Botox for migraine side effects and how do you kick topamax?

I a few days ago got Botox injections (FDA approved 31-36 injections in standard pattern) for my chronic migraines. I've had migraines for about 7 years now. Starting with the typical test from spinal tap and spinal patch, to CT scan, Mri and you name it. Along with all of you I'm sure I've tried everything and I mean everything. Including spinal cord stimulator that they said wasnt placed right and removed. Multiple blocks, and occipital ablations. Also natural remedies. Diet changes and lifestyle changes. As well I have tried every medication known to treat migraine. I have ended up on these after my "guinea pig" experiences. Topamax (I hate a would like to get off of it but don't know how to with its horrible side effects but am having side effect from being on it) also Tordal oral and self injections, imetrex oral and self injections, valuim for muscle tension. I take rarely a Percocet as a major rescue with the expected sometime rebound. My issue now that your put to date on me is- Botox is causing serious serious neck pain. I'm at my limit with everything I've gone through. But have never had a side effect like this. I tried Botox years ago but before FDA and no pattern. I did nothing. Does anyone have advice??

I am so sorry about your suffering so much Alonna. Even if I so not have any suggestion about what else you could do, because I had none of the treatments you mention I wanted to express my empathy.

Is it possible that Botox has interfered somehow with some of the invasive treatemnts that you have received in the past? It seems that indeed some doctors might have been experimenting with all these horrid treatements in your case.

You seem to have too many of them, especially when there was no evidence that any of them are helping you. Who has been suggesting all these treatments to you? Is it your neuro? Id so, maybe you need to think of changing him altogether and seek some new ideas.

BTW Botox effect usually wear off anyway, so maybe as they days go by your s/e will get easier.

I di have some Topomax but had such abad reaction that after few days I was told by my neurologist to stop it immediately. He also told me that is something does not work after 3/4 weeks it means it will never work, and we must stop it.

After all any withdrawals, if you get them, will last just few days but if something does not work and is also causing you bad side effects, the only sensible action is to try and stop it. It is best to do it gradually and you might not feel signs of withdrawal so badly. It is best not to keep taking medication which is not doing us any good, anyway.

I hope you find some relief soon.
Mini
PS Can you please try to divide your text into some smaller paragraphs as many of us find it extremely difficult to read blocks of text and cannot read it unless it is in smaller chunks.

I too am sorry for you Alonna. I truly hope you find some relief.

Regarding Botox, I've had three sets of injections within the past 15 months. I stopped Botox because it only helped for the first few weeks and then back to normal daily migraines until my next dose in 12 weeks. The cost of Botox did not justify the little relief it offered. I suggest you contact your doctor quickly and advise about your neck pain. After the Botox, I had trigger point injections in the back of my neck. My muscles were so sore it was unbearable at times. The injections were steroid plus a pain killer, I think lidocaine. The pain relief was immediate and lasted a few weeks. My doc said I could get the injections every 4 weeks. So I did that three times after which my neck pain was gone so I stopped the injections. Maybe the trigger point injections will help your neck pain.

Regarding Topamax, my GP put me on it about 5 years ago. After a few weeks I noticed my ability to concentrate and do simple math was gone. I couldn't add 5 plus 2 without using my fingers. My profession, retired now, involved higher math, so this simple addition was ridiculous. I told my Doc and he said stop the Topamax. I did and suffered through the few days of withdrawal but was thankful my concentration and simple math ability returned. Hence I was able to stop the Topamax cold turkey. Maybe you are on a higher dose which requires weaning yourself off the drug.

I've been reading many of the threads on this website and find it comforting that I am not alone with daily migraines. At that same time I which all of us could just get rid of the damn things. Also my thread review seems to tell the same story about neurologists and their treatment of migraines. There is no one cure that helps all patients. They have a list of drugs to try and prescribe one after another until something is found to help. One fellow poster said they through everything at the wall until something sticks. That's perfect!

My brief story: I started having migraines about 6 years ago after I fainted and hit my head on the pavement. I was taken to the hospital and they found nothing wrong after a battery of tests. A few weeks later I had a full eye exam with dilation of my eyes. The bright lights during the exam set off my first migraine. I could barely see driving home but made it. All I wanted to do was fine a dark room and sleep with an ice pack on my head. That started a serious of doctor visits to 4 neurologists with the help of my GP.

The first one never examined me and suggested I take magnesium, B2, B6 and B12 to see if that worked. I did what he asked but realized he was a quack.

Then I saw my daughter's neuro. She has migraines too. This doc was most sincere and sympathic. He suggested I continue taking Vicodin and a triptan as prescribed by my GP. I wanted to stop using Vicodin and triptans, and find a cure for my daily migraines. So I kept looking for a neuro.

Next I visited a doc from the Cleveland Clinic Headache department. I took me 4 months to get an appointment. This doc was most thorough and spent about 90 minutes with me. We discussed my family history of migraines. My uncle had them, I think my Dad, I have one daughter that suffers from them and three grandchildren. So there is definitely a family history of migraines. This Doc drew four vials of my blood to do a comprehensive study. She asked me to await the blood test results and then she would prescribe medication. She was most polite and seemed extremely concerned. I thought I finally found the right doctor. Not so as I quickly learned. I went to the checkout desk to make another appointment to see the doc. That was in May and the next available appointment for the Doc was in January the next year. But I could see the Nurse Practitioner in four months. I figured I would be dead before this doc found a cure. The doc had her nurse call me in about a week and told me to start taking Vitamin D3 because my blood showed a deficiency. I started taking D3 immediately and after a few weeks my daily migraine frequency did not change. I called the doc and left a message about trying something else. I received a call from a nurse that said just wait until my next appoint to discuss options in three months. Nope, that wasn't the medical care I wanted.

My GP then sent me to the Cleveland Migraine Center. Now this was an operation that showed some definite promise. I could get frequent appointments and they would call me back immediately. My first appointment to see the neuro was only 3 days from my GP visit. The doc there is great and very sympathetic. That was 16 months ago and I have seen doc or an NP almost monthly. We've tried Botox, trigger point injections, various triptans and the most recently Lyrica. Lyrica is showing great promise in my situation. After starting a 25 mg dose three times a day, my migraines subsided and I was able to stop the Vicodin and triptans for an entire week. Then my body seemed to get immune to the Lyrica, so my doc increased the dose to 50 mg three times a day. That didn't work my dosage was increased to 75 mg threes times daily. After a few days, the migraines again have subsided. I'm hoping Lyrica is my cure!

When I got my first prescription of Lyrica, I had to pay close to $300 for a 30 day supply. That was after my insurance paid some. I have a $5000 deductible on my insurance plan to keep the premiums down. I found a source of Lyrica at 1/3 this cost. I get my triptans from a similar source. If you are interested, reply to this post with your email address. I just joined this Forum and therefore cannot give my email address for seven days.

May your days be Migraine Free Forever,

The Apps

As for the neck pain post Botox injections, I would expect it to start to subside over the week after the injections. If not, its something to discuss with your doctor. They may be able to give you a muscle relaxer or something topical to help.

Worst case it subsides some but takes the full three months to completely go away. The side effect profile of Botox is still significantly lower than some of the meds we try, but the downside is that sometimes they side effects can last the full time until the med wears off.

I had Botox twice. The first time was the recommended locations and I didn't have much of a problem. The second time I only got it in my neck & shoulders and it was pretty bad. I too had some neck pain, but also my shoulders ached whenever I moved my arms. It started to subside a few days in, and was pretty much gone by two weeks later.

As for getting off of Topamax, you need to consult your doctor. If you don't have / can't get an appointment soon, you may do something as simple as put in a call and ask for a taper schedule as you are need to stop it.

It is a medication that needs to be slowly tapered off of, as there is a risk of severe effects, even seizures in folks without epilepsy. Depending on your dose and the taper schedule, you may need to get smaller mg pills. As soon as you start to taper however, the side effects will start to subside. I too had a very tough time on it. I gave it a few months though, just in case the side effects would subside and it would start to help (but neither happened). Best wishes.

Thank you so much for your reply.
Sorry for the long thread but this sums it all up.
Yes I totally agree with you. My past doctors, I do not think they helped me at all and I questioned them each time I had a procedure or tried a new medication but I was desperate and realize now I was willing to try anything and be talked into anything they said would help. I was with kaiser so I thought a group of doctors would find a way to "fix" me as I just felt broken.

I recently switched to Sharp as I gave up on Kaiser. They labeled me a " high risk patient" after the stimulater didn't work the first time. Then my monthly medical bill got up to $769 for just myself not including co pays and prescriptions and not including my four children. This was well over 1000, . My migraines were ruining my life on top on my bills.
I was very nervous about switching to the unknown after 7years. However getting married, my husband support and changing to Sharp seem like the best thing to do.

After getting established which took some time. They do seem to be better than Kaiser. More understanding and concerned. Faster with appointments thats for sure.
But that is what leads me to believe your right about stacking procedures and sending me into the issue I'm having now. Sever neck pain from Botox.

I did the same trigger points like you (Mini) mentioned at the beginning of this month. I've had these before and they are extremely helpful for tension. Then 2 weeks later in my C-1, C-2, C-3 they did cervical medial branch blocks, a week later the Botox for chronic migraine in the pattern that goes into the neck.

This morning I woke up and I can not move my neck at all. Not back and forth not one bit. It's like it's stuck now. I have very limited movement from left to right.
My migraine sent my husband running for my shots and me in tears.
I'm feeling a little better as the migraine is now low grade. However my neck is stiff as a board.

I called the dr. He said put heat on it and take a muscle relaxer. As some neck stiffness is common with Botox ( but as I said it will not move at all) not just stiff.

As far as the Topamax- ugh!!
I am in the same category as everyone here who talks about it.
Simple problem solving is a joke. Going to the store and not remembering what for.
Its pretty bad when you have to write down on a post it, or make sure your alarm is set in your phone to pick up your child from school or soccer and dance.

Not to mention it's just stopped working so whats the point. I tried to just stop taking it and that was a bad idea as I did not know the side effects.
I had a seizure in the middle of a restaurant. It was the most embarrassing thing from what I can remember. I actually had several but don't remember much until I woke up in a ambulance. The hospital visit wasn't pleasant either.
I also lost my license for 6 months until I could prove I wouldn't have another.
Having four kids it was more than difficult not being able to drive.

I need to taper off. Now i know this. this site has been useful with this. The new docs at Sharp strongly recommend me getting off it as soon as they think my migraines are some what under control.

-The Apps
Like you all this started one day out of the blue.
I was at Dave and Busters. It's a place with a lot of flashing lights, strobe light, video games and laser lights that stream all over inside. I am very cautious of lights now. Especially at the eye Dr.
That is a definite migraine for me as well.. Two of my children also suffer from migraine. But nowhere near like mine thank god.

I just want to add,
My kids and husband hold me together like glue. I'm glad I have support a lot of people don't.
I'm holding my I phone up high in front of my face typing and venting because I cant look down. Sad, angry and frustrated. Grateful right now for this website because this really hurts.

Thanks for all your advice it really helps knowing I'm not the only one. And I feel bad for each of you as well and I wish I could fix all of us.

What dose of Topamax are you on?

100 mg a day. 50mg AM 50mg pm

That's good, it won't take long to titrate off that 25mg at a time.

Yes I'm thinking within the next 2 months I'll be topa free.. And today is a much better day than yesterday with the neck pain from the Botox. It's still stiff and sore but with more movement.
Thanks

I'd like to get off Topamax but every time I drop the dose my headaches get worse

That's really good your neck is better!

Thank you.. Today is even better than yesterday however I still have the low grade migraine. It might be from taking the medication (pain pills) to deal with the pain of everything.. I typically try to stay away from them, this being the reason why but it couldn't be helped.
But things are looking up.
About the Topamax honestly it scares me to try to get off it. I also got more headaches and the seizure incedent.
But after years of being on it and it no longer serving its purpose (I don't think) I want to try.
I've heard you have more energy, more of your mind back and a over all sence of well being just being off it.
I'm wondering if there is something to replace Topamax if needed ? I started taking it years ago. And in that time I'm wondering if theres something that's not so nasty.
I would love to kick it all together, but just in case I was wondering.
I heard of the lyrica but that is not a anti seizure so does it work the same? And I was also worried about gaining weight or having a seizure (even though I dont usually have seziures) taking something else if I had to. Also a little worried about the side effects from other meds?

Any advice on if I should just stop Topamax or try something else if there's something else?
Like I said a little scared. But I have to get off this stuff.
Thanks again

I read your thread and I really feel for ya! Right now I am on a tapering schedule to get myself off of Topamax. It did have some benefits but the docs wanted me off of it because of one of the side effects I told them about. It became more of an issue of keeping me safe so they took me off of it. I never had any issues with the topa before the docs drastically increased my dose. Even after they reduced it, the one s/e that worried them so much never went away.

My neuro gave me a script for Sibelium. I have to wait for the topamax to clear my system before starting this one.

You could try Gabapentin, Alonna. This is also an antiseizure medication and often given, like Topomax as a M preventative.

Yest it has some s/e but they fo not affect all people in the same way. Like for example some people complained about weight gain, but I have never found that this was the case, despite being on it for several years. Talk to your Dr about it, but as to s/e we know that each of us reacts differently, so you will not know how it affects you, until your try something.

I wish we did not need any of this horrid medisines and their nasty s/e, but in order to be able to fucntion at all, we have to take medicines which makes things bearble and allow us to f perform the most necessary tasks of the day.

Jilly: I have heard of some folks getting good results with Sibelium. Too bad since its not available in the US doctors don't prescribe it so much. My doctor was ok with prescribing it for me (and then me using an online Canadian pharmacy), but when I told him I wanted to give it a 6-8 month trial like I've heard can be necessary (at least for my condition which seems to be less likely and slower to respond to meds), he wanted to hold off until we tried a couple other things first. Hope you find it helpful. Best wishes.

Alonna: If the Topamax is working, is a tough call to decide to switch to something where you don't know you will respond to it. What about seeing how you do with the lower dose, such as if the side effects subside some without too much change in relief?

Its also common especially in tougher cases to be on more than one med, especially if they are in different classes. Nothing wrong with say a low dose of two different meds. If its a different class, you may be able to start up a new med as you taper down on the Topamax for less chance of increased migraine frequency/severity.

Other similar meds such as Neurontin, Depakote, Keppra, Lyrica, etc, may be slightly less likely to work (although everyone is different), but also may have less side effects. For me, I got bad side effects on three anti seizure meds, and was fed up by the fourth that as soon as the side effects started, I didn't want to see what would happen! I don't do well with any meds though. Anti seizure meds shouldn't cause a seizure in someone without a seizure disorder except in the case of if you quit them without tapering off.

As for side effects in general, they usually build up as you increase the dose, and therefore would decrease as soon as you would taper back the dose. Its best to give it some time to see if they subside, but sometimes you can't. In that case, have a plan in place with your doctor that you can start to taper off the med (or stop it if you haven't tapered up the dose at all) if you can't take it. Topamax is often considered one of the most likely to cause the worst side effects, although possibly the most likely to help as well. So, other meds are likely to go a little smoother.

Between all the classes of meds, there are many many options. You'll have to discuss with your doctor which route is the best for you. Sometimes what other conditions/symptoms you may have also plays into what med may be a good fit, such as Amitriptyline for someone who has an issue sleeping at night, or Inderal for someone who tends towards higher blood pressure. Best wishes.