doctor might consider one of these formulations.
Every brain is different, and everyone with migraine responds differently to the same treatments. What someone else tolerates might not agree with you, and what works for you can be ineffective even for a family member who shares your same migraine genes. Choosing migraine medications can be difficult, and the history of topiramate is as fraught with controversy as they get.
Dr. Thomas Berk is a neurologist and headache specialist in New York City, and the Medical Director of Neura Health. He has over 11 years of clinical experience, having graduated from the NYU Grossman School of Medicine in 2010. He completed his neurology residency at NYU as well and is a board-certified headache specialist, having completed a headache fellowship at the Jefferson Headache Center. Dr. Berk is an emerging leader of the American Headache Society and has been on the Super-Doctor’s list of rising stars for the past three years.