Today was another difficult day. Barometric pressure changes are just terrible on my head. Finally got appt with my neurosurgeon on May 13th. Cannot come fast enough. Always feel like my head has such intense pain at the crown and the radiates to my ear , upper and lower jaw. MRI was positive for compression like the left side. Just want the surgery ASAP to try and get on with life. Life for me and my family. Tired just very tired battling this pain. Have heating pad ready cor the nite, himidifer on high, took all my meds and gonna go nite nite! Hope everyone has a good nite and a better day tomorrow
My Best
Joanne
Hi tatto
Hope today brings better things.I'm curious about the Barometric pressure?I only get bad serious pain at night and was thinking this was the cause.Ofcourse my trigger is laying down after 8 pm at night I can not lay down.I've been going to hospital and getting a shot of Torodol every other night the other night I tough it out and I'm up until sun rise and take my first dose of Teg then usualy I can sleep.I also have no problem crawling into bed early afternoon.....but night OMG is the worst.Anyone else have thoughts on this?
Wishing you the very best tatto :)
Hi Brian,
Its odd but on my right side it happens at nite also. Last night was a perticularly bad nite, just could not sleep. Sleep is my only relief. My husband asked me that question just the other day. Why do I sleep so much? I sleep to be out lf pain. For some reason the monster was not having it. Theres no reason , its the nature of the beast. Very washed out this am. The sun is up its a beautiful day but today will be rough did not sleep or rest at all. This too shall pass, so they say. Sorry for you Brian but I truely undstand your plight. Maybe different meds might help you, what are you taking besides pain med? Have you had MVD yet and when? There are so many meds and combos of meds that can help. Keep in touch keep you in my prayers
My Best
Joannexo
Hi Brian,
My relatives live in the Onatario area, some in Oakville, some in Mississagua, some in Toronto. Just wanted to share that
Joanne
Hi Joanne,
You might ask your neurosurgeon to check your cerebrospinal fluid pressure to see if it is possibly higher than normal. I have a shunt which, for the most part, regulates this, but boy do I ever respond negatively to barometric pressure! Also, if you have had an MVD, you may possibly experience some barometric pain in that area.
Lily
Hi Joanne
I get those desperate nights too when a big weather front is coming in. Also at the crown of head that radiates down to ear and throat. Sometimes feel like a monstrous bird has got it’s talons in my head and is trying to fly away with me…
I take zoplicone at night otherwise I can’t lay my head down and would never sleep.
Also recently started taking Ralivia (slow release tramadol) twice a day and it takes the edge off.
Praying you get lots of rest to help in these days while you’re waiting to see NS.
Bellalarke
Hi Lily,
Never thought of CSF increase as a possibility. I do have a compression on that right side its on,y on the right , so I am thinking it would be both sides if the pressure was up. I was scheduled for surgery in February this year nad to cancel because of bone infection from abscessed tooth. This has resolvd thank goodness. I was up every 2 hrs. last nite and today is just completely off. Taking xtra dose of tegretol and pain med. just want to have the surgery to get to feel better. i am very hopeful even though the left side did not work out so well. I would do it again, no questions ,no hesitation. Thanks for all your input and support definetly need it right now. You guys are all great!
My Best
Joannexo
Thanks Bellarke, lying on my left side is just impossible since my MVD 18 momths ago. Dont know whats wrong but just does not seem the norm after this much time. So I sleep on my right side, and thats not so great. I use heating pad every nite has been continuous since July 2012. Thats when the right sided TN symptoms began. Italked with my hubby last nite and told him I am proceeding ahead. I want a life for me but also my family. They are scared but he respects my decision for a chance at a new life. Just so bery tired. Been dealing with nerve lain since 36 years old. That was my first attack never properly diagnosed. It was the hear from hell. At 39 had my first lower back surgery and 7 more after that. Have 5" titanium rods and 2" inch screws, 3 on each side. In July 2011 carpal tunnel and Oct 2011 same side transaxillary rib resection for brachiL plexus injury. They removed a rib to get at thise nerves. Still healing. Surgeon told me 1" healing per month. It would take 4 years to heal the nerves. Its from neck to finger tips. The following year had MVD left side. Plan right side in June sometime. I always tell my neurosurgeons that it feels like my nerves in my body have short circuited. Just a sick mervous system, no reason just is. My grandmother had TN there was no surgery back the. I understand why she cried so much. My youngest son I believe has TN, I told him I domt want him to wait too lomg to have the surgery. The nerves take a toll on being compressed so long. Who knows if they ecer bounce back. It breaks my heart to see him suffer. He listens to me and respects my opinions. So there it is in a nutshell. Thank you for caring and always listeneing it means so much to me.
My Best
Joannexo
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Oh Joanne you have really been through the wringer for so many years and all those surgeries, that’s a lot of pain and disappointment. Your appointment with NS is in about two weeks, right? Thirteen “sleeps” as my girls used to say. I use heat too, a hot water bottle under my pillow and throw an old very soft black cashmere sweater a friend gave me, over my head. I am with you on proceeding. Yes, we want pain free lives for ourselves, but also for our family and friends. I understand. And I think you are right to encourage you son to have so,etching done as soon as possible. Trigeminal neuralgia begets more TN.
My central nervous system has been a problem since 1995 when I was diagnosed with fibromyalgia and suffered severe sciatica. The sciatica eventually just petered out (after about four or five years) and I have always been able to manage the fibromyalgia, more or less, it always let me know when I was pushing too hard.
There is a history of these kinds of illnesses in my family too, grandmother, great grandmother, Never properly diagnosed of course. One of my half sisters has FMS and also my oldest daughter. There is a lot of research into these genetic components that is promising. Also glial cell and the past it play in chronic pain. I am not hopeless. New modalities are on the horizon and I am deeply fascinated so it takes my mind off my own pain…until I crash from reading too much and thinking too hard…which doesn’t take much the days!
So yes Joanne, my best wishes and prayers go out to you.
Bellalarke
Thanks Bellarke, although I have to say I have incredible neurosurgeons onboard @MGH for my spine these 17 years. I feel as though that component in regards to my head neurosurgeon does not have the same quality or should I say mannerism as the other two do. We have such a wonderful rapport. Time with me is never an issue. That is the issue with TN surgeon. I would think that when dealing with ones brain there would be same time given, not the case. He is a brilliant man by all medical standards, and he did find the compression on MRI. When he first reviewed films with me and showed me, it validated my pain. Finally someone who believed me. So this time I gave up him being a “goodman”. This was big for me because that was always in my decision making good surgeon good man. I am goimg to give him a second chance, after all we all deserve that in life. I will meet with him in early May. I will let you know how this goes, going in with positive attitude with hopes of getting this pain under control. Thanks for all your support it means alot to me. Will talk soon
My Best to you
Joanne xo
Hi Joanne
Back in 2009 when diagnosed I was taking 2000 mg of Tegretol per day and it was relieving my pain.I am currently at 1800 mg per day and have short periods of relief,so i think I'm close with my meds for relief.Yes I have my blood checked regularly while taking Tegretol.I had MVD Jan 29 2010 so I had a few years of living a normal life.I wish you nothing but success in your journey Joanne and appreciate all and any input.thank you God Bless :)
I live in Guelph not far from your relitives