Topamax

[AusReaMom]

Hi, I'm new here! So I've been suffering with migraines for decades and have been on numerous medications I'd recently asked to try nurtec and while my doctor agreed by insurance is fighting it. He gave me samples and has added Topamax to my medication list and day 1 without me realizing it was because of the medication I noticed by coke tasted flat...same thing on day 2, now day 3 my lips and nose are numb and this is a feeling that has really gotten my attention because its not something I commonly experience! How long does this last, is this normal? I'm only taking 50mg. I have high blood pressure and let me tell you as someone who has an anxiety issue to begin with its not something that is pleasant. I've been talking myself off the ledge all day.

[Onthemove1971]

Please do a search on this blog for the many.. make y negative messages about Topomax.. so many of us have suffered from memory loss due to the medication. After taking it almost 2 years I started to notice I could not remember passwords on my email accounts. I know I would join a class action lawsuit against this medication becuase since strolling the medication some have come back but not like it was before. Please research other options and taper off that medication.

Please listen to the heads up Podcast, by 2 UK migraine Specialist.

I take magnesium 3x daily and Feverfew. I am so much better. I drink lots of water and never skip a meal. These have allowed me to be pain free for some days.

Take care,

[Cat00]

I took Topamax, didn't have any side effects but didn't reduce the migraines either so stopped it eventually. Bad taste in the mouth is in the listed side effects, but I'd give it a few weeks bc side effects often wear off in first 3 to 6 weeks.

[Monty123]

My neurologist was very reluctant to prescribe this drug as had bad experiences with patients and mental health -including change in personality etc

My gp prescribed but I stopped after 10 days as I felt so uncredibly low and anxious .

Not one if you suffer already with anxiety I feel . Good Luck

[designer111 in reply to Monty123]

Same! Felt low and anxious and crying a lot for 2 months. Came off it as no change in migraines anyway

[JulieOoze]

I took it as it was on a list of meds you needed to try before getting better more costly meds. I live in Scotland. I didn't like it at the lowest dose, hard to describe but I felt removed or absent from my life, made me unhappy, thought I was menopausal. Due to the gateway medication route they have hear I persevered when I needed to increase the dose. I suffered with poor memory, low mood for another year or so until breakthrough migraines gave me sufficient reason to say I am coming of this. My doctor was not happy to say the least. Next med on the list was epilim. I seem to tolerate that much better. Slowly but surely I feel better. Taking elipilm coincided with lowdown here but I entirely underestimated how Topamax effected me. Brain fog that made me feel old, stupid and actually was probably worse than what it was trying to cure. All meds work differently for different people but I wish I stuck to my gut feeling the day I was told I needed to increase the dose to tick it off my list. Perhaps then that next year wouldn't have been such a struggle with me thinking I'd lost the plot! I hope this helps and you find something that helps you.

[CINDY471]

I fought chronic migraines for 27 years and was put on every medicine possible, took every test and no matter what, I was still losing the battle.

10 years ago I had changed my neurologist and had confidence that she wanted to help cure me. In the end, all she did was continue to chsnge up my medicine and gave me botox , which never took the migraines away, just lowered the intensity for 8 of the 12 weeks.

Then, I ended up back in the ER and begged the doc to help explain why nothing was working and how so many people could suffer from it and yet no one knows why.

He told me it was my job to figure out what was triggering them and then avoid my triggers at all costs. He said what ever it was that was triggering me, my body sees as a poison and it was my job to avoid it. He said taking medicine only masks the pain for so long and that my body is smarter than that and will eventually not allow the medicine to work.

I told him that I was told, it was hormonal and hereditary. He said those are just easy way outs. He said not to give up.

Then, I ended up with another level 10 migraine and my narcotic stopped working (which was my last resort before a trip to the ER).

When I got to the ER, I had already contimplated suicide, as I no longer wanted to fight the battle. I was at my lowest point in my life and I didn't understand why.

Then, as the nurse was struggling to get the IV in me, outed no where I announced I was going to give up dairy and animal products for 30 days.

I then passed out.

When I woke up, I was determined to give it 30 days.

Much to my surprise, on day 11 my migraines finally stopped.

For the next year, every day I worried I'd wake up with another migraine.

It's been over 2 years now and what I've learned is Dis-ease in the body is created by chemicals we ingest, breath in, or expose to our skin.

If you suffer from any kind of illness, request a food sensitivity test. It measures 96 foods and the Food Sensitivity Comprehensive Test measures 204 foods.

Doctors do not want to cure you, they want to treat you, so you keep coming back.

For me, my migraines were triggered by dairy and gylosphate (round-up). I can not have any pasta made in the US.

I had taken a food allergy test and it showed nothing.

My numerologist even congratulated me for figuring it out. I was livid. I asked why dairy wouldnt be on the list of foods to avoid and she said aged cheese is. I said that is not the same.

Why isnt it on the list? Because the dairy industry helps keep the medicial field employed.

Please look into a food sensitivity test. Ironically insurance companies will not cover it, but it's worth every penny.

I am my healthiest I've ever been and love my new life.

It's my before and after pic of me.

[haydencole1234 in reply to CINDY471]

I'm learning much scrolling through these. I've been suffering terribly strange migraines that no-one else can seem to explain to me what it is that's going on. Even doctors and neurologists. I was just prescribed topamax and am starting to realize I probably shouldn't take it and am considering getting a food sensitivity test because of this. Thanks. I may have to go plant based if that can save me. Good luck.

[BitBrokenBrain]

Two years after coming off of Topamax, I’m still seeing “trails” at night that were never there before using it. The side effects were horrible for me when I was on it. I went from praying for my migraines to go away, to praying for them to kill me so I wouldn’t have to live like that anymore. It was unsafe for me to drive, from day one, until a few weeks after I tapered down and off the med. It stole months of my life. I hope that Topamax genuinely helps treat seizures, as it was intended, but for whomever is responsible for making doctors push this drug on chronic migraine patients before actually treating us with methods specific to our neurological conditions, I wish those people were forced to go through what we have experienced.

[Frogmelladb]

I found it changed my sense of taste. E.g tinned tomatoes tasted mouldy. No tingling lips though

[Lacycat1234]

I take topamax and I have been on it for at least 15 years. I take it for epelipsy and I take 200mgs in the morning and 200mgs in the evening. I have absolutely no side effects from it. Unfortunately it doesn't help with my migraines at all. I have tried everything there is to help including occipital nerve blocks. My neurologist said he was going to have to go to plan c. I asked what that meant and he said he absolutely had no I idea. But then ReyVow came out on the market. Oh my goodness what a difference. If I get a migraine it stops it with in minutes. What a life saver. I would talk to your neurologist about it. Good luck everybody and I hope everyone is having a migraine free day!

[Psych1949]

I had a similar experience with Topamax. It was prescribed for spinal nerve pain and migraine headaches. It helped tremendously with both, however I couldn’t tolerate the side effect of a terrible metallic/sugary taste in the mouth and burning tongue. I was only on 25mg am and 25mg pm! I was supposed to titrate up to 50mg am and 50mg pm but I was never able, even after 4 mos. I finally weaned myself off 3 mos ago and I still have the side effects. Some foods make me so sick (with a terrible aftertaste) that many days I feel my life is ruined. I cannot stomach coffee, chocolate, salad dressing, wine, soda, or any grilled meats to name a few. The dr told me it has nothing to do with the Topamax but 4 days into taking it, the side effect started and it was NOT a coincidence . I am healthy otherwise, on no other meds. A friend was on Topamax for 3 years (now off of it) and developed burning mouth syndrome that has never gone away, even 4 years after discontinuing.