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Looking for a buddy

nicky44nnicky44 Posts: 6
edited 12/12/2014 - 7:29 PM in New Member Introductions
Greetings Earthlings,
I am a returning member not really a newie. I can't remember my old account details it has been so long. Anyhoo I am looking for anyone in a similar position for chat coz I am quietly going nuts here in the middle of the night. To make it simple I will explain my position in a series of bullets...........
I am 47, female and in the uk
I had a spinal fusion when I was 17 for congenital spondylolisthesis ( spelling?) which was generally pretty successful. Some nerve pain sciatica and lower back pain but I had a pretty good life. Took codeine for pain but didn't need to visit docs much.
Migraine on and off over the years but again not worthy of the doc.
Wasn't meant to have kids but hey stuff happens....................................
Enter my daughter when I was 23. Easy but exceptionally painful birth. Thought it was normal coz I had never done it before!
Life carried on and when I was 40 I had what I will describe as a relapse for simplicities sake.
Lots of MRI CT DEXA scans x rays physio acupuncture councelling blah blah
Turns out I am osteoparotic, and have spondyloptosis, I probably broke my back having my daughter and had broken it again! Nerve pain sciatica all the usual.
Neuro wouldn't/ couldn't work on it sent me to a pain clinic and said have a nice day!
Pain guy did injections and prescribed oxycontin, celebrex and amytriptoline and things for gastric probs constipation and calcium for osteoporosis
Trickled along nicely for a few years. .........
Got breakthrough pain and doc gave me cocodamol for the gaps............all good
Migraine got a bit worse but on the whole I could live with it doc gave me immigran up the nose thingys which sometimes helped
Enter more migraine which has got steadily worse to the point where I can have 2 a week back to back!!!!!
So in my wisdom after the mother of all migraines on dec 1st I stopped my meds because I need to know if they are responsible and I cannot have another one like that. All of them cold turkey!!!!!Doc has no idea until I see him on Monday. DO NOT TRY THIS AT HOME KIDS!
So as I am sure you are all aware I am not only doing withdrawal big time. I have developed all my old symptoms and a few surprising new ones. I have always been warned about cauda equina and I fear that is developing and has been masked by the drugs. Which is why I am going to see the doc.

So after all of that boring stuff is there anyone out there who has developed the migraines? Got any or all of the other probs or is going through withdrawal and wants a pen pall to help them through the wee small hours coz I am going nuts here on my own. xxx


  • LizLiz Posts: 7,832
    edited 12/12/2014 - 7:32 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • It's never recommended to abruptly stop medications without discussing it with your Dr. Did you at least research each medication and the possible complications from doing that? If you've been on them for a long time they should be slowly weaned to avoid the withdrawal symptoms. You also want to be careful because unmanaged pain can cause other medical problems. You're putting a lot of stress on your body so I do worry about its possible affects. If anything I would have called and informed your Dr immediately.
    Have the Migraines lessened or stopped since going off your medications? Migraines can actually be a symptom of withdrawal. What symptoms are you having that leads you to believe you have Cauda Equina Symdrome? Have you had loss of bowel or bladder control? Do you have a lot of numbness? Have you lost any motor function of your legs? When was your last MRI? I really hope you haven't caused yourself more problems by stopping all of those medications at the same time. That can be very dangerous depending on what you're taking, and again, putting your body through all that stress. Unmanaged pain alone has caused me other medical problems so that's another reason I'm concerned.
    I just hope you're doing okay considering. Have the withdrawal symptoms lessened yet? I went through withdrawal once back in 2002 after my first surgery. I was on Vicodin for over a year and they sent me home with darvocet. I don't even know if that medication is used anymore. I had insomnia, bad sweats, dizziness and nausea as far as I can remember, but the symptoms improved after about a week.
    The other issue with stopping all of them at once, is you won't know which one, if any, were causing the Migraines.
    How are you feeling currently?
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • LC84LLC84 Posts: 599
    edited 12/13/2014 - 3:30 AM
    The other issue with stopping them all at once, is that you won't know which medication, if any, was causing the Migraines.

    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Hi. Thanks for the reply. Wow what a lot of questions. Lol. Dont know where to start. I know i should not have gone cold turkey however i have been suspecting the meds for the cause of the migraine or specifically the opiates for a long time. Honestly i have tried everything else i have lost 4 stone. Dont drink. Stopped smoking. Keep food journals. No prob with hormones. Pain/ migraine diary. No caffiene. No artificial sweeteners blah blah. Anyhoo as yet every classic withdrawal symptom but no migraine or even headache . The last migraine was so bad i couldnt actually take and keep anything in for 2 days. By which time i was already in withdrawal so i just thought stuff it lets see where this goes. Re cauda equina in answer yes to all those questions. Last mri about 6 years ago. Some of the numbness motor function is there anyway because L5 is inside my pelvis. Withdrawal is improving slowly. The fatigue and restless legs is the worst. I would also never recommend this course of action but in some respects it was not actually deliberate . Going to docs on monday. I have no doubt he will have same opinions as you and i prepare for a good telling off.
  • I've suffered them seriously in my life. I know why you just quit cold turkey. I'd never want another one either.
    Get your doc to look at your hormone balance after you work out your pain and other symptoms first.
  • I will ask about hormones on monday. Thanks. Whilst I am feeling pretty rough I am so happy I havent had one yet! I just hope I dont get one. I will be gutted if I have done this for no reason!
  • I'm sorry for so many questions. I wasn't trying to judge you, I was truly concerned for your well being. If you have all those symptoms I mentioned that's usually an emergency situation. Cauda Equina is very serious and can cause permanent damage if not treated immediately. This is the last question I will ask. Does your Dr know about your symptoms I listed?

    I really do wish you the best and I was only trying to help.
    Progressive DDD
    Chronic S1 Radiculopathy
    Discectomy L5-S1 2002
    Discectomy, Laminotomy/Foraminotomy L3-S1 January 2014
    Bilateral SI Joint Fusion and 2 level spinal Fusion October 2014
  • Dont be sorry for questions!!!I was just abit overwhelmed by the number of them in your post. I wanted to share and I am worried about the cauda equina particularly myself. It has always been possible due to the nature of my condition. However I am not entirely sure what they can do in so far as last time it slipped/ broke the neuro wouldnt touch it! Also whilst the symptoms fit they are intermittent and I do not want to over react. Mondays app with doc was the first one i could get so no he doesnt know yet. We will see then. X
  • dilaurodilauro ConnecticutPosts: 9,832
    stop medications Unless you have been told to do so by your doctor and are using an approved plan on how to accomplish this.

    There is no question about the negative side effects in going cold turkey. Many similar to those that have done that with cigarette smoking. But the one bigger factor here is the potential for lethal effects.

    You never know how strong your heart is, that if your blood pressure is fine, but stopping your medications , cold turkey, could cause tragic results.

    Its encouraging that anyone wants to stop their medications, especially pain narcotics, but it think a approved plan would be much better, than for your family to know you passed away because of going cold turkey.

    Just think about... PLEASE
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • I agree entirely and as I have said initially it was not intentional. It is horrible, painful and distressing especially when the addiction is not from drug seeking. Do not do this people. I am sorry if I have given the impression that any of this was done lightly and without any thought! For me too late and I just wanted some company or someone who has been there to compare notes. x
  • Hi. If anyone is listening. I went to docs on monday to report in. He was very supportive. Having come this far. Still no migraine! yeah. We have decided to see the month out with no meds. He did say there were easier ways of getting through the withdrawal but it is done now and he understood the logic. If no migraine inside the month he feels we should be adding the meds back in one at a time to test the effects. Which seems sensible. Anyhoo my pharmacy is very helpful and obviously is well in touch with my situation and they suggested asking doc for lyreca? Spelling or gabapentin for my nerve pain which i am just putting up with for now to test the headache theory. Does anyone who suffers migraine have any feedback for me? Thanks
  • Well done for stopping the drugs though they do warn never to do that!! I was on Fentanyl 50mg patches at one point went straight down to 25mg and then another two weeks later stopped them. I had heard really bad things about Fentanyl and that it was so addictive that it was hard to come off it. The withdrawals were the worst I felt like I was dying! I suppose it depends on your dosage but I wouldn't recommend it to anyone!
    Having stopped them I found I couldn't move and the pain was horrendous but was then put on oxy.
    How are you feeling now? Have the withdrawal symptoms stopped?
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