Migraines & Headaches Community

You say that you have been on so many different medications, but only list a few. E.g. have you tried Topomax or any anti-depressants? Believe it or not, anti-depressants have pain relieving properties.

If you really have been tried on many meds, then if you have migraines at least 15 days a month and the meds haven't helped you, you should try Botox injections. That's what really helped my migraines when none of the meds worked. Except Petadolex, an herbal one, did help me as well. It's proven to help migraines by about 72% I believe.

Let me know.
Sara

Hiya,
Welcome. I'm sorry to hear you are having such great difficulty finding some relief.
Give the pain management doctor a chance, I hope something will help you.
Please make sure you share all your concerns and symptoms with that doctor though so he can keep track of what's working a bit and what's not at all.
I hope others will chime in and support you, as we understand how you feel and the frustrations that go with it.
And check out our
Migraines & Headaches Health Center for information.


Again, welcome

yes i have tried Topomax and amitriptyline and a few others that i have written down just dont have the space to write them in here. As far as botox my insurance doesnt cover it. They have me on 100% disability now. And i wish it would but it wont. Is there n e thing else that you suggest? i have a dr. apt on monday so ill recheck about the botox. Thanks again for the advice.

My insurance company wouldn't cover my Botox injections either. We contested it to the insurance company and then to the State insurance commission who said that it was not "experimental" and that the insurance company had to reimburse me for past Botox injections plus any future ones.

The FDA approved Botox for migraines on October 15, 2010.

I think that you should revisit it with your insurance company as more and more people are contesting it, and your insurance company may have changed its approval of it. If not, send a complaint to your insurance company and reference the FDA's approval. Also ask your doctor about insurance approvals for it.

Also, have you tried nerve block or trigger point injections? They have also helped me a lot.

And don't forget about the Petadolex which helped me where none of the other medications helped me at all.

You deserve to be helped and not to suffer so much. I really wish you the best.
Sara

I also had issues with Botox and my insurance. At first, they approved me. I had 2 sets done and was due for my 3rd when the insurance sent a letter denying any further injections and wanting their money back for the ones I had already done! It took 4 appeals, 2 from my doctor and 2 from me, before I was able to get it approved again. I was 7 months overdue but I finally got my 3rd set done and I did not have to pay for the original sets.

Because it was SO frustrating, I like to share this story with other migraineurs so that they don't give up. Sometimes the insurance companies just make you work hard for what you need.

Another therapy that I am trying now besides meds and Botox is structural energy therapy (SET). It's a body restructuring therapy that incorporates medical massage techniques. It has been very helpful for me. You don't need a prescription from a Dr to get it done.

I hope this helps. Feel better.

Glad that the SET is helping you. Yes, insurance companies can make it difficult, but I think as time goes on, they are having more and more difficulty denying it.

It doesn't sound like you had great relief from the Botox. How many units were given to you? My first batch was 100 units which wasn't enough to help me at all. Now at 245 units, it gives me terrific relief. It's not successful by the number of sets you have done, but by the amount given to you. Ask your doctor how many units you got. I would be interested.

And after getting Botox for over 2 years, I suddenly had a batch that didn't work at all. The doctor admitted that occasionally when he was dividing up a batch amongst e.g. 3 people, they would all say that it hadn't worked which means that the batch was bad. He said that they had alarms on their refrigerators, but that he couldn't account for the condition of the medicine when it arrived at their clinic, so I always suggest that people give it at least 2 tries.

Another remedy that could help you since the SET is helping you, is nerve block and trigger point injections which loosen up the neck and shoulders. And it doesn't hurt nearly as much as the Botox injections do

Thanks so much for responding.
Sara

I don't know how many units. That's a good question. I will absolutely look into that. Thanks Sara.

I do also get facet blocks done. They don't help the facial pain at all (I have migraines and trigeminal neuralgia), but they help my head a little. I just had 4 levels bilaterally done a week ago. That was my 3rd time. (Anything that chips away at all this pain is worth it to me.) I have tried other nerve blocks and I'm looking into more permanent/long term remedies.

This is the first time I've heard anyone talk about facet blocks for migraine pain and I've been frequently a variety of medical sites for a long time. I looked it up and see that are cervical (neck), thoracic (upper back) or lumbar (lower back) facet joint injections. Which area did you have it to help your migraines. I couldn't consider it with the steroids injected, but would like to know for my repetoire to help others.

Also I forgot to list that a Butrans patch has helped me tremendously, amongst all my other treatments.

And I'll also be interested in how many units of Botox you got.

Thanks for your responses which I very much appreciate.

To northernhoney,

Sorry that I forgot about my Butrans patch which has kept me out of the ER and let me do a little bit of walking around the outside of the house to do watering. That's something that would have sent me to the ER in the past.

Look into it. Take care.

I was treated for about 8 years for my chronic migraines before I ever heard about the facet blocks. I had mine done on my cervical spine (neck). They do inject steroids. Eventually, as far as my pain management doctor has said, you can get an ablation done. But according to him, most insurances make you try the steroids at least once.

I will find out the Botox units when I see my neurologist again.

I understand. And I did have steroids in my nerve block injections for about 9 months until I noticed muscle weakness and had the steroids taken out. Also I was put on Prednizone pills when I first got my distinctly different migraines. My migraines just got worse on the steroids.

Wow! Steroids made your migraines worse. I'm so sorry. I hope they've found something else to help you when you are at your worst.
The only way I can ever make the pain go away is with steroids. I know it's long term side effects are bad and I'm terrified it will stop working so I try to hardly ever use them. It's always a last resort [and when I say last resort I mean over 12 days of 8-9 pain>, but it's the only thing that helps. I end up hospitalized and that cocktail that helps is IV steroids, Deapokote drips, Phenergan and Dilaudid. It takes about 3 days but it will finally break the pain.
What steroids do not help is with my trigeminal neuralgia (TN) pain. I actually came to realize that I was having these TN issues because the steroids weren't helping.

I looked you up and saw that you are considering microvascular decompression surgery!!! Why are you considering that before trying other treatments first? So many things can go wrong from surgery.

When do you have your appointment to find out how many units of Botox you got. OR you could call his/her office and ask a nurse to tell you or ask for a copy of the doctor's report from your visit. My neurologist just raised my dose from 225 to 245 and I have never had such relief from my migraines.

Also ask about the nerve block and trigger point injections. Also ask about the Butrans patch which has kept me out of my frequent ER visits since I raised it to the middle dose. And I only went to the ER when the pain was intolerable and all I could do was vomit. Mine have been very severe. But you should start with the lowest dose of 5 mcg first.

Also, your insurance wouldn't cover it, but Petadolex was the only daily preventative med that helped me. Studies show that it reduces migraines by 72%.

Let me know if any of these remedies might work for you. It could turn your whole life around like it did mine. I've had severe 24/7 migraines caused by a major stroke which makes it extremely difficult to treat and I've been told by 4 different doctors that I may have them for the rest of my life. But now, I have mild migraines most days.

(Except I did get a bad batch of Botox which apparently wasn't kept at the right temp before it reached the medical facility. My doctor said that he has divided a Botox vial amongst 3 people who will all call up and tell him that it didn't work. So don't judge by just one time at a certain dose.)

Migraines are so terrible and impact our lives so greatly. Good luck.