Has anybody experience relief of ES with Gabapentin.(If so, what dosage) I’m experiencing side effects but I’m not sure if there worth it… My throat is really bothering me and I’m feeling a little anxious today. I have an appointment with my pain Doctor on Thursday and I’m hoping to schedule a cat scan… I would like to avoid surgery but if surgery is absolutely necessary, then I’m ready for that!
Thanks,
Nick
I was on Gabapentin for sciatic pain in legs and feet and my Dr switched me to Gralise which is supposed to be a faster acting form of Gabapentin. I have received some relief I think in my legs and feet, but I’ve noticed no improvement in my ES. I’m on 1200 mg of Gralise daily now.
Good luck and God bless.
Hi Nick,
Most people on this forum who try anti-seizure/nerve pain meds for pain control of ES don’t find they help long-term. There may some temporary relief or partial relief, but sadly, the only way to recovery from this “dirty bird” is surgery. Though surgery is a scary thought, you may come to a point where it feels like your best option. I actually looked forward to it & am so thankful for the positive changes it’s made in my life.
How do you get people to actually help… I’ve been to so many doctor’s and they don’t day anything about surgery!
If you can see a doctor experienced in ES, then they’re more likely to offer to help. The surgery is tricky & risky, so most don’t want to try it! Alot of members have had to travel a long way to see Dr Samji or Dr Cognetti for example, as they seem to have done the most ES surgeries in the US.
If that’s not possible for you, then try a skull base surgeon/ otolaryngologist, or a head & neck cancer surgeon, as they’re used to operating in the same area- I think there’s been more members getting lucky that way rather than with ENTs recently. Good luck!
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It’s just difficult… How do we know that we aren’t crazy… When the whole world is telling you there is nothing wrong… It’s exhausting!
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Trust me when I tell you, YOU AREN’T CRAZY! ES symptoms are very wide ranging because of the number of cranial nerves & vascular tissues that reside in the same area of the neck as the styloids. Doctors aren’t used to evaluating symptoms of irritated cranial nerves & thus don’t check for that as an option. So, the bizarre or disabling symptoms caused by ES are dismissed as psychological or emotionally based because they can’t explain them any other way. In turn this makes the ES patient begin to question his/her sanity without cause. ES by itself can make one feel crazy because of pain & other associated symptoms.
My recommendation would be to contact Dr. Samji’s ofc & request a telephone consult. You will need to send him your CT scans. He does charge for a phone consult but at the very least, you’ll feel validated rather than dismissed at the end of your conversation. That in itself should be helpful for you. You will need to contact his medical assistant as she sets up his appointments - kimberly @ caminoent .com (Leave the spaces out when typing email address. They have to be included here or the site blocks the address)
I hope this info helps you.
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Hi, you wouldn’t happen to know how much the phone consult cost do you? Thanks!
500 for a phone consult with Dr. Samji which includes the pre and post op visit if you decide to proceed with surgery.
Heya VCKid1982,
Personally, Gabapentin provided 0 relief and whole bucket full of side effects. Low doses made my legs swell so much I couldn’t fit my boots over my calves. Higher doses had the leg thing as well as giving me the spins and vertigo so bad I may as well have had an RX for vodka.
It’s hard to get people to help, especially with something so unusual. I like to use the analogy of car repair for medical care:
Think of how many tire and oil change places you see on a regular basis. It’s easy to find someone to change your oil, fix your tires, etc. But how many specialty transmission or engine care places do you pass on the road? Is the oil change/Jiffy Lube going to know enough about your problem to even discuss it, or just do the basics and send you off in your own?
Sometimes it’s professional apathy, sometimes it’s the practice that has Dr’s stretched so thin time-wise they can’t address Super Mystery Disorder, and sometimes people just have NO idea what they are looking at.
In some ways that protects you, because the clueless people won’t be trying to cut into your neck, but it’s also very limiting and frustrating.
Early on in my diagnosis, I had to correct my ENT on which was the patient right and left side when viewing a CT scan. When he finally oriented himself, he was very surprised by the size of the bone spike I was growing out of my hyoid. After reviewing my scans with a senior Dr, he was willing to do surgery. His first. Someone was finally willing to look in to the issue, but, might sound Crazy, I didn’t want that guy poking at my neck bones!
Don’t give up on getting better, and keep trying to find new people. Send your tests and info to practices like Dr Samji and Dr Cognetti (the transmission specialists in this analogy) and see what they say.
For Dysonsmom too-
Dr Samji does a phone consult for a fee. This could be very helpful. Dr Cognetti is willing to review your files for free, someone will call you if he feels you qualify as a patient and wants to investigate further, but he does not do long distance tele or video sessions until post surgery.
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Hi Dysonsmom,
Health insurance will often pay all or part of the cost of a phone consult depending on whether or not the doctor is in network.
Ok thank yall!
Gabapentin only made me get high. Seriously. The feeling is awful. I don’t understand how some kids these days like that feeling.
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Mayela,
I think every person responds a bit differently to Rx meds. I, like you, tend to get extreme side effects, but for others, the side effects may be more minimal or the effectiveness in treating the symptoms overrides the side-effects in that being relieved of pain, or whatever, is more significant to the person than having to deal w/ the side effects.
If you’re referring to kids taking it illicitly, then I agree w/ you…why? I, myself, don’t like the feeling of being “out of control”. I guess for some people life is tough enough that, that feeling gives them an escape. I don’t condone it, but can understand why drugs are abused.
I’ve been given Gabapentin today. I finally spoke to my GP about my symptoms and he’s expedited my ENT referral which was originally made in August!
I’ve taken Pregabablin before and that makes me feel drunk. Can’t walk straight! So I’m curious to see how I’m going to feel in a few hours!
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So glad your GP is being proactive to help you, Rebeckett! That’s great news!