OK I'm doing it.... I NEVER ask for help, but this time I'm asking EVERYONE for help. How do you cope mentally when your physical pain is surging through you? How do you not let your mental capacity break?!
I'm an emotional person... I feel things more than other's. I always say, "Some people need a spoonful of love, while I need a wheelbarrow full!" I cannot separate my mental & physical pain. Once it gets to that point where I'm writhing on the floor in agony, I just cannot breathe through it. Or listen to music to calm me down. (Don't get me wrong THESE are WONDERFUL suggestions, they just don't work for me) I break down mentally, anxiety, I get overwhelmed. Then the next thing I know I want to kill the pain. NOT MYSELF, just the pain.
I don't know what to do. NO pain meds have helped. NOTHING will take the pain away! I just end up a ball of nerves, & in complete shock. I only ask you this, because if you broke your leg (which is as extreme my pain gets) you wouldn't be trying to soothe yourself by breathing, or putting yourself mentally on a beach with warm air, seagulls & listening to the tide. NO! You'll be focused on that agony & freaking the crap out!!!
PLEASE if you have ANYTHING that will help me, I'M BEGGING YOU TO POST A COMMENT!!
*hugs*
K8
23 comments:
do you have xanax? or some kind of anxiety med or muscle relaxant or something? I don't know if it will work, but sometimes I feel like if I could just be a *little* out of it, maybe I could cope with the pain better, although the pain level would be the same. And I have nothing near what you are experiencing. I am so sorry!! :(
I have Klonopin... But It takes too damn long to take effect!! I can't take muscle relaxers anymore w/ the combo of meds I'm on. Called the drs office this morning to ask about pain management meds... *fingers crossed*
Hang in there. Posted on TNA/FPA's Facebook page. Thoughts and prayers for you x x x
Does klonopin have a liquid version? I find those tend to kick in faster than tablets. For managing pain/illness-related anxiety, I find 'fessing up can be the best thing for me. Getting it out of my head, that I'm scared/that I can't do it anymore, stops it ricocheting around and building up inside my head.
I really hope your docs can find something to help, at least a little. *hug*
I had some lidocaine (lidoderm) patches that helped terrible TNA facial pain for a couple hours - I cut small pieces out of one & put it on my cheek (very bad at the time). Nothing takes it all away, sorry to say.
Laser med center in Myrtle beach SC. it worked for me. not instantly, but i am virtually pain free.
I think what is important is to keep working towards a solution so that you don't feel hopeless. Keep researching on your own about what you may be able to do to lessen your pain. For example, I have found that reducing carbs and eating 5 small meals stabilizes my blood sugar and reduces my symptoms between doses. I didn't realize it was working so well until I was on vacation and went off my diet. Moderate exercise also seems to help. I also had a sleep study done. Take charge.
Hang in there. I have migraines and it depends on which doc you ask whether I have Trigeminal Nueralgia or atypical facial pain. I don't really care what you call it, it hurts and sucks because they can't find anything to take the pain away. I take a daily anxiety and depression med. I have been on the TN path for a year and a half, migraines for 18 years. All I can offer is a cyber hug and know that others are here too. Call your doc and tell them you need a fast acting sedative to get through?
THANK YOU ALL FOR YOUR SUPPORT!!! What this all boils down to is I NEED to not get my emotions so wrapped up in my pain... "Mind over matter" Etc.
I am trying to make an appt w/ my DR but the earliest they have open is the 27th. I don't know if I can last that long!! So I may go to the E.R for some help...
Kate, I didn't see whether you live alone or with someone. Sometimes when my pain gets to the point you described....that I want to kill it...it helps if my husband will just touch me somewhere far from the pain area...a gentle stroke of my leg or foot. Most times he can't go higher than that because anything nearer makes me think about my face again. I also was given a TENS unit that seems to help a bit. I don't put the pads on my face, but on my neck and back. The zapping of that starts to bring my focus to a different area and for some reason starts to calm me back down from the screaming, uncontrolled zombie I've become. Be extremely careful with the thoughts "I want to kill the pain." Those can quickly spiral into you trying just that. I did the same thing and ended up loading a .38 and pulling the trigger at my face so I could, yep, KILL the pain. I wasn't being suicidal. Just needed to make the pain stop. Thank God I'd been shaking too much and I jammed the weapon. If you can't get into the doctor, get to the ER. Take some of your records with you so they undersatnd the disease you're facing. They'll help you faster. Good luck and God bless!
Oh, Kate - I feel for you and am so very sorry you're in such excrutiating pain. I hope and pray you can get some relief fast, even if you do have to go to the ER. Sending gentle hugs, good karma, healing vibes and everything else your way. Please take care! Btw, my doc sets aside daily appt slots for people who are in the throes of a bad migraine. We can go in right away for IV infusion therapy. Maybe your doc would be willing to set up something similar? Just a thought ...
oh god no!! When I'm in THAT bad of pain, I do't want to be touched, talked to, or even looked at!! I have a Husband who is my #1 "caregiver". He is who I rely on the most. (Obviously, we live together!! LOL)
I can go for IV fusion therapy, but it is like 1hr away.But I don't have Migraines all the time either. They are very sporadic. The majority of my pain comes from the Fibromyalgia flairs & the Chronic Tension Headaches. Combined it leaves me numb & helpless...
Yet again, I thank you all for your suggestions. I am very glad you all took time out of your day to help someone you don't even know. THAT is AMAZING!!!! <3
Dear Kate, I have TN and last year when I had a lot of pain and almost called the hospital for help I decided to call my doc if she could help me giving some vitamin B12 injection which I have read about in a book about TN. On the fifth day I was painless and my doc was so surprised that it helped me I surprised that it helped so quick. The week after I got three injections and then the following weeks once a week. I was painless for two and a halving month then it came back a bit but then I just got it again 5, 3 and 1. Today I have no pain and reducing my medicine. If it hasn't been for my doc I do not know where I have been today. The vitamin I get is 1 mg. I wish you all the best.
Kate,
I feel your pain. I also get migraines and have received botox for them and it has helped so much. They have even been injecting some near my ear and it has helped with the tn pain I get in my ear. Although sometimes nothing helps the face pain
You might want to consider a rescue dose of a "major tranquilizer" like Seroquel for times like these. What that will do is very shortly make you sleep deeply up to 9-10 hours with the correct dose. When you wake up, the flare up may well be done.
A common treatment in countries where opioids are not prescribed (most of the world outside the US) is similar: a propofol transfusion for 8-12 hours in an outpatient pain clinic.
A major tranquilizer (as opposed to a sedative) can achieve the same result, without the need for an IV.
Ice/heat provides surprising relief-when I have nothing else.
Magnesium supplement is inexpensive-actually reduces muscle tension. Or magnesium soak..Epson salts.
Pain specialist treatment plan included: Supplements (for migraine), Nuerofeedback, Acupuncture, Massage, Pain medication, Nerve Blocks & Surgery. I basically tried everything-stuck with what worked best, and added things not on his list.
Low hormones & vitamin levels can increase pain symptoms-so check those.
Dental problems caused me face pain/migraines & required time to solve-check those
Gluten, processed sugar, junk foods, food allergies can increase pain, so pay attention to diet.
Anti-depressants helped my mood and pain during worst times.
Noticing symptoms during day & treating them at onset helps me stay on top of things.
Meditation/relaxation is helpful-It doesnt make pain 'go away', but aids your body in healing/rest& calms sympathetic nerve system-already overstressed during times of anxiety.
*1 spot on the top of my head would help soothe me when my partner gently touched me there.so he did!
I hope you feel better soon! much love.
My husband has a wonderful chronic pain doctor and for situations like this he has found that ketamine spray 2 sprays up each nostril knocks the pain and helps him sleep. We have avoided the ER on several occasions thanks to this spray. This is in addition to his regular medications such as trileptal, cymbalta, and nuycenta.
Hi Kate. Thanks for posting. Have you tried Sumavel Dose Pro, or the oxygen tank for the cluster headaches? The Sumavel is a needle free injection shot that gets the meds into your system quicker than any pills. Plus if you're having nausea as well, this med bypasses the stomach. With the oxygen tank, the oxygen helps to alleviate the pressure on your nerve endings in the head that's causing the headaches. Have you seen a headache specialist? God bless the PCPs, but most of them don't have extensive knowledge of the demon and can't really tell the difference between a regular old migraine and a cluster. Also, I know this may seem whacky, but have you tried a chiropractor? Not just any chiropractor, but one that specializes in subluxation of the spine (Look up Maximized Living)? Not many people buy into this, and they are sometimes called outright quacks, but I'm on a regular adjustment treatment with them, and I've already seen results. After only a couple weeks of visits, I'm now pain free. Plus the usual triggers that used to cause headaches for me, no longer affect me. That's my personal testimony. As far as the mental pain goes, I've never been able to separate my emotions from the pain. I'm not sure that's even possible for me. I tried to not focus on the pain, but it doesn't work. It seems to just get worse. And if I try to introduce soothing things like a touch, or music, that also makes it worse.
Kate,
I'm so sorry for what you are going through. I have TN (typical and A-typical on both sides of my face), migraines and suffer from chonic sinusitis and sinus headaches and recently have also had an issue dealing with vertigo. The heat and cold won't work because that is a trigger for the TN. I've recently started taking medicine for anxiety and for the depression. I'm not a "depressed" person when I'm not having sympotms (or when the symptoms are mild enough that I can tolerate them). However, when the symptoms become severe I also get to the point where I can't stand it anymore. I also don't have any urge to kill myselft however I do want to kill the pain!!! Whenever I can feel an attack coming I seem to go into almost an instant panic attack. I take carbazepin and gabepetin for my TN. However the side effects from the gabetin sometimes also seem unbearable. I have also began receiving nerve blocker injections to my face (at first it was helpful but seems to work less each time). For my sinus pain a take a combination of ibuprofin (to relieve the inflamation) and excederin, which seems helpful but does not eliminate the symptoms. Additionally I take singulair and omnaris (nasal spray). I've also taken steriods however I try to stay away to it due to the side effects.
For me one of my major issues is just feeling like nobody understands what I'm going through. Yes, I have times when I feel fine. But then there are times when I am in such extreme pain or my face feels numb and people think (oh she just has a "headache"). I've had plenty of plain "headaches" in my life and believe me that's NOTHING compaired to the amount of pain I go through.
I hope you find something that helps! Keep looking and don't give up! (((HUGS))) to you and wishing you many pain free days!!!! :)
Kate, I feel your pain. I wish I could take it from you. I know how hard and difficult it is. If you've maxed out on your pain meds is there someone close you can call to come and just hug you, hold you close and help you through the hardest part so that you are not alone. Being alone during the hardest part is what makes it so unbearable. If you had the physical touch of another human that loves and cares for you, or at least to put a cold cloth on your head and to get you something cold to drink and bring your meds to you and see to your needs. I am keeping you in my prayers. Sending you hugs. Hang in there.
I have had TN for 13 years. I found that the only way I could deal with it is to take action. When I was initially, needing a diagnosis i went to dentist and doctors who passed me back and forth. In order to get a referral to a neurologist I went to the ER and stayed there until they would give me a a referral and medication. I also try to remember my goal, which is to be as pain free as possible with out taking meds. Every time the pain would resurface I would feel like killing myself. Instead I would trust my neurologist and take the medication to try to get get through my day. On the days when I had less pain I would remember the goal and press for a resolution to the issue. Even after all these years I still believe that I can eventually meet my goal. I also believe all of us afflicted with this disease have astounding courage. I was recently referred to UCLA med center and I am hoping for a surgical solution. It has taken 6 months to get an appointment and it may take the same amount of time me to see a neurosurgeon.
Take Action, have courage, and trust that a path will present itself to you.
Have added you to my blog list, love your blog - please delete this if I posted another comment today (headache head)...
Somethings that have helped that are NOT pain meds:
Doxepin (sorta like Klonopin) makes you sleepy
Vistaryl/Phenergan combination. I have this compounded per prescription in a skin cream so I don't have to digest it. Costs about $75.00 each time I have it compounded. You have to take it to a special compounding pharmacy...
Biofeedback: I took 3 months of intensive biofeedback therapy. It helps with the panic, not so much with the pain.
Breathe slooooowly: I have collapsed my lungs a few times by not slowing my breathing.
Injectible phenergan (promethazine) this takes some nerve and some training to inject as it is a muscle injection but it makes you sleepy and reduces pain at the same time. You can get this injected at your DR's office if needed. 30 days worth costs about $30 including needles.
My headache does not like opiates, so I use Fentanyl patches for everyday pain relief. Opiates will set The Headache off.
I use an occipital stimulator. IT REALLY HELPS!
I still lose it once in a while. I understand what it is like to melt down from pain you cannot escape from. Hang in there. Be agressive finding a specialist. One doesn't work start ranging out. You never know!!! You are way too young to not find an answer.
Everyone is different but for me....it was my son that kept me going and my faith.
Dec 09, I wanted to "cash out". I highly weighed my son living with a dad sick and suffering 18 hrs a day (at the time) or living without a dad. I prayed heavily, looked at my son and still to this very day night for him. Now I am married and having another one in my cheering section. What I have gone through(4 brain surgeries),married,traveled and expereince I would have never thought in a million years my life would be complete as it is now.
Eery attack I still get i fight for my wife and son. I thank god for this gift as it now gives me a chance to help others surviving.
Think outside the box. If your not religious, think hope. If your family is it. Then fight for them including yourself. Never give up, never give in
Blessings
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