Loretta...Good morning..you know me..I am not taking anything for this..When i wake up with it..I merely get right up..take some excedrine migraine and drink coffee and stay sitting up..rarely go back to bed.. I am not a caffeine junkie..actually I am very careful of that and my diet...the left side of my head is where ithe headache is bothersome..my left ear has pain always along with hearing loss.. down to my jaw...It's got to be a nerve thing... I wondered if possibly it was RSD there thats why I threw it out there... Thank you my friend for describing the tN complication... possible... And I was busting on you on our limbric brain...You are so sweet....

Have a great day and soft painfree hugz to you....I hope you are doing well....

Kathy

Yes. I also have ear pain on and off but it can get very bad. I have issues with my eyes and severe pain so for me they all seem to be connected. I went back to my neuro after the reg docs for this like ear,eye etc and musltiple tests and he did an mri again of my brain and ear. No reason behind it and I wonder if it has to do with rsd though it is in my legs. So since there is nothing behind it I guess for me I am hoping my meds for the legs will help the eyes/ear/head. Feel better,

funny Daniella.... but my RSD is the worst in my rt. leg but I have it in both along with my lft. hip, lft. shoulder and rt. jaw... Now these painful headaches/ear pain..it is very painful and when I first started having the head pain..I ws sent for an MRI..nothing to account for the pain and as far as my ear pain the neuro at the time said it was because I had shingles on my neck and it was dormant there causing hearing loss and ear pain..but funny as RSD is a neurologic disorder and it took me months to find a Dr. to give me some reason for my ear troubles.. a few years later it was evident that my RSD was present...it was atribated by my rt. knee surgery but the original area of concern I do not know as my leg was swollen and painful before the knee operation... but we did the surgery anyway...I could be crazy but then maybe I am not... lets just say I am ...tee-hee....

Nice hearing from you all!!!

Gentle hugz, k

I started getting monster headaches about 14 months after the onset of RSD. In fact, I can remember the exact day - October 18, 1987

I spent as much time with doctors looking for the cause of migraines as looking for the cause of the RSD.

A do notice a corrolation between a flare-up of the RSD and a more severe headache. Sometimes one is the warning of the other. Too bad I still can't do anything about either. (Not too effectively, anyway.)

Mike

When I suffer from my "monster headaches" I'm unable to move from my bed for hours at a time. They are usually brought on by too much physical activity - like when I use my arms for anything - or if a bad storm is coming. I also got a horrific headache from my PT massaging the occipital area of my head last year. The last really bad headache I had was when I tried to clean up what most people would consider a minor amount of leaves in my driveway with a rake - I think the vibrations of the scraping of the rake is what caused the head pain.

I haven't found anything that works yet on my really bad head pain. Usually I wake up vomiting from pain, then spend the rest of the day huddled in bed trying not to move and hoping for unconciousness. I usually take meds to help knock me out, and will apply heat to my neck and head in an effort to stop the spasms. It takes time for my headaches to pass - a day or two or three. And another week or so before things start to calm down for me in other areas of my body, too.

Monster headaches are the bane of my existence - I have ceased doing anything at all strenuous with my arms because of them. My head pain is the primary reason why I am seeking ketamine treatments - I can't do a whole lot because of them right now.

XOXOX Sandy

Sandy, I'm so sorry you get that sick. I've been there, but not like you describe. or as often anyway. When my Mom was dying of cancer, I cared for her the last few months. There was no hospice then, in 1973. Dr. gave her morphine and valium. The valium at 2 mg. helped to calm her system down. Have you asked your Dr. about a mix like that. I take vicodin and lorazepam, which is an anti-anxiety and my vomitting from high pain has stopped. BioFeedback is also something that has helped me with migraine headaches. Aren't they the worst, headaches. Like I mentioned before, I get trigeminal nerve pain right at the temple. Have you read about it on this forum. I've been having it more lately, I will ask my Dr.
Well swettie, keep in touch and let us know how you are doing. Your friend, loretta with extra soft hugs

Hi Kathy,
I had migraine some years back and attended support group glasses at the hospital. Also attended Biofeedback-which is learning different methods to relax parts of the body, know our signals. It was good. The TN is bad-I've had it lately-no fun. The TN site is good here. Good to heard from you-have a good day and hopefully low pain day.
My Dr. opened his two clinics recently. He has HBOT in both. I'm saving $ to go thru 1 or 2 series. Probably this summer. He has been having good success with others for various conditions. TV crew has been out 3 times.
I'll just tell once experience. A woman was driving the freeway in Phoenix-There was a wreck of two other cars-going into a metal fence-the pole became a missle and went thru her windshield and took off part of her little finder and arm and then impaled her shoulder into the back of the seat. They saved her arm with 18 operations. Her shoulder became frozen (like me at the beginning of my RSD following surgery) Anyway, her Neuro. asked my Dr. a Neuro if he would take his patient and do the HBOT. He did and in 9 treatments she was waiving at the tv crew wo reported her story. It took me 100 pt treatments to get my range of motion back. He has had a couple more stories where the TV crew came out. One clinic is 5 min. away and the other is 10 minutes away. I can't wait.I've started a home based business on healthy chocolate with a patent on new method of making the chocolate- cold pressed instead of cooking it and loosing nutrients. It's the #1 antioxidant in the world.
About the TN, I also have ear pain. Sometimes get the little red painful dots inside my ear. Eyes have been crusty but not painful. I'm been having breathing issues-will talk to my Dr. about. It's sudden uncontrollable grasping for air. Wakes me up at night. Never know when it is coming.
Take care, loretta with soft hugs

So nice to read your note..I must say I am concerned for those red dots.. as in your ear..I believe to understand the puppies show up as a "trail marker" for our RSD..I also have them and many on my affected areas... check em out Loretta.. plz.

Also the breathing issue I wonder if internal is that and RSD thingie?? Another question for your Dr.....

My pain level never changes but good days to me is when I feel strong and allow the love in my hear to pull me thru.. some days I can get sad, I never cry really just scared of my RSD and my future with it....

Oh btw... I gotz to get me some of that cold chocolate..kidding..I would bah in that brown stuff if I was allowed to..... good luck on your endeavors as I think that is awesome!!!! I'll be your taste tester...

Hugz Loretta!! Kathy

Hi kathy, thanks for your thoughts on my ear, red dots. There was a post on red dots, lots of friends here have them. I have one new lesion, about size of a quarter. Last year, i had two and they got infected-fun- really painful. I said then if I got them again I would go to the hospital. My husband cleaned them out. I still have scares from them.
I'm going to try and find my letter to you. or re-write your letter. Will send you some samples.
My husband and I were talking this evening and he said he doesn't do pain. I'm glad it's me instead of him. He wouldn't be a good patient I'm afraid. He does all the grocery shopping and cooking. We both share in the house work.
Take care, your friend, loretta with extra soft hugs
Kathy, what do you mean trail makers? How do I check them out? Is there anything you can do? I've shown them to my Dr. I have a new internist and gyn Drs. I'll show them to these two Drs. They have treated RSD before.

Loretta...
I am so so sorry for your suffering with those painful lesions..I have never gotten one of those babies..I do however have the red dots all over my body..starting on my RSD worst leg now many everywhere... I believe I read once they are considered "trail marker's" for your RSD..they show up on the areas affected..I hope I am correct in my thinking..as I am sure I read that... possibly someone here will clarify me and plz..do share with your Dr.'s and see what they have to offer about it as they have treated RSD... I ma sorry as I look back I miss quoted and spelled "trail markers" wrong...

Your husband..a trooper, as mine.. I fired mine twice from grocery shopping..he didn't stick to his list and spent a gob of money so we had to let him go...no doubt. I'll try again sending him to the store another time, once he is off probation!! tee-hee.... AND ... NO way can our husbands have this pain and illness..a sick man!! Pardon me all men here but that would be the worst....

Gentle squeeze back to you, Loretta....

Take care my friend....