Hi Nicole,

Nice to have you comment and post here. I'm rather "new" in the grand scheme of things (first got sick 1 year ago).

Sorry to hear about your revisions and the terrible daily headaches since then. How long have you been on amitriptyline and gabapentin (neurontin) with any benefits to your "migraines" yet? hopefully you get some relief. I am still awaiting trying nerve blocks. Have you had any luck with yours?

Mostly, I am sorry to hear about the losses in your life in the past year with work and your husband. While these no doubt will make you strong, at times I am sure seem so difficult to journey through too. I will be praying that strong people surround you to help carry you through this tough journey.

All the best! Taleema

Hi Nicole,

I'm so sorry you have been through so much and that this last year has been really difficult, but I pray that the rest of this year and the upcoming year will bring much joy and pain free days!

You are in my prayers, hugs, Jazzy

Thank you ladies this group was so helpful to me when I first got diagnosed, and had my shunt placed I hope you are finding support as well.
Taleema- Amitriptyline has been great for sleep, but not much help for head pain. I haven't had much relief from gabapentin either unfortunately. I'm actually seeing my headache specialist Monday and he is thinking of changing my meds completely which should be interesting. The occipital nerve blocks have been pretty good. My first block was the best, I had incredible relief, the second nothing, the third was pretty good, and I just had my fourth which seems ok. It's tough because it's not a science whether they actually hit the nerve or not, or whether that is what is causing your headaches. My headaches since my revision are all behind my right eye like a stabbing pain.

I hope you ladies are having some pain free days!
Nicole

Hi Nicole: Am very sad to learn how tough the past year has been for you. Great that you're feeling stronger, though, and that you get some pain-free days now!

I, too, have no paps & have been shunted & revised many times. The past couple of years, neuros spent much time on suspected migraine & other HA syndromes. One of my SX has been deep stabbing, aching and pressure behind & around my eyes. I tried Occipital nerve blocks + trigger points with little/no success for any SX. But, I also tried Sphenopalatine ganglion nerve blocks (transnasal approach) which have helped some with the eye pain. Sorry I don't have a linkout right now, but my understanding is that SPGs usually are used for cluster HAs and atypical facial neuralgias; this ganglion group also "crosses" the trigeminal at some point.

Maybe worth consideration? Hope you're having a no-pain day. Best, PC.

PC - I brought up the block you told me about to my headache specialist today, and he thought it was a great idea....so thank you!!! It just goes to show you, not that we didn't already know this, how much our doctors don't know. I really hope this block helps, because my occipital nerve block didn't do much this time around. Thanks again!
Nicole

I'm so sorry for all you're going through.
Marjorie

Yay Nicole for sphenos! Let us know how you do. I just had another round this am...hope they kick in over next couple of days. Can't wait to hear how you do -- fingers crossed!