Headache and Migraine Group: Let’s connect

Hi Lisa
Thanks for your response and the other links, I will take a look. I just read an article today about a research paper showing that taking it long term is linked with dementia. I can link it here once I figure out how to do it!
Thanks again.
Babmuse (barb)

Keep in touch Jody

Migraines truly are horrific, and I know how frustrating trying to find a solution can be. I pray you are able to find a solution that can give you some relief, as I also have experienced unrelenting pain for months on end, and know its toll effects every aspect of your life.

Hi, @babmuse, and welcome to Mayo Clinic Connect. I am glad to hear you have a diagnosis, too. Sorry to hear about this 3-month cycle you are having to experience, however.

I took gabapentin personally, but it was for postherpetic neuralgia after having shingles, to deal with lingering pain/tingling after the condition had run its course. I recognize that some individuals report side effects from gabapentin, but I experienced none. It helped me with my pain. My doctor had me trial off of it after about 7 weeks of treatment, and fortunately, my pain and tingling were then gone.

There are numerous discussions on Mayo Clinic Connect in different support groups about gabapentin. Here are a couple that might have some useful information for you, including one from the Neuropathy support group and one from the Chronic Pain support group:

- Has Gabapentin helped anyone out there? https://connect.mayoclinic.org/discussion/has-gabapentin-helped-anyone-out-there/

- Is anyone on Gabapentin? https://connect.mayoclinic.org/discussion/is-anyone-on-gabapentin/

My most successful treatment for my
Migraines is acupuncture andchirocare
My chiro and acupuncture one in the same
Get same day service
Been going for 28 yrs

Well. like most of you I am at my wits end.
Never had migraines in my life until I sustained a concussion in 2019, hitting my head in a fall.
The migraines didn't happen suddenly, took about 10 months when suddenly the right side of my head felt I had "just fallen" it was so sore to the touch. Then a daily migraine for 9 months. Saw neurologists at the best medical centers in the country. Ultimately I ended up sticking with a neurologist at my local medical center. Since I have ischemic heart disease I can not take the triptans for pain control/prevention. I tried every CGRP there is, nothing worked. I have had all kinds of migraines...my eyes and especially disturbing periodic severe spasms in my brain. These only last seconds or else I would have to call 911. I have a severe panic disorder and found the benzos give me rebounds...as well as Tylenol - which seems to be my go to drug. I can not even take any of the NSAID (Aleve, Motrin, etc.) b/c of heart disease. Right take candesartan for prevention and B/P control with minimal results. I have about 7 different kinds of "ice caps" in my freezer.
My MD tells me I have "refractory" migraines...meaning nothing seems to help me.
I have never tried Botox and won't, simply b/c I fear it will be my "luck" to end up with serious side effects.
I fell when I was 64, now 70. The quality of my life changed completely with the onset of migraines.
Most folks think migraines are simply a bad headache. It is a true neurologist disorder with consequences on your overall state of physical, mental and social health...my brain has areas of "hyperintensities" due to repeated horrific migraines. These areas have limited (or none) blood flow in my brain.
That's my migraine story. And who knows what the future will bring.
My deepest understanding and empathy to all who suffer with migraines. Truly debilitating in every way.

Thanks Jody I will hang in there and take it one day at a time. I hope it finally works for you.
Bernie

I am a 76 year old woman. About 6 years ago (AFTER I retired as a writer), I started experiencing an irritated scalp and tight neck, which gradually got worse. Docs, including a neurologist, wanted me to go on gabapentin immediately, but I wanted to give other solutions a try. I did physical therapy with several different practitioners, but no luck and the pain was getting more constant and waking me up at night. I finally went to a pain specialist who immediately said it was occipital neuralgia. Happy to have a diagnosis, but I seem to be trapped in a 3 month cycle with steroid injections in my neck. I have relief for about 6 weeks, but I can’t have more steroids until 3 months, so about six weeks of pain, up to a 10 at intervals. Treated with Tylenol and ibuprofen, every 3 to 5 hours. I recently stopped the ibuprofen, but my body is on a rebound schedule so I have to take the Tylenol every 5 hours now. I am very fatigued and this is affecting my social and emotional life and energy level. I may try the gabapentin next. Has anyone had any good or bad experiences with a low dose of gaba? Any other suggestions? Sorry for this long post.

Yes it took a bit over a year, I think my 5th injection is when it started to work.
I only had relief though but I suffer 24/7 and I was a constant 10 pain and it brought me to about a 7 but I would have occasional 10’s.
This lasted for about a year and then zero relief.
She started injecting into my neck and that gave me a 7 for 2 months and 10 the third month. My last injection she didn’t put as much into my neck and I have been pretty much a 10 for the past 2 weeks.
I’m going to ask her to put it all in my neck next time.
But keep in mind that everyone is different, I just happen to be one that isn’t finding better results. I suggested that my dental hygienist try Botox and she found instant relief and is very thankful for it!
Hang in there and fight the good fight
Jody

Thanks Jody. Did you go thru this & finally get relief from Botox ?