alcohol and glycerol injections are even more destructive than nerve blocks. they use more caustic chemicals to ablate the nerve, long term (sometimes permanently). if it doesn’t work, you end up with anesthesia dolorosa, which is numbness with pain, an unfortunate permanent (currently in medical times) nerve injury.
if your pain is truly bilateral, i would consider a spinal tap for more data. any practitioner worth their salt would do it to investigate any potential red flags. it’s uncomfortable, sometimes painful and will cause you additional head pain afterwards, but it is temporary.
the researcher
Katie said:
Thank you all for the advice…wow, I got a bunch of it! I guess I was hoping the nerve block thing would be a no-brainer and easy way to try something, but that doesn’t sound like the case. Did any of you have alcohol or glycerol injections? Just curious. Well, I am 6 weeks til I am due and the ultrasounds show that all measurements are good and in line…however, I am measuring 5 weeks smaller than I should which could indicate a smaller baby. (Good for the birthing process, but scary for whatever that means). I am currently on 2400 mg of Neurontin, 20 mg valium, and 40 mg hydrocodone, so I am going to try to wean off of the valium and hydrocone to see if that helps with the baby at all…plus those are both addictive so my doctor wants those to be at the lowest I can go when I have the baby. This has been a very hard pregnancy for me…haven’t gotten good cooperation from doctors, neurologists, ect…and just being pregnant is stressful in itself…and stress is certainly one of my triggers. Lori, I don’t have any good advice besides make sure to find someone that is willing to help and be on your side before you get pregnant. I have had at least 5 doctors write me off because I am and won’t even take my calls. The steriods this time around really don’t seem to be helping me. So not sure why they have in the past, but I guess. I don’t know which neurologist I will work with after the pregnancy but I know for sure they will try me on tegretol and an anti-depressant. Is is best to just try to find medications, or do we have a chance to find something more permanent. I know that the medications mess with my head. I don’t like that. And honestly, I don’t want to have to be on medication the rest of my life - - - but I need to look at all the alternatives first. Oh yea, and I agree, if we had epilepsy, a doctor would still work with us. I even called the epilepsy foundation and they agreed, but could not find me a doctor remotely close to where I live that would help me.
researcher,
I did not realize there were even potential complications with those injections. What is nerve block then? I guess I was thinking they were the same thing. I will make sure to get the spinal tap done. Have you ever heard of trying botox injections? Mabye I will find better medication after this pregnancy…all I know is that the gabapentin does help, but I am not on top of my game by any means so I have experienced the whole memory, IQ thing with topamax. I feel like they just make me dumb. Anyhow, I thought maybe injections would be able to elimated the side effects from the medications, but I maybe find one that works without the side effects…hopefully! Thanks.
in my opinion, topamax can be sedating and difficult on memory. i have tried gabapentin but it did not agree with me.
a nerve block is like a dental shot at the office. an injection of anesthetic is deposited near the nerve, sometimes in conjuction with a steroid medication. it is not considered destructive.
injections using alcohol or glycerol are considered destructive because they use ablative chemicals to injure the nerve in an effort to disable the pain signals. these fall under the umbrella of rhizotomies; injections which usually leave you with more long term numbness in exchange for longer pain relief. in my research, statistics show people with atypical and otherwise unexplained pain usually worsen their pain with these procedures.
according to research, bilateral symptoms suggest a systemic or anatomical maladaptive process happening. if you are certain your TMJs are not a factor (this can be ruled out with an MRI) then, a spinal tap could provide some answers. as i said, it’s no walk in the park, so speak to your doctor to find out if it’s the right decision for you.
lastly, compounding pharmacies provide pain medications in the form of transdermal gels, oral gels and patches, providing doses which are sometimes a fraction of the oral requirements, sidestepping a lot of the systemic side effects. you can google the topic for more information.
remember, i’m not a medical doctor, speak to your own to decide the best course of treatment.
Katie said:
researcher, I did not realize there were even potential complications with those injections. What is nerve block then? I guess I was thinking they were the same thing. I will make sure to get the spinal tap done. Have you ever heard of trying botox injections? Mabye I will find better medication after this pregnancy…all I know is that the gabapentin does help, but I am not on top of my game by any means so I have experienced the whole memory, IQ thing with topamax. I feel like they just make me dumb. Anyhow, I thought maybe injections would be able to elimated the side effects from the medications, but I maybe find one that works without the side effects…hopefully! Thanks.
I have the exact same symptoms you have. Could you please contact me when you have a moment? I have some questions for you. I hope you are finding relief.
hi i have a very similar condition, which has been constant for 20 years, i have had every test and explored every diagnosis conceivable to no avail,
having said that i am getting healthier and im fully in control of my life running marathons is a hobby for example,
i am interested in 3 areas in realtion to BILATERAL FACIAL PAIN
1/ autoimmune links with this problem - has anybody had any tests? i suffer from mild reynaulds syndrome
2/ does anybody have digestive system symptons - hiatial hernia / reflux / constipation?
3/ has anybody had heart symptons? murmur / any of heart disease - people with severe heart problems (which i am sure none of us have) occasionally present with bilateral facial pain -
I have bilateral facial pain and hiatial hernia. I take trileptal for the ear pain and jaw pain of both sides. I take effexor for the burning mouth pain and it works very well for that. The trileptal has the other pain controlled.
have you or your doctors speculated how the hernia maybe related to the bilateral facial pain,
i have read that the area around the hernia is unlikely to refer pain direct to the face,
but i believe there is a process which the hernia starts leading to the facial pain,
this is really genuinely interesting to me that your report a very similar symptons
have you had immune / heart tests?
does your pain improve when your digestive system is working efficiently ie when you are eating well and passing stools regularly?
any update you can give would be great - i really have had every test imaginable and there is nothing wrong with me other than the hiatial hernia which could be implicated in the pain -
I am pretty sure that taking Zoloft may have contributed to my stomach issues. That and stress. As far as the pain,I don't really have any in my face because of it.. I can get reflux and it bothers my throat, like with swallowing issues... So when it is bad I take prilosec. I've had an ekg before,, but it was just very bad anxiety. I think I have had my immune system checked before and it's fine. I know I have been tested for arthriis. I hope that answers your question. :)
law said:
hi Min
thanks for this reply
have you or your doctors speculated how the hernia maybe related to the bilateral facial pain,
i have read that the area around the hernia is unlikely to refer pain direct to the face,
but i believe there is a process which the hernia starts leading to the facial pain,
this is really genuinely interesting to me that your report a very similar symptons
have you had immune / heart tests?
does your pain improve when your digestive system is working efficiently ie when you are eating well and passing stools regularly?
any update you can give would be great - i really have had every test imaginable and there is nothing wrong with me other than the hiatial hernia which could be implicated in the pain -