just venting to get it out

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catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 6/29/2010 9:44 AM (GMT -7)   
the past 2 weeks have been TERRIBLE pain and weather wise. Here in NW Illinois its been HOT and raining and storming every day. The heat is terrible for my head pain so I have had to be content to stay in the house but today it is BEAUTIFUL. 68 degrees with a breeze off the river, partly cloudy skies, wonderful day to go out in my garden which I miss so terribly ever since I got sick 10 years ago. I love to garden, always have. I woke today and thought finally with the cooler weather I would be able to go out for at least a bit and garden or pull weeds ..heck I would be happy to clean up after the dog ..ANYTHING to get out of this bed. I have so many plans and darnit MY HEAD WON'T STOP...I can't get up, I've taken the embeda and 3 norcos' already and I can't stop the pain.
Don't we deserve just one day where things are just minimally better to get to enjoy a day????
I'm sorry for whining...but no one else understand. My kids are home and they just get up and GO, ones' headed to taste of Chicago, another is just going out..EVEN THE darn DOG IS AT DAYCARE.....and here I am going back to lay down and wait till its time to take another pill.

I hope some of you can enjoy this beautiful day...maybe when I go back to the pain doc tomorrow there will be a magic cure...we can hope can't we?
sigh
catahoula
sick and tired of being sick and tired


antbuggey
Veteran Member


Date Joined May 2010
Total Posts : 594
   Posted 6/29/2010 10:51 AM (GMT -7)   
Catahoula, I am so sorry you are hurting so bad. I sooo understand, I can't stay out of bed either and feel like I am losing my summer....and my mind! My thoughts and prayers are with you and I hope your pain will begin to ease! Don't be sorry for whining, sometimes that feels like all we have that will allow us to let some of this out and that is what we are here for! And never quit hoping.....never quit dreaming! Take care of you....I am going back to bed, also!

Hugs,
Beckey

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 6/29/2010 12:32 PM (GMT -7)   
Catahoula vent away, you deserve it after the last 2 weeks you have been through. I really wish one of these drs could come up with some magic for you. You are sweriously past due in that ept. Hope the appt goes well tomorrow.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 6/29/2010 1:15 PM (GMT -7)   
thanks. I just wanted to make a nice meal for the family and can't find the ability to go to the store. I think this is the hardest part, wanting to do something , knowing the mind is willing but the body just won;t cooperate. I force myself to take the dog for a walk every day even though it hurts like hell once I get back. Lord knows I need the exercise since all I do is sit or lay around. All of the meds I take have the side effect of weight gain and boy they are not kidding. I was weened off the topomax because it didn't help ( too bad, thats the only drug I've used that warned of weight loss!), now we're going off the Lyrica ( added 40 pounds with that one!).
I'm nervous about the docs' tomorrow. Not because of the nerve blocks, heck I'm used to those already . Its another 10 "little sticks" again, but because I have to bring up the fact that the meds aren't working. I am so afraid of being considered drug seeking but darn it..I HURT.
The newest symptom.."bobble head"..You know how they move when you poke them? well thats whats' going on inside my head all the time. Sooooooooo disorienting.

oh woe is me :o(

better days to you all
catahoula
sick and tired of being sick and tired


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 6/29/2010 2:33 PM (GMT -7)   
Cat,
I don't get to read every thread these days so I think I've missed some of what's been happening with you. But I sure understand the mind or spirit being soooo willing and the body just totally uncooperative!

I like Beckey's thought - never stop dreaming. Although sometimes for me that is painful because we dream things we can't do. Still, maybe we need to keep dreaming until we hit on things we can do!

Be honest with your doctor tomorrow. What else can we do? It's the only chance we have of maybe getting decent PM.

Good luck!

PaLady

Potsie
Regular Member


Date Joined Oct 2009
Total Posts : 291
   Posted 6/29/2010 4:32 PM (GMT -7)   
catahoula, what kind of headaches do you get?

tmjpain
Veteran Member


Date Joined Oct 2008
Total Posts : 2022
   Posted 6/29/2010 4:58 PM (GMT -7)   
Dear Catahoula
I don't think we have spoke much together before, but reading this post of yours makes me think of me. I have had headaches for ten years with no answers yet. Have gone to many docs, tried all the meds and different forms of therapy. And nothing. I have been in bed the last two years, as they headaches are constant, 24/7, and 10/10. It is quite often difficult to get thru the day but I am trying hard and only focusing on the day at hand. My headaches are in both my temples. Tell me about your headaches and what forms of treatment have you tried. And nothing working for you either??
So I know exactly what you are feeling. I too love my gardening, well two weeks ago I was putting i my annuals and I was crying. It just wasn't the fun I always have. And last night tried to do a bit more and it was so hard, I was almost in tears on my hubby's shoulder.
It's a tough road. Please take care of yourself and know that I understand you my friend.

Hugs
   
SUZANE
      
 Chronic, severe and continuous bilateral temporal headaches since 2000.
 
           


caligirl2001
Regular Member


Date Joined Jan 2010
Total Posts : 197
   Posted 6/29/2010 5:05 PM (GMT -7)   
So sorry catahoula to hear about your unrelenting head pain. Sounds like you've suffered with that for a long time. I'm so sorry that you have not found a medication that has worked for you. I hope they find something. I have a friend who needs morphine shots for some of her migraines and has a standing order for up to 5 per month.
We ran through several preventives that were miserable failures for me. I am currently on topamax It is the only preventive that has worked so far for me, and has cut me down to being in pain only 1/2 of the time instead of all of the time. Maxalt usually can halt a serious one. Before I got health insurance earlier this year, I just had to suffer through them with nothing.

I hope your pain doc has some help for you!
Fibromyalgia, High BP, Migraines, anxiety
Current medications: Topamax, Maxalt, Lotrel, Wellbutrin

Post Edited (caligirl2001) : 6/30/2010 12:52:56 AM (GMT-6)


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 6/29/2010 7:11 PM (GMT -7)   
Catahoula,

I'm adding myself to the list of people who wish things were better for you. I know too what if feels like to see life and all it's pleasures slipping away because of constant pain. I do hope your doctors come up with some new ideas for treatment, to relieve your pain or at a minimum, reduce it to a manageable level.

I pray for you and I'm also sending a gentle hug.

Pam
Conditions: Fibromyalgia, Severe Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoroacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3611
   Posted 6/29/2010 9:44 PM (GMT -7)   
catahoula

Yes it is nice weather we are having here in Illinois, I am in the east central part of the state. Today has been the nicest day that we have had in quite a while! It is nice to have the lower humidity and and temps,it sure is a far cry from the 90's and the hot house humidity that we have been having for weeks on end! Especially with all those violent storm and all that rain! But today I spent the day inside and in my recliner! I guess we all have our bad days, it is just to bad that they happen on the good weather days!!! Anyway You are not alone! I sure do hope that things get better for you!
Do take care!

White Beard

Angelemie
New Member


Date Joined Jun 2010
Total Posts : 3
   Posted 6/30/2010 6:45 AM (GMT -7)   
Cat- I haven't been on here long so I don't know what the response is to this sort of suggestion.
I am an RN
I am sorry that you are laying down and watching the world pass you by, I certainly know the feeling. May the moments you do have be wonderful, blessed ones.

Angelemie please read the forum rules, rule number 2 especially. Thank you.

Post Edited By Moderator (straydog) : 6/30/2010 9:57:48 AM (GMT-6)


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/1/2010 10:01 AM (GMT -7)   
well..
I went to the pain doc yesterday, told her how things were going, we went over my pain journal and she decided to do nothing. Said she couldn't continue to inject me as it didn't seem to be doing any consistent help. Didn't want to make a med change as we've pretty much tried all the pain meds out there. She is now in the process of getting all my medical records purtaining to this pain for the past 10 years, or at least is going to try to. I told her that the neurologist she sent me to is also trying to get the records but for some reason they are meeting with a lot of resistance from Rush, the teaching hospital I was being treated at for the past 5 years. For some reason, no matter how many releases I have signed Rush is not giving records.All we can do is keep trying but until then there is no change in treatment, I don't even have a follow-up appointment scheduled. Doctor said she'd call me when she heard. I am hoping this is not a subtle way of telling me she has given up. ( "Don't call me, I'll call you") So at this point I am on the embeda and norco and in limbo, not the result I was hoping for.
Its another beautiful day out there , I just wish I could be out in it. Right now I'm reduced to watching foreign movies and reading the subtitles.....oh well...maybe it will rain and then I won't feel so bad.
Suzane, you asked about what kind of headaches I have. Well most time it feels like I have a "bobble head" and that things are just bouncing around in side my head and I have to wait for things to "settle". It feels as though an ice pick is being jammed into my right ear as well as my eye sockets ( supra trochlea nerve.) My right eye burns and tears yet is dryer than the Saraha. Both ears itch way down deep inside. The entire rear of my head feels like pins and needles are being pressed into it. There is a constant pounding pressure that radiates from the bottom of my skull up through the top and then starts all over agin at the base. There is a deep throbbin dead center of my forehead and I always feel off balance. I can't wear my glasses for more than 10 minutes at a time or my face starts to hurt. It hurts to think, the more I try to concentrate, the more the pain intensifies. Any change in pressure or temp sends me running for an ice pack and I feel full headed and cloudy, almost like walking through jello.....and this is a normal good day. I would not wish it on my worst enemy.
thanks all
I send you, my caring family, many painfree days
catahola
sick and tired of being sick and tired


damouthy1
Veteran Member


Date Joined Sep 2009
Total Posts : 663
   Posted 7/1/2010 10:44 AM (GMT -7)   
Catahoula, I am very sorry you are suffering with head pain. I know what you are going through unfortunately. I have headaches daily and used to suffer from migraines 3 to 4 times a week. Last summer I had one that lasted for a month and a half. It was pure heck! Headaches completely consume me. I cannot function at all, or even think of anything but my pain. I have finally found a doctor who has gotten the pain somewhat under control and I feel like I have some quality of life.

I hope that you can eventually get some relief. Did the embeda work when you first started taking it? I worry because it finally took me being put on oxycontin to get me to where I'm at now and keep hoping it doesn't stop working for me. I think Suzane (TMJ) went through her meds not working after awhile several times. Just know that you are in my thoughts and prayers and you have so many people here that care about you! Take care.
Gentle Hugs,
Shannon
 
Fibromyalgia, Chronic daily headaches, Migraine disorder (with and without aura), GERD, High blood pressure, Depression and Anxiety
Oxycontin, Flexeril as needed, Lopressor, Lexapro, Omeprazole, Clonazepam as needed, Promethazine as needed for nausea from migraines


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 7/1/2010 11:15 AM (GMT -7)   
Cat,
Hospitals are such complex places it takes very little for a request for records to go to the wrong office, sit on a pile (even in the right office), etc.

I'd suggest you call their medical records department directly, get the name of the person you're speaking with, tell them what's happening, and ask who precisely you can direct your release of info. to so it gets to the right place in the hospital. Tell them your doctors are waiting on their records to continue with your treatment (which is the truth). They don't even need anything more from you if the records are going directly to your doctor, but this is probably the only chance you have of untangling what's likely going on. Just waiting for the records to appear in your doctor's office could take forever, as someone in one of their offices will have to do this phone calling if and when they get time. You are far more motivated to get the records than they are to get the records for you, sad to say. But it sounds like there's a snag in the system - very, very common.

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13473
   Posted 7/1/2010 1:50 PM (GMT -7)   
I use to have to obtain medical records nearly daily on our clients. And PaLady is so right about the hospitals and how one sheet of paper can get lost in the shuffle all because it ended up in the wrong place. I often got on the phone and called the hospital and that always got the ball rolling. If you have to call more than once always write down the the date/time and who you spoke with about what you are needing. There is no reason for the hospital to NOT release these records to your dr.

Catahoula this next question is probably going to sound crazier than ever, but have you ever been to an allergist and have you ever had complete allergy testing done???
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 7/2/2010 8:08 AM (GMT -7)   
oh yeah..had all the allergy tests, my back and arms were full of needle marks but found I am not allergic to ANYTHING. Just another case of "everything is normal". I even tried ear candling, acupuncture , chiropractor, naprapath, but boy I am willing to try anything so keep those suggestion coming. Last night it had cooled off so I thought I would try to go out and pull weeds and water the garden. I lasted about 10 minutes and then the whole "bobble head", pressure rising, pain pounding came back BIG TIME. I had to go in the the air conditioned room and it took one embeda and 2 norco and an hour for it all to settle. I am just so darn frustrated .( pardon my language). Its a beautiful morning and the cats went out for a bit. I tried tp join them but after 15 minutes BAM!!! I love the summer, used to be a sun worshiper but now I must watch it through the windows. There is a web site called "But you don't look sick." and boy does that fit me. I look fine( fat but fine) and I guess thats why its hard to convince family that there is something wrong.....oh well..
hugs to you all my dear friends
please have a pain free 4th of july
catahoula
sick and tired of being sick and tired

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