Time release Topamax for migraines! - Hughes Syndrome A...

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Time release Topamax for migraines!

Sophie1421 profile image
9 Replies

I have suffered with migraines for over 60 years. Most recently I was getting an average of 15 migraines with aura a month. I also have antiphospholipid syndrome. In the summer of 2017 my neurologist initially put me on topamax twice a day working me up to 100 mg a day. I hated the side effects of feeling groggy, nauseus and having word retrieval issues. In the late fall of 2017 the FDA in the States approved the use of the time release version of Topamax for migraines to be covered by insurance. It is marketed as Trokendi XR. It has been a life saver. I experience no side effects and very rarely have a migraine. Ask your doctor about the time release version taken once daily. I hope it gives you relief!

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Sophie1421
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MaryF profile image
MaryFAdministrator

HI there, with a diagnosis for Hughes Syndrome/APS are you under a consultant who fully understands Hughes Syndrome/APS, as if not, you may not have the right correct medication in place. Are you on Aspirin, or Warfarin? Where are you located? I am glad your current medication is helping. MaryF

Sophie1421 profile image
Sophie1421 in reply to MaryF

At this time I am working with a hematologist for Hughes syndrome. Since I have never had any deep vein thrombosis or any clotting issues, have the migraines under control, and only had miscarriage issues, I am treating the Hughes with baby aspirin.

MaryF profile image
MaryFAdministrator in reply to Sophie1421

I am very pleased your regime is working, thanks for sharing your experience it will help others. MaryF

KayHimm profile image
KayHimm in reply to Sophie1421

Thank you, Sophie, for this information on Topamax. I have migraine variant and am anti-cardiolipin positive. Topamax and Effexor have helped a lot, but will ask if the time-release Topamax would be more effective. So glad you have had such significant improvement!

Mermaidatheart profile image
Mermaidatheart

Wow, that is awesome for you!

Sophie1421 profile image
Sophie1421

Even with the time release you would need to be introduced to the topiramate/Trokendi XR at low to increasing levels. That would depend on your needs.

Sophie1421 profile image
Sophie1421

I started at 75mg and quickly went up to 100 of the Trokendi XR as I was already on 50 mg of the topiramate twice a day. I believe it is available in increments of 25 mg. doses but your doctor would be able to advise you on that. It has been available for epileptic patients for quite awhile. However it was not covered by insurance for migraine use until recently and the cost was prohibitive.

Ash0507 profile image
Ash0507

Over in the UK topamax and topirimate are the same drugs so not sure if it differs in the us, I see a Neuro in Dec and praying they help my numbness and migraines.

I'm glad it's helped

Sophie1421 profile image
Sophie1421

Yes they are the same in the states also. Trokendi XR is a time release version of topamax/topiramate taken once a day. Topamax/topiramate is taken twice a day 12 hours apart.

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