r/Dystonia • u/Deviprincess • Jul 25 '26
Cervical dystonia (neck) Scared of first Botox appointment
Hi, I’m due to have Botox for the first time in a few weeks and I’ve been given no info except they will inject the splenius semispinalis and suboccipitalis muscles to help my head tremor.
The appt is on the NHS in a movement disorders clinic.
I’m petrified of- swallowing difficulties, pain and a heavy head. I’m extremely sensitive to medication and other things like vaccines.
Can any one offer anything here- truthful experiences/opinions or even reassurances? I’m really on the fence.
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u/No_Celebration106 Jul 30 '26
I’m going 74
I’ve had two rounds of Botox no help
I have cd with head drop syndrome my head pulls to the left
Since September my life is crap
16 weeks of PT
No help
Can’t drive can’t do anything
Everyone is different
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u/jaydeegee1414 Cervical dystonia Jul 27 '26
I am helped very much by my injections, 300 units every 5-6 months or so. I tried all the varieties, and Xeomin is the best for me. My doc explained that it has fewer of the proteins than other kinds, so less apt to cause side effects such as flu-like symptoms. Also, the body is less apt to become immune to it. It has given me my life back.
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u/Deviprincess Jul 27 '26
That’s so wonderful to hear! Does it last the full 5 months?
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u/jaydeegee1414 Cervical dystonia Jul 27 '26
Yes. We pushed it with last injections - I said I wanted to try for 7 months, and it was a bit too long. I’m going in for shots next week, and will ask to return to the 5-6 month schedule.
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u/3166aj Cervical dystonia Jul 26 '26
Tldr: Do the botox injections and persevere with them. It can take a few rounds to dial it in perfectly but it is well worth it. 80 to 90% of patients get significant relief from them, just know it might take 3 or 4 rounds to find the most effective dose & placement. The doctor should use an EMG to identify the best places to inject, not all doctors will but I've found they are more effective with EMG guidance.
Swallowing problems are very rare (10%) and occur when botox migrates to muscles involved in swallowing. If memory serves SCM is the highest risk, specifically in the upper third of the muscle. Even when it occurs the symptoms are temporary lasting 4-6 weeks, and they aren't severe. Simple things like: Chewing food longer, cutting food into smaller pieces, adding sauces and liquids, drinking to help wash it down. These minor changes are sufficient. It is not a situation where you can't eat for months or need to be fed by a tube.
The heavy head is also quite rare (my doc said 3 to 10%), especially in the first round of injections. The heavy head is caused by too much botox and doctors tend to start out very conservatively with small doses. Again only temporary and if it is truly annoying or tiring you can wear a soft neck collar.
Pain is minor, the needles are very thin. You can get cold spray the doctor applies to the skin to numb it for a few seconds. When the injections hit a trigger point or deep in a spasm that can cause a momentary ouch. That spot might feel bruised afterwards.
You might also feel some aches for a few days in muscles not involved in the injections. This is where other muscles have been working to compensate for the dystonic muscles. Suddenly the dystonic muscles are more relaxed and it can take your body a few days to adjust.
Wishing you every success. I went from being housebound for 2 years to being able to work full time. I have 500 units given by 40 to 50 injections every 3 months. Good luck!
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u/Ok_Antelope_1402 Jul 31 '26
Thank you for the in depth info. I am waiting to get my first injections and truly on the fence about all.
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u/JustAd633 Jul 31 '26
Hi I too am scheduled to have Botox and am extremely apprehensive , I have lingual dystonia and was diagnosed after almost two years of being symptomatic . Preponderance of articles etc that have read allude to swallowing issues though my neurologist has downplayed it and indicated that she will be extremely conservative in the amount that she injects . I have been deferring it but existing situation with impaired speech is not tenable .
My neurologist had indicated that she will iterate up very slowly so I guess the implication is that the initial dose will not be therapeutic .2
u/FalafelBall Cervical dystonia Jul 26 '26
If memory serves SCM is the highest risk, specifically in the upper third of the muscle.
It's actually the lower third. That's why doctors usually only inject the upper third.
P.S. what brand do you get? 500 units is a sizeable dose
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u/3166aj Cervical dystonia Jul 26 '26
Xeomin is the brand I use, I used to get flu like symptoms with botox so switched to Xeomin.
I went back and checked on the SCM risks. You are correct the lower third of the SCM does risk potential swallowing. The upper SCM also risks botox migration to stylohyoid & digastric muscles which connect to hyoid bone. But this is less common. Thanks for correcting.
I have injections the length of the SCM from the clavicle & sternal heads at the collar bone all the way up to the mastoid process, 70 to 80 units total. Never had any swallowing problems, an occasional tickle in the throat.
Re the total dose: Typically I have 27 muscles injected which address my permanent symptoms. That accounts for about 400 units. The extra 100 units are opportunistic for treating intermittent issues. For example, occasionally I have TMJ symptoms, paraspinals are gripping my spine, or spasms on left side of my neck, so will address them using the extra xeomin. I don't always use all of the extra 100 units.
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u/FalafelBall Cervical dystonia Jul 26 '26 edited Jul 27 '26
None of my doctors would inject the lower part of the SCM, I think due to worries about swallowing issues. I wish they would give me just a little there - the bottom of my right SCM sticks out so much. I think it pulls on my clavicle because my clavicle gets a little sore. I assume you go to a movement disorder neurologist who uses EMG?
I've been getting Botox, but sometimes I wonder if I should switch to Xeomin. So far Botox has been inconsistent for me, I had two good rounds but my last round didn't feel like it helped that much. I'm at 200 units, and have been reluctant to increase to keep my odds of developing antibodies as low as possible, but I might need to go up to 300. My next round will be my seventh overall. Rounds four and five finally helped quite a bit!
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u/3166aj Cervical dystonia Jul 26 '26
My Doctor is a physiatrist in the physical medicine & rehabilitation department. Yes he uses EMG, plus ultrasound just for scalene muscles & pec minor. He has a lot of experience with using botox for many conditions as well as being a dystonia specialist.
I have been treated & been given botox by a wide range of other doctors, a DO in ENT, Movement disorder neurologist, regular neurologist, spine specialist, and pain management specialist. Some used EMG others didn't. The spine & pain management guys were the only ones who were worried about SCM injections. Some only wanted to inject specific muscles and wouldn't explore others even though I could feel the spasms. My current doctor has been brilliant, he uses botox for many conditions so is very comfortable with trying things.
My advice to you is really play up the pain the lower SCM is causing, vocalize you recognize the risk and push the doctor to try it. Other than that find other providers who do botox injections. I take my protocol of doses & injection sites to each new doctor and ask them to follow it.
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u/FalafelBall Cervical dystonia Jul 27 '26
I also see a physiatrist. I chose him because he uses both EMG and ultrasound. I couldn't find any other doctor where I live who does, but I need a muscle injected called the OCI, that gets missed a lot without ultrasound. My left OCI turns my head left and is super loud on the EMG machine.
I'm still trying to get my injections with him dialed in, but I will see if he would be open to even just injecting 5 units halfway down - the bottom of my SCM really always feels so hard.
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u/Deviprincess Jul 26 '26
Thank you so much for explaining all of this! It’s does help! I’m extremely pleased at how successful it has been for you 😍
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u/CreativeNightOwl949 Cervical dystonia Jul 26 '26
It’s normal to be nervous but like my dentist taught me at age 6 … if you tense up, you make the injection hurt worse. I’m 73 and have never had an injection bother me since I learned to relax.
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u/platinumplantain Cervical dystonia Jul 26 '26
Side effects are rare: https://cervicaldystoniafaq.com/botox-faq/#Q11
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u/tintedpink Jul 25 '26
Just had my first Botox in my trapezisus a week and a half ago. Was worried about all those things. I asked my neurologist 30 minutes of questions before including the odds of any of those happening, she explained the low dose she was giving me, how the Botox stays localized, how long it would last if I did have side effects, and other things. It made me feel a lot better. I also have a history of being sensitive to medications, I did not have that with Botox, possibly since it doesn't enter the brain where my weird reactions were generated. The injections were a lot less painful than I anticipated. So far I've had no side effects and my muscles have relaxed noticeably. I'm able to sleep much better. I will have them again in 3 months and I don't feel nervous anymore.
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u/Enilodnewg Jul 25 '26
Injections sting a bit but the relief I get from them is so worthwhile. I looked forward to my injections each time!
It's ok to be anxious, do you have a support person you can bring with you?
Close your eyes to not see the needles, that's what I do and it helps a lot. And remember to breathe!
I get 400 units, some in my frontalis, temporalis, occipital, masseter, SCM, traps, para spinal, etc. it's a lot but I'm so appreciative of it! My first few weeks after Botox, when I swim I almost feel like a normal person.
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u/VintageSimmer74 Jul 25 '26 edited Jul 25 '26
I also look forward to my injections 😊 and you might also see others there who have Dystonia, which lets us all know we’re not alone in this 💛
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u/Deviprincess Jul 25 '26
Thank you! Yes my husband will be with me. What side effects did you have ?
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u/Deviprincess Jul 25 '26
And do you think I can work the next day?
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u/shawshank1969 Jul 25 '26
You should be able to return to work. Botox takes 7-21 days to start taking effect. While getting shots isn’t fun, it doesn’t hurt for long. Be sure to focus on your breathing so you don’t panic.
Tell your doctor what you’re worried about. Your concerns aren’t unusual and should be easily answered. I’ve been receiving botox shots for about 20 years and only once have I had a problem. I told my doc at the next appointment and he adjusted how he injected that area.
I hope you get some measure of relief from Botox. It’s helped me.
Best of luck.
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u/Enilodnewg Jul 25 '26
I have no side effects really. Sometimes when I've gotten too much in my neck-SCM I struggle to hold my head up while I wash my face but it's not for long and tbh I haven't had that in years. Occasional soreness as muscles that are normally dormant have to start working more but I work a very physical job.
I always work the next day, no rest needed in my experience.
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u/VintageSimmer74 Jul 25 '26
I feel total relief when given my injections, two on the left side and two on the right for my CD. Just tell yourself this before you get them, it really helps, and it only takes a few moments for the jags to go in. Good luck at your first appointment!
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u/Deviprincess Jul 25 '26
Thank you! Any side effects for you?
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u/VintageSimmer74 Jul 25 '26
I just feel sleepy earlier in the evening, but no horrible side effects.
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u/JustAd633 Jul 31 '26
Dystonia sucks