Hey everyone. Having a particularly bad week, getting sharp pain in my base of skull with the slightest movement of my head, sitting at my desk just feels like stabbing in the base of my skull which is making my slouch and causing back pain. Anyone in good tips to manage this? I had Botox injections for cervical Dystonia about 4 weeks ago and think it’s making it worse (battle between my neurologist and neurosurgeon, one thinks Botox, surgeon says no) pain killers aren’t cutting it, I have a topical pain cream I’m rubbing in that isn’t helping either. Anyone get this feeling and have advice on how to treat it? I won’t be having surgery until atleast January so need to find ways to manage
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That sounds grim, trying to manage the pain while working…I didn’t have that, so can’t offer any helpful advice other then the usual suggestions for pain management- trying icing the area when you can, heat otherwise might help, if you could rig up heat or ice packs round the back of your head you might be able to still work? Can you adjust the height of your chair or computer at all? Would a soft neck collar help you to stop moving your head? If it’s nerve pain which it sounds like it could be then maybe try a different med for that , are you still taking the Gabapentin? What topical pain cream are you using? Some members have tried lidocaine gel or patches which have helped too.
Thinking of you & hoping someone else might have suggestions…
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Besides all that @Jules said, the only thing I can think of to help is if you have a desk job, which it sounds like, raising your computer screen to eye level & holding your phone at eye level when using it so you don’t have to look even slightly down, could help a lot. This would also apply once you’re back at home even with the television if you watch it.
Some people have gotten relief from muscle relaxant medication so that might help.
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I’m briefly trying a soft collar but find I can only wear it for so long before it creates more neck pain and increased my pressure. Think the compression of the collar compresses my jugulars even more. Maybe the inflatable ones could be a good try. The cream I use has a few different pain relievers in it but have never found much benefit from topical pain creams
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Yeah I have a desk job and luckily can work remotely so help’s on bad days. I’ve tried to make my setup as ergonomic as possible, good chair and headrest definitely helps.
Thanks on the muscle relaxant suggestion, that’s actually the only thing that works for me. Since they gave me clonazepam that helps a lot but my tolerance is pretty high now. I think they help significantly for me since my main cause of compression is my digastric muscle so if that relaxes it frees me up a bit. Think I’m starting to feel better today have just been trying to take it very easy but man I can’t wait to get this surgery.
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@Benwt - I’m glad the muscle relaxants help AND that your symptoms are lessening. ES symptoms are maddening that way i.e. they cruise along at a tolerable level for a while then w/in a few hours can seem debilitating which can last for days & sometimes weeks before easing up again. 
Good to know you work from home & can create the most comfy work space possible for yourself. That is definitely ideal!!
Did you tell us your surgery date yet? I’m sorry, I’ve forgotten if you did.
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I’m still waiting on a date as my Neurosurgeon has gone to his multidisciplinary team to finalise what the surgery will entail. Likely end of January once I figure out insurance stuff and try pull together my estimated almost 15k out of pocket. Surgery better work because I won’t be able to get that again lol. I think potentially what’s worsening me is it’s winter here in Australia and has turned relatively quickly. The cold weather never helps me just tenses everything up. Those warm summer air evenings are a godsend to me
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@Benwt - We’ve had a number of members who’ve commented that their symptoms get worse in “bad” weather i.e. cold or rainy/snowy/foggy. I have to wonder if shorter daylight days we get in the winter also play a role.
I used to find the same thing with cold weather 
I don’t know if this helps but sometimes when I have pain in the “back of the skull” it’s actually coming from my hyoid bone and kind of radiating backwards. I find that trying to stretch the front of the neck gently and relaxing the tongue and the jaw helps. I also find stretching the hamstrings helps with neck tightness as well.
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Not always possible but soothing: lie in a hot bath with head submerged as much as possible so the water takes the weight. Also standing under a hot shower, gently massage the front and side of neck so your head can gradually extend a bit more from a flexed position it has probably adopted because of work. Topical stuff such as tiger balm, biofreeze etc won’t do any harm so worth a try as also heat pads. Then dose yourself up with what meds you find useful and of benefit xx
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Hot bath is a good idea, I don’t have a bath although I might go to a pool with a jacuzzi and rest there for a while. Strangely enough since this started submerging my head in water makes it feel like it’s going to explode, that’s one of my weirdest symptoms not sure if anyone else had that
@Benwt - Epsom salt baths have been recommended by some people, but in the absence of a bathtub that would be difficult. You could mix up some epsom salt in water, soak a small towel in it, & put it around your neck for about 10 min., and that would serve the same purpose. Doing this in your shower would allow you not to need to ring the towel out so you’d get max benefit from the epsom salt.
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It’s maybe the intracranial pressure; lots of us with head pressure feel that the ear pressure is like being under water? Heat helped relax the muscles for me, which was lovely, but too much heat (very hot bath, hot tub or hot weather which we occasionally get in the UK!) would increase the head pressure & symptoms…we’re all different, hope you can find some tips to ease things for you!
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Managed to get some better 3d renderings of my ctv where I can see the c1 compression the right ijv, the styloid appears to be quiet thick in that side too. Surgeon says main thing compressing is also my digastric muscle which unfortunately I’m not able to see. Interesting looking at the left side pretty much can’t see my ijv at all but this lines up with what my surgeon has said
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Well done with the images!