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When Botox doesn't work

botox migraines

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#1 liamellie

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Posted 26 August 2012 - 11:50 PM

Does anyone know what happens if Botox treatments for migraines doesn't work? I've had migraines for five years now, and I've been through every class of drug, some more than once, and my neurologist decided to try Botox. My first treatment was on friday, and I know it's a little premature to be expecting relief and it's not a magic bullet, but what happens if this fails and I still have the same amount of pain that I had before? Does anyone know? Has anyone had Botox, had it fail, and if so, what did you do?
Diagnosis: Daily Chronic Migraines without aura.
Current Medications: Zonegran 300mg, Metformin 1000mg. Had first Botox treatment on 8/24/12
Not allowed: Any OTC, narcotic, triptan, or ergot painkiller since December '11
Triggers: Light, Sound, Paint thinner smell, Emotional distress
What makes it better:having low blood sugar, being highly adrenalized, dark rooms, quiet places, peppermint oil, heating pad


#2 crtclms

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Posted 27 August 2012 - 12:28 AM

I have had Botox work kinda sorta. The first time, it seemed to get worse, but the neurologist asked me to try it one more time. That time, there was a noticeable improvement, but not enough to, say, go back to work part time, or be able to schedule things. I was going to go in a 3rd time, but the doctor's nurse was a jerk, so so much for that.

I was supposed to go in for a Di-hydroergotamine drip, which is basically they drip it into your arm for 5 days. It is supposed to break the cycle of the headaches. It seems to have worked in everyone who has tried it, but it doesn't always work for long. It seems like some people do it regularly, like every few months or so. While you are there, they are supposed to look for your paritcular pain points, and re-adjust the botox grid. So after you have the drip, you immediately get botox tailored to your head.

Then, I was supposed to be put on Namenda as prophylaxis. That is an alzheimer's drug that they are starting to use on headache patients.

My insurance is about to be thrown into upheaval, so I don't know what is going to happen. I think there is a good chance I will be unable to afford to get treated, which is making me cry right now. I was supposed to have it in September. I'll let people know what happens.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Fish Oil; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate the boards for Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Neuropathic and Chronic Pain, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, Relationships, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions


#3 liamellie

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Posted 27 August 2012 - 12:36 AM

I've researched Namenda as prophylaxis. It got put on the back burner when my insurance finally came through on the botox. My neuro is skeptical about me going through the botox again unless it works really well, because of how freaked out I was with the needles. I seem to have a bad vasovagal reaction whenever I get injected with anything or blood drawn, and it's not something I can help, but it really freaked everyone out and made the procedure take twice as long.

I've been on drips that were supposed to break cycles before, Vimpat and Depakote, but they didn't work. Haven't heard of Ergots being used yet.

Something that's worked for me for pain is putting peppermint oil, or peppermint baking extract, topically on your head. It gets cold like an ice pack, and you can wear it around while you're doing stuff. Also what helps me is fighting. Strange yes, but fighting helps, martial arts fighting, not like I go picking fights. The busier I am, the easier it is to not focus on the pain. Easier said than done, but I've had years of practice now. And it was easier to do when I was allowed to take pain meds.

Thanks for telling me about the Namenda and the di-hydroergotamine drip. I'd nearly forgotten about the Namenda in all my freaking out about the Botox and what could happen next if it didn't work.
Diagnosis: Daily Chronic Migraines without aura.
Current Medications: Zonegran 300mg, Metformin 1000mg. Had first Botox treatment on 8/24/12
Not allowed: Any OTC, narcotic, triptan, or ergot painkiller since December '11
Triggers: Light, Sound, Paint thinner smell, Emotional distress
What makes it better:having low blood sugar, being highly adrenalized, dark rooms, quiet places, peppermint oil, heating pad

#4 gizmo

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Posted 30 August 2012 - 06:19 AM

My insurance is about to be thrown into upheaval, so I don't know what is going to happen. I think there is a good chance I will be unable to afford to get treated, which is making me cry right now. I was supposed to have it in September. I'll let people know what happens.


Sorry, off topic. But crtclms, if I were you, I would get COBRA just long enough to pay for the treatments. I'm sure your hubby will get on COBRA, is there any way for you to get on it and then drop yourself only after a couple of months?

To the OP, I just had botox about two weeks ago. I've had four migraines since then, but all were cured with a single dose of fioricet, whereas before I would be taking six fioricet a day for multiple days and still needing to go to the urgent care for a morphine shot. I'm not saying that won't happen, I'm just telling you that botox has enabled my pain medications to get a better hold on my migraines and eliminate them faster with the minimum amount of medication.
Diagnosis: BP I with Psychotic Features, GAD, ADHD, Chronic Migraines, various physical stuff.
Meds Currently On: Depakote 2000 mg, Risperdal 8 mg, Latuda 80 mg, Prozac 60 mg, Vyvanse 70 mg, Propranolol 40 mg BID, Klonopin 2 mg BID PRN
Meds Sort-Of Mental Related: Lipitor 40 mg, Zofran 4 mg PRN, Fioricet PRN, Stadol PRN, Botox received on 8/16/13

I post on an iPhone, so please forgive grammatical errors or strange word inclusions. It's the auto correct!

#5 crtclms

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Posted 30 August 2012 - 07:40 PM

Yay!

Gizmo, the problem is my mood isn't stable right now, so we have to stay on it long enough fro me to get stabilized. My pdoc said he would prescribe me med if we move while I look for another pdoc, but I don't think he would be willing to do it before then.

Dx: Bipolar 1; GAD; Migraine w/ Aura; Migraine w/o Aura; Renal Tubular Acidosis (caused by Zonegran); Status Migrainosus
Rx: Alprazolam; Botox; Buproprion; Dihydroergotomine via IV Infusion; Fish Oil; Flexeril; Lamotrigine; Latuda; Lithium; Metoclopramide; Midrin; Migranal; Potassium Citrate; Prilosec; Promethazine; Riboflavin; Tizanidine; Verapamil; Vitamin D3
Currently Shelved: Abilify; Amerge; Anaprox; Atenolol; Buspar; Cafergot; Cymbalta; Depakote; Di-Hydro-ergotamine, injected; Gabapentin; Geodon; Imitrex Tablets; Klonopin; Maxalt; Namenda; Nortriptyline; Norvasc; Propranolol; Prozac; Risperidone; Relpax; Sansert; Sumatriptan injectables; Tegretol; Trazadone; Zoloft; Zolpidem; Zomig; Zonegran


Affectations can be dangerous. -Gertrude Stein

 

I moderate the boards for Bipolar, Panic/Anxiety, Dissociative Disorders, Migraine, Neuropathic and Chronic Pain, Seizures, Not Otherwise Specified, Anticonvulsants, Side Effects, Family Feud, Relationships, and I Still Have Issues. Remember, I am not a medical professional. PM me if you have any questions






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