I am a 56YOWF, Army Veteran with PTSD-MST. Wrapped inside this acronym is a lengthy list of diagnoses. On 2/12/2018 the Topiramate was prescribed to ‘allegedly’ replace Divalproex which was efficient for all of my bi-polar symptoms. However, it caused an extreme weight gain which is the real reason the Topiramate was prescribed. After emailing my Psychiatrist with my symptoms (side-effects) and hearing nothing back within 24 hours, I started half dosing 3 days ago. Symptoms 4 days in were blurred vision and gray floaters, ringing in my ears(mainly left) excruciating pain under ribcage on both sides, aggression and severe acidosis. The one positive thing this medication did was make me lose my craving for nicotine. While I am ecstatic about being smoke free, I am not excited about this pressure forming in my forehead and spreading upwards. So while I anticipate a Queen size migraine, I am headed to the store to get lemons. Sliced and placed on saucers throughout the house seem to counteract my migraines and boost my energy during the day. In January, I started an egg white and honey mask, slathering extra on my forehead and temples; it firms, tightens, and feeds nutrients to your skin. For me, it also aides in decreased headaches. Lavender sachets in my pillows for a restful sleep. That’s it. Like yourselves, I am sick to death of medications and the horrible side effects. One would think I had learned my lesson with the Lyrica and Gabapentin for my fibro; what a nightmare! So this year is about mind, body, spirit. If mother nature didn’t create it and the earth doesn’t grow it, I will not ingest it. No more man-made drugs where the side effects are worse than the cure!

I have been only taking topamax for less than a week it helps my headache during the day (caused by my bp meds) but I wake up with a pounding headache only since I’ve started taking it. I take it at 10 am and 10 pm the morning headache makes me lose lose balance and changes my vision.

Topiramate is the generic for Topamax so they are the same drug. Unfortunately, I cannot comment on any specific cases.

yes i actually was on the topirmate, which i read is worse than brand name, anyhow all my testing came back normal, bloodwork, catscan and urine, they treated me with IV, and released me hours later, yet i still dont feel 100% as i did before even starting the topimirate, if i only knew beforetime, id go any other route if possible than this med. what do u think of a dr prescribing it for me tho even tho i run a bit high taccycardia in general close to 100

Metabolic acidosis from Topamax usually should not last for more than a week after you stop taking it. Some people have a low-grade metabolic acidosis from topiramate (Topamax) and if they stay on it acidosis can lead to kidney stones, osteoporosis, and in children, growth retardation.

thx Dr M. what is metabolic acidosis, and how long can it last , even after stopping,? i stopped it suddenly, not weaning down bc of what happened to me, the headaches were unbearable after, just starting to lighten up, but i still feel somewhat weak and the salt taste lightened but is still there, , i stopped it 9 days ago, tyvm

You are right, Topamax is not a benign drug and it is definitely more dangerous than originally thought. You probably suffered a complication called metabolic acidosis. I would not go as far as banning it, but it should be used only when several other milder drugs and Botox have failed. It is very effective for some patients with migraines and epilepsy and some patients tolerate it very well. Also, it should be started at 25 mg and slowly increased.

this drug is the worst it changes your head and brain in 10 days, i wound up in the ER, severyly dehydrated, high BP and heartrate, it was bad, and lasted a week after i stopped it, why is it still on the market>

i have just started to tske topirament on saturday for chronic migraines, but ive had a dull headache in the front of my head since, is this a side effect and will it past?

Thank you.

Yes, you may want to ask your doctor about Botox injections – the only FDA-approved treatment for chronic migraine headaches

now that I am weaning myself off the topamax the side effects have gone away but the chronic migraines have returned and I am inconstant pain I am trying magnesium and eating healthy but I dont think I can go on to long like this what would you recommend for treatment botox or acupuncture for long lasting treatment with low side effects. I dont want to take anymore medications with horrible side effect. I would really appreciate your opinion please I would just come in to see you but I dont have enough money right now but Im working on it.

Topamax (topiramate) and Zonegran (zonisamide) are similar acting epilepsy drugs used for the prevention of migraine headaches. Other epilepsy drugs, such as Neurontin (gabapentin) can also be effective for chronic migraines with fewer side effects, although it works in a different way. Botox injections is the only FDA-approved treatment for chronic (daily) migraines.

I take Topamax 100 mg twice a day. I went off of it for a while wn i started losing my hair by a handful each night. I went on zonegran but it did not work. So i went back to the topamax but it doesnt seem to work anymore. I have a migraine daily. Is there anything comparable?

Hi Kristi,
I am glad that baking soda has helped you. Unfortunately, I cannot give individual advice to anyone without first seeing them and learning all the details about their headache, general health, and other infromation.

Hi Doctor, my name is Kristi I use to live a pretty good life until 3yrs ago when I caught a chest and head cold witch brought on these chronic migraines that never left, at first I had these painful stabbing throbbing, pounding headaches everyday for months was given every thing for pain and nothing worked my live was unlivable. Then I finally took the topamax twice a day for a year and it seemed to be ok and my life was manageable again I still have daily pain but nothing like before. But the past year i have been having terrible symptoms of what my Doctors keep telling me is Anxiety but nothing they give me works except klonapan and I didnt like taking that cause I didnt believe I had it. Now that I found your blog and tried the baking soda that worked fine and I know now its the topamax please help me to get off this drug and et back to life again I cant live like this I know once I get off the topamax the head aches will come back but if I stay on it I have tingling numbing and racing heart all the time. I am cutting down my dose and starting to take aspirin and magnesium I would like to try your new pill just dont have the money for it but when I do I will get it. I really would like to come and see you I know in my heart you could help me get back to life please Doctor I just want to wake up go to work and live I dont want any special treatment but I dont have much money but too much as a single person to qualify for any coverage I will pay you. I know you are the Doctor that can help me please.I hope this reaches you in the best of health and well being and even if i dont hear from you, you have already helped me so much and made my life a brighter thank you so much.

Is there any studies that have been done on high dose patients that you are of and if so – what are the long term after effects. My current specialists except for my Neuro are familiar with the drug which makes it difficult . So many doctors – different understandings .

In a study of 75 patients on an average dose of 300 mg of Topamax treated for an average of 2 years, 20% of patients were found to have kidney stones on a CAT scan. Most people were asymptomatic, that is they had no symptoms and were not aware of the fact that they had kidney stones. So, even much lower doses can cause kidney stones.

And I don’t necessarily think its a terrible medication in low doses – it has been good to me in keeping my epilepsy in remission for 2 years . All medications have risks. I just think that each person is affected differently and well I’ve been on a massive dose of it . It just unfortunate .

I don’t actually take topamax for migraine, I have been taking it for 5 years for epilepsy. In May 2012 I developed sepsis in my right kidney and was taken to hospital by ambulance . It was later discovered that I had an obstruction in my right ureter – a calcium phosphate calculi. My neurologist has indicated these stones are stones associated with topamax at high dosage. I take 850mg a day. My kidney specialist advised me today that my Vitamin D levels hav further depleted and are now below 20 even with supplements. Calcium, Uric acid is all sketchy. Liver function . Now referred to endo for consult with my neuro as primary physician . Experiencing continued flank pain and fluid retention. No current obstruction on CT. just thought I’d share my story with topamax

Hi Jackie,
It is best to taper off Topamax with the help of your doctor who may be able to prescribe some medications or alternative treatments for your withdrawal symptoms. Reducing the dose slower than you are doing now may also help.

Hello! I’ve been taking 100 mgs of Topamax for over 10 yrs. I’m now in the process of weaning myself off the stuff & wish I had never started! I’ve been taking 50mgs for 5 days now & feel just awful – severe headache, nausea, anxiety, insomnia. My vision is also effected. How long will these symptoms last? And I do plan on stopping this medication completely and what’s the best way to do this? I have searched for information and help but there isn’t much available – just alot of other people, like me, wanting to get off this stuff & wishing they had never started! Thank you, Jackie

Hi Doctor Mauskop , im not a patient taking this medication . . but my mother is . She has been on it for about a month and half now. She is on her 3tablets twice a day , although she has been wanting to lower her dose ; due to how emotionally she feels. She is forgeting a lot , and cant speak correctly . Yet she talks so much , its uncontrollable. We as a family try to feel for her and help as much as possible. Although its very hard for us to do so . She hears screaming in her head , that was w/in the 1st week of 1 pill each day . During the 2nd week w/2pills each day she started becoming more weak . She yells when it is not such a big deal , she cries when someone tells her to be quiet. Its like having a baby , when she’s crying. Erika does have suicidal thoughts now and they come very frequently . Is this all normal ? My main thought is that she is my mother i dont want to lose her Erika used to be my best friend : i cant even talk to her to where she can listen like she used too . I wish i could call her doctor and just say thank you to taking away my best friend . :'( What do i do ? How am i supposed to re-act to all this . I know im old enough to take care of myself. Yet im only 16 ; i have a 12 year old sister and a 4 year old brother ; i have to stay strong for them too . :[

Topamax is horrible. I would say it reduced my migraines, but the side effects were just not worth it. I had no energy or appetite. Nothing tasted right so I never could enjoy any meal I had. I found that my thought processes were unclear. Could not clearly put my thoughts into words. I was not suicidal, but I really didn’t care if I lived or died. I was very emotional and despondent. I stopped taking this drug when I started having trouble breathing. I couldn’t catch my breath. I contacted my Dr. who said that the drug was not responsible. I immediately stopped taking it. Breathing returned to normal. I would not recommend this drug to anyone.

Unfortunately, glaucoma is another well-documented side effect of Topamax, although it is not as common as other side effects, such as kidney stones, memory difficulties, fatigue and other. Another common and frightening, but relatively benign side effects is tingling or pins-and-needles sensation (medical term is paresthesias) in arms, legs and face. This usually occurs due to acidic changes in the body and with time this subsides, although I’ve had a few patients who had to stop taking Topamax because the sensation was very severe and completely distracting. This acidity of the body occasionally can become very severe and cause severe so called metabolic acidosis. Metabolic acidosis causes profound fatigue and other symptoms which can be dangerous. Mild paresthesias can be relieved by taking sodium bicarbonate tablets (or baking soda).

Hi Doctor, I took Topamax for only eight days and had the worse migraine I ever had and had an attack on my eyes. This just happened last Thurs night. My vision is returning in my right eye but still have some issues with the left eye. I had pain, redness, only could see shadows and my eyes were dialated. I knew it was from the med since I have always had great vision and just the last few years wear readers. I have been diagnosed with the narrow angle claucoma due to the topamax. My neurologist really does not believe it’s a result of the topamax but after the ER, Optomitrist I saw an Opthamologist who specializes in caucoma andahe diag it. I have fluid in the eys that Im on diamox for and several eye drops the Dr’s knew this was very serious to treat right away or i couldgo bblindi am doing better but not totally yet ofcourse I’m off topamax and wish i never took it and i would warn anyone who elects to take it for migraines to think twice, deal with your migraines another way it’s not worth your eyesightI could not seee anythin but shados till sunday and wasn’t sure if i would ever see agaibn and carry on my life the same and to not be able to see my 20 yr old and 9 yr old and grandchildren one would have devestated me. The word needs to get out about this poisen. Thank youand h

“Clearing your system” may be a good idea because it may get rid of most of your headaches and you may not need Topamax. However, if withdrawal from the drug that is causing rebound is too painful, taking Topamax can make it easier to go through the withdrawal process. The drugs that are the worst offenders as far as causing rebound headaches are Fioricet, Fiorinal, Excedrin, codeine, Vicodin, other narcotics (opioid drugs), and dietary caffeine, while Imitrex (sumatriptan), Maxalt, Zoming and NSAIDs, such as ibuprofen and naproxen are not as bad. Aspirin, actually can prevent rebound headaches (for full disclosure – I developed and sell Migralex – a product containing aspirin and magnesium).

Hi Doc, I have just been prescribed Topomax but haven’t started taking it yet, because I think I am having rebound headaches at the moment, so before I start taking anything new, I want to clear my system. Do you know how long it would take for the “rebound” headaches to go away and the “regular” headaches to come back? I kind of have headaches every day, so I don’t know which is which.

Yes, it would be reasonable to increase the dose of Topamax if it is not causing side effects, although the risk of kidney stones and memory problems is fairly high. Botox, on the other hand is safer and is more effective. I find it works in 70% of my patients. Botox is injected in the areas of pain, usually the forehead, temples back of the head and neck. Botox injections should be given by a neurologist experienced in injecting Botox for headaches, and not a plastic surgeon or dermatologist.

I have taken topamax for about 2 years, really worked in the beginning but now the migraines are really hitting hard, fast, and frequent. Read your article and am wondering if it has become ineffective & if I should stop taking it( have a feeling my Dr. may recommend an increase as I am on a low dose because I don’t tolerate meds very well. Nervous about higher dose because of speech and memory effects).
Also saw you recommend botox injections. I have thought about asking my doc about those but am really skeptical. What benefits do you see from it & do you mostly recommend in the neck or eye and face area or both?
Also are these done by a plastic surgeon or specialist of some kind?

Yes, it is quite a leap from 1% to 20% and many people will not know that they’ve developed kidney stones for a long time. Acupuncture is an effective treatment for migraine, tension, sinus, and other types of headaches. Its efficacy was proven in many clinical trials. The largest acupuncture trial was conducted in Germany and involved over 15,000 headache patients. We utilize it at the New York Headache Center and find that about 60% of patients improve (to various degrees). The advantages of acupuncture are its safety and efficacy, the disadvantages are the cost and the time involved. A course of acupuncture treatment usually consists of 10 – 12 weekly sessions and the cost varies from $30 to $200 per session. Insurance companies often refuse to pay for it and even the German government which paid for the 15,000 patient trial decided not to pay for acupuncture for headaches because there are so many headache patients who might have wanted to undergo this treatment.

To go from 1% to 20% incidence in kidney stones is quite a leap,
And if true would seem to put a great many more patients on longer term
Therapy with the drug at risk of them. Personally I have been on the generic form for 1.5 years, though I cannot say it has caused a decrease in HA frequency. (there has been no increase)

I can personally attest that as with your last two entries, I have had to modify many things (diet, exercise ,regular sleep etc) and the result so far has been moderate reduction in HA frequency, not a cure.

That is why the BOdy-mind-self care program you highlighted is such a good
Resource for your patients. I have not noticed anything like it in other
Areas.

One modality I have heard a few people report anecdotal success with is acupuncture, do you have an opinion on it?