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, 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....

Just was reading your post and conversation with Loretta. I am sorry about your headaches and all the pain you deal without and medicinal support. I do know what you are saying, I also have celiac disease, and must be very careful about the medication that I take (most do have gluten in them). However, have you ever tried something mild like valium or lorazepam? My doctor had me on a small dose of valium twice a day years ago and it really did help the overall pain. Headaches were not as intense, and also it helped with the Causalgia and stress. I now take Lorazepam twice a day as needed, it truly helps my pain much better than any of the other pain medications that I have tried and it actually calms down my stomach. It is kind of like one of those cover all medications. But in my opinion, the valium was better cause it had a greater effect on the muscle spasms as well. There is also another home remedy for severe headaches that your husband would love....my naturopathic doctor told me about and it really works. If you can't figure it out, pm me and I will clue you in. Hope your symptoms ease up.

Jeanie

So nice to hear from you and I really appreciate your thoughts about the meds.. so thoughtful of you.... thank you.... unfortantely i have tried not only the valium but also the Lorazepam..I ended up praying..you know over the percelian god... I learned long ago..see I had to have bilaterial first ribs remvoed after a car accident.. 22 yrs. ago..I had TOS (who knows if that is related to my RSD showing up or not)....but after my first rib.. and trying the meds for pain then..I did the second rib on Tylenol only.. it was so not worth getting sick with cuts in my chest.. But it doesn't stop me from trying new stuff as the RSD pain,. as you know is relentless... Have not had a break from it in almost 3 yrs... Iam either crazy or stubborn...I think a bit of both... Honestly..I get thru by the love in my heart and know that life is still precious even if I have to grimice once in a while ...walk funny and fake it...

So darn nice to chat with you, Jeanie..thank you for thinking of me...

Have a restful evening....

Hugz, Kathy

Lets see (finger to my chin)..something my husband would like and pain relief for me... let me guess it has nothing to do with his grocery shopping abilities right??....

Oh no, and I have fired my husband on the grocery shopping as well, I mean it is like...what were you thinking!!! I mean have you ever served sardines and chips with chicken? LOL, what would we do without them. I am so sorry that you are so sensitive to medications and they have that affect on you. I do not know how you do it. I mean, I take a very small amount of medications due to stomach problems, but after eight years of severe pain I finally broke down mentally, and just had to start taking something, however, I must admit, I do have my days with the porcelain God. I also meditate, TENS Unit, heat therapy, relaxation techniques, water therapy and prayer. I commend you for your strength. I do hope your monster headache eases up, those alone can put me over the porcelain God. God Bless.

Jeanie

Great note and I once again appreciate it so much... I do worry about my future without medicine and with RSD..I know and you do too how devestating RSD is and such horrific pain over long life long time...I guess I go to bed each night praying that I will wake up without RSD but as each day presents itself... I still have RSD..somehow I have a re-newed will to fight and move forward.. what helps my heart feel happy and willing to go on..it's the love and support I feel you, my friends as well as my family and friends here give me... I guess what I really want to say is I could not do this without you... esp. having to be medicine free... bless you too my friend..

Hugz, Kathy


(ever see the print on the side of the our procelain fixture..I believe it says.. don't forget to clean me.. tee-hee)!

Dear Jeannie and Kathy,

Thanks for the info on the Lorazepam for quieting down pain. I don't take anything like that now, just a muscle relaxer before bedtime. I appreciate it....

With a winter storm hitting us today (the last one missed us), I can feel the "bugs crawling" on the back of my head and my shoulder feels like someone is stabbing knives into it, even with meds I don't seem to be able to escape the pain. KS, I am sorry that you have such a sensitive stomach. When my pain levels are high I end up sick anyway - that is why I don't use my arms anymore. Its not worth it.

Have a good day, I enjoy your posts. XOXOX Sandy

I was also suggested trying lorazepam from my pain doc so I agree about looking into that. Were getting a weather change here too and I feel it.