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Sticky Blood-Hughes Syndrome Support
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Time release Topamax for migraines!

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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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

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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.

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

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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!

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That’s very interesting Sophie1421 I have been taking Topiramate for many years and was on 125 mg split twice daily. I did not have any symptoms mind you and tolerated it well. The way forward was to titrate up slowly rather than just jump in on a high dose. Taking a slow release once a day sounds a better option and I must remember to ask about it at my next appointment.

Thank you for sharing.

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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.

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Thanks yes I would expect that. What doses does it come in? Im going to look to see if its licensed here in the UK.

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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.

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Wow, that is awesome for you!

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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

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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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