If only

Shave my head today in tears. Lidocaine patches all over my head. Surgery on the back of my neck and head to hold my head stable. RSD flare ups, Occipital Neuralgia, Trigeminal Neuralgia and sleeves and gloves on my arms and hands. Still suffering underneith it all. Severe left ear ache, can't smile or move my jaw without excruciating pain. Severe double vision. Neurotic not effective higher dose makes things worse. I don't know what else to say. Meditation,,,, ohe my god on what. Sorry to sound so drag. Going to miss my daughter's graduation in VA from college. I'm incapacitated and ugly as hell. I will not leave my house looking like this. Just got choked from my own saliva and made things worse. Muscle spasticity or spasms won't let up no matter what. Feels like I'm dying from all of this. Gotta stop typing because I can't see through my tears. There'snothing left. Life is over for me. I'm the walking dead. That's why I haven't posted anything lately. No use.

Best of luck for you Sabrina

Sorry to sound so deeply depressed last evening, I'm just suffering so bad. Shaving my head and applying lidocaine patches all over is breaking my heart. Got some aleve and benadryl and hoping for the best. Neurotin seems to make things worse so I've taken it upon myself to come down from 600mg 3x a day to 300mg 3x a day. I cannot tolerate any other anti-convulsants. Too many things going on at one time everyday. I've been fighting this, all of this for 2 yrs and my symptoms are out of control. Very uncertain about my local pain management because I've seen the same doc once before and he was overwhelmed with all of my symptoms. That was before the major surgery done on my skull and neck. I had to have it but it made the existing RSD worse. I had a bad fall that damaged my tendons and ligaments in my skull that is located at my C-1 level. Cranio-vertebral instability was my diagnosis and my surgery was on 2-26-18. You've most likely read about the neuralgias that developed and got even worse. By the way I was diagnosed with Atypical Trigeminal Neuralgia in 2008 so have I been a fighter all the way through this, Yes! What I did write about not leaving my house is true. Sitting makes things much worse so a car ride even a short distance causes more chronic pain. I cannot stand a shirt on me because of the RSD. Left arm and hand is so screwed up and right is following quickly. Back of head and left side of my head and ear is always throbbing and burning as well. Now I have a device surgically implanted to where I cannot move my head, I think I may have mentioned that before. I really thank you for your kind words and suggestions. We all have our own battles I understand so you just keep hanging in there and do what works for you. My prayer is that your RSD doesn't get any worse. Thanks again

Hi jimmy.   Certain foods and medications make my allodynia so bad and I can’t tolerate clothes and socks /shoes.  What type food do you eat ? Maybe I can see if any could be aggravating it for you ?

I had high pain day too. Changing my babies nappy (diaper ) I felt like a alien thumping on my neck the pain so high and intense today ! Hoping tomorrow is brighter for us 

Some medications made me worse. Example. Amitripiline. I was on this for few months. Helped me sleep but my god I got rare side effects from it. Dystonia very bad in my back and neck. Don’t think I will recover for it.  I stopped it after I realised what was happening ‘. Also lyrica. This drug is devil in my eyes. Helps some but for me horrible. Gave me terrible head pain. Spasm etc all in head.  I also felt sucidical. How I knew it was lyrica I stopped it for a few days as I had ran out and well I have to say the cold lifted from my depressed brain. 

Anyway not much I can offer except an Irish hello and you are in my prayers 

Hi brenda,

I took it upon myself to taper myself down to 300mgs of neurotin 3xday. Just started that 3 days ago. I cannot tolerate any other anticonvulsants. Had been taken 600mg 3xday. I went up 3 nights ago, one time, and it increased the left side head pain above my ear (occipital neuralgia) even worse " I believe." I cut it back myself. Trial and error, you know what I'm saying. Got some Aleve to take am and pm. Also trying benadryl for the burning and itching in the evening. It did seem to help very slightly. I am also on zanax 3xday and hydrocodone 3xday since my surgery on 2-26-18. I don't know if pain management will continue this but I'll find out on the 17th of May. Distonia I haven't thought of but muscle spasms are topped out at the pain scale. Head pain you're having may be Occipital Neuralgia. I've had the injections in the back of my head for this and I only got relief for about twelve hours. Anesthesiologist called it being a numbskull. I completely understand him. So now, just yesterday, I shaved my sides of my head to apply lidocaine patches. I have a full head of hair at 50yrs old. Been complimented on my hair at my age but I did what I had to do out of desperation. I needed the patches on the back of my head as well because of the Occipital Neuralgia and the surgery I had made it worse. Pay attention to Sabrina's comments to me. Like you, she's experienced with what we are going through. Although my case is very complicated I do respect and understand now that I'm not the only one. I'm sorry that you're experiencing a very bad day, it's every single day here but I'm learning. THAT'S THE KEY. I've learned through references at the bottom of these websites and there's more. It's out there. But we must be hesitant to some of these solutions that lead us nowhere. I'm sure I'll post a very bad day and night again but I now know it helps. These last 3 days have incapacitated me. Today, I've had a few that's all and I'm going to grill some steaks regardless of how I'm feeling. A few drinks at home is not the answer but sometimes we break. WE NEED A BREAK EVEN THOUGH THE PAIN CONTINUES. We're going to beat this even if it takes us down completely. My little brother and only brother has called me Rocky since I was a teenager. He now believes that I can beat anything. So put your gloves on and keep fighting.

Wishing you the best and stay away from Lyrica if it doesn't help. That's a nasty drug,,,,

Jimmy

P.S,,, I believe the thought of suicide is normal while experiencing what we feel. Unfortunately the docs don't see it that way because they are not going through what we are. JUST DON'T ACT UPON IT AND I WILL NOT AS WELL. Like Rocky we must take the punches but in the end we will be the ones standing. Don't forget that!!!!!!

I never heard of Occipital Neuralgia. Doctor tell me I have crps in my head and face.   ? I got injections last week you speak of and got 5 hours relief only.  The spasm is horrific.  

I also luv my hair it’s long black.  I wanna shave it off some days to get at pain but sure I prob regret it. 

I also believe a few drinks and try relax helps at home.  Monday is over here now so it’s bed and start fresh in morning. Nothing else we can do 

Fight fight fight !!

I never heard of Occipital Neuralgia. Doctor tell me I have crps in my head and face.   ? I got injections last week you speak of and got 5 hours relief only.  The spasm is horrific.  

I also luv my hair it’s long black.  I wanna shave it off some days to get at pain but sure I prob regret it. 

I also believe a few drinks and try relax helps at home.  Monday is over here now so it’s bed and start fresh in morning. Nothing else we can do 

Fight fight fight !!

I never heard of Occipital Neuralgia. Doctor tell me I have crps in my head and face.   ? I got injections last week you speak of and got 5 hours relief only.  The spasm is horrific.  

I also luv my hair it’s long black.  I wanna shave it off some days to get at pain but sure I prob regret it. 

I also believe a few drinks and try relax helps at home.  Monday is over here now so it’s bed and start fresh in morning. Nothing else we can do 

Fight fight fight !!

Occipital Neuralgia and Trigeminal Neuralgia. I have them both as well as CRPS (Reflex Sympathetic Dystrophy). You enjoy your long black hair as long as you can stand the pain. My decision wasn't easy. I did the same thing last November. Treatments for both of these Neuralgias aren't promising just like RSD. Chronic damage nerve pain is almost impossible to control. You know this. Hang in there and talk to your neurologist about these conditions. Never take no for an answer. You have this, they don't. I'm miserable tonight but grilling filets. 1st time in awhile. Good night Brenda, I'm sorry your suffering. Nobody understands but us. 😊

I was seen by two neurologist who both said it’s crps of the head and face /mouth. Theyvsaid the colour changes in my face left side and chin is another sign and the temp change. I have cold crps. But that was last summer. TRhings have prob changed bit since then. 

I am refusing all nerve blocks from now on. My neck has been through too much thr last two months.  I know my pain consultant is doing his best. But I feel any trauma to my body makes me worse. I only had crps in my left foot. Within 1 year it’s everywhere. Hard to understand why.  

What you are describing sounds "exactly" like Trigeminal Neuralgia or Atypical Facial Pain. Occipital Neuralgia is not out of the question though it affects the side, back, and top of the head. Try YouTube on these matters and listen carefully how these conditions affect the face, chin, and head. CRPS while spreading will amplify these conditions. Be persistent on the right diagnosis. In my medical records I've been diagnosed with them all. My treatments have failed but that's me not you. Keep a very open mind and be solid even if you have to tell a neurologist that you know for certain Trigeminal neuralgia is what you have along with CRPS that's made it worse. That was my approach.

Laughing is so important. I watch my favorite comedies. Mostly reruns. I've seen them all many times but always find humor in them. M*A*S*H*, Frasier, Everybody Loves Raymond, King of Queens etc...

I work jigsaw puzzles, crossword puzzles, color in adult coloring books, light gardening, funny and cute vidoes & stories on the internet. I try to do things I enjoy throughout the day. I intersperse them with my household chores. So important.

Thanks for great info:-)

Tracy

You hang in there Tracy. Finding some enjoyment is certainly the key even if those times are limited. I love Everyone Loves Raymond. As a veteran I watch a lot of WW2 programs and also plenty of movies and documentaries. Have you ever seen Schindler's List. It hard to watch but what Oscar Schindler did to help save as many of the Jewish people was incredibly powerfull. A must watch if you need a inspiring story. It is graphic I must warn you. Other than that I love all kinds of movies. My favorite series of movies is Rocky. No matter what he overcame adversities. Enjoy your day.

Jimmy (Rocky)

Hi, Rocky (Jimmy)

I have seen Schindler's List, back in the 90's at the theater. It is an inspiring movie but so sad what happened, the Holocaust.

I like the Rocky movies too. I like the Indiana Jones movies too.

My husband was in the Army but only for a year. He was medically discharged as he rebroke an ankle and foot that had been broken twice before.

I hope you have a good day.

Hang in there, too.

Tracy

Hi brenda, I'm just wondering how that facial pain is doing, How does it feel above and behind your ears or one ear? Does that back of your head ache as well? Is your scalp bothering you also? Keep your research up and present it to your physicians? Be relentless and be convincing of what else you may have. You are your own advocate. This site is like a tree and we are the branches. Learning from one another, I found out, is the key. Now I don't rant as much as I did because I know now that I'm not the only one even when I feel extremely bad. Anyway, do you like scary movies? Just got done watching Annabelle Creation. It was nice to get creeped out to take the edge off. That sounds like an oxymoron. Lol. Good night from SC.

Hi rocky. 

Ok let me tell you what is happening. 

Burning pain on top of scalp. Like in a circle coming near my forehead but a definite top of head. 

Then burning pain along hair line at back of head at sides. I suppose you could say behind ears but little further back.  Also neck pain is at back of head.  That bone has deep pain constant. Also feeling of cold sensation.   Sometimes I feel what is like fierce stabbing nerve pain mixed with someone throwing ashes on my skull.  Mostly left side.  Face has red color on one side.  Left check bone feels broken. 

Is that helpful ? 

The allodynia is very bad on head neck so can’t evrn put on a hat to help with cold.  I washed my hair yesterday and thatvhas started a new flare I assume 

I swear it sounds like both Occipital and Trigeminal Neuralgia. Of course I'm not a doc but knowing so well where the pain is and the extensive studying I've done I do not believe that I am wrong. I would go ahead and call your doc and ask for 5% lidocaine patches just to give it a try. They are not cheap fora box and there are a few brands that don't stick well. My brand is Qualitest Pharmaceuticals. I have extreme pain in most of my head and face just like you're describing. It's hard at times to pick the worst spots but applying them where you can will help some even though they are not a pretty sight. I'm covered in them now but I know that I have to use them. The back of your hair line so a spot where they will come off easily because of the movement of your neck. Your jaw bone though, is a spot I'd cut one to the shape where it's painful and apply. Those expensive 4% patches that are sold in the stores ain't worth a crap but that would be up to you to try. Trust me they suck. Lidocaine patches only really work on skin surface nerve pain, not deep bone pain. I know this for a fact, at least for me. That broken feeling in the cheek bone is very familiar. Red color with chronic pain is telling you something is wrong. Again, really study Trigeminal Neuralgia and Occipital Neuralgia. Trigeminal affects the face and Occipital affects the rest of your head and neck. There are treatments for Trigeminal but in my case they all failed. Occipital nerve blocks in the back of my head gave me numbskull for about 8hrs only. Those blocks are trial and error for each patient but wasn't helpful for me. The Trigeminal nerve breaks off in 3 branches: forehead, middle of face (JAWBONE!), AND jawline extending to the chin. Each side of your face has are identical with these nerves. They branch off right underneath the ear just slightly behind the ear. Usually it's only on one side though Atypical Trigeminal Neuralgia can affect both sides and be in constant pain. I'm diagnosed with ATN and also Atypical facial pain. I don't get lightning strikes of pain. Mine is a heavy burning constant pain and and movement of my jaw makes it worse but we must move our jaws correct? When you say mostly left side of face that sounds like classic Trigeminal Neuralgia. Anyway I hope that's enough to help you. Study and be persistent and jot down notes for your doctor. Most likely your doc won't read your notes because they like to see you as you are during an appointment though they appreciate you coming in prepared. Good luck and best wishes for you.

Rocky

I am going to get patches today  they are 134 Euro for 30 day supply 1 a day as I get them on a drug scheme system we have here. If I didn’t have that they would be 390 Euro !! I will place half on back of my neck and half on side of my face. You can only wear them 12 hour a day. 

I will try get to book consult with neurologist ASAP to discuss TN and ON. 

That a girl. I keep min on around the clock. Severe pain without them. Be sure that you cut the according to where you want to apply them. You can cut them in half to help make them last longer. Be sure to make a complaint if the brand don't stick or stay on. There are certain brands that aren't that good. In the US, especially the Veterans Administration Hospital they try to cut corners to save money. Also different pharmacies may carry different brands. Be persistent on the proper brand like I have been. Glad you're giving them a try for nerve pain relief. You may still feel some pain during flare-ups.

Good luck,

Rocky

Hi Rocky.

You keep doing what you need to do to stay as comfortable as you can.

I'm praying for you.

Tracy