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Posted 5/7/2010 7:12 PM (GMT 0)
Hi Suzane!
I or should I say we were so upset that you were hurting so bad while in the chat room! I said a prayer for you like I told you I would. I'm just checking in because I hate it when one of my "peeps" is hurting and there's nothing I can do to help!

Please be better today!!!

Your buddy,

Pete
Posted 5/7/2010 8:07 PM (GMT 0)
oh hi petey
thanks for the prayers my friend
unfortunately no sleep last night
a couple on\off this morning
crying and no better
i am so scared
thanks for thinking of me

hugs to all my dear friends
Posted 5/7/2010 8:25 PM (GMT 0)
I'm so sorry that you're not feeling any better. I'm thinking of you. Even though I don't post much, I do read to keep up with how everyone's doing.

Hugs,

Flower
Posted 5/7/2010 10:31 PM (GMT 0)
Oh dadgumit! I was really hoping you got some sleep and woke up feeling better! I'm so sorry. I'll keep you up at the tiop of the prayer list!
Oh I didn't tell you before, I've been to Ottawa! My brother Johnny married a girl from there over 10 years ago and I was the best man! My brother is a musician from New Orleans La. and they love him up there in Canada! He plays sort of a combo of Zydeco/blues/Cajun stuff and is a member of the "Save the Wetlands Band w/ Dr. John, Tab Benoit, Anders Osborn and others! Anyway, we had lots of fun up there! I met a bunch of people who were fisherpeople who I made plans to fish with someday however it never happened. There were lots of fish stories exchanged that week! You have some awsome fishin up there!!! Someday maybe I'll make it back up there. Maybe a short fishing trip will help you?????? Just a thought.
Big Hugz my Friend!!!
Pete
Posted 5/7/2010 10:59 PM (GMT 0)
Ahhh thanks my friends for trying to cheer me up and thanks for the prayers. I have many people praying for me and I sure need them.

Sure would be great Pete if you ever came back this way. There are many great fishing spots. My husband will take you out for sure. He is taking me camping in a couple weeks to change my thoughts and camping is something i love to do every summer, so i am hoping it will help.

I'll pray for some sleep to come to me tonight.

hugs my friends

hope you all had a decent day

Posted 5/8/2010 1:04 PM (GMT 0)
http://www.mayoclinic.com/health/giant-cell-arteritis/DS00440

TMJ, I know you have tried alot of different treatments for your temporal headaches with little or no success.  I've been doing alot of research on Polymyalgia Rheumatica and it has a relationship with another disease call Giant Cell Arteritis which it seems that you have alot of symptoms of.  This condition is very critical and can cause blindness and stokes if not controlled.  I just thought you may like to check into this since it seems that no doctors have been able to help you out. 

I don't have any relationship with the above website so I think it is ok to post it.  There is alot of information on the web about this.  Good Luck and I hope you can get some relief soon because you sound like you are feeling like your at the end of your rope and could use some help.  I'll be thinking of you!

Posted 5/8/2010 1:34 PM (GMT 0)
Jeeze thats kinda scary! Suz, are you feeling any better today???
Thinkin bout cha!
Pete
Posted 5/8/2010 5:51 PM (GMT 0)
Feel better soon Suzane , sending prayers and good vibes your way . Mikel Good job Pete , your the man !
Posted 5/8/2010 11:16 PM (GMT 0)
Hi Suzane,

Thinking of you today... I wish there was something I could do for you to ease your suffering.... but I do continue to pray for you each day. I've enjoyed our late night "chats" :) but wish we both could sleep better...

I know the future is scary w/ not knowing what's to be... I really understand.

I think you are a wonderful person, Suzane. I sure hope you feel better.

--Tina
Posted 5/9/2010 2:16 PM (GMT 0)
I hope today is a better day for you and that you find some long needed rest.

I wish I knew more to say, but I'm at a loss for words when I don't have any suggestions for help.

I will keep you in my prayers.
Posted 5/9/2010 11:29 PM (GMT 0)
Hello my dear friends. Thank you for your prayers. I sure need them as I am not doing well. I feel like i don't know how to cope anymore. I am so scared and feel like I can't be alone. I didn't even want my hubby to go to work today. I don't know what to do. i am losing it or have lost it already. I had a horrible dream last night that my pain dr. admitted me to the psych hospital and said he would not be helping me anymore with my pain. I just can't get it out of my head. I was balling like a big baby. Anyways i have decided to go stay with my mom for a few days, leaving Tues. night. She helps me so much and perhaps i can get in a better place while i stay with her and hubby is at work. Thank goodness he is at my side every minute that he is home.
I am sorry that I can't support you all through your pain right now but I am weak. I pray i can get some strength and courage back and very soon too.

I will check in before going to my mom's.

hugs
Posted 5/10/2010 1:53 AM (GMT 0)
Hi Suzane, your headaches sound so extreme. You poor old thing, my heart goes out to you.

I've only had 7 weeks of headaches and can't imagine 10 years at all. My neuro team straight away told the rheumy's to wean me off the opiates as opiates can cause headaches in themselves and something called rebound pain. I'm pretty new to all this, I've been put on Tramadol 100mg slow release as well as 50mg for breakthrough and it seems to push the headache back to a vestige of its former self. I suppose you've tried all this over the years?

I'm also going to go see a osteopath to check it isn't my neck thats causing these headaches? Have you checked your neck? I know at this point you've probably been there , done that, but I feel so sorry for you. Headaches are just so disabling and the resultant nausea is truely awful.

Have they given you any idea of the cause or causes? Diet , allergies, hormones, stress, medications were all mentioned to me. Or a combination?

Best , best wishes, I don't won't to upset you when you are so low, I hope the time out with your Mum helps, so tough when you are in such pain. Golitho
Posted 5/22/2010 8:29 AM (GMT 0)
Hello my dear friends. Sorry I have not been around but I have just been having a really rough time with these severe headaches and what i believe I am in, is a deep depression. I just find it so hard to have any more hope and it seems to be difficult to get any strength in my body to fight this as i get such little sleep. It was great to visit with my mom but i even had a hard time there. I had a big ray of hope come last week in that I had found a chronic pain psychologist, thru my friend, but only to find out the cost is $170.00 per hour which I can't afford as we have no medical insurance (hubby works for a small company). So that goes out the door, unless he responds to my voice message asking for help re: the cost. So that is yet to be determined. Hubby took me camping to change my frame of mind. i did enjoy myself there. Just relaxed, mostly laying down in the trailer or outside, had friends for supper one night which was fun. No change in the headaches but took in some sun and had some laughs.

So I continue to pray and research my chronic pain to try and find an answer.
In speaking with another lady, I have found something else to research. She mentioned several years ago she had severe temporal headaches and she was given cortisone shots for what they said was an inflamation of the meninges (the layering of the brain). So I will check that out.

Well hope you all have a lovely long weekend. I hope to catch up on your posts and offer you some support as you all have done for me. I hope too to do some gardening which has always proven to be very therapeutic for me in the past.

Hugs to all

Suzane

 

Posted 5/22/2010 3:05 PM (GMT 0)
 

 

   Dear Suzanne,

 

     Good morning! *warm hugg* I am so glad you stopped by! I was just thinking about you the other day and wondering how you have been. Oh, I am so glad you were able to make it out to the camping trip! I know it is something you enjoy with all your heart. You most certianly are tired after your trip, but I am sure it was well worth it! ..though it would have been nice if your pain were under better control next time you go.

 

     The treatment you mentioned as an option sounds like you could really be on to something. If that were the culprit to your headaches, that would explain so much! Like the resistance to certian types of treatment you have tried. Why there isnt any high / lows.. just all the time 10+ 10+. I really think your should persue this lead as soon as you can. If that were the cause it would explain why the pain only responds minimally to heat (sunshine) / cold (Ice packs) and absolutly nothing else no matter how strong the medicine!

 

     Oh gosh, I am so sorry to hear about the pain psychologist! When you call again ask for refrence to someone else if he/she doesnt have a sliding scale fee. Or look at major university. They ususally have sliding scale fees.

 

     I hope you get a few quiet momens to yourself. You are in our hearts and prayers here.

 

*hugg*

  dani

Posted 5/22/2010 10:21 PM (GMT 0)
Ahhhh thanks Dani. You make me feel so good. We sure need to hook up on a chat again one night soon.

I enjoyed our talk that night.

Yeah it doesn't make sense about my headaches, always in the temples, always severe pain, and no treatment or med or orthodontics touching the pain.

I see my gp on tuesday am so I will talk to her about a few things. Plus the urologist was an idiot and said nothing but come back in a month, said the cystoscopy showed no problems. He didn't even have my tests i had done that show I don't empty my bladder which is my problem, and I have to strain each time I void so I need to do catheterizations at home or what keep straining to void until I am done weaning off of the oxycodone and the bladder function comes back??????? anyways I will be talking to my gp about this too and much more.

Thanks to all of you for your support and prayers. I am just having such a difficult time coping with this pain.

Wishing everyone a wonderful weekend with low pain days.

Posted 5/23/2010 12:49 AM (GMT 0)
Nice to see you Suzane,
sounds like the camping helped, cause you had some fun...those cortison shots do not sound good, steroids always mess me up
especially injected..so I try to do as few as possible, but if they can help with your headaches then bring it up with your doctor.
as for the other , does your doctor think you might have a bladder infection? maybe try some cranberry juice, wish I could
give you better advise, Pete is away and supposed to be back by Monday...
Prayers and hugz
(((((((((((((((((((((((((((((((((Suzane))))))))))))))))))))))))))))))))))))))))))))))))))))
Posted 5/23/2010 2:40 AM (GMT 0)
Thanks Chart!!! I sure need some support and I know I can always find it here!!!
I will be talking to my doc on Tues. about a few ideas.
I don't have a bladder infection, i was checked for that and I know what those feel like. No burning on voiding here, just can't void and I know it is due to all the narcotics I have taken for so long. They slow all your systems down, just one of the side effects. I am weaning off mine but won't be done for a few months yet.
I am racking my brain trying to think of what this could be. There has to be something, it just doesn't make sense to have this kind of pain in a headache to last forever!!!!


Thanks for the hugs cause I sure need them!!!
Posted 5/27/2010 6:34 AM (GMT 0)
Any one have questions i could ask a neurosurgeon re: my case. I will be going to see one. MY gp. just put in the consult.

Also do you know of a well known Headache Center in your state or have heard thru someone else about a good one. I would like to make contact with a headache center in the states to find out if we are missing something about these headaches.

Thanks for you input. I certainly aprreciate it.

hugs to all
Posted 5/27/2010 9:43 AM (GMT 0)
Good morning Suzane, One thing to ask the N~S is how many surgeries he/she has done and how often surgeries like the one you might have. I believe practice makes perfect! Also, what kind of recovery time is involved? It's early and my brain isn't working very well yet so maybe I'll think of something else later when I wake up a little!!
Good luck & big Hugz!
Pete
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