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Old 06-01-2006, 11:07 AM   #1
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Confused and at my wit's end....

I have no idea what I'm doing. I'll start with that. In December, I came down with a weird head pain and I've had Cat Scans, MRIs, had dental crowns, a root canal, been to the Neurologists, ENT docs, my Primary, a second opinion primary and an Internist that was my worst docs appointment ever, btw. But I'll explain that later.

I have a genetic foot disease that causes painful outward and inward callous that dry and feel like nails driving into my feet. Lucky me, only 3000 people worldwide have it and I live a few hours from Mayo so I get to play lab rat. Mind you, hurts, all day every day, but not my biggest chronic pain issue. I have Fibromyalgia and Chronic Fatigue and I personally believe them to be seperate because I have reprieves from the CFIDS, but not from the pain of FMS. I have severe sciatica caused because I never listened to my infertility docs after I developed a seperated pelvis they told me would happen every time I got pregnant--which I did twice. To top it off, I hemorraged with my first delivery. A combo of fibroids, and an aggressive doc that pulled the placenta out instead of waiting. They think the fibroids caused my uterus to not contract. FIbroids that increased by 4 times their size because I was on meds. So I never know if my IBS is IBS or fibroid pain.

But the headache...everyone tells me what it's not, but I can't find out what it is. There is no tumor. The blood vessels "looked" ok on the last scan, but at least once a day the pain increases and my temple actually swells. Something isn't right and I feel like because I've had so many other problems my docs think I'm either a hypochondriac or drug seeking. Now this is why I'm posting.

I've tried several times to diagnose the headpain myself. I bought sinus meds online--legally, herbal stuff. The ENT said to continue those but they didn't help. Well, I take Oxycontin and Percoset daily for the FMS so I read that perhaps it could be rebound headaches. Nothing in me believes that, but I figured it was possible so I would try to take myself off the meds. Through this site, I have found that it's difficult for some but until today, I never struggled.

I was on and am prescribed 3- 10mg of percoset, one each taken 3 times daily and 40 mg of oxycontin taken I think twice daily. So I figured I would wean. Two weeks ago I started by reducing the ocycontin to 30, the next week 20 and this week 10. I took the percosets twice a day instead of 3 times and now I'm down to where I can break it in half and take it twice a day for a total of 10mg daily. A month ago, I called my doc, my doc of 9 years and told him I wanted to try this. I asked if I should take another med to get me off of them or wean or whatever. Well, for the first time EVER, he didn't return my call but he SENT my prescriptions ( paper) in the mail. Full quantity, same meds but added the steroid he originally prescribed for the head pain. Now he is ALWAYS late sending my prescriptions. I have to call every month, but of all months, he sends them to me with no call prompting them and almost 3 weeks early to boot. The Steroids only made me fat. It didn't nothing for my head. And why would it? It's for inflammation and if the scans didn't show any, WHY are they prescribing it? Answer: just to shut me up for a few days. I didn't ask for my full prescriptions and now because I don't know if they are indeed the problem or not, it feels like I'm in a lose lose situation.

My pain is so intense now. Throughout weaning, I haven't had ANY physical pains or wants to take more. It's almost as if I'm not taking them. I really am not fighting a desire, just pain. It's the Fibro pain. I don't think it's withdrawal pain because I'm not sure I was actually withdrawaling, I know that doesn't make sense. I went to the Addiction board but I don't think I can post there because I have legitimate pain and legitimate use for the meds. Here's the thing, I had a HUGE fight with my normally supportive spouse today and I just feel like I'm at the bottom. If he of all people can't understand that I can't move, can't think straight and am battling my own self worth, who can? I'm just lost here folks. Not sure why I'm detoxing because the pain meds help my physical pain and now that's overwhelming me. If I do detox and it turns out the my meds weren't the cause, then I'm really angry to have gone through all of this. I have small kids and I do have help caring for them because of the disability so I have a nanny, but I can't recoup the time I haven't spent with them these last few weeks struggling with all this pain. I decided to buy a colon cleansing program and I'm taking that now too. I figure I'll clean everything out and start fresh.

Even off the majority of the meds my head pain hasn't gotten any better. I have bottles of pain meds and I have tons of pain. But I'm not taking them, thereby causing more pain. I just need someone to tell me that I'm doing the right thing in testing myself off the meds. Maybe some encouragement to keep going. How long does it take to get these meds out of your system? By next week, I will be completely off or only taking one half of one percoset each day and no oxycontin. How long after that before the drug is out of my body and I can tell if it had an effect on my head? I just hope I can get there. Has anyone gone through this?

My doc wants to refer me to a Pain Management doc but I don't know what they are and a friend told me it's like treatment. I don't feel like I'm a drug addict. I'm a chronic pain sufferer but I don't think I'm a drug addict. Of course, when I tell people what kinds of meds I take, they assume I must be and wonder how I pull myself together. What irony. They don't realize that it takes me an hour to get myself out of bed to brush my teeth IF I can let alone brush my hair and I apply make up from my bed for my one week -2 hour excursion to my daughter's dance class. My one excursion from the house. Sorry to write so much. ANy feedback is appreciated.

Last edited by CaribouMom; 06-01-2006 at 11:10 AM.

 
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Old 06-01-2006, 12:24 PM   #2
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Re: Confused and at my wit's end....

Pain management is NOT for drug addicts. So don't worry about that! PM docs are there to treat your pain as a whole, mental, physical, etc.... The doc's specialize in patient's with chronic pain is all. It sounds like it would be a good choice for you. You might actually find a way to get some real solid pain relief.

 
Old 06-01-2006, 12:45 PM   #3
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Re: Confused and at my wit's end....

It sounds as though you are going through a difficult time. If by now the headaches haven't decreased they may not. I do know many other members mention that certain brands of Oxycontin do in fact cause headaches so there's a small chance that yes it could be the culprit. Since you've come this far perhaps just waiting it out one more week will give you the answer.

While you've had so many tests did the doctors ever look at your c-spine? Granted I doubt problems with the c-spine or neck would cause swelling on your head or face but it definately would cause severe headaches. If you haven't had it checked it deems worth looking into.

It could be also a case of you are one of the individuals who does suffer from daily migraines. I used to have them for months at a time and they were horrendous so I can understand what you are going through. I found that pain medication actually caused rebound headaches that were much worse than the initial migraine itself. Luckily for me I learned what triggered my migraines and now avoid those types of things and get them very rarely.

I'm not sure if this will help or if in fact your problem is migraines but if you search through this board you'll read about some of the individuals who have been getting botox injections for migraines and are reporting good results. I guess that it is something to at least consider. I know when I had migraines I'd do just about anything to get rid of them!

Whatever you do, don't give up, you'll eventually find the answer. If you wait it out another week and are off the oxy at least you'll hopefully be able to rule out that it is or isn't the cause and then go back on your medications. I would start back up on them slowly however, you might find you may not need as much medication as you did prior to your detox.

Additionally I wanted to add that going to a Pain Management specialist is a wise idea. They are under different DEA laws and regulations that most standard doctors. They understand pain much better than most doctors and don't fear prescribing the needed medications to control pain. Pain Management is NOT for addicts, in fact addicts are not welcome! Whomever might of suggested that is very confused or uneducated when it comes to what a true Pain Management Specialist does!

Best of luck and please let us know how it goes

Barbie

Last edited by Kissa; 06-01-2006 at 12:49 PM.

 
Old 06-01-2006, 09:27 PM   #4
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Re: Confused and at my wit's end....

Hi,
This may not help, but I wanted to mention that often times headaches can be caused by dental problems or needing glasses. I'm sure you had those tests. I wanted to let you know just in case. My b/f gets headaches just from certain smells or bright lights.

 
Old 06-02-2006, 05:50 AM   #5
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Re: Confused and at my wit's end....

Pain Clinic is what you need. My severe headaches that put me to bed ended up coming from disc problems in my neck. Currently on methadose with no problems. Please have all the tests run the right pm dr. will do this. Hang in there...............
Let me know..........
jeanne

 
Old 06-02-2006, 06:47 AM   #6
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Re: Confused and at my wit's end....

sorry you are suffering so badly.i know from experience just how badly headpain alone can totally destry you.i just had some questions for you.

like jeanne mentioned,there CAN be a connection between any sort of a problem in the c spine and headaches.there are actual cranial nerves that go from the head and down thru the c spine then loop back up into the head.the loop or the major junction area of where many different nerves meet is right between the c 7 and t 1 vertebrae.i have a ton of facial paresthesias and other bizarre crap just from the c 8 nerve area being heavily damaged due to a surgery done at that spot directly inside of my spinal cord.i think a c spine MRI would really be a must do at this point.also,though you have mentioned actually having an MRI done on your brain,have you ever actually had what is called an MRA/this type of scan is done the same way as an MRI but the difference is that with the MRA you are actually only obtaining strictly arteries and no other brain tissue,just the arterial structures.this is very important when trying to rule out any possible sort of vascular malformations within the arteries themselves.

the problem with just having an MRI done even with contrast,is that since it is also picking up all structures within the brain as well, there are places like arterial bends and junctions that in an MRI ,can sometimes be rather 'hidden' from view.by removing all of that crap and just seeing the arteries alone,this just gives you one of the best looks possible at just the arteries and nothing else.

i was recently Dxed with a brain aneurysm which was NOT picked up on just an MRI,so because of these wierd changes in my facial wierdness around my nose and mouth(which could have been explained by my C spine crap as well,and up to that point,we had always assumed that was the case,now my NS wasn't too sure)my NS sent me for an MRA just to see if i didn't have some sort of vascular malformation in my brain.well as it turned out,there was and because it was actually at a curve and also very close to the cerebellar and vertebral artery junctions,it had been completely missed on the MRI.the really strange thing here was that as it turned out,those changes I had been feeling actually were just still related to my c spine crap and not the actual aneurysm,but luckily for me,it was enough to actually prompt my NS just to get it checked out,he is just a very thorough NS.I feel blessed there really.i guess the moral of the story is if you haven't actually really looked at any area,you cannot rule it out as a possible medical issue ya know?

I really would do two very important things for yourself.talk with your doc about getting that MRA of the arterial structures(at least if nothing shows,it can pretty much be ruled out as a possibility anyway)and also,while you are already there for the MRA,they can do that c spine MRI for you too.these two areas really really do need to checked into as far as any possible triggers for your headaches.since nothing else you have tried has actually found anything,this would really be the next step here in order to give you the full scope of the brain and the c spine.two of the biggest areas of headache triggers.

I am wondering too about any possible connection between the meds and your headaches only because it sounds like you were actually on these meds for a while before the headaches actually started??am I right?did these headaches just suddenly appear one day or just how did they first present themselves to you?while there IS some headache issues that have been popping up with the newer ENDO version of the oxycontin,unless you were actually Rxed it at around the same time as your headaches developed and it was definitely the endo crap and you are still on that version while you have been experiening the headaches,i would really kinda doubt that this would be the actual culprit,ya know?

well,I hope you can obtain those scans I mentioned as I really do think that these two areas ,well at least one of them could hold the culprit of your headache trigger.good luck and please keep us all posted,K? marcia
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Old 06-02-2006, 08:16 AM   #7
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Re: Confused and at my wit's end....

Hi CaribouMom, I was very offended when my dr suggested seeing a pain specialist. I thought it meant more pain pills and the end of everything for me. I was also suffering from headaches and migraines. It was, actually the best thing that has happened to me in a long time. My new pm actually looked at the mri on my c-spine and gave me the correct diagnosis. My other dr had missed things, just didn't look hard enough.(she didn't look at all--just read the report) I have been headache free within a week of seeing my new pm! He found buldging discs in my neck that were effecting the nerves which were in turn giving me the headaches and migraines. I would definately give it a chance. And do keep in mind you do get rebound headaches from a lot of the meds you take. I am now on a med for my headaches that is not a pain med and does not cause the rebound problem.

 
Old 06-07-2006, 10:20 AM   #8
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Re: Confused and at my wit's end....

Quote:
Originally Posted by feelbad
I am wondering too about any possible connection between the meds and your headaches only because it sounds like you were actually on these meds for a while before the headaches actually started??am I right?did these headaches just suddenly appear one day or just how did they first present themselves to you?while there IS some headache issues that have been popping up with the newer ENDO version of the oxycontin,unless you were actually Rxed it at around the same time as your headaches developed and it was definitely the endo crap and you are still on that version while you have been experiening the headaches,i would really kinda doubt that this would be the actual culprit,ya know?

well,I hope you can obtain those scans I mentioned as I really do think that these two areas ,well at least one of them could hold the culprit of your headache trigger.good luck and please keep us all posted,K? marcia
Thanks for the replies. I am going to ask for the neuro to send me for those scans at my appointment next week. I was on the same meds for quite awhile but I'm almost positive that my Percoset was increased to the 10/650 at that point and I hadn't been on that one before. As of today, I'm hurting everywhere. I'm now taking a 5mg of percoset because of get this--a pharmacy mix up. They gave me the wrong meds and to remedy it, they are just giving me another full bottle of the 5mg/325. I guess that's fine especially since I'm decreasing so much anyway. But it's tough and here's my confusion. I'm in pain. I have meds. Common sense says take them. But my head hurts so bad. I just haven't been able to rely on docs for the past 7 months to find out what's going on with my head so I'm doing all this stuff to figure it out myself and in turn, I'm almost bedridden again with the Fibro and sciatica and my feet. All of my friends and family that know NOTHING of pain let alone my illnesses are thinking that decreasing my meds is "such a good idea". They wince when I say Percoset or Oxycontin outloud and liken me to one of those whacks on Dr. Phil that are addicts. I feel like I'm in a perpetual catch 22.I'm going to make an appointment with a PM doc. My doc already gave me a referral. Perhaps they will be able to help me with some of this.

The weird thing-my headache is actually bareable when I'm overexerting. This weekend we went to our cabin and I was my normal self. Normal meaning my 5 years ago self. I barely sat down the whole time. I did have 2 beers mind you each day and that's something because of the meds I haven't had in YEARS. But I was doing so much, so often that I wasn't able to event hink about the head pain. But sure enough, once I stopped moving, I had to eal with the FIBRO/CFIDS and the head pain. I'm just clueless right now. I argued AGAIN with my DH because I'm really moody now with going off my meds so much and the increase in pain and he seems to forget that each day. I'm glad I can post here because I feel like you all at least understand the basics of taking pain meds for ACTUAL pain. Thank you for that.

 
Old 06-07-2006, 10:22 AM   #9
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Re: Confused and at my wit's end....

Quote:
Originally Posted by BlueSteam
Hi CaribouMom, I was very offended when my dr suggested seeing a pain specialist. I thought it meant more pain pills and the end of everything for me. I was also suffering from headaches and migraines. It was, actually the best thing that has happened to me in a long time. My new pm actually looked at the mri on my c-spine and gave me the correct diagnosis. My other dr had missed things, just didn't look hard enough.(she didn't look at all--just read the report) I have been headache free within a week of seeing my new pm! He found buldging discs in my neck that were effecting the nerves which were in turn giving me the headaches and migraines. I would definately give it a chance. And do keep in mind you do get rebound headaches from a lot of the meds you take. I am now on a med for my headaches that is not a pain med and does not cause the rebound problem.
Thank you for your post. I'm hoping I have your exact experience. LOL! I hope that a PM will find out what's really going on with me. Speaking of which, going to call right now.

 
Old 06-07-2006, 11:09 AM   #10
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Re: Confused and at my wit's end....

Sounds like you should be on a sustained release pain killer.Percocet isn't much after about 6 weeks of use and really that's all it's meant for anyway and for break through.Has your doctor ever mentioned putting you on say ms contin or the (duragesic) patch????Dave

 
Old 06-07-2006, 12:18 PM   #11
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Re: Confused and at my wit's end....

My doc has never suggested it. He just gives me either percoset or vicodin for break through but on a schedule and the oxycontin. What's weird about all of this is that I recall being in so much pain 3 years ago and being on Tylenol 3 and not being able to get relief. I never had the right qty or my doc screwed up the dose times and I never had enough meds. Well, I already mentioned that I told him I wanted to wean from the meds. In turn, he mails me out my paper prescriptions, something I ALWAYS have to call to remind them to do, 3 weeks BEFORE I am supposed to refill them. So I dropped them off this week , a week late because I had some and it slipped my mind, and the pharmacy now screws up.

Instead of the 10mg which I planned to break in half anyway, they gave me 5mg but kept the qty as 148 for the month. I wasn't there when they were picked up so I called them and asked them to refer to the paper and they realized their mistake. I explained that it was no big deal because now I can just take the 5mg instead of breaking the 10mg and she said they would have to launch an investigation because they made an error. She told me that we could remedy it by her giving me another bottle of the 5mg/325 for the same qty which would equal my 10/650 dose and qty of 148. Well my husband picks it up today and these idiots filled the qty as 248, not 148. I dare not bring them back for fear of this "investigation". Whatever that is.

It's nothing to complain about, but it irritates me because of all those times I didn't have the meds I needed. Now that I'm going off them, they give me too much. I found the pain doc and scheduled my appointment though. I'm just tired of pain and knuckle heads and they seem to go hand in hand.

 
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