Hi all...


KS here..I have a question for ya all...Anyone notice that you have Monster (probably compared to migraine) headaches especially waking up with it in the morning?? I must get right up and take migraine meds..lots of coffee and wait til it passes... I actually feel the pain on the left side of my head ..by my left ear and eyes...I know poor loretta, is going to say that's that limbric spot again..but once again..Loretta..tell me again..is this the correct location??? They beban a few (~5yrs. ago) before I knew I had RSD, officailly..I dare think this was my warning sign in the beginning and didn't know it... These headaches are killers...not your normal..ouch!

Thanks family,
Much love, Kathy

Hi KS,
I have suffered with migraine all my life (well since grade school).
Then, I got a book from (of all people Consumer Reports) simply entitled headaches.
I don't have it any longer, as I loaned it out so many times... once it didn't come home.

Anyway, what you describe sounds like a migraine.
But you also mention something that's critical. Coffee/Caffeine.

I had a friend call me once, who was a coffee drinker/smoker. He had a "killer headache", and knew that I got them too. I went through a list with him, the usual suspects;
nitrates, in lunch meats, aged meats and cheeses, wines, nicotine, caffeine, etc.
He had not had time to drink his "normal amount of caffeine that day.
I recomended he make a fresh pot, and imbibe.
Two hours later, he called me thanking me. His headache was gone.

There's lots of free info out there, and probably here on NT, about headaches, there are different kinds, and if you're like me, my TOS, "Triggers" my migraines. Lately, in the cold, I've been getting "cluster" migraines. It's a migraine that comes and goes for a week, or longer.
I find that imetrex, their new one, Treximet, work good, the nasal spray, and I've used all of them, some don't work, some do. Everyone is different.

But, I find the real key, is to find your "triggers".
When you get one of these migraines, think back over 24 hours, what did you eat?
For some, it's Pizza. Others, nitrates, others, nicotine, and / or caffeine.
And the list goes on....

I hope you do some research into it, and find your triggers, if, in deed these are migraines! They're agony. All in your head!

I also want to add, that there are now meds used to prevent migraines, etc. I take zonegran, or topomax is another. Both I think are available as Generics I think.
Talk to your doc!

Prayers for you!

pete

Thxs. Pete..

KS here...sitting up and coffee takes it away..funny part is it started getting them a few years back..they wake me up 99% of the time just in the morning..and noticed it right when I had a hearing issue and hearing loss and pain in my ear..only on the left side of my head too....

Have a great night!!

Hi Kathy, My pain is the temple area called the Trigeminal Nerve Disorder. There is a place on this forum for Trigeminal Nerve Disorder. How I describe it is like an icepick stuck in that area between the eye and ear. It can cause numbing of that side of face 1/2 of the face. My Dr. a neuro said it's usually on one side or the other.
I guess I do talk about the Limbic system a lot LOL Actually the Limbic System is a different part of the brain and it controls short term memory loss, a loss of words while talking , forget the word we were going to use. That's the way my Dr. explained it.
Someone on the other forum, before it went down had TN and had an operation at the Mayo Clinic. It went bad and he was unable to practice law for years. He had a surgeon that it was his first operation. Naturally he was devasted. I've always wonder how he is doing. After a few years he offered to work free for another attorney and came in to the office on his own terms. Sounded like a nighmare.
Kathy, I'm so sorry you are suffering from this. What are you taking?
Hope you have a low pain weekend. Your friend, loretta with soft hugs

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

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