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Pain Management wants to Disco Fioricet (all narcotics) Advice Needed

  • By Autumn Sparrow

    Hi

    I get basilar migraines and the only thing that helps is Fioricet. My Neuro stopes all triptans and ergots once I started having stroke like symptoms and the majority of attacks were basilar. My main triggers are barometric pressure changes and muscle spasms ( some say dystonia but there’s disagreement within my team.) The muscle spasms put me in constant pain ( currently on SDI) which were trying to manage with Baclofen, klonapin and limited amounts of Percocet for pain. I’ve tried every OTC (herbal and vitamins too) and Percocet with caffeine, Toradol nothing but the fioricet works and when that stops working I have to go for a shot of dilaudid and promethazine.

    Pain management wants me to discontinue all narcotics for my migraines, due to rebound issues (per Stanfords guidelines)..

    This is where I need help. I react badly to antisiezure meds and my current preventative is verapamil. Anyone have any suggestions I can bring to the table… Don’t see my Neuro for 2 weeks and she wants this to start asap (trying to break the current cycle with steroids).

    Any ideas would be appreciated.

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  • By Nancy Harris Bonk Moderator

    Hi Sparrow, FIORICET ANSWER

    Thank you for your comments and being part of the Migraine.com community. Let me see what information I can give you.

    Basilar type migraine is now called migraine with brain stem aura, you can read more information here; https://migraine.com/migraine-types/migraine-brainstem-aura/. As with most types of migraine, it’s important to understand what our triggers are. Have you been able to identify yours? If not, I would encourage you to keep a detailed migraine diary. This will let you find your triggers, and any patterns your attacks have. Here is information on trigger identification and management; https://migraine.com/blog/migraine-management-essential-trigger-management/ and https://migraine.com/blog/keeping-migraine-diary-basics/.

    You may have already read that opioid pain relievers are not the first, or preferred choice for treating migraine for a number of reasons. One of these reasons is taking opioids can change the way our brain responds to pain. Another is called medication overuse headache or moh. The goal of a good migraine management plan is to stop the migraine process, not mask pain. Medications that stop the migraine process include triptans and ergotamines. The thing is if we take pain relievers and/or migraine medications more than two to three days a week, whether they are over-the-counter or prescription, we run the very real risk of creating medication overuse headache or moh. Moh was formerly called rebound and can leave us in a vicious cycle of endless daily pain and make our attacks more difficult to treat. Moh is an awful conditions that happens when the brain actually changes in response to pain medications as well as other medications and we end up often even worse than when we started. I’ve been there having taken methadone for 3.5 years and then oxycontin for 2 years, and then again from drinking too much coffee. Here is more information on this; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.
    And an article on the risks of long term opioid use; https://migraine.com/blog/risks-of-long-term-opioid-treatment/.

    Try not to get discouraged, there are over 100 medications that can be used to treat migraine and if you add up all the combinations that number goes up dramatically. Let me share this information on migraine prevention medications; https://migraine.com/blog/migraine-management-essential-4-preventive-treatment/.

    I hope that help. After you’ve gone over this, let me know if you need more information.

    Nancy

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  • By Autumn Sparrow

    Hi Nancy,

    Thank you so much for your reply! I’ve been getting migraines for 23 years so I understand medication overuse headache. It’s been a concern that my neurologists and I both have had for a while.

    I religiously keep a migraine diary/ calendar and one for my dystonia as well. My triggers are barometric pressure changes (a trip to the south set off this last one) and cervical spasms from the dystonia.

    I loved triptans until about 3 years ago when I started having more stroke like symptoms and my team no longer felt comfortable issuing them. Unfortunately ergots make my headaches worse.

    Just to clarify the Percocet is for dystonia, a torn S1 and several herniated discs (It allows me to excercise, do housework without a steady stream of tears). I’m on a slew of meds that help me limit the Percocet. Pain management wanted me to alternate it with the fioricet but it doesn’t help even numb the pain.

    I’m 2 weeks out from being able to see my Neuro and the headache pain mgmt headache specialist (current pm dr doesn’t feel comfortable treating).

    I’m on the 4th day of steroids so I hope it finally breaks. Been in tears for days at this point. Emailed my Neuro last night about it also because I’ve read some less than promising reviews of the guy she wants me to see and am supposed to be back at work next month. Right now walking is an issue so I’m trying to prepare myself for letting go of that.

    I really appreciate your input and will read through everything later today.

    Again thank you

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  • By Nancy Harris Bonk Moderator

    Hi Sparrow,

    Thank you so much for responding. I’m so sorry you are in such pain. Seeing as the steroids don’t seem to be working, you may want to discuss an IV infusion with your doctor. In the past I have had magnesium sulfate in an IV form along with pain and anti nausea medications. Here is an article about infusions that may help; https://migraine.com/blog/alternatives-to-the-er/.

    I hope you feel better soon,
    Nancy

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  • By Autumn Sparrow

    I emailed him this morning and promised to call in the morning if it hasn’t gone down. I miss my meds like crazy. Thanks for the suggestion I was wondering if that might almost had my brother take me to ER today but don’t want to see that bill.

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  • By Autumn Sparrow

    Nancy,

    I’m tripping out a little as I realized 4 of my meds for dystonia are also on the preventative list, my official preventative is Verapamil. You’d think they’d do something in conjunction (Baclofen & klonapin help minimize the spasms in my neck- but all my jerks etc have been way up too). Again thanks for the info I really appreciate it.

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  • By Autumn Sparrow

    I called and left messages. I just am doing my breathing. He may be waiting to speak with my pain management dr. She only works Tues & Thursdays, I’ve almost gotten through 7 days sans meds so one more day won’t kill me, it’s just miserable

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  • By Autumn Sparrow

    Talked to the nurse all they will let me have is Toradol which in the past hasn’t touched them and I had an adverse reaction the last time it was given. Not sure why they are saying no on the magnesium. I may try the Toradol again as it helps my hip pain, but am a little scared.

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  • By Nancy Harris Bonk Moderator

    Hi Sparrow,

    Here is a list of medications that may be used for IV infusion to break a nasty cycle;

    magnesium sulfate
    dexamethasone, brand name Decadron
    valproate sodium, brand name Depacon
    droperidol, brand name Inapsine
    metochlopramide, brand name Reglan
    dihydroergotamine, brand name DHE45
    promethazine, brand name Phenergan
    lidocaine.

    Does the doctor understand how long you’ve been suffereing?
    propofol
    tramadol (brand name Ultram)
    levetiracetam (brand name Keppra)
    ketamine

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  • By Autumn Sparrow

    Unfortunately they both do. One of the reasons they put me back on disability was my migraines. I think my Neuro is peeved that she’s referred me to a headache specialist.

    Thanks for the list. I found some Indomethacin (used to take for milder headaches and had a bottle left over from ER that they gave me for my neck as it wasn’t responding to. I just took one to see if it makes a dent. I sent pain mgmt another email and let her know that I’m at breaking point &it at I’m not asking for narcotics just permission to go to ER with a possible suggestion.

    If I don’t hear back by this afternoon I’m going to have someone take me to ER. Spoke with a RN friend and she advised against trying the Toradol again (I could be developing an allergy to it or it may have been an inactive ingredient in the particular brand). I don’t think it’s worth the risk in a non ER setting.

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  • By Darwin's Knickers

    To weigh in, I have Basilar migraines too. It is a difficult razor’s edge taking opioids I’ll give you that. The neurologist had me try psychiatric medicine like propanarol, and another one I can’t remember. Both times I had an adverse reaction and tried to kill myself. Since I have stopped messing with my brain chemistry directly I have found a balance. I am aware of the push by “medical professionals via researchers” to allow pain to be present in order to stop taking opioids. It seems to me they have their heads in the clouds and think this severe pain is a joke.
    My migraines cause me to vomit and pass out (from the pain). Yes rebound headaches are an issue. In fact it took me a year orr so to be able to distinct rebound pain from migraine pain (when severity is equal of course). But I am an adult and working with my doctors I was able to find a balance. For instance yesterday I had a bad episode and took a dilaudid. Today I awoke with a minor headache that felt … well… dirty in a sense. I knew this was a rebound headache. There are two ways I can handle this. 1) I can see where the headache goes. or 2) If I take 1/4 of a 5mg hydrocodone I don’t feel loopy and the headache dissipates.
    Every month (no matter how sick I am) I have to get a physical prescription from my doctor. Then I have to personally take it to the pharmacy and waith while they look at me sideways as if I am robbing them. They ALWAYS make a point of telling me how “Controlled” my medicine is.(oddly 2mg of dilaudid and 5mg of hydrocodone is not that great of a medication) Then I have to go myself to pick it up and get the same looks and statement of how”controlled” my prescription is.
    If I live without pain medication I live in constant misery. I pass out about three times as much and I have severe to medium headaches as my baseline.
    I do take Verapimil and that has done wonders. But it is no substitute for main relieving medication.
    The nausea can’t be helped much. I take a suppository of promethazine when it comes on fast.
    I am rambling but I do want to express that I went through a phase of trying to ignore my pain and bow to the “medical experts” who research this on paper but leave little room for variance of patient needs. Suddenly there is a huge push to ignore pain and hippy skadippy through the worst possible chronic pain I can imagine.
    The thing is, PAIN CHANGES OUR BRAIN CHEMISTRY. Amongst other harsh affects pain strips our mayelin sheath which protects our pathways from over stimulation. Pain causes amnesia and has caused me to lose bits and pieces of my memory. Pain changes mood and makes life unbearable.
    This is unacceptable. I have tried other treatments and am open to any non-psychiatric medicine in the future. But without pain relief my life would be way more miserable.
    As it is my biggest fear is passing out and drowning in my own vomit. I have made friends with my pain medications and do not find myself medicating when unneeded.
    I love my moments of levity and do everything to make each day’s goal to be pain and medication free. I actually am able to do this fairly regularly. Maybe twice a week I am able to function like a normal person. I accept this is what it is for now. But I look forward to the day that I have no need for any of this.
    I have had a couple times when I go into the ER for pain management that they actually ignore me for an hour or more because their head is filled with addicts and medication seekers. It is funny because I don’t go to the hospital unless I am in real freaking need. But what am I to do. Just wait in massive pain vomiting and passing out for the ER doctor to decide that it is OK to medicate me.
    It would be nice if researchers at Stanford had to live in my shoes for a day. Just one day. But I digress.
    Basically pain meds = use responsibly. But taking away my medication in an attempt to wish away my pain is a special kind of negligent.

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  • By Autumn Sparrow

    i ended up going to ER Tuesday night, my last email to pain management stated that although my current medications weren’t completely killing the pain they at least allowed me to function. Without them I couldn’t walk (torn S1 which is why I take Percocet), combined with the migraine for the last 6 days I’d been bed bound doing breathing excercises to calm my CNS until I passed out (wrapped in coats and blankets shivering. I asked her what she thought was healthier.

    By Tuesday night I hadn’t heard a peep so my brother took me to ER. They tried non-narcotic breaks and the dr advised me to take th dilaudid despite pain management. At ER they felt it was a migraine not rebound after reviewing my headache app. Interestingly enough it tried to sneak back the next day took a fioricet and it killed it. I haven’t had a headache since.

    I came home to an email from pain management asking if I’d be okay with her referring me to a holistic chronic pain clinic. She specializes in ESIs I was sent to her last spring when they thought it was just my back… A year & 18 specialists later I received the dystonia diagnosis. She isn’t used to not being able to fix someone (essentially she’s short term pain mgmt). I checked the place out and it looks amazing. They specialize in neurological disorders. Infusion clinic, accupunture, yoga behavioral therapy, bio feedback and Rx management.

    My Neuro is happy and to be honest so am I. We’d been arguing about the pain meds being disco’d for a while. She’d lower my dose, pain levels wouldn’t be as controlled so she’d say they aren’t helping let’s cut back more. My Neuro and I both felt I was in more pain because of the scale back, he’s been getting pissed as she wasn’t writing his reccomended scripts. Tuesday we talk Botox and he can fix my regimen before I’m under contract again.

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  • By Autumn Sparrow

    Darwin’s Knickers you nailed it when you talked about loving those moments of levity. People don’t seem to grasp that we live for those moments. When I got the dystonia diagnosis a friend made a comment that I lucked out as they treat it with benzos. People who don’t need these meds to function don’t get that when you take them daily the brain fog isn’t fun. I dream of painkillers & anti spasticity meds that don’t get you high.

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