Had a lot of pain lately - well nothing new about that. The Occipital neuralgia (ON) is playing up nearly as much as the TN. This has increased neuralgic pain in general, so you know what I did? I increased my meds, and also began taking Tegretol again - even though the Teg stopped working for me over a year ago. But in my addled mind - I started again “hoping” that after a year off the Teg it would help…
Then I started looking up articles on ON again - and guess what I learnt? That they don’t treat it with medication. The articles all say, heat, massage and nerve blocks. Oh. Duh! So now what? I’m in the process of changing Neurologists - my previous one is an idjit but don’t see the new one for almost 3 weeks. Pain specialist who loves nerves blocks is on holidays - tried to call his office, but they must’ve been busy as they haven’t called back.
What to do, what to do …
Last night, I was exhasted at midnight. First time in a long time I could go to sleep at what I consider a reasonable hour. I was actually that tired all of a sudden, my eyes crossed and my vision went blurry. So I answered the call to sleep ~ and I went to bed. I lay down in bed and ta da! PAIN! Blast the ON. It sets off TN but the TN doesn’t last like the ON seems to. Every time I want to sleep, I set off the ON now - what do I do about that?
Tonight, I am also tired - it is again now after midnight.
What I think I am looking for - is if someone has suggestions on a way I can get “sleep” without my head touching anything ??? Ok, odd question - I know. But anyone ??? Ideas ??? I don’t care how the idea sounds. If you’re worried about sounding silly - please contact me privately via my inbox from my profile page. http://www.livingwithtn.org/profile/Kerry
Thanks very much to everyone who even tries to think of an answer Thank you from deep in my heart!
Cheers to all of you with best wishes for a pain free day!
Kerry,
So sorry about all the pain. I don’t know how you could sleep without your head touching something. I will be praying for you. Remember God hears our prayers. It has helped me alot with my pain. Keep calling the doctors until they answer you. Hope this helps a little. God Bless
Kerry,
I’m sorry. I have wondered if I don’t have the occipital neuralgia although I don’t feel the pain very often. But I get a deep pain behind my eye on below my eyebrow. Sometimes I have a headache and sometimes I don’t. But I’ve had this pain for years long before I had TN. And after I had MVD it seems like I get it a little more often.
I hope you feel better soon.
Liz
Thank you girls for your responses! I guess I keep on plodding on as is. Ro, it’s ok - it’s the doctors idea for me to re-add tegretol to my gabapentin, I’m just giving it a go.
I do have new neurologist appointment next month (Feb 17) with the new Neuro, so will obviously discuss things with him and what he wants me to do. That’s only a couple of weeks away.
It will obviously remain difficult for me to get sleep at any time, so it seems now that I will only get sleep in series of naps where I can get to sleep prior to pain starting. So not gonna be easy at all. Getting a lot of pain currently from both ON and TN.
Liz, check with your Neuro next time you go in - but yes, my ON pain stems from what feels like the back centre of my neck above my shoulders a couple of inches and winds it way around the side and top of my head, giving me the worlds worst ear pain and as much as reaching my cheekbone. It doesn’t always go right around for all people, but it does for some of us. I also don’t have it as often as the TN, but when I do get it - it seems to make my TN worse If you had it before, with your TN - you may find that now you just notice it more often as some of the pain locations it causes are similar to that of TN. TN can cause the ear, temple, top of scalp and cheekpain the same as ON does… So unless you notice the neck and back of skull as well - the TN can hide that by being a more intense pain, you may find it was there all along like this.
I need to ask my Pain doc about the nerve blocks available for this also - but the clinic will only book one appointment at a time with this doc for me, 2 appointments are too hard for them lol, so the next time I see him, I’ll be getting the procedure for my TN on March 8. I’ll try and ask him then. If I can.
Ro, I got some sleep earlier on the recliner, being careful on pillow placement - slept for 4 hours which was good. But now, it’s after 1 am. Fingers crossed, i want to get more sleep, hopefully in my bed if possible. Problem i have right now - i have pain on both sides of my head. The ON is now on both sides at once, plus some TN on my right side… Oh dear… Oh well…
but don’t see the new one for almost 3 weeks. Pain specialist who loves nerves blocks is on holidays - tried to call his office, but they must’ve been busy as they haven’t called back.
If you had it before, with your TN - you may find that now you just notice it more often as some of the pain locations it causes are similar to that of TN. TN can cause the ear, temple, top of scalp and cheekpain the same as ON does… So unless you notice the neck and back of skull as well - the TN can hide that by being a more intense pain, you may find it was there all along like this.