Suboxone to Oxycodone IR Question (Apologies for the Long Post!)

I appreciate your reply.  I was getting rather discouraged, with over 100 views and no responses.  It's okay that you have not had experience with this; the fact that you cared enough to comment means a lot to me.  I have read many of your posts, and must thank you also for the advice you did not even know you were giving me.  You also have been through so much, and you seem to have found a balance that I am still searching for: the ability to accept what is happening to me, without feeling that acceptance equals surrender (if that makes sense).

What you describe re: the Paxil is something I have heard before, so it does not sound crazy in the least.  When my younger sister was taken off Paxil she experienced very much the same thing, only in bursts.  It would happen out of nowhere, scare the you-know-what out of her, and last for anywhere from a few seconds to an hour.  Then it would stop as suddenly as it had started.  She called me and asked me to please look into it for her, due to the fact that her PCP didn't believe her (and to be honest, as much as I regret admitting this, I didn't either at the time; I had never heard of anything like it before).  I found out that there was research underway regarding the effects of Paroxetine, and although it had already been approved by the FDA, widespread reports of withdrawal effects were only just beginning to be understood.  In the end, I "borrowed" some of the research info I had found at the University I was attending (I returned it though, and nobody was the wiser, so I assure you I am not some sort of medical library thief!) and attended her next appt. in order to show her PCP.  In a way, I suppose it is scary, in the what-is-this-stuff-doing-to-our-brains sense, but not crazy in the you-should-be-put-in-a-padded-room sense.

Finally, I want to thank you for your kind words regarding my health.  To be honest, I cannot complain, even a little bit.  Not in good conscience, anyway.  I have many friends and family overseas who are lucky to even see a "real" doctor, and I know I am blessed to receive the care I am able to obtain.  Also, as strange as this may sound, I am very grateful for my experiences.  I do not think I would be who I am today without all of this.  The cancer, as well as the complications of my last surgery, caused me to truly open my eyes and see how lucky I am for every little thing in my life.  I had taken so many things for granted, from the sight of a sunrise to my own children (even when I was with them, I was mentally in a hundred places, doing a hundred things at the same time).  I was unable to just stop and appreciate life for the simple fact of living.  I am able to do so now, and the pain is a small price to pay to know that when I go, I will have had the chance to live, if that makes sense.  Now that I have found a beauty to living that I had not known before (in all of the stress and chaos of school/work/research), I have a huge reason to battle this for all I am worth.

Okay, I'll stop rambling now. =)  Thank you again for the kind response, and I hope your day is beautiful.

- Aisha

First of all, thank you to everyone who has replied thus far.  I am more grateful than I can say.  I apologise for throwing more ponderings out there, however as I stated previously, many of you have far more experience with this sort of thing than I.

I saw my PM Dr. earlier, and after going over my most recent (19 August 2009) MRI results with me, as well as showing me the images (which in a way I wish he had not), he made a few suggestions:

1)  No doing anything more than essentially waking up, eating, walking slowly everywhere, breathing carefully, and then going to bed.  Okay, not quite so severe as all of that, but to make a long story short, my spine is much worse off than I had been led to believe.  He stated that if I am not careful, I will likely lose my ability to walk.  This saddens me more than words can express, as I had held out hope that someday I would be able to teach dance again.  Still, I refuse to give up hope.

2)  He wants to try injections again (two years ago, with my last PM Dr., I underwent those and couldn't walk for several weeks afterward, but at the moment I am willing to try anything), as well as the SpineMED decompression system, which looks positively heavenly.  That was the high point of my visit with him, seeing that machine waiting for my use.  Has anyone tried this?  If so, does it work?  This is the website for the system, if that helps jog anyone's memory: http://www.spinemed.com/

3)  In the case that none of the above works, he feels surgery is the next best option.  I have researched LSI (http://www.laserspineinstitute.com/), and I suggested it to him today.  He feels there is no problem with that, if I am willing to travel that far for surgery (again, not a problem for me).  If anyone here has any experience with LSI, good or bad, I would love to hear it.  What they offer seems to be a dream come true.

4)  This next thing I have more than a slight hesitation about: He said that what I was experiencing was likely due to my dosage being too low, and rather than raise it to a stronger IR medication, he opted to Rx Duragesic (Fentanyl) 50 mcg. patches (and to continue the 5 mg. Oxycodone IR q.i.d. as needed for BTP).  This makes me very, very nervous.  Going from only the Suboxone (6 mg.), to only Oxycodone IR (5 mg.) q.i.d. (for less than a week, to date), and then to Duragesic 50 mcg. seems risky to me, but perhaps I am being paranoid.  I worry my tolerance is too low, and it may be dangerous to jump to something so high.  I voiced my concerns to him before accepting the Rx., and he said it was perfectly safe.  He said that many people start at a higher dosage than that, but I don't know... I'm just uncomfortable with it.

I hate to be a bother, but once again, if anyone has any suggestions/input in regards to any of this, and can tell me if I am right in being concerned, I would greatly appreciate the input.  Please understand that I don't have some strange distrust or fear of doctors; quite the opposite, I trust them with my life (literally) on a rather regular basis.  However, being that I only just started seeing this new PM specialist, and I do not know him very well yet, I am slightly concerned.

Perhaps it would be best if I started a new thread to ask about this?

Thank you once again to everyone who has taken the time to reply.

Have a wonderful weekend,

- Aisha

Lung Dr.,

Thank you.  Your in-deph reply was just what I needed, and confirmed a few things I had thought of prior, but was not sure of.  Unfortunately, while on medical hiatus, I have a much harder time gaining access to literature at UTMB (which in the past has been my primary resource), and it seems far more difficult than it ought to be to get a straight answer out of some specialists.

I agree that surgery ought to be an option of last resort, however I am growing desperate.  I have been dealing with a bad back since I was 19 years old, and my 30th birthday just passed.  I am able to deal with my fair share of burden, that was never a problem, but to be honest I have had quite enough, and at the moment if someone suggested removing my spine entirely, I might just consider it (not seriously, but I am sure you understand where I am coming from).  The first time surgery was recommended was when I was 25 years old.  I opted to wait it out in hopes the problem would resolve itself (rare, but it does happen on occasion), however I am thinking it may be time to try that option, as it seems so few pain medications work for me.  I must regain my productivity, or I will go completely insane.

In the past decade (approximately, as I began when I was 21) I began working my way up to stronger ER opiate medications, as my tolerance raised and my pain threshold decreased (hence my choice to taper and go without for a bit, and my subsequent agreement to try Suboxone, in hopes it would "reset" my brain).  The pain medications I have been on have included OxyContin, MS-Contin, and Opana ER (not all at the same time, however), all of which made me extremely ill, regardless of dosage.  My dosages of IR medications for BTP (again, prior to the Suboxone) were high as well, and we have tried Hydrocodone, Oxymorphone, Morphine, Oxycodone, and Hydromorphone, all of which made me very ill, with the exception of the last two, which made me feel feel "not quite right", but it was manageable.  It took the better part of 5 years to find a regimen that both worked, and that I was able to tolerate.  My new PM specialist (the one I have been referring to in my posts) has explained that he does not generally Rx Hydromorphone, so that has left us Oxycodone to try, and now (for the first time, for me) Duragesic.  To answer your question, since starting the Suboxone in March, I have only been on Oxycodone IR 5 mg. q.i.d., and that for approximately one week.  I knew that Duragesic is meant for those who have been on high-dose opiates for extended periods of time, and this is why I was concerned.  My Dr. agreed to switch me to a lower dosage only if I tried this over the weekend and it did not work out, and asked me to trust him.  I prefer to play it safe, however, which is why I have posted my question regarding safety.

Thank you for the extensive answer regarding the management of acute pain while on Suboxone; I have brought this question up in the past, with various members of my care team, and none seemed to know for sure what the proper way to deal with it was.  I was able to obtain, by my own search, the guidelines used for elective/emergent surgery, however I had thought that treatment of acute pain in a non-surgical setting (while on Suboxone) was still an unknown.  I appreciate the clarification.

If you do not mind me inquiring, how might I go about obtaining a second opinion without giving information regarding my first dx?  I think I understand the meaning behind your suggestion, however I have always been asked to provide a full hx, including dr's, rx's and dx, and have always done so without hesitation.  I fear that if I attempt to see another doctor, without full release of information, that it may not be received too well, if you catch my drift.  Please forgive me if I sound uptight, I do not mean to come off this way, especially as I would greatly appreciate a second opinion atm.  I am merely unsure how to go about doing so without raising suspicion, or making my new PM Dr. feel as though I do not trust him (which can be a bad thing in and of itself).  Again, it is not that I do not trust him, I am only wary of anything that seems a bit too extreme for my situation (such as the jump to Fentanyl at 50 mcg. dosages).

In answer to your question regarding NSAIDs/therapy, yes, I have been Rx'ed Ibuprofen (generic Motrin) 800 mg. t.i.d. for as long as I can remember, and for days where the pain has been too horrible, I am prescribed Ketorolac (generic Toradol) 10 mg. every 4-6 hrs as needed (although I usually do not take it more than every 8 hours).  Unfortunately Ketorolac is a very strong NSAID and is not recommended for usage for longer than a few days at a time, therefore I use it sparingly, and only on days where I am not taking Ibuprofen.  I have spent years in PT and massage, as well as having tried acupuncture, yoga, pilates, and traditional Chinese Medicine.  In the way I was raised, as well as within my own personal set of beliefs, strong medications such as opiates are not okay unless absolutely needed.  I will be trying the SpineMED decompression system as soon as my insurance gives the go-ahead.

Thank you once again for your extensive reply, as well as your time.  Also, a small thing, but worth noting: My name is Aisha; "Who is John Galt?" is a reference to one of the best books ever written, Atlas Shrugged (by Ayn Rand).  I suggest to everyone to take the time to read it (as well as The Fountainhead), especially with the way the world is today.  Most likely the kindest thing anyone ever did for me was point me to those books, and as such, it is the least I can do to point others to them as well.  For those who truly take the time to understand what is written therein (and those are few and far in-between), it will be an awakening.  For those who already understand, and grew up hearing that they were selfish and soulless, it is a reassurance.  It is pleasing to know that there is still some sense left in this crazy world of ours.

Have a splendid day,

Aisha

[edited for spelling and dosage correction]

I know that likely sounds corny to most people, but I'm a mother too (of four; my youngest just turned 5 and my oldest is 12), and although we often spend the weekend catching up on what was not completed during the week, I know that (for us, at any rate) Fridays are always like a breath of fresh air... no appts. (usually), no classes/school, no work, just our time to do what we want (even if it is catching up on things, at least it is by our choosing).  So... Happy Friday!

Thank you immensely for your reply, and for sharing your personal experiences.  In all honesty you are the first person I have heard from who had anything truly positive to say in regards to surgery.  I am unsure of the compression of my spine atm, but I know it is severe, and my PM Dr. is extremely concerned that I will not remain walking for long.  If I remember correctly it is the compression which has caused the loss in height as well.  At 18 years old I was measured at just over 5'3"; today I am 5'1" exactly.  The idea that I might lose the ability to walk scares the daylights out of me; not only do I have children, but I am one of those people who is not truly happy unless I am being productive at something, and although there are many people who cannot walk who are even more productive than I, I just cannot fathom what that would do to my spirit were I to lose the mobility I have left.

I had not considered consulting a Neurosurgeon; thank you for the suggestion.  I have, however, spoken to an Orthopedic surgeon (several years ago), and he was the first to recommend Laparoscopic Spinal Fusion to me.  I am extremely wary of fusion, due to the statistical reports of success (or lack thereof).

Did you lose much movement post-fusion?  What were the biggest changes you felt/noticed post-surgery (good, bad, strange, etc.)?  The one thing I know I must have done at a future date is the replacement of the disc which was herniated previously: L4-L5.  It is now deteriorated to the point of being useless (due to the fact that I, like you, dismissed the severity due to lack of symptoms so many years ago... it is a good thing I do not believe in regret, just learning from our mistakes, seeing as I think I have learned a bit more than I'd prefer with that one), and what little is left is almost completely out of it's proper place.  Due to my studies, and the necessary exposure to certain ailments/afflictions therein, not much makes me squeamish, however I cringed when I saw my most recent MRI film.  Spines are not supposed to look that way.

Thank you once more for your input.  I am extremely grateful for any and all information you are willing to share, and will take your advice in looking for a Neurosurgeon and Orthopedic surgeon, in order to gain their input as well.  I have a feeling that I know what they will say, but one can never be too careful when it comes to something so delicate as our spine.  On a hopeful note, I have high hopes for the SpineMED treatments; it is essentially a modern-day version of the rack, and it looks like it will at least feel wonderful, even if it doesn't help.  Gratitude for the little things is what keeps us going, right?

Although I am not religious in the way that many use the term (long explanation there, and I have rambled quite enough... If I continue writing such long posts I will single-handedly cause everyone who --like me-- experiences pain when sitting for too long to experience flares in their pain levels, and that would be bad), I am deeply grateful that you include me and my trials in your prayers, and I sincerely thank you.

Have a beautiful weekend,

Aisha

I apologise (to all) for my lack of replies; this week my children started school and I was providing care for a sick kitten, all while fighting off a nasty intestinal virus of my own.  Between all of that and my own appts, etc., I wasn't able to stay up late and write.  It's been a long week.  I'll try and reply to all posts, in order (starting here), as I feel the need to try and keep myself awake tonight (will post about that later, after I get caught up here a bit).  I know my return is late, but I feel bad for disappearing like that, so here we go...

In regards to the Suboxone resetting the receptors, I believe the Buprenorphine has something to do with it as well, as I have read that Subutex (which contains no Naloxone) has the same effect.  It has something to do with activity on the receptors, I believe, however I wouldn't quote that, as medicine is the expertise of physicians, not my own line of work/study.  It only took a short time visiting teaching hospitals in order to decide where to apply for residency for me to realise that dealing with patient care was not my calling; I applaud Doctors for their patience and level of "people skills".  I realised I am far more comfortable puzzling out health issues in a lab than in a personal setting, meaning no offense to anyone.  I would be most challenged in dealing with the snarky, skeptical patient whom gets irritable when in pain or while ill (like myself).

I think Buprenorphine is a fantastic medication for people experiencing mild to moderate pain (in my own experience it is useless for severe pain, and tends to cause horrible adverse affects at higher doses), and it is wonderful for lowering tolerance to pain medications.  I cannot imagine having been able to comfortably drop my dosage, as rapidly as I did, without the use of the Suboxone; the fact that my ending dosage this week (which was raised prior to starting treatment with Duragesic) was under 75 mg. of Oxycodone IR is nothing short of a medical miracle.  I cannot even remember the last time my tolerance was that low.  I know that, regardless of whether it was the Naloxone or the Buprenorphine in Suboxone, it helped me immensely to clear my head and drop me to a more manageable dosage.  And, in case any were wondering, most of my discomfort (mainly the buzzing/vibrating brain feeling) was completely gone by Thursday morning.

I would also be interested in finding out whether the Naloxone helps clear the receptors, as I know it has many applications in the use of psychotherapy, as well as immune system function.  I would not be surprised in the least if it assists in healing the effects of long-term opioid/opiate usage.

- Aisha

Thank you once again for the detailed information.  I have bookmarked the websites you suggested, and will be checking them out shortly.  Although I am feeling much better, I would like to look further into Buprenorphine, as I consider it an invaluable tool for continued pain management.  I imagine there will be a time when I will once again need to lower my tolerance, and I have found, from past experience, that switching to a different opioid analgesic can cause many various adverse effects which I did not experience while on the Suboxone.  It is unfortunate that many PMDs, at least here in the city I am currently residing in, still associate Buprenorphine with addiction only, when it seems that it would help other CP pts with balancing pain control with tolerance levels, in order to achieve better control of pain (and reduce the need for constant dosage increases of pain medications).

In answer to your suggestions, first and foremost, I was unable to obtain an appointment with a PMD (for a second opinion) this past week, as there was an extensive wait for all of the ones who are within a 45 minute drive (I am willing to drive further if the doctor/specialist is a regular part of my care team, but not when I do not know what to expect in regards to wait time, which can often be upwards to 2 hours; that would have left a narrow window in regards to appt. times while juggling my children's first week of school), so I did two things instead:

(1)  I spoke with my Oncologist, who said what I had expected him to say (that he is more comfortable with leaving PM recommendations to a PM specialist), however in his personal opinion, other than extreme drowsiness and perhaps nausea/vomiting, he saw no issue with starting at a 50 µg/h dosage.  He said that many of his pts are on much higher Duragesic dosages, and that I "ought to be just fine with it".  Although I would have preferred a stronger assurance than "ought to be", I am confident he would have told me if there were any alarm bells going off in his head for that dosage.

(2)  I consulted a close friend, who is now an ER physician, as he is familiar with not only my hx but also my varied responses to nearly every tx within the past 11 years.  He was hesitant to offer any direct professional advice, but he did offer some general information, as well as his personal opinion (one of those, "you need to speak to your doctor if you need actual medical advice, however if you were my wife..." conversations).  In summary, he stated that although 50 µg/h is in the "mid-low dosage range", he would personally feel uncomfortable starting a pt on that dosage unless he had tried either one of the Contins or a lower patch strength first.  He stated what my Oncologist said, almost verbatim, that I "should be just fine", but to have someone keep an eye on me for the first 24 hrs, just in case there are any adverse effects.  He was kind enough to offer this service himself, as a friend, as long as it was on one of his days off.  If I had thought to bring along my common sense I would have taken him up on it, but instead I declined, assuming my husband would stay up with me --as promised-- to make sure all was well (he fell asleep at 11:30 pm, which is why I am here now, rather than sleeping peacefully; I feel it is better to monitor myself than just fall asleep hoping for the best).

I felt, after both conversations, that I would be fine with the patch, so long as (a) I was attentive to signs of overdosage, and (b) I had someone with me who was making sure I did okay.  That is why I chose to place the patch for the first time today (which will soon be a separate topic, as soon as I am caught up here enough to alleviate my guilt at not responding sooner).

As for your suggestion regarding Tagamet, etc.; my PMD told me to discontinue Cimetidine (an H2-receptor antagonist), which I have been using for ~2 years, while starting on the Duragesic patch.  He did say that if I continue to have stomach pain, he will rx Protonix (a PPI), which I had success with several years ago.  I have been lucky in that I've only suffered one peptic ulcer in my life, and that was unrelated to my medications at the time.

Thank you for mentioning that Fentanyl is fat-soluble; I had read that in the information detailing clinical trials, but until reading your post I had not thought about how that may affect my response to it.  I currently weigh 114 lbs., and am 5'2"; I applied the patch yesterday morning, just beneath my rib cage, which is an area of my body with very little fat.  Do you think that will affect my overall response to it?  How does weight variation alter tx response in regards to the Fentanyl patch?

The procedure you mentioned sounds promising; I will ask about it at my next appt.  If you remember the name before then, please let me know.  I will also search it out (and ask around, as someone at UTMB has likely heard of it).  I am more than happy to cut down on the amount of invasive procedures I need to undergo.  If there is something new out there, please (anyone, not just Lung Dr.) let me know.  I am very familiar with the rigorous testing which needs to occur prior to testing on humans, therefore I have no issue with promising new procedures.  Pts who are willing to enter a clinical trial often have the first access to excellent medications/treatments that are not available to the general public for years afterward (one of which I was a part of three years ago, which helped me immensely, is still attempting to get FDA approval).

You are very welcome for the book recommendations.  Not everyone enjoys reading lengthy novels, but for those that do, the writings of Ayn Rand top the list of the greats, imo.  Atlas Shrugged appears daunting at first glance even to those of us who read for pleasure often, but it is worth every second spent reading it.

Thank you again for your advice, and your time in replying.  I understand it is not medical advice, and it may be off-the-top-of-your-head info (for you), but it helps me greatly to learn what others have picked up in the course of their education/experience.  I firmly believe that time is invaluable, therefore when others spend even a moment to lend a hand to someone they do not personally know (specifically, in this instance, myself), I am grateful.

Have a splendid weekend,

Aisha

Thank you for the information, as well as sharing your personal experience.  Unfortunately, when I was started on Avinza several years ago, I responded very badly to it.  Not a technical allergy, but horrible nausea and vomiting (I was unable to consume more than a couple of "instant breakfast" drinks and a couple bottles of Gatorade during the 12 days I was taking it, and what I did drink came right back up almost immediately) which promethazine (the anti-emetic I seem to respond best to, second only to Zofran) did not touch.  If you do not mind me asking, when you first started Avinza, did you have severe side effects?  If so, how long did it take for your body to adjust?  My PMD gave it almost two weeks, before deciding it was not worth the risk of malnourishment, however I have since read literature that suggests that my response was not uncommon, and that patients usually improve soon after the first week passes.  If that is true, although I seem to be okay so far with the Fentanyl patch, I would rather step down a bit until I absolutely have no other choice for the treatment of my pain (unless of course this significantly reduces my pain level, in which case I will continue until my PMD and I decide it is no longer beneficial).

I have gotten used to pushing through the pain, and collapsing at the end of the day (when I am able to give myself permission to curl up and cry; I hate doing that in front of my children, as they do not need to be overly aware that their mommy is suffering, ykwim?), and now that I have a better understanding of how potent Fentanyl is, I am having second thoughts about being on it for a long time.  One one hand, it would be wonderful to spend a day where my level of pain is at a 4 or a 5, instead of the usual 8-9 (even when I am unable to walk, I never allow myself to use a 10 on the 1-10 scale, as I have this unreasonable fear that the day I do I will be run over by a train or hit by a meteor or something, and find out what a 10 really is).  On the other hand, do I really want to be dependant upon something so strong?  Did you experience any of these hesitations when starting the Fentanyl patch?  If so, what was your deciding factor that it was worth it?  I am hoping that part of it is that sometime within the next 72 hours my pain will be reduced more than it has already; at the moment my lower back is not in a good state, but I am still hopeful.  The literature that comes in the box with the patches said it can take awhile for everything to level out, and for maximum efficacy to be reached.

I am currently at ~17.5 hours with the patch, having applied it yesterday morning at 11:58 am.  Thus far I am feeling rather dizzy, and a little achy, but not overly sleepy or nauseated.  The worst is the headache that set it around 7:00 pm.  I am not sure if it is due to the Fentanyl, or the fact that I haven't eaten much today (my level of nausea is tolerable, so long as I don't eat; I tried to snack on some pizza earlier and spent awhile feeling ill, so I have avoided that until my husband wakes up and I can take the anti-emetic prescribed by my PMD to keep on hand in case the nausea gets too bad, as I am assuming it will likely make me drowsy and I want to make sure I am tolerating the Fentanyl before falling asleep).

How long after placing the patch for the first time did it take for you to notice your reactions to it (good and bad)?  My PMD could not have been more vague when I asked (he told me that "every patient is different, so you might notice an effect at 8 hours, or at 36 hours", which I understand and know to be correct, as every person's system is different, but it wasn't exactly what I would call helpful), and I would greatly appreciate input from those who have tried it, especially --as in your case-- from anyone who realised the dosage was too high.

Thank you for the advice regarding the Mylan brand.  Unfortunately when I spoke with the pharmacist about the brand switch, he told me I needed to have the doctor specify on the rx, in order for them to order a brand that is different from what they usually carry (which is Watson, the kind I have on now).  I am considering speaking to my PMD tomorrow (I am very lucky that he is in the office both during evening hours, as well as on Saturdays) to see if a brand switch, or a topical skin medication, might be in order.  The patch is sticking well, except for a small area on the left side (which I have secured with first aid tape from our emergency supplies), but it itches horribly, and my skin beneath the patch is a very dark pink (I have not been scratching, although I want to so, so badly!!).  Also, the edges seem to dig into my skin when I sit back either on the porch swing or the recliner (the two most comfortable places for me to sleep).  I have to admit, although I know many people have had excellent results with the reservoir-type patch, seeing the gel beneath what amounts to a layer of plastic wrap just makes me nervous.  I try and remain active (I can no longer run, due to the issues with my spine, but I swim regularly, roller skate --not roller blade; I am no good with those-- several times per week, and I often ice skate with my children on weekends) and I am terrified that I will fall or lean the wrong way and the patch will be compromised (and my kids will be left without a mom).  Is the Mylan brand one of the ones without a reservoir?  That would make me feel much safer, to be honest.

I will try the Tegaderm; thank you!  That's brilliant.  I have used those in the course of my studies/research, and it never occured to me to use one for securing the patch.  That would be far more flexible, if not outright more comfortable, than the first aid tape.  I will try one tomorrow, if my PMD does not approve of a brand switch.  The thought of the patch falling off, with both children and pets in the house, scares the ykw out of me.

Thank you so much for your input and advice.  It is comforting to know that there are good people out there who have been where I am now, who are willing to share their trials and errors.  Although I have full and complete respect for the medical field, sometimes personal experience is far better at easing the mind and spirit of those who are just starting a new treatment.  Especially when the pt starting the new tx is as wary and cautious (and yes, sometimes just plain nervous) as I tend to be.

I hope your weekend is wonderful,

Aisha

for your concern, that means a lot to me, especially since I am sort of on my own here, being the only one awake in my house (other than my new kitten, who I am trying to keep away from my side; he loves climbing up things --including and especially people-- and I am scared he'll puncture the flimsy plastic covering of the patch).  I apologise for not seeing your message here sooner.  I've been alternating between responding here (which seems to take quite a bit longer than normal when the keys on the keyboard don't seem to stay in place for long.. LOL), reading, playing with my kitten, and trying to keep the room from spinning (that is an activity unto itself).

Let me think... I placed the patch at 11:58 am yesterday, and it is now just almost 7 am, so if I am calculating correctly (which I cannot claim to be when my head feels like it is full of fuzz) I believe I am on hour 19(?).  I am doing well overall, although my level of pain is oddly a bit higher than it was while on the Oxycodone IR, but in different areas of my body (which might have something to do with the Oxycodone leaving my system; the package insert stated that people switching off of other opioid medications may have some w/d effects for the first 24-48 hours, so I am thinking that perhaps it is helping my regular pain, since my back feels about normal, and definitely no worse than usual, but that maybe my level of pain is currently exacerbated by the w/d off of the Oxycodone IR, which I assume is what is causing the unusually painful achiness --especially in my knees, calves, elbows, neck and shoulders, which are areas I usually have no pain that is unrelated to physical exertion-- and occasional chills/goosebumps).

The dizziness is the worst, by far.  It comes and goes, or rather gets worse and then settles back at a general off-balance feeling.  When it gets bad I have to stand with my feet on the floor and my palms on the wall; that seems to help steady me, as strange as that probably sounds.  The nausea seems to only get bad if I eat, so I am not eating anything.  My doctor rx'ed Reglan 10 mg bid to keep on hand if the nausea gets to be overwhelming, or if I start vomiting.  I have never used it before, so I am waiting until my husband wakes up to start it, so I can eat something, just in case it makes me overly drowsy.  I am not comfortable going to sleep if there is nobody to check on me, seeing as I have no idea how long the Fentanyl will take to reach a peak level for me, and therefore I am scared I'll fall asleep and my breathing will be affected, and there will be nobody to notice and get help.  I'm starting to have a hard time staying awake now, but it seems like a good, honest exhaustion, mixed with the occasional, overwhelming floating-into-sleep feeling that I recognise as medication-induced.

The skin beneath the patch itches terribly... there are not words to describe this level of itchiness.  I have been bitten by some nasty insects during my travels, but this outdoes (by far!) any of the bites I have ever had.  Even though I have not been scratching, my skin looks pretty angry under the patch.  I'm curious if this is normal, maybe how many people seem to react to the nicotine patch, or if I ought to be concerned.  I would trade my spleen for the opportunity to scratch for just 10 seconds.

Thank you again for asking how I am doing.  I know you don't know me personally, and it is not a huge thing to ask someone how they are doing, but this last night/this morning has been difficult for me.  My husband had promised to keep an eye on me, so that I can rest if I get drowsy, without worrying about breathing issues or anything (I would love to just fall down and sleep for a bit, a nice, deep sleep, especially since I didn't sleep well at all on Thursday night, being nervous about starting the patch yesterday).  At 10:30 pm he started to drift off, and I kept having to wake him up and remind him that it was recommended to watch me for no less than 12 hours, to make sure there were no respiratory issues.  I finally gave up after an hour of that (him falling asleep, me waking him up and asking to please stay awake for a bit so I could finally get some rest, rinse and repeat), and he's been asleep since 11:30 pm.  I reached the 12 hr. mark just before midnight, but I didn't start to feel really dizzy until around 1:45 am., so I've been forcing myself to stay awake until I know for sure that I'll be okay, or until my husband wakes up and will make sure I'm alright, whichever comes first.

By the way, in regards to your freind who take sthe naloxone... If it is a higher dosage, that is common (from what my PMD told me, anyway) for treatment of opioid addiction.  It blocks anything they may try to take to get high.  My doctor said there are implants that release it, but I have never known anyone who has used those, or has ever even heard of it.  Perhaps it's a new treatment/device, and is undergoing a clinical trial atm.  I have no clue, but if it helps people to overcome addiction, it's a great option to have available.  Unfortunately, from what I have read in regards to the research that led up to discovery of LDN (and I am fairly certain that Naltrexone is the same in how it works at Naloxone), at higher dosages it can also lead to a suppressed immune system, as well as depression and suicidal thoughts in some people.  At lower doses (as in very low; 5 mg. and less) it actually heals the damage done to the brain from extensive, long-term opioid/opiate usage, as well as reverses caused by years of narcotic usage (it actually promotes the release of extra dopamine, eventually bringing the body's natural production to a normal, pre-opioid/opiate dependence level, in order to fix the deficiency).  I just realised I am rambling, and I probably just put you to sleep.  I apologise for that; I'd like to blame my head feeeling like it's stuffed with goose down pillows, but I can't... I just write too much on a regular basis.

Anyhoo, LDN is a fascinating topic, and worth a read for anyone who is currently, or has at any point, been on narcotic pain medicine to treat CP, and/or who has ever noticed that they get depressed or ill when they try and stop taking it.  You can read more here, if you're interested:  http://www.lowdosenaltrexone.org/ << this is the website that led me to research it for my own use, in place of chemotherapy/radiation therapy, however I need pain medicine in order to keep up with my children, but I fully intend to try it once I beat the cancer, get my back fixed, and am off of everything except an occasional Motrin.  =)

I hope you have a stellar weekend, and thank you again for checking on me,

Aisha

P.S.  Okay, now I'm tired.  I really, really want to sleep, but the dizziness is getting worse, and that worries me.  If anyone has any ideas of how to wake someone who sleeps like the dead, so that they'll actually stay awake, please let me know.  I've never had luck with that... unless he has to be at the office early, he'd sleep through a tornado (or at least a tornado siren, which has happened a few times).

P.P.S.  Wow... I just looked at the time, and it's almost 8:00 am (hour 20, I think).  Considering how long this took me to write, having started it around 6:45 am, I think I might be a tad more out of it than I had realised.  I don't like this feeling very much.  Please forgive any errors in this (or my previous, or my following) posts; I have a feeling that this is only to get worse before my head clears again.

Thank you for the kind reply, and please forgive the delay in my response.

I plan on seeing a Neurosurgeon, as well as asking my surgeon (who is a permanent part of my care team, and who has performed all of my cancer/tumor removal/reconstructive surgeries, including one in which he made a judgment call, and opened himself to the possibility of a malpractice suit, and yet was the best decision any of my doctors have ever made; I am alive today thanks to him) for a referral to a good Orthopaedic surgeon.  I do not want to go into this head first, with no idea of what I am getting myself into.  This is one of the reasons why I have been looking into LSI; they seem to know what they're doing, and many people have reported excellent results.  However, even though LSI looks promising, I insist on getting further opinions before going ahead with anything, no matter how much a "quick fix" might seem appealing to me atm.

Is the deterioration you suffered common after spinal fusion?  Is there any way to prevent it?  Or reverse it?

Thank you for the well-wishes regarding the SpineMED treatments.  I am still trying to get my insurance company (which is one of the larger ones, and therefore one would assume that they'd cover it) to agree to it, if only in hopes of keeping the costs of treatment down, but thus far they've been rather difficult.  My husband switched to our insurance coverage to a new plan with a new company, after many years of successful treatment coverage with UHC.  I am still adjusting to the way they do things now, while finding that they apparently take sadistic pleasure in denying treatment requests (and yet there is no lifetime limit of prescription coverage, but if I want to actually try and fix the problem...).  If they don't cover it, I'll likely go ahead and cover it out-of-pocket.  It looks too promising to pass up.

You're right about the Toradol, it's a life saver, and to be honest it has always worked far better (for me) than Motrin, or any other NSAID out there (it has also helped me far more than Morphine, which I am unable to tolerate).  There have been a few times I was in the hospital for procedures when I could not tolerate (or flat our refused, for various reasons) IV narcotics, and therefore I was given either IV or IM Toradol instead (depending upon the severity of my pain), and it has become my mainstay now when I have painful procedures and testing done.  The downside is that it builds up toxicity so quickly that usage of longer duration than 5 days seriously raises the risks of renal failure, bleeding in the stomach/intestines (and hematemesis), etc..  That is why I only take it very rarely, and only when nothing else seems to touch the pain.  That said, however, my doctors have always been more than willing to rx it for me, if it means decreased usage of narcotic pain medication, so you might want to ask your PMD for it, and mention to him how much it helped you in the past.  I think that they are happy to prescribe it, albeit cautiously (making sure you understand never to take it for longer than 5 days at a time, or at all if dehydrated or suffering from oliguria/anuria), because even though it has the pain-killing properties of an opioid analgesic, it's only a very strong NSAID.  I feel that definitely works in our favour, when we see PMDs who are used to only requests for increased narcotic dosages.  I imagine hearing a pt request a non-opioid medication is a welcome respite for a few of them (I know for a fact it was with a few who agreed with my previous PMD to treat me while traveling, in the past, but who had issues with opioid analgesics for CP).

I remember one specific PMD was against usage of narcotic medications in anyone except terminally ill pts, and he only agreed to treat me because he was friends with (and respected) my current (at that time) PMD, and was in an area where he was one of only two actual pain management specialists within a 2 hour drive in any direction.  Amazingly (to me), he had no idea what Toradol was, and when I requested a two-day rx for it, telling him it worked far better for me than Morphine, he gave me that look.  The one that says, "it figures I get stuck with the drug seeker".  He pulled up the info on his PDA and had an absolutely priceless look of surprise on his face, and asked me if I was aware that it was not a narcotic pain reliever.  I told him yes, and he seemed delighted.

Thank you again for your response, your advice, and your concern.  I hope your back improves soon, or at least does not get worse (gratitude for the little things always helps as well, right?).  You have the right attitude, imho, and I feel that knowing (and truly acknowledging) the beauty, love and joy inherent in living (not merely existing) is one of the best weapons we have against CP.  Keep looking for every little reason for joy in the everyday things, and keep hope that someday there will be a cure for our pain that does not cause further damage.  =)

I wish you the best, and I hope you have a beautiful weekend,

Aisha