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medmisfit
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PostSubject: Botox Injections   Thu Jun 30, 2011 2:43 pm

Treatment for chronic migraines secondary to IIH
Botox Injections

I am scheduled to have my first set of injections this afternoon, so wondered if anyone else has tried it.

I've had daily headaches for over three years now and don't tolerate medications, so the neurologist asked me to try Botox. The specialists all agree that the LP shunt is probably causing "migraine-type headaches", so they're hoping the Botox will be effective. From what I've read Botox only seems to be effective w/ chronic migraines, but if our body gets used to certain pain paths I wonder if it could be helpful for some of the symptoms of IIH?? Of course I couldn't find any information regarding Botox and IIH, but I contacted IHRF and they reported alternative therapies are generally ineffective. I do agree they are not a cure, but I've found other therapies that take the edge off so I'm trying to be hopeful. I just read that they administer 31 injections in 7 sites on your head and neck, so I'm really glad I tried acupuncture first..lol. Ok, that may be laughter.

I haven't met the neurologist that's administering the injections, so hopefully I'll have more information after my appointment. I let you know what I find out..thanks for letting me vent a little!

Julie


Last edited by medmisfit on Wed Jul 20, 2011 8:24 pm; edited 1 time in total
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Heidi
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PostSubject: Re: Botox Injections   Thu Jun 30, 2011 4:14 pm


Good Luck and I really hope they make a difference for you!

Love Heidi xx
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Happening54Child
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PostSubject: Re: Botox Injections   Thu Jun 30, 2011 10:21 pm

Oh wow! I do hope that this goes well for you! How did the acupuncture go? I mean, you obviously are still trying things out, but my mom has been on me to try acupuncture, but I'm not so hot on the idea. Anyway, let us know how things go! *HUGS*

hug

~Heather~
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PostSubject: Re: Botox Injections   Fri Jul 01, 2011 1:14 am

my fingers are cross

Good luck and I hope it works for you! Let us know how you get on! xxx

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medmisfit
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PostSubject: Re: Botox Injections   Fri Jul 01, 2011 3:40 pm

thank you I appreciate all your support! It wasn't what I expected, but it was fine. It's funny because I couldn't really feel the needles, but the injection was like a bee sting..I told everyone it was like being stung by a swarm of angry bees..lol. The forehead was the worst, but it didn't last long. I have some tender spots and tiny bruising today, but overall not too bad. Definitely not anything like I've endured w/ IIH! The neurologist said it could take a couple of weeks, but should last a couple of months if it works. He said it won't be a cure, but should reduce the frequency and intensity of the headaches...if they're migraines. I still think it's all from the LP Shunt and Chiari, but they're saying those things are just causing the migraines..potatoe, potahto?? Idk..guess we'll find out though. WebMD had some good information, if anyone's interested..it's Botox Injections for Chronic Migraines.

As far as the acupuncture..it's been fine, but I've only been able to make it to a couple of sessions. I have a lot of friends that have had success w/ migraines, back pain, etc. The practitioner is confident he can help, but said it may take some time. My neurologist was really pushing the Botox, so I've kinda put acupuncture on the back burner for now. I honestly think anything is worth trying, if you have the resources..it can get expensive and not many insurance plans cover these alternatives. Everyone responds differently and has different secondary issues, so it really just depends. It doesn't hurt though..I mean there are some tender areas where pressure/tension build, but it's usually very brief discomfort. Honestly, it's been a great relaxation tool for me, if nothing else.

I'll keep you posted..thanks again for the support!
Julie
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PostSubject: Re: Botox Injections   Fri Jul 01, 2011 4:43 pm

hug I'm glad that it went well for you and you wasn't in too much pain and I hope the botox works for you. Let us know if it does xx
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PostSubject: Re: Botox Injections   Thu Jul 07, 2011 6:17 pm

Thanks for the well wishes and support! At this point it's been a week .. the only thing I've noticed is I can't move my forehead and one of my eyebrows is crooked..LOL. The neurologist said it would probably take a couple weeks and just keep improving, so I'm trying to stay hopeful.
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PostSubject: Re: Botox Injections   Wed Jul 20, 2011 8:56 pm

Ok, it's been almost 3 weeks now and I'm not sure the Botox is helping. I can tell things are different, but if anything I feel more tingly, nauseous, and dizzy instead of constant pain..guess that's some sort of progress. I've really had mixed reactions so far..I've had some of the worst headache pain I've experienced in months, but sometimes it's more the nausea and visual stuff.

My PCP said she thinks my head just doesn't know how to process the pain w/ the paralyzing effects of the Botox, but I think I'm just not tolerating it well..as usual. She offered me meds for the nausea and dizziness, but then I just have more side effects to worry about..I've declined so far. I talked to the neurologist last Thursday and of course he didn't think any of it was related. He actually told me I should start feeling better in 2-3 days..well 6 days later, not so much. So far, still randomly missing work..good and bad days.

Hopefulness is fading, but I'm trying to convince myself relief is just around the corner..fingers crossed!
Julie
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Happening54Child
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PostSubject: Re: Botox Injections   Tue Jul 26, 2011 2:11 am

So, I am in the process of waiting for insurance authorization for my first set of Botox injections. No date yet...but my doctor is really hopeful about it. Any suggestions?
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PostSubject: Re: Botox Injections   Tue Jul 26, 2011 7:13 pm

The neurologist that did my treatment said he's had 80% success w/ migraine sufferers. It's supposed to help w/ the muscle tension and nerve responses, but everyone reacts differently. If they think you're suffering from migraines, I say go for it. It's been almost a month now and I'm not finding much improvement, but I tend to react differently to EVERYTHING..lol. I'm still holding out hope that it will all come together at some point. I'm seeing my Massage Therapist tonight for evaluation, so I may have more info tomorrow..I'll let you know what she says.

If anything, I would say be prepared for some discomfort. The needles didn't hurt at all, but the injections were exactly like bee stings. They fade fast, but some of them really made my eyes water. The forehead and base of the skull were the worst for me. I had very minimal bruising and soreness for a few days, but now just the numbing effects on forehead and eyebrows. I would check out the info on WebMD-Botox Injections for Chronic Migraines. They diagram the injection sites and everything.

Good luck Heather!! Keep me posted..
hug
Julie
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cincin72
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PostSubject: Re: Botox Injections   Mon Jul 16, 2012 12:13 am

I was given the botox treatments and sadly they had a very bad effect on me. They tripled my headaches and made life more miserable that drs had to give me a shot to help with the pain. I hope they help for you, I seem to be an oddity for the treatments. Hugs to ya!
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PostSubject: Re: Botox Injections   Wed Aug 22, 2012 8:00 pm

My doctor recomended the same thing but I am tired of trying stuff without any form of releif. I have had migraines since I was 7 years old and had two shunts placed in the head. They want to place a shunt in my back but I have major back problems. I was reading your posts and you said that the accupunture helped. How offten didyou go ? I hope everything works out for you.
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medmisfit
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PostSubject: Re: Botox Injections   Wed Aug 22, 2012 9:13 pm

Yvonne, my sessions varied..I think I started w/ two visits a week for acupuncture. It felt really good when I was there, but didn't last long. I was having low pressure stuff at the time and couldn't keep making the 30min drive. It did help w/ sleep, weight, and mood. I'm hoping to try it again now that shunt has been adjusted. It was $50 per session, but practitioner was very nice and offered me discounts because of all my medical expenses. He wasn't familiar w/ IIH, but seemed to understand it and thought he could help me. He told me I'd been suffering w/ it for years, so would take time. Let me know if you have any other questions.

Good luck, and keep me posted!
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PostSubject: Re: Botox Injections   Wed Aug 22, 2012 9:32 pm

Thank you that gives me some hope out there.
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LSam
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PostSubject: Re: Botox Injections   Mon Jul 29, 2013 6:49 pm

Neurologist trying to talk me into it but the side effects seem too much of a gamble. Thoughts?
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Wylee
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PostSubject: Re: Botox Injections   Tue Jul 30, 2013 3:46 am

I am considering Botox for my facial weakness post Ramsay Hunt (I have unilateral facial weakness - it was completely paralyzed) and am wondering if it may be worth persuing now, for both?!? I see my Neurologist tomorrow.  I'll see what he says, and the plastic surgeon on Wednesday.  Maybe between the two I'll find someone willing to try it.  Ugh!  I HATE needles. :roll:
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PostSubject: Re: Botox Injections   Tue Jul 30, 2013 4:15 pm

LSam-I would say it's worth trying because we are susceptible to so many different headaches..could be a migraine on top of IIH, so help with some symptoms. It didn't help me at all, but we later found that my shunt was overdraining. It's expensive, so make sure your insurance will cover it first. Good luck!

Linda-I hope they're able to find something that helps. I really didn't notice the needles, but the serum stung a little in different spots. Please keep us posted..good luck today!!!
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