Well, it’s been a rough week. Well rough month in truth, but this last week I feel as if I’m splitting my life between my home and the emergency room at the local hospital. Was joking earlier that they should name one of their emergency room beds in my honour.
The attacks are one after the other. They’re involving all 3 branches (V1, V2 & V3), with referred pain through my neck, breastbone and chest that has caused me to get severe Allodynia (hypersensitive skin - well it feels like I’ve been flayed). The local hospital have been giving me Toradol injections that help for maybe 2 or 3 hours these days - so now I’ve packed an overnight bag and I’m driving into the Gold Coast city hospital. I am going to see if maybe their on staff neurologist has some insights to help me.
The pain is making me desperate. Each attack is easily hitting the 10 out of 10 mark and if possible going past it. Each attack will last hours or days & I only get sleep at the local hospital & after an injection of toradol (anti-inflammatory) and when I’m home I can’t sleep or if I do - it’s only for a few hours and only to wake in further excruciating TN & ON pain with the Allodynia to boot.
Wish me luck in getting some answers. I still have 6 days before I am booked in for the pulsed radiofrequency treatment - and I can only hope and pray that it’s effective at least in some small amount right away - otherwise I don’t know what I am going to do.
So the pain starts at the top of my skull, the part you can balance a book on - and travels down the face, forehead, eye, cheekbone, cheek, nose, upper & lower jaw, temple, ear, behind the ear, neck glands, neck, collarbone, breastbone and chest. Plus down the back of my head, Occipital region, neck and around the sides of my head to my ears. Right now, it’s dropped to about a 5 out of 10 and I’m packed and ready to go - but i’m fatigued and have to drive myself for 45 minutes to the hospital. I will TRY once more to nap a little, but it’s hard to nap / sleep when most of your head is in agonising pain and even laying down causes more pain… SIGH…
Ok, well I will update here as soon as I’m able to - I wish with all my heart that everyone else is faring better than I. Chat soon!
Best Wishes ~ Kerry xx
Thanks Ro. It is not gamma knife - it is all done with needles and electrolysis of the area immediately next to the ganglion, so it will cause very minor burning of the nerve with the intent of “resetting” it. So, it should be a same day procedure. In the event it is required for me to stay overnight, they’ll have to move me over the road to the hospital as where the procedure will get done is in a Day Surgery unit that is part of the hospitals facilities.
I eventually went into the city hospital today - i so hate having to reexplain myself every time to new doctors. They were not able to reach the pain doc as he is also an anesthesiologist and was in surgery today - so the doc I saw gave me another Toradol and also injected me with morphine which really just made me feel sea sick…
By the time I got back to my Mum’s (where I left my car) I decided to have a nap - 30 minutes later and I was awake again with agonising pain to the back of my head and deep in my ears … It’s 10:30 pm now, 8 hours since my last Toradol shot and I’ve no hope of sleep from the pain. I’ve had a hot shower, rubbed lidocaine cream into my face and neck and have no relief … Again … So, it may well be that I need another trip into the ER at my local hospital - another injection - just so I can get some sleep… I hate this…
Thank you for your well wishes! I hope to chat more before the procedure Monday - at the moment, I can barely eat - eating food is like being cut with 1000 electrified razor blades in my mouth… Joyful huh? Ok best wishes to all!!
Chat soon!
Kerry xx
Kerry,
I’m so sorry. I wished I could do something. 6 more days before your treatment is a long time when you are suffering. Will the treatment give you instant relief or will it be gradual?
Praying for you.
Liz K.
Kerry so sorry to hear your having a bad go these days.I do hope something or someone can help.Your most deffinetly in my prayers darlin.
HUGS 
Brian
Hi Ko,
I’m so sorry to hear how badly you are suffering at the moment. I will be thinking of you next week and hoping that you get some long needed relief from the procedure.
Love and hugs,
Jo X x
Kerry,
I am so sorry you are in such pain. Hoping and praying that your treatment goes well and you will be pain free soon.
God Bless
Debbie
Thanks everyone for your thoughts and well wishes - today is my best day in ages, very minor pain and I have been sleeping! Got 10 hours last night curled up on my recliner and another 2 hours in my bed earlier. I am feeling better from sleeping, yet my eyes are so fatigued telling me to get more sleep, lol.
Ro, as for TN meds - ALL my doctors here agree that I’m already taking or have taken the only drugs they recommend and they are Tegretol (Have had), Lyrica (Have had) or Gabapentin. I had to stop Lyrica because I couldn’t afford it. So the Dr switched me onto Gabapentin. So those are the ONLY drugs to treat TN in Australia it seems. So I’m considering cutting my gabapentin usage down slowly. It’s not helping, and I cannot see how taking more at this point would help me. Maybe later, for now i’m weaning myself onto a tn med holiday!
My gp has prescribed a med for me that treats both insomnia and anxiety - here, it’s called Serepax. I think it’s helping, I’ve been taking it for a couple of weeks. But I’ve also been in agonising pain for a few weeks, so it’s benefits are yet to be determined.
Stress for me is created by not sleeping. Not sleeping is created by pain. Pain relief, unavailable. Better meds for TN, unavailable… Neurologist… Not available. Not helping. First Neurologist continues wanting to see me yet when I do - it’s to let me know how much he wants to help me but is NOT able to. I think he enjoys my pain. New Neurologist - tells me I’ve already exhausted the meds he would’ve prescribed me with also, so there’s nowhere to go with the meds route.
The irony of all of this is the most help has come from my pain clinic specialist. He’s given the most help in the past - and hopefully this monday, will continue to give me that assistance!
Thanks again everyone!
Kerry xx
Kerry i hope you will be felling better soon ,but with tn we dont know its madning sorry if i make mistake i’m french.iI feel what you feel,i have the same symtome as you but not in the chest,it you’s to be in my face but now it its in my neck and my arm,can not move my arm went it hurt i’m calling my specialist today,its getting wost.Thinking about you louise