Hi again everyone. Iv been on reduced meds now for a month waiting for a nerve block. Slowly the full extent of my pain is revealing itself after being on preablin and duloxetine for 3 yrs. My pain is on both sides plus a point at the back of my skull radiating over my head to my eye. The distress I’m feeling is huge. I’m preoccupied with thoughts of what will my future hold with a this all over pain. Is anyone else dealing with a whole head of jangling nerves? The doctor says she can inject up to 3 times. I didn’t even know I had this problem in my occipital nerve. Can’t believe it guys. What a stupid condition we have. X
Are you candidate for MVD? I’m sorry for the hell your in! Any topical meds for you?
Hi Helen
Sorry you’re in so much distress. I get the “full head of pain” too when I’m overwhelmed or overstimulated. I call it “the whole orchestra going”. And then it does seems like a stupid condition-:(. Bewildering. Medications don’t touch it, only 8 or 9, 10 hours sleep helps.
Let us know how the nerve block goes. If that doesn’t work are you candidate for MVD? It’s something you should know. Part of reason I think this feels like a stupid condition is not knowing how to plan to live a daily life. You can only do that when you know what your options are.
I’m going for MVD in September. It will be almost four years since first pain event. If that doesn’t work then I will have to hope for the next thing, whatever that may be.
Keep heart
Bellalarke
Hi ladies I have no idea if I am a candidate for surgery. How will I know? I havent seen a neuro yet Im still waiting. Im under the pain clinic. I plan to see the doctor on Monday morning to get a sick note for work but I may go tomorrow morning as the cocodamol I am taking like sweets isnt doing anything. I've been in touch with HR this morning and they were very sympathetic and encouraged me to get myself as fit for work as possible. Have a good day xx
Oh dear, I think you need to see a neuro as soon as possible. Coming down from the lyrica and cymbalta in one month after three years is kind of treacherous in my view, and I am no doctor but I have had a lot of meds messed with. You may be experiencing rebound pain which can be staggering. Do you have to be off them completely to get the block?
Where is the pain doc going to put the nerve block?
Good to hear HR is sympathetic. I think you need to see someone ASAP. Go to ER if you have to and take the info found up in the tabs with you.
Who diagnosed you in the first place?
Keep heart
Bellalarke
I’m just coming off pregablin. I’ve dropped 50mg. I was considering the a&e department a few nights ago but my children were in bed and I’m a single parent. Its been a month on lower pregablin and I’m finding it worse as the days and weeks go by. Thanks for the support Bella xx
Oh gosh, Helen. Is there anyone you an put on alert to come and stay with your kids in case you need to make one of those emergency trips? I really think you need to make some arrangements. I’m sure it must be so much worse at night, that’s when we all get so bad. The pain builds through the day and now you’ve got it “globally” in your head. This is not good.
Where in your face/ head are you going to get the nerve block? What experience with TN does your pain doctor have. I think you need a second opinion as soon as possible. Some kind of intervention to stop the pain cycle right now.
The nerve is going into the right hand trigeminal nerve. I didn’t even know I had a separate pain in the back of my head. The doctor is a anesthetist with a specialism in neuralgia. X
If you haven’t see the following video, please take the time to watch it. It’s quite long but extremely informative and you might get some insight into the pain in the back of your head that has appeared.
http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken
I went to an anesthetist in the beginning too. You also really need a knowledgable neurologist who will send you to a neurosurgeon as well. And you need to get a handle on the pain NOW.
When my pain becomes unbearable my neurologist told me to take and extra gabapentin and go to bed. I realize you have children. Please get some stand- by help.
Do you wake up with the pain or does it build through the day?
Xx Bellalarke
Bella it builds through the day, by mid afternoon speaking is a problem. I promise I will seek help in the morning. Thanks for yr help xx
Have tried to watch the vid but it won’t load. Will maybe try to get it through utube x
Bellalarke said:
If you haven’t see the following video, please take the time to watch it. It’s quite long but extremely informative and you might get some insight into the pain in the back of your head that has appeared.
http://www.livingwithtn.org/video/ask-the-doctor-series-with-ken
I went to an anesthetist in the beginning too. You also really need a knowledgable neurologist who will send you to a neurosurgeon as well. And you need to get a handle on the pain NOW.
When my pain becomes unbearable my neurologist told me to take and extra gabapentin and go to bed. I realize you have children. Please get some stand- by help.
Do you wake up with the pain or does it build through the day?
Xx Bellalarke
Yes, I understand. I have similar pain escalation and speaking issues as well as that back of the head pain. Happy to be of any kind of help. Stay as quiet as you can until you get help tomorrow. You’ll be okay. Xx