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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@russy

Botox didn't work at all for my 8-12 migraines monthly. I tried Amovig and had severe nightmares. My neurogist indicated that he hadn't heard of that problem. The nightmares were very upsetting me. I would have to get out of bed or awhile until I got settled. on one of the cases I went back to bed only for the nightmare to come back. The nightmares were about people in my family getting killed. I have now tried Emgality for two months. I'm down to 3-4 migraines a month. I've had no side effects.

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Thanks for the other info. I just posted how I was doing. My own fault for putting myself in the sitition I did. Just very hard to change my life because of all this! With the exception of Stage IV colon cancer 20 years ago I have been a healthy and active person for over 70 years. I beat the cancer, it was easier than this!
My next avenue after these drugs is seeing a Physcrist. Maybe I need mental help to deal with all of this?
Sundance

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@sundance6

Thanks for the info on the other drug. Will get with my doctor. As for what causes them that is still up in the air! All of my symptoms and start of all these headaches/migraines go back almost a year. They all point to Lyme Disease. Have only had one doctor say that is what it is! (He was a microbioligist from down south and is very farmiliar with it) I live in a Third World State, New Mexico, recent study shows we have the worst medical industry in all 50 states. Have gone through blood tests but have come up negative, but I hear that from most people say about the test. It was my neurologist who decided to treat them as migranes.
I just completed a 1,000 mile business trip over four days. I'm really hurting, all of my Lyme Disease symptoms come back from the stress of the trip. Have been down for 3 days since I got back. I took a chance taking the trip, but had forgotten how bad the symptoms can be.
Sundance

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Lyme's disease is a catch-all disease that may or MAY NOT be what you have. Exhaustion, headaches, stress, jet-lag and disruption of your circadian schedule [ https://www.nigms.nih.gov/Education/Pages/Factsheet_CircadianRhythms.aspx ] will contribute to some of the symptoms you have been feeling just recently. But perhaps, all you have is a virus that is commonly found in all of us - is causing you to feel ill. Headaches/migraines are one thing but the other symptoms you are manifesting need to be addressed. Taking care of YOU should start with good food and liquids including: asparagus, blueberries, radishes, celery, cinnamon, garlic, apricots, and onions - these specific foods will kill the viral cells and help the healing process as discussed in Medial Medium by Anthony William's book. Zinc, thyme, lemon balm and licorice root are some of the herbs that he mentioned as well. Drinking plenty of water with lemon in it will keep you hydrated. Rest, write our your symptoms, diary your headaches and rethink your diet, day to day activities.

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Did the physician give you any 'break through medication (triptan) for taking to control your headaches? When you put on the BOTOX program, there will be headaches in between the injections and they are suppose to give your Imitrex to control them. If the physicians is certified to give the injections, he/she was not following protocol in writing a subscription for you. The script calls for having enough of the medication so that you can have one pill - take it and if the headache didn't go away, two hours later you could take another one. Call the doctor right away and let him know that the BOTOX was NOT helping. Also....some doctors do not give the higher doses of 200 mg but give only 150 mg (total amt) that could help you more. It is up to the doctor as to the amount that they give. ALWAYS call the doctor if the medicine is NOT working for you within the week post injections. And make sure you have standby medicines for ''Break-through" medicines to get you through until the next Injection in 12 weeks. As time goes by - you will need less and less of this. BUT both you and the physician need to understand how the program works.

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Was on the Triptan for a couple of months, did no good. Have let the dr. know about my constant and horrible headaches. She told me to take Tylenol. That was a joke. Then she said she had not heard of anyone with my reaction to the Botox. As I said our state is not known for our medical prowis! It has really gotten frusturating dealing with this.
No one has an answer or will not go out of their area to find anything out about what I have. I have had offers from friends in both Houstan and Phoenix to come stay and go to one of the Specail clinics.
Just can't do it now.
Sundance

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Okay....this physician does not know that there are levels of Triptans to prescribe for BOTOX Step System . If one level of the breakthrough medications does not work, there is the next level of triptan can be tried but there are steps that need to taken in order to get insurance to cover it. Imitrex (sumatriptan) is the first standby med that is normally prescribed for those first starting on this regime. After a course of using and documenting this with your diaries, you will need to show that you at least tried it and it did't work. Your doctor can then prescribed the next level up on the Triptan list to help rid you of your breakthrough headaches. A prior authorization may be needed in order to obtain the medicine but it will be worth it. This worked for me because the Imitrex did nothing for me. My neurologist showed my diaries and wrote the letters, I called my insurance and they authorized the new triptan which works in 10 minutes flat. I rarely get a migraine now. And I like that ...
As far as information - go to the National Migraine Foundation to start with understanding where to go....https://headaches.org/

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@sundance6

Bonnie, Thanks a Bunch! I won't do another treatment that's for sure. I could deal with my regular headaches. But they are worse now. Getting somewhat better the farther away I get from the treatments.
Did anyone else have bad side effects to the Botox treatments?
Thanks,
Sundance

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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 have migraines since I am a child, I had a bike hit me in 2018 I fell and hit my head on the right side had a headache for a year and it left, last year in Aug I decided to try Botox for the migraines, the Dr. injected the shots across my forehead, they were not helping so he told me to come back and 2 weeks after the first shots he gave me more shots across my forehead, after the second batch of shots I developed severe pain on the side where I had hit my head, when I told him about it he said it was not the Botox, I have been to 4 neurologists and no answers because the MRI or Cat Scan don't show anything, I have had this severe pain on the right side of my head for almost a year, it is getting me depressed, when I cough the pain is excruciating wonder if anyone can help me...

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I am new at this and have posted my problem with Botox a few times but not sure how to get back to my post. I had Botox shots last Aug. the first shots across my forehead did not help so the Dr. gave me another batch of Botox shots in 2 weeks, after the 2nd. shots I developed severe pain on the right side of my head where I had fallen from a bike accident, I think the Dr. must have hit a nerve or triggered something, I have had this severe pain for almost a year the MRI or Cat scan don't show anything, have seen 4 neurologists and they haven't helped, they cant figure out why I have this severe pain especially when I cough its excruciating, I am at a point where I just don't know if this will ever go away, please let me know if you have had this kind of experience, I am desperate.
Icart

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@icart

I am new at this and have posted my problem with Botox a few times but not sure how to get back to my post. I had Botox shots last Aug. the first shots across my forehead did not help so the Dr. gave me another batch of Botox shots in 2 weeks, after the 2nd. shots I developed severe pain on the right side of my head where I had fallen from a bike accident, I think the Dr. must have hit a nerve or triggered something, I have had this severe pain for almost a year the MRI or Cat scan don't show anything, have seen 4 neurologists and they haven't helped, they cant figure out why I have this severe pain especially when I cough its excruciating, I am at a point where I just don't know if this will ever go away, please let me know if you have had this kind of experience, I am desperate.
Icart

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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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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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