Reading up about PTSD as this is a condition that is connected to MAV, being trapped in a Sympathetic state (Hyper-vigilant, Hyper-stimulated). Anyone here that has tried Botox or a nerve block such as Occipital tried a Stellate Ganglion Block and if so what was your experience? Quick research says the positive effects could last months to years with procedures in the UK being in the region of £300 - £1000.
Are you asking if we’d tried both Botox and the nerve block?
Well asking if anyone has tried it really but if the people who have done injections considered this?
I’d never even heard of it. I’d be game to try it.
I’m none too patiently waiting for Botox. Dose was due 4/27. Now scheduled for 5/19. I hope. I’m definitely feeling the effects of MAV’s return. I hadn’t realized nerves aren’t just paralyzed. They grow back. Had a plain awful Cefaly experience the other night. The machine cycle ended but the sensation just kept ramping for over an hour afterwards. Like a thousand little electrified ants crawling over and under the skin of my face and scalp. I was already hallucinating from aura. A total shitshow.
I think my husband would support the stellate ganglion block, if just for the temporary paralyzing effects on the vocal chords. He’s heard enough microeconomics doom and gloom from me to last forever.
I’m also game. I’m going to send an email to a clinic and find out an exact cost. Maybe theres a special COVID Price list?!
Best case scenario, it works and i have to get say 2 injection per year… i’d buy that.
I’ll let you know.
I’ve had Occiptal nerve blocks twice.The first time I wasn’t sure whether it helped and the second time my dizziness went crazy and I felt really unwell for several weeks (but the headache clinic doctor said that was impossible after an ONB). I’d only heard of using a Stellate Ganglion Block in terms of chest pain and upper limb pain not for MAV type symptoms. Why do you think it might help you?
I think it will help because i believe PTSD is in the same realm as Vestibular Migraine and at initial glance it seems to be effective for that.
I think there is a lot of ‘cross pollination’ between other conditions such as: Anxiety, PTSD, MCAS, POTs, Diabetes, TBI, MS etc. There is a Hyperadrenergic, Neuropathic, Dysautonomic, Autoimmune bent to VM in my opinion and all the current pharmacological tools being used are in most part trying to slow down the excitement of the CNS. People with PTSD have lost that homeostatic regulation of their nervous system and therefore hormones are all over the place and are therefore open to other diseases such as Diabetes (secondary) etc. VM is the same, there is no longer any fidelity in how the body responds to stimuli. This SGB ‘could’ work by switching off the stress response to the brain (control center) and normalise communication with the other glands in the body.
Just a fawt…
In some ways I can certainly see where your theory is coming from and PTSD could certainly be a result of recurrent Vestibular Migraine as can Anxiety. Drugs used currently are designed to slow down the CNS excitement as you say. Central Sensitisation was what made so much sense to me when I first hit upon it in my own journey. All the pieces of the jigsaw fell into place once I came across Central Sensitisation and got my head around it. All the very best if you do decide to go ahead with the SGB.
If the nervous system is constantly firing for whatever reason then this SGB might interrupt the signalling to the brain and hopefully calm the system. I’ll see after a little more research and i’m back home.
I think that was the though regarding the vagus nerve simulator trial, too. It might work on a continuous (implanted) basis, but the short term electric, external shock didn’t do much for me in the month I gave it. Then again, Botox came on the scene for me simultaneously so I can’t really say what worked, other than Botox obviously did until it wore off. SGB sounds like it’s along similar lines of thinking as both of the above.
You no longer have the vagus nerve stimulator?
I looked into GammaCore at the tail end of last year but was disgusted by the ‘top up’ pricing structure of the product and red flags went up. You’d probably be better off using something from Ann Summers…
Price was definitely a factor. At $300 out of pocket per month ($600/month after the first year), I’m expecting to be impressed. More meh. I let it go after the first trial month. My Cefaly does a better job for a fraction of the price.
I’d be keen to know how you get on, aside would love to try it.
I suffer from PTSD and developed chronic VM.
Sure i’ll keep you and everyone informed if i go ahead but i reckon it won’t be until the tail end of the year if i do due to lockdown. Theres a close link between PTSD and VM after reading into similar conditions and what helps one should help the other
I’m very interested in learning more about this procedure. I’m so glad you mentioned the CNS link amongst TBI, PTSD and VM. I also believe there may be a link with CRPS as I suffer from all 4 and my qEEG maps are solid red on one of the brain waves and predominantly red on most others. My pain management doctor does lumbar sympathetic blocks regularly for my lower extremity CRPS and they are somewhat helpful but always need to be repeated. I’ve also tried a spinal stimulator - unsuccessfully. Next, my doctor has suggested ketamine infusions but I would need to get clearance from neurology for the TBI and psychiatry for the PTSD/Anxiety/Panic. From what I just quickly read about the Stellate Ganglion Block it seems like a great option to discuss with my pain management doctor when I see her in a week.
I’ll be interested to hear more about others experiences with this procedure.
It’s crazy to think I posted this so long ago. Was expecting to be out of lockdown by last October… maybe I am an optimist after all
I haven’t inquired further about this as I haven’t seen a doctor since. It’s worth looking into but like a lot of procedures and medications it’s about interrupting the stress response in the body. Have you discussed it with your doctor yet?
I’m seeing my doctor this week and am making a note to ask about this. I’ll post back when I hear something. I found this interesting because I undergo regular lumbar sympathetic blocks for different condition (CRPS), but the concept is similar about trying to calm the autonomic nervous system down.
Ok, post back when you have more information. What part of your body do you experience CRPS?
I have CRPS in my right foot/ankle.