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Chronic Pain Whatever the cause, support for managing long term or intractable pain.

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Old 01-16-2009, 11:27 AM
slipnslide slipnslide is offline
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Exclamation What a Week!...and Fentanyl ?

Hi All,

It's been one of those weeks. Last Thurs. morning I got a call from my dad asking me what he should do because when he went in to wake my mom, her eyes rolled back, she went pale, then stopped breathing. He tried shaking her, shouting, a few light slaps to the cheek but she was unresponsive. He gave her a few breaths and she started to breath, then belched and vomited a little bit. She didn't remember the event and was refusing to go to the hospital so he wanted me to talk to her. I told him to get her to the hospital immediately. Instead of calling 911, he got her up to get dressed and took her into the kitchen. While standing at the kitchen counter, the entire event repeated itself so he called 911, then called me to tell me he was riding in the ambulance and to meet him at the hospital. After head and lung CT's, a chest Xray, blood and urine tests, the only thing they found was her sugar was a little elevated (no previous history of sugar problems) and her Blood Pressure was a little high (takes meds for BP). They kept her in the hospital into the weekend so that they could monitor her. When they released her, she was put on Keppra for what they believe was a seizure. I spoke with the Hospitalist and she assured me that my mother's Neuro (who has been treating her for Alzheimer's) would speak with us regarding her CT's and that he may want to do an EEG. To make a long story short, I had to track him down to get any answers and even then, the message he left for us was: "I didn't see anything on her CT"...needless to say, I'm finding her a new Neuro.

I had my PM appt. on Wed. and he asked how the adhesion lysis surgery went. I explained how the quality of the hip/groin/thigh pains had changed, but the abdominal tugging pain was gone, and told him what problems I was having with the neck, shoulder and arm. He decided to put me on a long-acting Rx. I was put on Fentanyl 25 MCG/HR Patch in addition to my current Rx's: Percocet 10's, Lidoderm Patches, and Keppra 750. I told him that the Keppra helped me to sleep but that it didn't touch the nerve pain and that I was waking from a sound sleep with searing pains. I was given the option to stay on the Keppra or to go off of it, so I chose to go off it. I started the Fentanyl patch on Wed. and have noticed my pain levels going up and down like a yo-yo throughout the day and night. It's only been 48 hours so my body may be adjusting to it still, but I'd like to know is that common when first starting the Fentanyl? My sleepiness/dizziness is also doing the same thing, fluctuating like a yo-yo. Anyone have the same experience or know if it's common?

One last thing....Since my abdominal Adhesion Lysis surgery, I've been getting hot flashes, and lower right abdominal stabbing which I attributed to the surgery and just assumed they would subside during the one month recovery period, well, they have not subsided. I also have burning during urination since the surgery which I attributed to the catheter and thought that it too would go away. Now I'm wondering if my right ovary may have stopped working(which my GYN said was twisted and looped around the tube but he didn't want to remove it back during the surgery in Aug. because of my age & the need for hormone production, and because it was still functioning)??? Maybe I have a UTI or bladder infection? I'm afraid to call my GYN and sound silly, so does anyone recognize any of these symptoms?

Thanks so much,

Kim
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MVA 11/17/05,6/22/06 ACDF C5/6/7-w/corepectomies, foraminotomies, DDD,C3/4 & L4/5 L protrusions, facet hypertrophy, MP

Last edited by slipnslide; 01-16-2009 at 11:31 AM. Reason: typo
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Old 01-16-2009, 04:08 PM
jtroy jtroy is offline
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Hey Kim,

Sorry to hear about your mom....I hope that there are some definitive answers and the new neuro appt. goes well....is it possible in your mind that the event could have begun as a GI problem, like perhaps something esophageal that strictured her trachea enough to cause oxygen deprivation? I'm only speculating from what you wrote...ultimately I would be just as driven as you are to get a definitive answer.

Anyway, I know all too well about Fentanyl. I've been on as many as ten 100ug/hr patches and have been on 300ug/hr for a while now...just started reducing to 275ug/hr and will continue as much as possible. Since my pain is very neuropathic I've noticed that it responds differently to different meds and the one med that is really weird is Fentanyl. I was on Methadone for years and while I often say "it worked the best" that really means that when it did work well it would make me unprepared for the flares which perhaps made it seem worse....I don't take bt meds as they only make my entire situation worse and far more difficult to handle flares with my other non-med techniques.

Fentanyl probably actually works the best....it will take you maybe as long as 90 days to fully get the benefit from it...including potential dosage adjustments. 25ug/hr is a small dosage but you likely have a low opioid intake already. As you mentioned you've just started it and are still on your first patch...your descriptions sound alot like mine each time I first went on Fentanyl....pain is up and down far more than usual (in my case the ups and downs weren't as high as I'd normally seen) and the sedation from it isn't predictable...alot of the sedation thing comes from the fact that you are now adjusting to a med that is being distributed to your blood stream at a relatively constant level and the times of the day when you have been used to a lower concentration of med, i.e., times when you are used to not having sedation are now times when there is an opioid at a therapeutic level in your system. It can become quite frustrating and if it is too much to bear a med change is in order.

Keep in mind there is a 12.5ug/hr patch out there as well. That is the patch you'd likely be given if you required an increase later. The best thing you can do is push forward and go ahead and change your patch....something also that could be happening is something quite common I hear about here (and actually I notice as well)....the patch could be becoming less effective for you now at this 48 hour mark....some people describe withdrawl symptoms at 48 hours some describe pain flares, etc., and need to change the patch every 48 hours as opposed to the 72 hours usually scripted for. In my case the flare on day 3 has become the only thing predictable about my pain and I can handle it....others cannot. Also...I don't know if you got a resevoir patch (Janssen, Watson, others) or a matrix patch (Mylan) but for me the Mylan matrix patch is far better at lasting longer and sticking better while not causing my skin to react.

Anyway, I hope this helps some...if you want to email me, feel free to at: tjandfon@hotmail.com anytime...it's never an intrusion. Wishing you well.

Regards,

T. Jones, DVM

p.s.....you could have a UTI...however, from what you learned from the surgery I'd strongly urge you to get in to your Gynecologist...nothing is ever silly when our bodies talk to us...ever. The only thing silly is hearing your body talk and not acting. If you were my wife I'd literally tie you into the bed of my pickup and drag you in there if I had to!! email any time
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Old 01-16-2009, 05:49 PM
Tbackpain1 Tbackpain1 is offline
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I'll just pipe in here and say I agree with Dr. Troy about the Fentanyl. I've been on 25 microgram patches every 48hrs for at least 6 years now, and barring changes to my BT meds occasionally, I've done well with it. I did have a period during the first 3 months where the sedation was random, along with flare ups, but after that initial adjustment I settled in nicely and was able to resume alot of things I could not do before Fentanyl.

Its very possible you've got a UTI brewing in there. You can hit up your GYN to give you an exam just to make sure your girl parts are in order and they can do a quick urine dip test while you're there to check the UTI.

I am sorry to hear about your mom. I had lots of very frustrating interactions similar to yours with regards to neuro's and my grandmother when she was still alive because her alzhimers/dementia diagnosis clouded everything else that she had going on. Be persistent.

Be well.

Theresa
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Old 01-16-2009, 08:10 PM
slipnslide slipnslide is offline
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T. Jones & Theresa,

That's exactly the way I've been feeling these first two days. I couldn't have described it better than the way you both did. It has dulled the searing pain in my hip and groin, so that in itself is reason enough for me to stick out the yo-yo'ing until my body adjusts to the Fentanyl. I'm just so shocked, it's the first thing to have an effect on these nerves running through my hip and into my leg...and I don't think it's a cooincidence!

I got copies of my mom's CT's to take to the new Neuro, and I was apalled to see that there was a 7mm hypotense lesion in her thyroid that the radiologist noted and suggested further evaluation with ultrasound. Nobody in the hopital mentioned it to us, they said everything came back fine. I called the hema/Onc that I see and they told me to call her GP and request the Ultrasound. Her GP wouldn't request it without me making her an appointment, so she goes monday to her GP regarding the thyroid ultrasound.

I suppose I will put a call in to my GYN on moday too and let him know what I've been feeling and let him decide if I need to be seen. He's going to think I like seeing him or something!

Thanks so much,

Kim
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Old 01-17-2009, 12:35 AM
Mark N Mark N is offline
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Kim, sorry to hear about your mother's episode. I hope that her doctor can determine what is causing this. I hope that your issues clear up as your body adjust to the patch.
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Old 01-17-2009, 03:39 AM
slipnslide slipnslide is offline
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Mark,

Thank you. I'm so disgusted with her Neuro and GP, neither of them caught the problem with the hypointense lesion in her thyroid even though it was clearly noted in the report and stated that further evaluation was recommended. Had I not picked up copies of her Radiology reports, we'd probably never have known that there is a potential problem. Hopefully it turns out to be something benign, then we can just focus on her neurological issues and the Alzheimer's.

I don't see my PM again until mid February so I have a full month for my body to adjust the Fentanyl. I also got a script to start PT for mobilization and stabilization which I'm hoping will make me feel a little better physically, without kicking my butt and putting me in more pain.

Kim
__________________
MVA 11/17/05,6/22/06 ACDF C5/6/7-w/corepectomies, foraminotomies, DDD,C3/4 & L4/5 L protrusions, facet hypertrophy, MP

Last edited by slipnslide; 01-17-2009 at 03:40 AM. Reason: typos
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Old 01-18-2009, 09:11 AM
Domzy Domzy is offline
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Kim,

I am so sorry to hear about your mom! It's just unbelievable that a doctor wouldn't disclose this information.

As far as the Fentenal I have no experice with it so I can't help you, however we have several patients in work that are on it and it does take an adjustment period.

I would call your doctor tomorrow and try to get in, don't fool around with it.

GO EAGLES!!!!

Kathy
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Old 01-18-2009, 10:35 AM
Mark N Mark N is offline
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Kim, it is good you read the report on your mom and you are right that it is hard to believe her doctors didn't catch the follow test that were recommended. I hope the PT makes your pain levels better and that your body adjust to the patch quick.
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1979 spinal issues, 1993 lumbar microdisectomy L3-4, 1996 360 3 level lumbar fusion L2-5, 1999 open thoractomy fusion T8-9,
2002 C3-7 herniations and T4-7 herniations, 2004 total disability, a new limited life
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Old 01-19-2009, 12:18 AM
slipnslide slipnslide is offline
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Kathy and Mark,

The Fentanyl patch seems to really hit me between the 18th and 24th hour after applying it. I start getting dizzy, loopy, have trouble focusing with my eyes, and tingling sensations in my upper torso and arms that come and go for many hours. Of course, this is only the second patch that I've applied so I'm guessing that over the next couple patches things should level out.

The appointment I set up for my mom with her GP is tomorrow, and I'm thinking of going with her and my dad just to watch over what goes on. I don't trust that the tests regarding her thyroid will be ordered swiftly and that my dad will remember all that the doctor says, so it's probably easier if I just go too. If I have my way, she'll be sent right over to the hospital to have the ultrasound on her thyroid performed.

Kim
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MVA 11/17/05,6/22/06 ACDF C5/6/7-w/corepectomies, foraminotomies, DDD,C3/4 & L4/5 L protrusions, facet hypertrophy, MP
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Old 01-19-2009, 09:35 AM
Kathi49 Kathi49 is offline
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Kim,

I hope the appointment for your mom goes well today. I forgot to mention that in my PM's to you. Let us know how it goes.

And I hope the patch se's level out too. I don't recall any tingling...just bouncing into walls and honestly couldn't do a thing during that second day. But I wrote about all that in my PM's. Oh, I do remember having a very heavy feeling my legs...almost had to crawl up the stairs. Anyway, give it some time and see how it goes. Hopefully, as you said, you will adjust.
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