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Finally got relief!

I have suffered with migraines for 25 years but up until a few years ago, they became chronic. Two years ago, I underwent Botox injections (31) at one time. For the first 3 months, I wasn’t sure I made the right decision because of the side effects, mostly flu-syndrome.

Before the end of the first 3 months, I began noticing a real significant change in the frequency and severity of my migraines. They greatly diminished in both ways. I finally began having quality of life again. Before, I truly wanted God to take me. I begged Him to do so. I was in the bed all the time in a dark room and could not enjoy anything or plan anything. Sometimes when I would take something for the pain, it would get worse instead of better. I saw no light at the end of the tunnel. I did quite well for a long time, but then once again, the migraines came back.

Well, October 14, I was put back on Topamax to try it one more time. I didn’t want to do the Botox unless absolutely necessary. I had not been on the Topamax in many years. After just 5 little pills, one a day, I have been a completely different person. It will be 2 weeks day after tomorrow that I have felt great every single day, not even a hint of a headache. I have been able to fully enjoy my life again, go out with family and have fun…something I’m not used to doing!!

After the first week of the Topamax, it was increased to one in the a.m. and one in the p.m. It is an anti-seizure medication also used for migraines. If anyone is desperate for relief and has not tried it, I highly recommend it. I also highly recommend Botox if you have good insurance. God bless anyone who suffers with such debilitating pain!!

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Migraine.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • lmektl
    6 years ago

    I have been prescribed Topamax but after researching it, decided to try something else. In addition to the eye problems, there also seems to be issues with dental enamel and also an increased risk of kidney stones. The doctor also told me that it will make carbonated drinks taste funny and I love my one Pepsi a day. I’ve been able to function taking Neurontin for a long time but that’s not working so well any more so I’m adding Baclofen, a muscle/nerve relaxer and CoEnzyme Q10. If those don’t help my doctor wants me to try Butterbur. I guess it’s just trial and error for all of us.

  • Jan Piller
    6 years ago

    I spoke with my doctor about the butterbur and he didn’t suggest it. He said my insurance likely wouldn’t cover it, to be safe, it should be prepared by a recognized lab and that can be very expensive and the long term is not good for your digestive system. If you end up trying it, I would love to know how you make out!

  • JLRoberts
    6 years ago

    After missing nearly two months work last year, I finally found a Doctor and treatment that works. Using Gabapentin and
    Botox treatments my Migraines go away except for the last 2 weeks before you can get your injections. Botox can only be injected every three months. Just be prepared for the week or two before you get the injections. The headaches are severe and nausea sets in. I get my injection this week. Botox and Gabapentin works.

  • sams
    6 years ago

    I am so glad you found relief! I have been put on topamax twice, it works very well for my migraines but the problem was the side effects. I couldn’t finish my own sentences let alone hold a conversation with someone. I was very forgetful, it did decrease my appetite at the beginning but after a few weeks that wasn’t a problem anymore and a few more minor side effects. If I could think on it I would be on it, but it just doesn’t work when you are trying to finish up school. Many of my past neurologists have mentioned I should try botox, I am worried about the cost and the fact that it can take a couple of rounds to work. My new migraine specialists (only been seeing for 3 months) has yet to bring it up, he seems to think I should try the inpatient program and stay in the hospital for 2 weeks.

  • tired of being sick author
    6 years ago

    Thanks, Sam! I want to let you know that I had good insurance at the time, and the cost was $5,712. I didn’t have to pay anything out of pocket. Also, it took effect after 2-3 months. That was 10/3/11. Fortunately, it worked very well for me, and it gave me real quality of life again for the first time in years. I would highly recommend it only if you have good insurance. Otherwise, I would suggest the inpatient treatment in the hospital as suggested by your neurologist, but once again, that would need good insurance, too. All the best to you in making the right choice and in getting the best treatment possible. Hope you get relief soon!!

  • tired of being sick author
    6 years ago

    I have now been on Topamax for over 3 1/2 weeks. My mother is concerned about this medication, because she says it’s as if I’m ‘high’. I am more talkative and very ‘happy’. I am overly sensitive right now and seem to be easily offended. I have been easily agitated, but I am getting better. I’ve tried to tell her I am high on life. That is a good thing. One reason is because ‘I feel so darn good for the first time in a very long time’, and it’s due to the Topamax!! It’s given me my life back. I enjoy every single minute of every single day, right down to the birds singing, my morning coffee, music, riding out, conversations, looking at the sky, breathing!!! It’s things that most people take for granted. I am concerned about one thing in particular, though. It says it can cause glaucoma and possible blindness. That scares me as much as anything. I did read that Botox is safer and more effective than Topamax. I just wanted to throw that out there for anyone who is wondering. I know you can’t believe everything you read, but I actually read that on the internet. Once again, all the best to the ones of us who are truly wanting the correct answer to our problem. I want God’s Will to be done in each of our lives. He’s the only One who knows.

  • Jan Piller
    6 years ago

    I’m glad to hear this – I’ve been sooooo afraid of the antiseizure meds – so many people say it’s horrible.

  • tired of being sick author
    6 years ago

    Thank you, Nancy, for your reply. I did taper just like my doctor informed me. I have only gone up on my dosage one time. I’m only taking 50 mg. a day, 25 in the a.m. and 25 in the p.m. I cannot imagine anyone being depressed or suicidal, as I am extremely happy due to feeling so good, and I am more talkative. As I stated once before, I was concerned about the possible visual problems, but now that you’ve explained it’s usually within the first month, I feel a little better. It will be one month within a few more days. My eyes do not hurt, nor are they red, nor my vision blurry. I appreciate the website and explanation. Therefore, I will continue with this medication barring any unforeseen circumstances. The reason why I joined this forum is to give others hope and letting them know what is helping me exactly and what I have experienced thus far. Botox and Topamax are both wonderful for me.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi tired of being sick,

    I’m so happy to hear you are seeing a difference in the frequency of your migraine attacks. It is important however, to taper up very slowly with Topamax to hopefully reduce potential side effects. We have information on Topamax dosage in this link; http://migraine.com/migraine-treatment/topamax/dosage/.

    There can be vision issues associated with taking Topamax. The problems typically occur during the first month and symptoms include not being able to see clearly, eye pain and other symptoms. We have information in this link about Topamax and vision problems; http://migraine.com/migraine-treatment/topamax/special-warnings/.

    I hope this helps,
    Nancy

  • tired of being sick author
    6 years ago

    Thank you, Jillian! I appreciate your words of encouragement so much. I also meant to mention before that I, too, take mine along with Propranolol. I have been on that beta-blocker for a long time now. I think the combination must be right for ME. When you think you’ve died and gone to heaven compared to what you were experiencing before and truly wanted to die, you can’t help but be totally elated!! Thanks again.

  • Jillian
    6 years ago

    Feeling sick can be terribly depressing. I’m glad that you are feeling better and can totally understand your happiness. I have had friends tell me they have noticed a change in my mood and attitude too. Topamax had some dramatic effects on me at first-maybe give it a little time and keep talking with your mom and keep her in the loop about what is going on with you. Maybe talk with your doctor, pharmacist and eye doctor about glaucoma if you can-they will each have a different perspective and hopefully will be able to help you find the right path for you.

  • Jillian
    6 years ago

    I take Topamax too. I use it in combination with propranolol and have gone from having migraines over 20 days a month to only having 2-4 a month. Topamax does have some side effects though and took a lot of getting used to. It look me 6 months to build up to my current dose and I still have tingling in my hands and feet. I am freezing now that it is fall. I had no appetite for a little while after starting it so would have to make a point to eat or would get a migraine. The hardest part was the first few weeks after starting or increasing the dose. I had a lot of trouble talking to people and remembering the right words. It was really upsetting but I knew that it might happen and would hopefully pass over time. It has gotten better and was definitely worth getting through those trying few weeks.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi Jillian,

    I’m so happy to hear Topamax is reducing the number of migraines you are having – you must be thrilled!

    It is important to taper up slowly when starting Topamax. Doing so can help with potential side effects.

    Nancy

  • MagEd
    6 years ago

    Hi,

    My name is Lindsay Bosslett and I work for Health Monitor Network. We produce patient-friendly guides on a variety of health topics, including diabetes, arthritis and psoriasis. I’m currently heading up a guide on living with migraine headaches.

    I’m putting together a story featuring real people living with migraine headaches who have found relief somehow–whether that be by identifying triggers, changing their lifestyle or finding the right medication.

    If anyone here would be interested, it would just require a short interview (I can do it via email or over the phone). We would also want to include a small picture of you. I can send you the story before it’s published so you can check it, if you desire.

    I can be reached at ####.

    Thank you so much!

    Moderator’s Note: Please do not post personal contact information. Migraine.com members can reach each other through their profiles here. Thank you.

  • Melissa Ferrell
    6 years ago

    I was on Topomax for several years and what I noticed more than relief was the way it affected my mood. I was angry all the time. And then when I went to see my Optometrist, one of the questions on his form was if I had ever taken it, so I asked him why. He explained that there was some evidence linking Topomax and glaucoma. With me only having one good eye to begin with, I decided I needed to let my doctor get me off of it.

    I also tried Botox (26 shots) in one sitting a few years back. At the time, my insurance wouldn’t cover it and it cost me $1,800 out of pocket. There was absolutely no benefit to me (unless you count less forehead wrinkles as a benefit). But, my new neurologist wants to try it on me again. He said that it can sometimes take 3 sittings (9 months) to get the full benefit. IF and only IF, my insurance will cover it this time, I will try it again, but not if they don’t. $1,800 x 3 is a lot of money to just throw away for nothing.

  • lara
    6 years ago

    It is FDA approved now. It might not have been when you received it the first time. Also, have the Doctor’s office put in a pre-authorization and if it is denied? File an appeal in which your doctor will explain why you need it.

  • Nancy Harris Bonk moderator
    6 years ago

    Hi tired of being sick,

    Thank you for sharing that information with us. Botox is working for many people with chronic migraine. As you mentioned, it has given people their lives back.

    Topamax is another option for migraine prevention. Some do very well on it while others not so much. One key to success with this medication is to make sure it is tapered up slowly and it sounds like that’s what you are doing. Let me share this information from our site on Topamax; http://migraine.com/migraine-treatment/topamax/.

    We hope to hear more from you,

    Nancy

  • lara
    6 years ago

    @Mary Worth

    “constant weakness, muscle weakness, slight shortness of breath after exertion, and fatigue”

    Respiratory problems can happen. I’ve experienced them but usually like you, after exertion. Take care of yourself and watch for people who are sick. You will get every cold imaginable.

    Lethargy is a common side effect. I’m terribly weak but I didn’t associate that with topamax.

    You can also expect to start feeling “tingling” in fingers and toes this winter when it starts to get really cold.

    I also have trouble regulating my body temperature. I’m mostly cold all the time. In other words, I’m cold in the winter and I never really get hot in the summer. Be prepared to bundle up in the winter because you will feel the cold. That’s a side effect that isn’t listed anywhere.

  • Mary Worth
    6 years ago

    My migraines became chronic this year and I was prescribed Topamax in June, which greatly diminished the severity of my migraines, although not the the frequency. I learned after much angst and two thyroid tests, hair loss is an uncommon but not rare side affect. My neuro prescribed prenatal vitamins and recommends them at the first sign of hair loss. Unfortunately my prescribing doctor wasn’t aware of this side effect.

    I’ve experienced constant weakness, muscle weakness, slight shortness of breath after exertion, and fatigue and neither my neuro or doctor will attribute these symptoms to either chronic migraine or Topamax (or any other medical condition or meds I’m currently taking). Anyone else experience these symptoms? Any input would really be appreciated.

  • Kendra Street
    6 years ago

    I also have terrible migraine s

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