Nothing is working

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Last I was here, a loooong time ago, I mentioned all the new things I’m trying, or would be trying. Well, nothing is working to get rid of this migraine. Some of the devices (Nerivio and Ceflay) help reduce it so I am somewhat able to do things on better days, but they never take it away.

I had my Vyepti infusion on the 26th, I should have seen progress within the first week, unfortunately there has been no change. I still have this migraine I’ve had for MONTHS now. Some days it’s a little better, many days I just want to rip my head off. The pain really gets to you, especially when it’s accompanied by other symptoms that aren’t so pleasant. The light sensitivity is especially hard for me, I feel like I’m living in the dark all the time, if I’m not in the dark I’m wishing I was. I live in the desert, it’s friggin’ bright here! And the heat! Last two months have been the hottest on record, thankfully it’s starting to cool down a bit, we’ve had some days that have been in the 80’s this week. Yay! I’m finding that bright light and heat are a trigger for me. Or maybe it’s just because I have a migraine that WILL NOT STOP!

So I wrote my neurologist (who is a headache specialist) and asked about two things. I wanted to know if I haven’t seen results from the Vyepti by now would it be worth trying the higher dose. I also asked about a new symptom (I’m having some weird headache pain when I turn over in bed at night my head will suddenly explode in severe pain. It feels a lot like when I was having Idiopatic Intracranial Hypertension, but I’m not getting symptoms when I’m horizontal or vertical. (normally when you have intracranial hypertension the pain is much worse when you are lying down and relieved when you sit up, if your cerebral spinal fluid is low then you have pain when you are up and not when you lie down). In closing I asked her if she had any recommendations.

I received an answer that was disturbing.

"1. so any new headache as you might imagine I cannot assess by email. I would need to see you in person to really thoroughly discuss and evaluate. We can set an appointment but I am taking off a week at the end of the month and have surgery so my schedule is a little bit messed up 2. We can certainly try the 300 mg however it is not covered by any insurance and statistically it was not that much better than 100 mg so unfortunately it would probably be a cash pay situation which I would not suggest. However overall I would have expected some benefit by now. 3. Next option would be to get another opinion unfortunately best next opinion in my opinion would be in San Diego"

My response to that, which I haven’t sent, is 1. I already have an appointment set up for October 7th, I doubt I can get in before then; even when she doesn’t have all these things it’s impossible to get in to see her in a timely manner. I sure hope this new headache isn’t anything serious. 2. Well no I don’t want to try the higher dose under those circumstances. and 3. Well it’s obvious I’m beyond her capabilities. I understand how frustrated she may be but, San Diego?!?! That is over 6 hours away from here! I do not understand why there isn’t anything at Mayo, it’s just a couple of hours from here. I am willing to go anywhere but not when my husband doesn’t have a job, and often insurance companies won’t pay for treatment out of state unless it’s an emergency. I tried to go to a doctor in San Diego before and my insurance would not approve it. Perhaps if my doctor here is sending me it would be different? Who knows, my insurance can take months to decide things anyway.

Stuart still doesn’t have employment. He did have a very encouraging interview, so we are hopeful, but who knows. It’s a big pay cut if he gets it, but it’s much better than nothing., and it’s easier to look for a job when you have one. We are doing okay financially, but going to San Diego right now isn’t possible, and when he gets a new job I can’t ask him to take time off to cart me to a different state for treatment. I’m hoping when he gets a new job that we have better insurance. The one we have now is a pain to deal with. It was much easier with Blue Cross. Not that any insurance company is great. I’m so grateful I have Medicare to supplement my private insurance.

I’m so discouraged. It seems like any treatment I’ve gotten for my pain hasn’t worked. My pain management doctor tried injections in my neck and it didn’t work. I can’t take most things they give people for pain. I can’t take opioids, they make me itch like crazy! I can’t take NSAIDS because they eat up my stomach. I started a new medication, Low Dose Naltrexon. With this medication I probably won’t see any effect for months. We’ll see, but after everything, I don’t have a lot of hope. (this is the same medication they use to help with opioid addiction, but at a much higher dose. You can read more about LDN on the LDN Research Trust site.

I realized the other day just how long I’ve been dealing with being sick. I’ve basically been sick most of my life, but things got much worse in 2001, that’s when the Meniere’s disease started getting worse and basically consumed my life. In 2008 I stated seeing new doctors at Duke and they told me I was disabled, from both the Meniere’s and my chronic migraines. It took me until 2015 to accept that and actually file for disability. I just realized though how many treatments I’ve tried to help me, and how long of a fight it has been. 19 years I’ve been dealing with being severely chronically ill. I’ve been ill for basically my whole life, but it wasn’t severe until 2001, it was at that time that I had to stop working full time, it wasn’t long after that that I had to quit working all together. I’m so extremely lucky that I was able to not work.

I’m still trying a few things, I’m seeing an allergist next week, maybe some of my migraines are coming from that. Stuart is going to call the doctor in San Diego and see if they have virtual visits, how the insurance works, how they treat intractable migraines, and if there is a patient portal or email so I can communicate with them directly. Then he is going to call Mayo with the same questions and see how different it is.

This is getting long and I feel like I’m just whining. I don’t mean to be. I realize that when you have a chronic illness you end up having to grieve over and over, every time there is a loss. Having my doctor tell me she can’t help is a huge thing I have to accept. I have to accept that no one may be able to help. Right now I’m just trying to survive with a status migraine (formerly called an intractable migraine) and increased Meniere’s attacks (a lot more vertigo, hearing changes, even with my cochlear implants, and the feeling of fullness in my ears.

One day at a time.

11 thoughts on “Nothing is working

  1. Wendy, I am sorry to hear it is not getting better, but I am glad that you open up about this. I think that writing it out is some kind of therapeutic. And I know that I want to know what is going on with you and Stuart. Evidently, my magic wand is not doing what I ask of it, but I will keep petitioning for blessings for you and Stuart. It doesn’t make sense that Mayo wouldn’t be just as if not more practical than San Diego. But, what do I know… I know that your best friend and love of your life will make sure answers get found with all this setting up and asking questions. Sending long distance hugs, but close to my heart.

    Liked by 2 people

    1. I always want to know what’s going on with you and yours too!
      Miss our messaging as often as we used to.
      Totally my fault, I’m sorry.
      Thank you for all the love, support, and special juju’s sent my way. ❤️

      Liked by 1 person

  2. No, you’re not whining. And, yes, grieving and accepting is a part of living with chronic illness/chronic pain. A sad truth.
    Perhaps Mayo or San Diego can do a virtual consultation (for the time being) until things get settled in terms of Stuart’s employment situation. Given COVID, I’ve been reading that insurance companies have been a bit more lenient with virtual consultations as long as the doctor(s) involved accept your insurance. Perhaps your doctor has a connection with San Diego and that’s why it’s the recommended place?
    I’m finishing week 8 of my LDN titration; 4 mg is now my daily dose. Next pain clinic appointment is October 6. Although the pain relief hasn’t kicked in yet, so far the the side effects have been manageable and are supposed to gradually lessen. LDN is a long hauler — it can take months before you can be sure if it’s a hit or miss. I’m hoping, for both of our sakes, it’s a hit!
    Good luck with your LDN protocol, the possibility of a Mayo and/or San Diego virtual consultation. Hope cooler weather is beneficial, and your Meniere’s kicks itself down several notches.
    Super gentle (((((((((((((((((((((((((((((((((({hugs}))))))))))))))))))))))))))))))))))))))).

    Liked by 1 person

    1. Fingers crossed for virtual appointments. There should be more of them to help ease the stress on people. I’m with Lorraine, you are definitely not whining. It is what you are experiencing right now. You so deserve some answers and treatments that work. We all want that for you so on the tough days I hope you feel the love and desires of us for good things for you.

      Tell Stuart good luck with the interviews. Fingers crossed on that front too.

      Lots of love and less stressful times for you guys. ❤❤❤

      Liked by 1 person

      1. Love you my friend.
        Thanks for the chat today.
        Made me feel more like me.
        We didn’t even talk about you!
        We must chat again soon, just not about politics. 🤣
        ❤️❤️❤️

        Like

  3. You’re not whining, love. You deserve to be heard and supported in your struggling. I can’t imagine having a migraine for MONTHS. I had one for 5 days after some dental work and it was godawful.
    I wish I could give you gentle huggles and show you how much I wish you weren’t suffering. I hope Mayo offers support (mostly because they’re not out of state!)
    Sending you love, and positive energy, and lots of good wishes for answers and treatments that WORK. Love you, sweets!!

    Liked by 1 person

  4. Oh Wendy, this is so disappointing to read. I’d been really hopeful with the new treatments that something was going to help. Hell, even just a little relief from the odd migraine would be good, wouldn’t it? I tried something recently that had horrible side-effects and didn’t touch the migraines, which are taking out 5 days of each week of my life, but I’m fortunate in that Sumatriptan works fairly well still (albeit limited on prescription so I can’t always take them when I need them). There’s got to be more answers out there. I hate that it’s ‘just one of those things’ and some people ‘unfortunately’ get them shitloads, like you. I’ll keep my fingers crossed for the allergist because you never know, maybe that’ll uncover something useful! Sending lots of love your way xxxxx

    Liked by 1 person

    1. Oh Caz, having a migraine 5 days a week is horrible. I understand it way too well, but I so hate it for you…us.
      Those dang side effects! Why??? It happens way too often.
      I’m glad Sumatriptans work for you, but you can only use them 2 days a week.We feel like the doctors are punishing us with that, but it can mess up your heart if taken too often.
      However, the new ditans don’t affect your heart. I wonder what kind of a limit they’ll put on those. Always siting medical overuse headaches….to that I say, my headaches can’t get more often, so screw that. If meds worked that is.
      You have so much going on, you sure don’t need migraines.
      I hope something can help, soon.
      Lots of love my dear. xoxo

      Liked by 1 person

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