Botox for Migranes

Posted by Sundance(RB) @sundance6, May 6, 2019

Despite some of you saying not to try Botox Therapy for Migranes, I did anyway! What a mistake! Toxins such as Botox don't set well in my body.
It has been almost three weeks since my treatment. I have been having the worse headaches than before I started. I have been having severe nick and shoulder pain. I get very lathargic and depressed because I have them all the time. Doctor said it just happens.
Can someone give me some feedback as to if they have had the treatment and any side effects you may experienced. I go to bed with a headache and wake up with one.
I won't do another treatment!
Sundance

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@johnbishop

Welcome @icart, I'm sorry to hear you haven't been able to get any help for the severe pain. You can find all of your previous posts on Connect by going to your profile - click the profile icon near the top right corner of the page, select Profile & Settings, then click Comments at the left. You will see all of your comments with the latest one at the top.

@nurseheadakes mentioned a good resource in a previous post that you might find helpful -- https://headaches.org/.

You mentioned that you had migraines as a child but it got worse after being hit by a bicycle in 2018. I know you said you have seen a lot of different doctors and neurologists. Have you thought about seeking help at a teaching hospital or a major health facility?

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I have been to Emergency rooms in hospitals, because my Cat Scan and MRI don't show any symptoms the neurologist just don't know about this severe pain I am having especially when I cough, a friend researched and found a condition called "Secondary cough headache" when I read it my symptoms seem to be the same, I need a good diagnostician a Dr. that sees things out of the box, that doesn't need tests and can diagnose my condition, I feel that I got the Botox shots too close together, got the first shots and then 2 weeks later another batch of shots and that caused my pain, especially that I got shots on the spot where I hit my head from the bike accident 3 years prior, the Neurologist all say it is not the Botox, but I know it is because the pain came 2 days after the 2nd. shots.

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@icart

I have been to Emergency rooms in hospitals, because my Cat Scan and MRI don't show any symptoms the neurologist just don't know about this severe pain I am having especially when I cough, a friend researched and found a condition called "Secondary cough headache" when I read it my symptoms seem to be the same, I need a good diagnostician a Dr. that sees things out of the box, that doesn't need tests and can diagnose my condition, I feel that I got the Botox shots too close together, got the first shots and then 2 weeks later another batch of shots and that caused my pain, especially that I got shots on the spot where I hit my head from the bike accident 3 years prior, the Neurologist all say it is not the Botox, but I know it is because the pain came 2 days after the 2nd. shots.

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I have been to 2 health facilities one here and one in Florida, I have not been to a teaching hospital, because I have seen top neurologists and because the tests show nothing they cannot advise me on a treatment, I need a good diagnostician one that doesn't need tests to know my problem...my migraines did not get worse after the bike accident, I got an additional headache not a migraine from hitting my head on the sidewalk, this lasted a year and then completely went away in 2019, I feel that the 2 sessions of Botox shots triggered something on the spot where I hit my head because now my severe pain is on that spot and on that side of my head, I am so sure that this is what happened, my Dr. gave me shots only 2 weeks apart and it must have been too early to get additional shots so it affected that area, like nerve endings, I have had this pain since last August it will be a year this august. I am hoping that someone will read my symptoms and have had a similar experience, I need help to get rid of this pain, I cannot take strong meds. because of all the meds I am now taking for high blood pressure, etc. I am limited to taking Tylenol, my Neurologist gave me a pill "Aventyl" 10 mg. I have been taking it for 3 weeks so far nothing, it is a pill for depression but they don't give it for depression but for pain, another neurologist said I could take 20, 30 40 up to 50 mg. of this pill, but my regular neurologist just prescribed 10mg. and even the 10 mg. give me terrible dry mouth which is a side effect.
so this is where I stand now, I am hoping that somehow I will get solution to this terrible pain.

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@johnbishop

Welcome @icart, I'm sorry to hear you haven't been able to get any help for the severe pain. You can find all of your previous posts on Connect by going to your profile - click the profile icon near the top right corner of the page, select Profile & Settings, then click Comments at the left. You will see all of your comments with the latest one at the top.

@nurseheadakes mentioned a good resource in a previous post that you might find helpful -- https://headaches.org/.

You mentioned that you had migraines as a child but it got worse after being hit by a bicycle in 2018. I know you said you have seen a lot of different doctors and neurologists. Have you thought about seeking help at a teaching hospital or a major health facility?

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I had my first botox injections 3 months ago and my migraines reduced to almost nothing. They are less severe but I do still need something to help with the pain when I get one. Unless you have great health insurance (I thought that mine was) it will cost a pretty penny. It costs me a little over $500 every 3-4 months with insurance.

You have to have at least 15 migraines a month and there are other criteria. I suggest that you keep a journal to keep track of your episodes.

I also second John's suggestion about seeking better help if you can't find a good neurologist.

Does this make sense?

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@nurseheadakes

First thought here is that BOTOX is to be given by a CERTIFIED Neurologist who understands how to give it, when to give it and where to administer it. The patient who is to be given this med must qualify for it by diagnosis, symptoms, length of time, other treatments used to treat the headaches and when the type of migraine was given to the patient. The 30+ shots are given every three months on a schedule per FDA regulations, policy /procedure since you must sign your signature to receive this medication. The usual dosage is around 200 mg divided up between different sites of your forehead, neck, around your head, back of your ears, jaw and trigger points. A diary of symptoms, migraines, hours of sleep, vertigo, other medications taken or treatments are logged and given to the doctor at each MD apt for continued approval of BOTOX administration. As noted previously, the Triptans drugs are also a means to treat Migraines since they are a Step program and can be used in addition to BOTOX for breakthrough headaches.
Newer medications are on the market now to help with these break thru headaches that include injections - you as a patient give to yourself. The manufacturers have special programs that help pay for these programs if you want to participate in them since insurance does not pay for these meds, I recently signed up for one of them since I now have more migraines post COVID. Eloise

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None of them worked for me and I tried them ALL

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@merpreb

I had my first botox injections 3 months ago and my migraines reduced to almost nothing. They are less severe but I do still need something to help with the pain when I get one. Unless you have great health insurance (I thought that mine was) it will cost a pretty penny. It costs me a little over $500 every 3-4 months with insurance.

You have to have at least 15 migraines a month and there are other criteria. I suggest that you keep a journal to keep track of your episodes.

I also second John's suggestion about seeking better help if you can't find a good neurologist.

Does this make sense?

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What is "better help"?

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@mikaylar

What is "better help"?

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I misspoke-Often teaching hospitals combine medical education, research, and patient care in a unique environment where the next generation of doctors, nurses, and other health professionals are trained. They foster an environment of discovery and the latest advances in medicine. And What are the advantages of a teaching hospital?
Teaching hospitals provide a host of other unique advantages to patients like improved quality of care, new cures, and treatment therapies, state-of-the-art technologies, shorter length of stay for major illnesses, superior outcomes, and survival rates, specialized surgeries, and experimental medical procedures.

I have participated in a few trials that have gone on to be very successful procedures for others. I'm very proud of this. I was one of the first 5 people ever treated with proton radiation for lung cancer at MGH in the USA. The doctor who was in charge of this has been my radiologist for all of my radion treatments and they have all been successful. Hospitals like Mayo and MGH (Mass General) are the type of hospitals that we are talking about.

Does this help?

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Reading all this comments - I would go back to the source of your pain. The exact injury or source of the injury. Have you had any adjustments to you neck or spine - could it be out of place, causing your headaches? Have your had any massages, or chiropractic adjustments to your cervical spine? This may be a reason for your repeated headaches. Do you have allergies, sinus difficulties, or had headaches post COVID virus that never went away? The SARS virus attacks the brain and causes headaches, respiratory symptoms long-term and will get in the way of diagnoses and treatment plans. Check your calendar for the start of symptoms, what was done, if it helped, what did not work and chart out a diary for your migraine history to help yourself and your physicians figure out how to care for you. It is becoming more difficult these days to detect the COVID virus because it is now blending itself into and with the other viruses so that all of their symptoms are hard to find and treat. We must be detectives and monitor our bodies symptoms - what we are exposed to, what we eat, how we react to stimuli, what we do to protect ourselves and what means we use to inhibit our symptoms from getting out of control. It is a fighting battle I would agree, but one that can be managed in ways that decrease your migraines and still give you a life that is half way decent. Eloise

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@icart

I was hit by a bicycle in 2018, I hit my head badly on the left side of the forehead had a headache for one year this and my migraines, the headache went away after a year in 2019. last August I decided to do Botox shots, the Dr. administered the shots across my forehead, I was still having migraines so he told me to come back and gave me another set of shots 2 weeks later, after the 2nd.set of shots this was in August 2021 I developed a severe pain in the area where I was hit by the bike, the pain is excruciating when I cough, I also get pain without coughing but not as severe, I have been to 4 Neurologists and because nothing shows up on the Cat Scan or MRI none of the doctors know what to do, I am in pain all the time and so far no solution, anyone have an idea for me.

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I am so sorry for you. How about ice? Something called an Icekap you can buy on the internet. Worth a shot.
Mikayla

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Thank you so much for your suggestion, I have tried ice, this pain is not from an injury, I had the accident in 2018 and was told the headache would go away in a year and it did, it is when I got the Botox shots in August 2021 that the shot must have triggered a nerve ending or something like that and now I am experiencing severe pain especially when I cough.
Icart

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@icart

Thank you so much for your suggestion, I have tried ice, this pain is not from an injury, I had the accident in 2018 and was told the headache would go away in a year and it did, it is when I got the Botox shots in August 2021 that the shot must have triggered a nerve ending or something like that and now I am experiencing severe pain especially when I cough.
Icart

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May I ask why you got Botox when the headache had gone away?

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