Heed Warnings about LDN and Tramadol - they don't mix (long)

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RoseCrone
Regular Member


Date Joined Aug 2008
Total Posts : 71
   Posted 4/17/2009 9:53 PM (GMT -7)   
Hi all-
I am usually one of those people that research any new "protocol" my doc wants to try, but the past 2 weeks have been a disaster because I did not do my research and trust my instincts.
First, my Pdoc wanted me to try Cymbalta.  I do have major depression, and she thought trying to work on that would help my pain that has been increasing lately.  I have been taking St. John's wort which does help some.  Well, I told her I never could take SSRIs or SNRIs because I can't think with them.  Tried three diffferent ones about 5 years ago.  She said at least try Cymbalta, I said ok.  Forty dollars and 3 lost days later I gave up. Just can't deal with feeling like someone stole 3/4 of my brain.
Next bright idea she had was to try LDN (low dose naltrexone).  OK, this time I researched it and everything I saw said NOT to take with tramadol, which I have been on for about 3 years, recently up to 6 tabs a day.  I called the office while waiting for the mail order prescription to come in and asked what would happen if I took LDN since I am on tramadol.  I was told that the tramadol "might be less effective".  Since that was ok with me (if the LDN would work in the long run), I tried it.  Dumb me.  Followed the instructions, one at bedtime.  Woke up an hour later with my arms and legs flailing about uncontrollably.  Suddenly had to pee and had a fever, diarhea, started panting, trembling, yawning, and got pretty scared.  I almost called 911.  I was awake so I got back online and researched (as my hands kept trying to fly away like birds) and figured out I was going through LDN induced narcotic withdrawal!  So more research led me to take a Soma, a Lyrica, and an Ativan.  After a bit I tried going back to bed and "passed out".  When I woke in the AM my pillows were on the floor and the bed was a mess...I must have continued flailing about in my Soma induced sleep.
I called the doc next day and left a message, and was called later by the nurse who only said to increase the tramadol and leave the LDN alone. NO KIDDING!  Three days later I still feel the effects of that horrible night.  I have 2 massive cold sores, probably due to the fever and stress.
Lesson learned, don't ever take LDN if you are taking tramadol, it must be out of your system for quite some time, from what I have read, or you may have the reaction that I did.  I think docs are still fooled by the fact that tramadol is a synthetic narcotic with "opiod-like" properties.  I tell you, it is a narcotic, and the drug companies and docs are just trying  to keep it out of the narcotic category.  And they don't want to prescribe a true "narcotic" because they are addictive.  HA!  Try telling my body it was not addicted to tramadol when I took the LDN!  For those that don't know, Naltrexone at higher doses was used to treat narcotic addicts years ago.  It binds to the same mu opiod receptors that tramadol binds to, blocking the narcotic action.
Just had to vent, because it doesn't do much good to complain to the doc.  Oh I will, eventually, tell her in great detail what happened when I see her in a few weeks.
I guess I also wanted to warn anyone...pay attention to drug interactions, and trust your instinct!
Rose

Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 4/17/2009 10:32 PM (GMT -7)   
Rose,
Thank you for your valuable insight. Might I suggest that instead of searching on the internet the next time your doctor is offering a new med that you call your local pharmacist and get the real story on the drug. These people go to school for ages and ages and learn chemistry, pharmacology and medication effects on the anatomy. If you happen to stop in in person they are most always caring and considerate enough to share their knowledge.

My daughter was supposed to start a med when she was 18 to treat her Crohns. It has since been found to cause heart attacks, kidney failure and a bunch of other horror stories we don't want on her plate. Luckily we listened to the pharmacist when she said that the drug trials were not so hot and we should wait a year to see if it was gonna "kill" anyone. Glad we checked with her and dodged that bullet!
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/18/2009 12:24 AM (GMT -7)   
Wow, Next time you have a reaction like this go to the ER..You got very lucky this time
and I'm so very glad your still here to tell us about this, Hope your feeling better soon
I always do a double take on my meds, as I'm allergic to Erythromycin, I had an eye doctor
appointment, he said my eye's were very infected and prescibed an antibotic drop, which if
I had filled would've had me in the ER, as it was Erythromycin based, lucky I looked
this up on line before I filled it, and his nurse even told me as I was leaving that it was not
erythromycin related..Always and I mean always check out your meds interactons can occur...
lots and lots of soft hugz to you Rose...
((((((((((((Rose))))))))))))))))))))))))
and this allergy of mine is always listed in my charts for all my doctors........
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 4/18/2009 5:12 AM (GMT -7)   
Wow Rose!!!
Thanks for the heads up.
I'm soooooooooooo sorry you went through such a terrifying and painful experience.
I take tramadol ... so I'll be doing some reseach as well.
Hope you're feeling better soon,
Take care and soft gentle hugs...
Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety Disorder, Dyslexia, 2 Lumbar Disk Herniations, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Tramadol, Xanax, Lipitor
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


vestabula
Veteran Member


Date Joined Nov 2008
Total Posts : 2855
   Posted 4/18/2009 6:16 AM (GMT -7)   

Hi Rose...so sorry about your reaction.  I know how scary it is because I have so many allergies to drugs, especially pain killers.  My Lexapro bottle gives the usual warnings...along with the 'do not eat grapefruit while on this medication.'  It did not say they you should not take ANY NSAID's as it may cause stomach and intestinal bleeding.  Advil is the only drug I can take for fibro pain and I take it every four hours.  So you can only imagine the surprise when I looked in the toilet one day.....not to be disgusting but I panicked.  Then I called the pharmacist and he told me about the interaction.  I have learned that I have to do my own research on any drug I am prescribed because I don't think doctors are aware.  When my rhuemy asked me if I was on any other presrecription drugs I sais 'no' because that was the truth.  It never even occurred to me to mention the Advil.

They gave my mother Zoloft when she was in the hospital dying to 'calm her down' and she spent her remaining four days flailing around the bed...couldn't even hold a cup to take her other pills.  I kept telling the doc it was the 'Zoloft' as the same flailing happened when my brother took this drug.  He looked at me as though I was nuts and told me it was from her 'muscles dying.'  No...it was the Zoloft because it happened after her first pill.

Everyone should do their own research before taking any drug.  The most seemingly benign OTC pain killer can literally be that...a killer.

I hope you are feeling better by now, and so sorry for what you went through.  So many times, Less is more!

huggies

Donna


fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 4/18/2009 6:44 AM (GMT -7)   
And people wonder why I have a med phobia!!!! smhair I'm glad your okay Rose. I agree about checking with a pharmacist before taking a new med. My problem is we get most of our meds on an army base and we don't really have a pharmacist there but we do get a few at Walgreens and they are always helpful if we have questions.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


tyno3
Veteran Member


Date Joined May 2008
Total Posts : 1081
   Posted 4/18/2009 6:44 AM (GMT -7)   
Sounds like a lawsuit to me. I know about narcone, or whatever it was called b/c I had a former friend take some kind of IV narcotic, and then medics arrived and gave him the other, anti-narcotic drug, and he called me at home in the middle of the night Mad as He--. He said they held him down and forced it into him against his will and he was sick and mad (and disappointed). Any street junkie could have explained that one to you. Docs should have to do a spell in a Community Free Clinic, before graduating, they'd learn a lot.
Hypothyroidism, Fibromyalgia, Facet Joint Syndrome, High Blood Pressure, menopause, Migraines, Chest Pain, Anxiety and Depression/BiPolar II
Synthyroid .075mg., estradiol.5 mgs., Amyltriptilene, 100mgs, bedtime, Tylenol 3 PRN (six-eight, daily), Valium 7.5mgs. daily prn. Flexeril, prn (not so helpful), Zoloft,150mgs., Zomig approx. 12 per month, prn., Meds for High Blood Pressure, vary.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 4/18/2009 8:23 AM (GMT -7)   

I always talk to my doctor AND pharmacist to be sure.  I also let my doctor know everything I'm taking, including over the counter things and any herbs and supplements.  Make sure your doctor knows you are taking St. John's Wort.  That can cause a lot of problems, too, if mixed with other medications.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 4/18/2009 7:44 PM (GMT -7)   
Pharmacists are a great resource and I suggest everyone find a good one and build up a relationship.

Once, I was refilling a prescription that my doc insisted I stay on for 6 months. I knew it was making me edgy, restless, and argumentative but I couldn't see how bad I was. He noticed me snapping at a woman in line and made a point of talking to me and asking questions. He insisted that I talk to my doctor immediately (before I paid for the refill!) to see if I should continue the med. The doc was an idiot, I decided to stop the med and within 24 hours, everyone came out of hiding. I really believe that if I had continued the med, I would have assaulted someone and ended up in jail.

I fear that insurance companies will eventually try to replace pharmacists with computers and pill counters.

RoseCrone
Regular Member


Date Joined Aug 2008
Total Posts : 71
   Posted 4/18/2009 8:20 PM (GMT -7)   
Thanks for everyone's concern and suggestions. One of the problems with talking to my pharmacist is that LDN is compounded by a special pharmacy, so I doubt my regular Rite Aid pharmacist(s) there would know much other than what the original high dose naltrexone does, although they might. I will remember to check in the future though. I am feeling better now, finally. And yes, I probably should have dialed 911, however my mental state was not real clear while I was going through this and when I thought about dialing 911 I was more worried about was who would take care of my dogs!! In my panic I just wanted to stop the madness I was going through on my own. Luckily Lyrica was designed for restless legs and the Soma and Ativan did the trick in calming me down. I did not worry much about any reactions with these other meds and the LDN. Did I mention that while this was happening I walked right into a wall thinking a door was there?
Like I said, lesson learned, and I will be much more careful in the future and will let my doc know that I could file a lawsuit...however this medical group is normally one of the best in the area for managing pain as well as chemical senstivities (ironic, huh?). I feel like I would be back to square one finding another doc, it took 2 years to find these folks that actually "believed in" fibromyalgia.
Big hugs back to everyone who wrote!
((((((((((((((everyone!))))))))))))))
Rose
BTW Sherrine, when the Cymbalta was prescribed I was told to stop the St. John's Wort. I had just had an appt where we went over all medications and supplements, and I don't take anything more than what the doc recommends (which is a lot). I started SJW again after the failed attempt with Cymbalta. Another supplement I was told to try was 5-HTP (not while taking Cymbalta). I got a whole book on that one! The dangers of seratonin syndrome (too much seratonin) have me very cautious, as it is not unlike the LDN induced tramadol "withdrawal".
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