Looking for Pain Specialist open to endorsing Pain Medication

LLordSparks on 10/08/2021 - 20:35
Last edited 10/08/2021 - 23:18

This might be a bit of a stretch but I haven't had much luck as is so I'm hoping I might at least get pointed in the right direction.

Backstory: I have a brain tumour. On my pituitary gland. It causes a condition called acromegaly and among other things gives me severe headaches. I've had one surgery and a course of radiation however the residual tumour is inoperable. Any attempts to remove it would likely damage my eyesight due to its proximity to my optic nerve.

Recently, as far as I can tell due to political pressure, my pain specialist has indicated his intent to take me off my current regimen of opioids to treat the pain. Thus far I've been willing to try the alternatives being put forward like clonidine, gabapentin and amitriptyline however these haven't proven effective even at high doses. They leave me in a state where it's difficult to work since they take away my brain's ability to process information in a way that the opioids don't.

All of this has me worried since the pain specialists I've seen thus far (1 public, 1 private) don't seem to care about the state this leaves me in. This runs the risk of putting my career and mental health in jeopardy due the strain it places on my social ties (people don't stick around if you don't engage). I understand that there may be long term consequences of extended opioid use but they don't worry me as much as the short term ones. What's the point in living to 60 if I have to spend 30 years in utter misery?

So my question is this. Does anyone have any leads on a pain specialist or GP specialising in pain that is more likely to let me make these decisions myself? Any recommendations would be appreciated. Even if people have suggestions for other places I might ask these same questions. If you've got direct experience with a pain specialist that went well, point me in their direction.

EDIT: I'm based in Melbourne though I'm operating on the theory that most practices can do remote sessions these days.

Health & Beauty

Comments

  • bmerigan on 10/08/2021 - 21:21
    +1

    Could ask your specialist about a Ketamine infusion. Wife has had some success.

  • Third_Gear on 10/08/2021 - 21:29
    +1

    Will send you a PM of a doctor who may be able to help.

    **. Turn on Private Messages.

    • LordSparks on 10/08/2021 - 21:52

      Done. Sorry, didn't realise it was something I needed to enable.

  • mskeggs on 10/08/2021 - 21:53
    +1

    Your post suggests you should be able to be a strong advocate for your treatment, so it is concerning that you are are feeling forced to change your most effective pain treatment.
    Have you point blank asked either doctor if they intend to withdraw your effective pain management for a less effective alternative, and what the clinical justification for this is? If they are trying to make a trade off between short term and long terms risks, getting them to confirm this, and loudly objecting and refusing the change is appropriate in this case.

    I think some of this is blowback from the opiates problems that were experienced in the USA, and factors about the American cultural experience that has worked its way into some international thinking about pain management. But that is not your problem, you just need effective treatment.
    I would urge you to persist with the specialists you have seen to date as a first avenue, if only because any new doctor will spend tedious amounts of time and effort ensuring you are legitimate in your needs.

    Unfortunately, you will need a doctor to agree with your position for continued medication, so I sympathise that you are in a difficult position, and wish you the best of luck sorting it.

    • LordSparks on 10/08/2021 - 21:55

      You pretty much hit the nail on the head there. Their intent is to take me off because of perceived long term complications and thus far I've been unable to convince him not to do so. The short term benefits outweigh the long term consequences as far as I'm concerned. Being able to function in the short term puts me in the better position in the long run.

      When you factor in that I'll likely need a 2nd course of radiation in the near future, there's limited point in taking me off since the radiation will almost certainly cause my headaches to spike.

    • lost in transit on 10/08/2021 - 22:27

      Hi mate
      What do you class as high quality and how many mg’s

    • lgacb08 on 10/08/2021 - 22:27
      +3

      if he's on opiod, your alternative treatment will definitely not work, and the pain is due to tumour causing activation of nerve signal in the head, it has nothing to do with inflamatory.

    • TimOfEastBNE on 10/08/2021 - 22:49

      "studies"? Care to link any?

    • freefall101 on 10/08/2021 - 22:56
      +7

      Studies have shown that every time someone says "studies have shown" without a source, it's usually a completely inconclusive result that's not repeatable.

      Source: The studies that I've been shown.

      • LordSparks on 10/08/2021 - 23:21
        +5

        Given they've just recommended vitamin C as a replacement for opiods, I'm inclined to agree -_-

    • payton on 11/08/2021 - 00:57

      Paging Dr Quack
      Dr Quaack?

  • lost in transit on 10/08/2021 - 22:23

    I’ve been on them for over 30 years through no fault of my own, never have i abused them and try and keep them to a minimum. I’ll always have pain and it’s a head game as to how much you tolerate before needing it especially if you have flair ups.
    I slept my 40’s away on Lyrica and what a terrible nerve medication that was, my life was a fog. Gaberpentan has turned my life around and clonidine has helped with nerve pain also without any side effects.

    We are all put in the one junkie basket by the Government like many other scenarios and its getting really hard to get them. Well you don’t want it to be easy but I’ve seen a couple of mates go through hell before they’ll help them.
    I’ve been going to my doc for nearly 40 years now so he knows me and my injury.

    Goodluck with your journey mate.

  • TimOfEastBNE on 10/08/2021 - 22:50
    +2

    Probably best to indicate rough location. I've got a pain specialist I see, but I might be in a different city to you

    • LordSparks on 10/08/2021 - 23:17

      Good point. I'm based in Melbourne though I'm banking on most practices being equipted for telehealth appointments so I may not be as limited as I might have been previously.

  • Strahany on 11/08/2021 - 12:33

    Was their desire to take you off of opioids an attempt to move away from medication management for pain, altogether? Or was it purely because of the nature of opioids? i.e are they trying to move away from medicine and address your pain through other facets such as psychological intervention?

    If they're trying to avoid medication altogether, then do not discount looking into these other avenues as (and I'm sure you're aware of this) pain is extremely complex and we lack a true understanding of it, still, to this day.

    If they're merely trying to take you away from opioid class medications, then I would strongly recommend considering alternatives. As has been mentioned before, Ketamine infusions are being increasingly investigates and you may be able to link in with a clinical trial to receive these intermittently (usually lasting some months). Alternatively, seeking medical cannabis might be a viable option, and has significantly lesser side effects than the medications listed. However, keep in mind that there is a risk to driving (whether that's an actual risk, such as unable to drive due to impairment in the hours after taking THC based medicine, or the unfortunate risk of getting swept up with false positives via contaminated "CBD only" medications or residual THC in your system from previous administration, long after impairment has ceased).

    • LordSparks on 11/08/2021 - 13:22

      Their desire is to move away from opioids. I'll bring up the ketamine option since a couple of people (including an ER doc) have recommended that now. He declined to offer me cannabis last time I asked since I had that idea as well. I was at least hoping to use that outside of working hours where I can compromise on high functions but he declined outright. I've been using the alternatives he likes and they do nothing but make me drowsy so I need to get a 2nd opinion and shift to a provider that's willing to work with me rather than against me.

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