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Beyond help? What can I do now?

So, I have tried everything, and I mean everything, conventional migraine meds like Imitrex, treximet, maxalt and all the others; amitriptalyne and meds of that sort; non conventional meds like every narcotic; botox; Laser therapy; occipital blocks; dextrose & lidocaine injections; hormone replacements; others that I can’t remember at this moment. Currently, my dr switched me to Subutrex and the only sort of rescue med I have is a very short acting ketamine nasal spray. The thing is, my headaches have improved on the Subutrex but I am experiencing a ton of disturbing side effects. My mind feels like it’s running 500 miles an hour, constipation worse than ever, and the most severe abdominal pain I have ever had – so bad that it caused me to shake violently, sweat profusely, scream at times and have to spend the bulk of the day in the fetal position.
What do I do? Do I try to suffer through the side effects? Do I go back to a medication that hasn’t worked in the past? My dr wants to try an anti parasitic drug that she heard of through a seminar with a doctor who has treated patients like me who have not responded positively to anything else. The problem, it’s $4,000 per month and I don’t have full insurance coverage at the moment.
What would you do?
Please help with your input – I am beyond devastated and mentally in a compromised condition due to the sheer frustration. Thank you for every ounce of opinion/advice/input/suggestions. ..

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  • Anne
    4 years ago

    did you try Relpax? That’s the only medication that works for me. They have a medication discount card on their website as well, so I only have to pay $10 for the prescription. The other thing that helped lessen the severity for me is a restrictive diet – no gluten, dairy (except goat’s milk cheese), soy, nuts, artificial sweeteners, limited sugar, corn or eggs). It helps with the inflammation that makes the pain more severe. The other thing I’ve been trying are antihistamines (namely Claritin) that also help with the inflammation. I am so sorry – the pain of migraines is unbearable, even with medication that works.

  • Lifetime_Migraine_Sufferer
    4 years ago

    Reading your story sounds just like mine. I’ve tried EVERYTHING! and nothing worked. Including Subsys (Fentanyl) not Subutex. I believe Subutex is used for opioid dependence so I would probably skip that one. I’ts been 38 years of this horrific pain, lack of understanding by dr’s, and visits to a lot of migraine specialists/clinics. If your dr has been following the news lately AND you live in a medical marijuana state, ask him/her about CBD – these are the cannabinoids extracted for pain patients. It’s not the THC in marijuana – that’s generally associated with the “high”. I’m 53 and I smoke marijuana which sounds so silly but it works for me. Maybe it will be helpful to you. There’s a lot of trial and error involved. I use “dabbers delight” CBD oil. It’s the most concentrated form of CBD I can find but it does have some THC. I will pray that you find something. It’s time to end the suffering!!! Also, it’s a lot cheaper – a month costs me about $500 for the CBD oil.

  • Ampdesign
    4 years ago

    Given your insurance situation and the cost of the medication, have you asked if the drug maker has a compassionate program where you can get the medication at a reduced cost? At a cost of $4,000 p month, I’d do a ton of research before making the investment….. Knowing the efficacy, success rate, and length of time you would need to be on the prescription are all important factors. Also, is this a US only based drug? Is a generic available? Many people don’t realize they can purchase medications from Canadian pharmacies at a fraction of the cost. It is done by mail order and completely legal. I can get my $1,450 p mo meds for $186.

  • Katie M. Golden moderator
    4 years ago

    Purity Mason,
    You are indeed in a tough position. It’s not often that I come across someone who has been on ketamine and also on Subutex, but I can relate. I’m on ketamine and my doctor has recently talked to me about being on Suboxone (similar to Subutex), which I’m still contemplating.

    Since I’ve not tried Subutex, I don’t know about all the side effects. What you’re describing sounds really awful. What dose are you on? Are you taking a sublingual film that dissolves on your tongue? Apparently there are 2 doses, 2mg and 8 mg. Maybe there’s a potential you could use a lower dose? It wouldn’t hurt to ask your doctor. Or maybe switching to Suboxone would yield less side effects. Here’s an article about these 2 drugs.

    As for the new drug your doctor proposed, it’s a hard call, especially when it costs so much. I would do a lot of research before committing to this treatment. Have there been studies? Do you understand why it works? I’m sure your doctor has your best interest in mind, but I don’t want you to put too much hope on this seemingly experimental treatment. Only you can decide if spending the money is worth it for a new treatment.

    Keep us updated and best wishes!
    -Katie Moderator

  • aero1
    4 years ago

    I really feel for your situation. One thing you did not mention is medical marijuana (if you are in a state that it has been legalized). If you want to try, use only the indica variety or a hybrid, not sativa. I just tried it for the first time and it is helping for me where nothing else was working. Too soon to know for sure, but it is at least something with few side effects and none very bad. Good luck. Don’t give up.

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