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Fumbling Around in the Dark

Fumbling Around in the Dark

On November 20, lying in bed on a dreary day with a migraine no medicine had yet vanquished, I sent a text to John, which is often our primary means of communication. In this case he was downstairs with the kids, and I was trying to move my body as little as possible. “This is the time of the month I have been needing to go to the ER,” I typed. “Last time was Oct 20 and the time before Sept 20.” The nurse practitioner had remarked upon it, noting my absence of a menstrual cycle, and I had mentioned the full moon.

But when my phone soon gently vibrated the response was “You did just go to the ER around a week ago though.” I felt the unpleasant and unfortunately familiar shock of a huge memory lapse like a lightning bolt.

I did?” I could feel my heart rate increasing. “Are you sure?”

No matter the reason, it is a terrifying feeling to realize you have completely forgotten an event, a chunk of time, or a task you promised to do. And there is quite a difference between losing some details and what feels very nearly like a complete blackout, especially when it is something as major as a recent ER visit. John replied that he was sure, and despite the undulating spots in my field of vision I scrolled back through all of my texts searching for evidence. His statement did ring true, and I knew the current pain I was in was part of my lack of acuity, but it was very disconcerting. I finally found a series of texts I’d exchanged with a friend on the 14th, asking her to pick me up to take me to the hospital because John wouldn’t be home from campus for hours. And my mom confirmed she’d come to get me there when I was ready to come home. With those prompts other details came back, particularly that I had requested and received a rare second dose of narcotic pain medication, which undoubtedly helped contribute to the memory loss.


Text messages are not only a convenient means of communication, but a great way to retrieve lost moments.

November was a bad month. The results of the presidential election hit me hard, and I suffered as much from depression as I did from migraines. I spent many days huddled in bed, cradled by clouds of blankets protecting me from the outside world. Because of the subsequent increase in medication, a myriad of forces contributed to the empty spaces in my recall.

Memory loss, both short and long term, are reported anecdotally from many with chronic illness. From what I can determine, the actual cause is mysterious and varies person to person, episode to episode. During my worst bout of serious memory issues, in 2014, I had posted a question about it in one of my Facebook support groups, asking to hear from those who had similar experiences, and it was my most commented-on post ever. Most who responded were those who, like me, had been suffering their whole lives. Most were chronic. We wondered whether it was our medications, either prophylactic or acute, causing the gaps. We wondered whether months and years of pain caused our brains to compensate and cover much of that time with blissful nothingness as a form of protection, similar to repressed traumatic experiences. Our most serious worry was that the newly-reported white brain lesions found in the MRIs of those with long term migraine disease were actually causing damage. We wondered whether it would only continue to get worse.

That was the year that John and I took our trip to San Francisco, and upon landing I began to experience an extremely severe migraine that I treated with more medication than I care to remember, not that I really can anyway, because I lost literally half of our time there. We were crashing at a friend’s in the Lower Haight, but because he had little space and a roommate the lack of privacy had become intolerable to me. We’d charged a room at a Days Inn near the ocean and took a cab to get there rather than public transportation because I was in such bad shape. I remember absolutely none of that, did not even remember just three days later. John told me the cab driver assumed I was drunk and glared at John accusingly in the rearview as I slumped over in my seat and moaned. He said that once in the hotel room I cried and sobbed to immediately return home. Fortunately, I did recover and was able to enjoy walking on the Pacific sand and gazing up into the leafy towers of Redwoods, but that loss of time was horrifying to me and I hoped to never have another experience like it.

I researched as much as I could. My headache specialist refused to do an MRI specifically for the purpose of looking for white lesions, and said even if they were there they would not cause memory loss. I focused on one of my daily medications, which I took for depression, lured by the commercial stating “Depression hurts. Cymbalta can help.” SNRIs seemed to have some good results helping chronic pain patients, so I had asked for a prescription, and examining the years since I had switched from Zoloft to Cymbalta it became clear my migraines and my depression had become worse, and I’d began to suffer memory loss, which had the effect of causing me to not even realize how much more I was suffering.

It took me over a year to taper off of Cymbalta. Some patients have an extremely difficult time ending their use of that medication because of discontinuation syndrome, which was under-reported by the FDA. I do know a couple of people personally who are greatly assisted by Cymbalta, and of course there are those who have horrible side effects from my preferred depression medication, Zoloft; side effects and success rates vary so greatly person to person. I also don’t know for sure that Cymbalta was causing the memory loss. It may have contributed, or had nothing to do with it at all. And that not knowing is such a familiar feeling to anyone with chronic illness, as so much of what we do is fumbling around in the dark, doing our own research, following our own instincts.

So I did find it shocking to experience significant memory loss again recently when it was a problem I thought I’d conquered. I expect to always have some memory issues, but not the type to cause the loss of an entire ER visit. And here, today, I don’t have any answers. I suspect it is the increased pain and depression of the last month, but I don’t know. I can only hope this has been an anomaly, and is not, once again, my new “normal”.

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Comments

  • ccf23
    2 years ago

    Elizabeth I am always excited to see your name as a contibutor. I so relate to your experiences. I am perimenopausal too and have found my memory getting worse and worse. I too suspect the medications as a day after alot of meds I can barely function and am too scared to drive after I drove up on a median strip in a parking lot! But I wonder about the toll this neurological disease migraine takes on our poor brains. And as soon as I think the words neurological disease it becomes a little more ckear to me what the scope of the problem is. Sigh. Hoping for menopause I guess – or a new med. Keeping calm and carrying on for now in year 5 of chronic intractable migraine.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hello! Thank you so much for your compliment about enjoying my contributions here. I still feel new to the community, so I always love to hear that! I’m sorry about your suffering and memory loss. It never fails to interest me that SO MANY of us have this issue and yet they don’t know why. Take care of yourself, we’re glad you’re here! <3

  • aks868
    2 years ago

    I forget little things: a conversation I have had with my husband; or thinking I told someone something and finding out I have not; words; names. All those little things make me stressed out that I have early dementia, especially since I have been taking benzos for both migraines and anxiety for years, but am having a hard time getting off of them. My mother says its part of being perimenopausal and that my memory will get better once I am done; and my doctors say my migraines will get better once I am done too, but no one wants to take out my ovaries. Instead, it’s try this medicine for 3 months and then if it doesn’t work try another. Whatever the reason, I am glad (but not really glad because I wish you all didn’t suffer) that I am not alone.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hello! I understand so much how you feel. I had a wonderful doctor who decided that I was a good candidate for a full hysterectomy because I had to be hospitalized every time I ovulated or menstruated. I did improve some, but was still chronic. I use a low dose estrogen patch. I totally understand about benzos too. They are so useful to us in our situation, but yet may contribute to the memory issues among other things.

    We’re glad you’re here. <3

  • mrst53
    2 years ago

    I don’t know that I haven’t forgotten blocks of time, but I tend to forget things period. I don’t know if it is the meds, the migraines, age(63) or early Alz, as my Mom had it. I forget how to spell words (like whether there are 2 ee or ea or if if a word ends in el or al. I used to be a great speller. I do crosswords of course I notice it more and it drives me crazy. The day after I migraine, I am lucky to spell CAT 🙂 it makes me furious and I don’t know what to do about it. I want a knew head! These past 3 weeks have been miserable. I live on the east coast and instead of getting snow like a normal winter, it rains one day and then it is pretty the next. I get weather headaches mostly, so when the barometer changes, so does my head. I have lived in the bed for most of the last month, so most of the last month has been a blur. I know I didn’t much done and what I did, I don’t remember. My neuro says there is a new med coming out next year. Europe already has it, but the powers that be has said the US needs more testing.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi mrst53! First of all I”m sorry it’s taken me so long to reply to you. I also get weather headaches; whenever the barometer drops. I’m wondering if the medication your neuro was talking about could be the CGRP antagonists? The first one is due to be released in 2018. Here’s hoping it helps us as much as we hope it will. My clinical trials with it went really well. Good luck!
    All the best,
    elizabeth

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hey guys! The new med doesn’t have an official name yet in the US and there are many drug companies testing it in clinical trials. I was involved in one for Amgen, and am now in another. I will post some links here to articles about it. There is much reason to hope. There are no side effects, and results are looking very, very positive. The drugs all affect something in the brain called calcitonin gene related peptide, so we refer to them as CGRP drugs.

    Here is an explanation of what CGRP antagonists do:
    https://migraine.com/blog/cgrp-antagonists-are-the-new-triptans/
    Here is the article Kerrie Smyres wrote about my experience in the studies, before I was a writer for the site myself:
    https://migraine.com/living-migraine/cgrp-drugs-studies-a-patients-experience/
    Here is one of my stories about a clinical visit for the current study:https://migraine.com/living-migraine/cgrp-treatment-5/

  • sunshy
    2 years ago

    Hi mrst53,

    I’m in Europe and would love to know the name of the new med if you know it. Perhaps I could try it and let you all know if/how it works.

  • Tamara
    2 years ago

    Ooooo and I forgot to add (seeee memory loss at work) – I can’t learn songs anymore. I can still sing along perfectly to the old ones I learned more than a year and a half ago but no matter how many times I try with the new ones they just don’t stick.

    Church though when I have the words I’m not affected.

  • Kate
    2 years ago

    I too have memory loss issues. It has been the entire time since my NDPH headache started (11 years ago), so definitely not due to any medication (besides during my brief stint on Topamax). It has got worse over the years too. No clue how I finished college with the pain and memory issues, but I didn’t really see another option, and that was in the beginning. Work is really tough. I write everything down.

    I too have heard that our brains protect us from remembering tough stuff (such as severe pain). I also had immense trouble tapering off Cymbalta..I think I took about 6 weeks, taking beads out of the capsules (as they don’t have a low enough dose). I still had brain zaps that way, but they were more manageable. I even kept getting them every so often after stopping it. Years later, I still get one for a few seconds maybe once a week. No issue with Amitriptyline or any other anti depressants though (I’ve heard Effexor is the next worse).

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    I also had to remove beads! It took me over a year. I had horrible brain zaps as well as feeling like I had the flu and increased migraine… but then when it was finally over I was a bit better. Amitriptyline didn’t give me any problems either, but you’re right, Effexor is also an SNRI and caused brain zaps for me if I was even 30 minutes late taking a dose.

    Thanks so much for being here! Take care <3

  • Tamara
    2 years ago

    I have noticed severe memory loss and is the reason for me disconnecting my holistic nutrition degree (really really want to continue but reading and remembering is very difficult for me). I have two white matter lesions we found a year and a bit ago.

    I was on cymbalta as well for about a year I believe – no help in the migraines and depression increased but could be because the pain increased. It was better on this than topomax though – holy cow I had NO memory on that. So it’s hard to say which is the cause … worse pain = worse memory or cymbalta = worse memory.

    I have NO trouble getting off this drug and took 2 weeks to taper off, depression increased as we were switching men’s but that was expected. I was terrified because coming off amptriplyine took forever … I had to go down to 1/8 of a pill every third day … cymbalta I did did the loser dose caps for a week and that is it.

    I have to fill in travel logs of which stores I have seen on which day and even thinking back to what I did yesterday can be hard – can take me half an hour and I literally have to mentally go back over the day to remember.

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Tamara, Thank you for your comments! I’m so glad you didn’t have a hard time coming off of Cymbalta. Interestingly, I had absolutely no trouble getting off Amitryptaline. I never stop feeling amazed by the fact that we all react so differently to everything. I would love more research to be done about white matter lesions and memory loss with migraine. Take care <3

  • Luna
    2 years ago

    “…blissful nothingness as a form of protection, ” I think that is some of the memory lapse. The extreme storm our brain is going through during these attacks is something we are surviving through not some experience to be stored and revisited. Maybe as a dusty memory in glimpses and knowing what we survived through. My memories are almost like a first hand experience only it wasn’t me but it was. It could be two days ago and feel like it was a different life time ago.

    During the attack the brain is too busy to bring up all the pertinent memories. All it is doing is surviving the moment.

    “Research shows that physical and emotional trauma can directly affect your memory. Some of this memory loss may be a temporary way to help you cope with the trauma,”

    Isn’t a migraine attack the brain going through trauma and it does cause emotional upheaval. It may be that migraine disease is not thought of properly. I really feel that it should be talked about as a neurological brain dysfunction. And that we need to remind ourselves what the science says about the migraine brain. What little they do know should help us understand that our brain is going through major upheavals.
    http://headacheandmigrainenews.com/what-is-migraine-the-scientific-story/

    This isn’t what I intended but lost the way and it is what it is. My rant for today. 🙂

  • Elizabeth Roberts-Zibbel moderator author
    2 years ago

    Hi Luna! Thanks so much for these thoughts. I absolutely agree that severe attacks are traumatizing, and that our brains protect us. I have often thought that if I didn’t forget the details of my most horrible agonizing pain I wouldn’t be able to continue on. Hugs to you! <3

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