2Am and the monster has returned! Praise the Lord for the nearly 13 hours of relief and rest that I experienced today. My body had time to regain strength and I even ate a little and enjoyed time with my family.
I have never had an attack that lasted more that 1-2 minutes most are usually seconds until Wednesday that is. I have had 3-4 each day that last from 30 minutes to 1 hour and 20 minutes. I cannot eat or even sleep. The anticipatory anxiety is overwhelming. I do not want to move or try to talk. I am going back to neurosurgeon that did my Gamma just 3 months ago on Monday. I don't know what my options are but I need some help!
May I suggest that you don’t wait? When you feel as you describe, get to an ER!
I carry my medical info on me at all times, so they no longer try to treat me for a heart attack…when you can’t talk and you are crying, sweating, shaking and your BP is 210/110 -
So touching that you show gratitude for the “relief and rest”. bob
Sharon, gamma knife did nothing for me whatsoever…balloon compression/glycerol injections did and I was pain free of TN for several months after each procedure…your symptoms sound very similar to mine, long bouts of searing pain…and shocks…I am now scheduling myself for an MVD as my neurosurgeon says I have had all the balloon procedures a human being can stand and still have some feelings on the left side of my face…The good thing about balloon/glycerol compression is it is a quick in and out of hospital same day immediate pain relief procedure…you will have permanent numbness of the face etc…but it is worth the pain relief obtained…Vic in San Diego
Thanks Sabrina, I wil post after I see doctor. i am not leaving until I get some options and a plan.
Sabrina Ellis said:
Hi Sharon,Sorry you are having so much pain.I had hoped the gamma knife was going to relieve you of your pain.You are in my prayers and Let us know what the neurosurgeon says Monday. Sabrina
Thanks, Vic! It is comforting to know I am not alone. I am sorry for your suffering but your experiences are a help to me. I plan to talk to neuro about injection and balloon treatment. I hope that is the answer for me. I’ll be in touch.
Vic Maidhof said:
Sharon, gamma knife did nothing for me whatsoever…balloon compression/glycerol injections did and I was pain free of TN for several months after each procedure…your symptoms sound very similar to mine, long bouts of searing pain…and shocks…I am now scheduling myself for an MVD as my neurosurgeon says I have had all the balloon procedures a human being can stand and still have some feelings on the left side of my face…The good thing about balloon/glycerol compression is it is a quick in and out of hospital same day immediate pain relief procedure…you will have permanent numbness of the face etc…but it is worth the pain relief obtained…Vic in San Diego
Thanks Bob! I have thought about going to ER but what do you tell them, how do you explain and what kind of treatment can they offer?
Bob Snodgrass said:
dear Sharon,
You are in my thoughts and prayers.
May I suggest that you don’t wait? When you feel as you describe, get to an ER!
I carry my medical info on me at all times, so they no longer try to treat me for a heart attack…when you can’t talk and you are crying, sweating, shaking and your BP is 210/110 -
So touching that you show gratitude for the “relief and rest”. bob
Sharon,
Write it down; include your medications, any allergies or other health issues…of course, your diagnosis.
Generally, you’ll be treated with something like IV Dilantin, Demerol or maybe a local.
They may keep you overnight, they may do an MRI and so forth. bob
get a thin slice MRI if you have not had one to check for a vascular compression. gamma knife is a major destructive procedure. electing for a second destructive procedure after a failed initial procedure raises the risk for anesthesia dolorosa significantly. if you have a compression, the option of an MVD should be considered; it is the only non destructive procedure among current treatment decisions, and holds the least amount of risk of numbness and increased pain. gamma knife has little long term data about long term safety and/or complications.
i am not a medical doctor. please consult your neurosurgeon about what i have said here.
Sharon, I hope you had a better Sunday. Sometimes, the anticipation of what you know is coming is almost as terrible as the pain itself. I would really look into MVD. I had that on March 16 and so far, so good. Some pain, but not nearly the intense, put me in bed, pain.