Tell me if this seems crazy or maybe a workable theory, please
I have medication resistant major depressive disorder and chronic migraines. I had my first migraine, a hemiplegic one, at age 13. I’m now 51. And have had three of those total through the years. I’ve had migraines without aura ever since. Mostly sporadically and I just had to deal with them. No medications helped. (Just FYI I also had undiagnosed endometriosis for 8 years in that time, too. Then in 2005, when I was 33, something happened. I suddenly starting having them more frequently and soon discovered that I am allergic to triptans, several antidepressants and other exciting medication experiences. I also learned I wasn’t crazy. I have it in writing from several psychiatric professionals. I had to leave my beloved job of 11 years because I was missing so much work for either the endometriosis or the migraines. By the way, also FYI, I have a history of severely hitting my head on things. Totally by accident. There are many other details but I don’t want to bore anyone. My depression worsened severely and I became suicidal. NOTHING worked for my headaches other than hydrocodone. Not any other opioids. Stronger or weaker. I survived thanks to hydrocodone. It didn’t so much stop the pain but made me where it was pushed from the forefront of my mind and I could deal. Please note, I was given this medication by several doctors after I failed all the other meds. Then the opioid thing happened and I couldn’t get it anymore and went through hell cold turkey. For years I have been dealing with neurologists and psychiatrists who couldn’t help. Then I found a new psychiatrist who finally got me to the best point I’ve ever been with my depression and have continued to search for a neurologist who “specialized” in migraines. I’ve had some terrible things done, as I’m sure we all have. FINALLY I have been referred to a specialist at Vanderbilt to see in January. SO thrilled with that. I feel you needed all the prelude to my main question for you.
For some reason, around Thanksgiving I became suicidal again. Totally out of the blue. Went to my doc and we decided to put me on 7 days worth of Valium and reevaluate. Three days into it I got Covid. For sure. I had a positive test and my husband already had it. Got Paxlovid. I mentioned the Valium, after taking it for two days into Covid I quit because it seemed to have no effect. For the entire time I was sick, and a few days before I started having symptoms I didn’t have a single migraine. Mild headache that Tylenol took care of. For the sake of comparison, if you look at my migraine calendar I have at least three a week, mild headaches most other days and I count it as a miracle if I have a day a month where I’m completely pain free. This past Tuesday was the end of 10 days of quarantine. I’m fine! I’ve had mild headaches that Tylenol has controlled but nothing major. I have only Ubrelvy to take for my migraines and I took one Wednesday because I was afraid I was getting one. If I was the Ubrelvy took total care of it. I’m still great today as I type. My question is, is it completely out of the realm of wisdom or reasonable thought that perhaps the Paxlovid killed something that was causing my migraines? It’s my layman’s understanding that there aren’t that many antivirals and I don’t know that I’ve ever had one. I have weird medical history. I could have been exposed to anything along the way. Perhaps I was exposed to some virus and it’s just been something I’ve not been tested for? Maybe? It’s also my understanding that Paxlovid is a different type of medicine than most others. What do you think? I haven’t gone this long without a migraine since 2005. Something had to have changed. Of course, as we all know, I may get one in five minutes but this has been remarkable to me. I am seriously interested in what you think. Sorry this was so long but I wanted to provide some background. Thanks in advance, Jess
Hi Jess - You raise some great questions here in your post, and I wish that I had some answers for you. Unfortunately, since we're not medical professionals, we can't give any feedback on how your Paxlovid may effect your migraines. I encourage you to reach out to a doctor on your medical team (perhaps your neurologist) or the person who prescribed the Pavlovid. I can imagine they would be able to give you a definitive answer to these questions.
In the event you do reach out them, would you let us know what they think? I'm sure there are other people in the community who would like to hear their feedback.
Wishing you well, and hope that your migraines continue to feel more bearable in the coming days 😀. - Cody (Team Member)
Hey Jess -- I just read your post and hope you see this response! I have nothing to contribute about Paxlovid, but I can tell you that when the pandemic was in full force, we did have occasional people post here sharing that throughout their time with Covid symptoms, they had no migraines or extremely reduced symptoms.
People have shared all kinds of experiences with migraine during Covid ... some get more, some get less, some have weird symptoms they've never had before ... it varies a ton. I can't give medical advice, but you may be right that Covid and/or Paxlovid have had an impact on you.
How are you doing now? My heart goes out to you for all you have experienced with depression and suicidal thoughts, too. It's not easy -- you have our full support here, no judgment! Please keep us posted and let us know how it goes at Vanderbilt. -Melissa, migraine team
Thank you for the encouragement. Currently my headaches and migraines are sneaking back. Tiny manageable headaches but killer migraines when I get one. I believe I started getting sick with Covid back on the 11th of December. So it’s taken this long for them to start coming back full strength but not frequency. Ubrelvy has lost some of its efficacy. I’m just hanging on by my fingernails waiting for my appointment at Vanderbilt. I told my husband I almost wish they had never gotten so much better that I remember how I used to have a life. Losing it again is so hard. Hope that makes sense. I will post my visit results for sure. Good or bad. - Jess
Hi Jess- so sorry to hear how you are navigating extreme migraine attacks atop lasting effects of Covid. It is unfortunately common that we hear how the CGRPs (of which Ubrevly is one) can fade in efficacy over time. When is your appointment in January? Hope it's coming up soon and glad you have it booked.
I SO agree and have experienced how rough it is to experience a respite from the intensity of migraine just to have it come roaring back. This article gets to the crux of that challenge and therefore may be of interest to you: https://migraine.com/living-migraine/cost-wellness-affording-cgrps. We are here for you and in this with you and look forward to hearing how things continue for you. Warmly - Holly - migraine.com team
Thank you all so much for your words of encouragement. I promised an update after my appointment at Vanderbilt Interventional Pain Clinic. The visit wasn't the most encouraging thing I've ever experienced but I have nothing but praise for the doctor and all of his staff. You know you're at a good place when you actually get in early for your appointment. I was interviewed by a wonderful, attentive, interested intern who asked great questions. A nurse actually typed the entire conversation and asked questions of her own. Both the doctor and intern had actually read my history and remembered it. It was absolutely amazing. I can't complain about any part of the experience. All that said, I really, in my opinion, don't have much to report. He said that I have done all that he could think of to do except for three suggestions. First, a new MRI of my head and neck with and without contrast to make sure nothing has changed. I think that is a wise idea. The second was that even though Ajovy did absolutely nothing he wants me to try it again in combination with an infusion of Vyepti. One of the few meds I've not had. The theory being that although I didn't respond to one or more medications individually I will when they are combined. My concern is the Vyepti. If I have any type of "bad" reaction to it, whatever that might be, will I have to deal with it for 3 months? The doctor said it was meant for use every 3 months. The third suggestion if the other failed was revisiting Botox, which itched, burned and turned red last time, and a huge dose of Lamictal. That's all. He made a comment that I remember as "your head has just become sensitized." My Mother disagrees about the specific word but same thought. If neither of these treatment combos work they can make me an appointment at an even more intensive headache clinic. In no particular order here they are. He mentioned there being one in California, but not by name. We're on the southern east coast so it's kind of out of the question. Diamond Headache Clinic, in Illinois which is the headache specialist most doctors around here are aware of. One I've never heard of before, The Jefferson Headache Center in Philadelphia. Also a passing reference to the Mayo Clinic. So that's where it stands right now. There was no answer or comment on my having not had a migraine while I had Covid even though I did ask specifically. (Oddly enough I barely made it to Nashville for my appointment due to having contracted another virus. "Not flu. Not Covid." is what we're calling it. It's everywhere here. Anyway, the entire time I had this virus I had no migraines! No Paxlovid was involved so I know that wasn't a contributing factor. What is the deal?) Anyway, at this point I am thinking that this may be the end of my migraine adventure. Any further progress is going to have to be completely on me. I hesitate to dabble in herbal and supplemental medicine just because I did at the beginning, it didn't help and now I'm afraid it will interact with my depression meds and I cannot, cannot, cannot deal with that. As for resuming acupuncture, massage and the like, I can't afford it. Both help but are expensive. We spend $450 every six to eight weeks for a Ketamine infusion for my depression and we don't have extra money to pay for supplemental migraine treatment. I can't trade one for the other. If I do I simply won't be here. I won't last long enough to feel the benefits. Sad but true. Ugh. I think I may go back to bed...
