Migraine is a neurological disease, of which the most common symptom is an intense and disabling episodic headache. Migraine headaches are usually characterized by severe pain on o...
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Botox Question
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Hi. I am new to the group. My son was diagnosed with supraorbital neuralgia recently. He has tried various treatments the past 8 years and none of them have helped much if any. Some of the many medications have had such bad side effects he could not continue them.
At times he has done fairly well for months at a time. This time the neuralgia started about the first of March and has persisted daily. Usually summers tend to be better for him but this summer was much worse. Fall through spring are usually the worst months. He has had allergy treatment many years without any relief. He has been dignosed with chronic daily headaches, TN, migrains, cervical headaches and taken physical therapy, and adrenal insuffiency and takes cortef daily. He was treated for Lyme disease a few years ago which did not help the neuralgia. He started getting headaches after he fell while playing when he was 6 years old. The doctor believes the neuralgia may be related to the fall. He also is going to have a minor sinus surgery in a few weeks to see if that might help. He is missing the frontal sinus on the affected side and has a narrow sinus on that side also. He had Botox injections done 1 week ago. We are seeing his doctor for the follow up appointment tomorrow. How long do the injections normally take to start helping? I also read that they often have to be repeated to start helping. We are considering a stimulator implant over the nerve as more permanent solution. The headache specialist is recommending this also but I was hoping the Botox would work. Does it ever help for more than 3 months? Thank you in advance. Cindy Posted on 07/27/08, 10:07 pm |
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Cindy, have they tried a supraorbital nerve block on him or any nerve block, as well as the Botox? Have they discussed decompression surgery with you?
Botox usually does take time to start working for patients. Even if they see some relief right away, to get that relief to start sticking can take several treatments. For some people - it is enough to break the cycle they are in, so that then preventatives and abortives have more of a shot at working. For other people, it doesn't do anything. You do need to make sure that they are injecting the right amount for his body weight to take care of the nerves. There's been patient's on here who've gotten much less than they needed. Be aware going into the stimulator surgery, it doesn't work for everyone. And they've found that people who respond amazingly to the trials find that it doesn't do quite as well of a job once implanted. This is not to cause you to discard hope. These are just things I was told when I went in for my evaluation for the stimulator, because that's the direction I'm supposed to be going in as well. After sinus surgery or even before, you may want to ask about getting some intranasal lidocaine. Lidocaine is an anesthetic, and when you lean back or lay down, and put it up in your nose....it gets absorbed into the nerves that run behind the nose, which can help relieve some of the pain. Take care. I hope your son does well in surgery. -Laura 
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Hi Laura,
We are going to have the sinus surgery Friday. I sure hope it is the answer. He has a deviated septum which the ENT will straighten and widen a few other contact points. He is not going into any of his sinus cavities so it will fairly non invasive with a quick recovery time. Ryan, my son, broke his nose when he was only 8 while climbing on a soccer goal at school that was not anchored in the ground. I just have a feeling his neuraliga and headaches are sinus related. If the surgery does not help, then we are going to proceed with the stimulator. He had botox injections about a month ago and they did not help at all so we are not going ahead with additional injections Have you had the stimulator implanted yet? How is your neuralgia? Have you ever noticed if anxiety triggers the nerve pain or if anti anxiety meds or muscle relaxers help prevent the attacks? He has nasal lidocaine spray but doesn't find it very helpful. It did completely stop the pain when the ENT sprayed it in his nose prior to inserting the scope about 3 months ago. I guess his type of sprayer forces the mist more in the sinuses or it is stronger. Are you considering decompression surgery?
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My name is Emily and I too have really bad headachs. I have tried botox and I didn't think it worked because my headachs still happen all the time. I sorry thisd isn't real great news, but who knowa it might work for your son. My heart goes out to and tell him that some people do understand what he is going through.
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I get Botox injections every 3 months, and it does work for my severe Migraines.
In answer to your question about "when does it start to work". When I receive my injections, I have about 12 days of side effects, and then I am good for almost 3 months. However, I'm finding each time it seems to be getting better and lasting longer. Good Luck!
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Emily and Angee,
The Botox did not help much, if any at all. It may have helped only a little for a few days and it made his eyelid droop which is getting better now. The doctor said he could use less botox next time which would cause less eye droop, but since it didn't help the neuralgia, we are not having it done again. We are now planning on getting the stimulator implant over the nerve later in Sept. Our insurance wouldn't cover the injections either.
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