In some strange confluence of events, I have four things related to headaches I wanted to share with you guys. So, get your Excedrin handy and dive in!
My interview on the Migraine Again podcast.
I had a lovely conversation with Paula Dumas from the Migraine Again podcast recently. We talked about pain and suffering and, wait, please don’t go away! We also talked about how humor helps when you have a chronic illness. They were real pros during the recording session, so I’m assuming the final thing turned out well, but I abhor listening to or watching recordings of myself, so I can’t confirm that as a fact.
They’ve covered several other interesting topics in their archives which I’m working my way through as I try to mange all 58 podcasts I’m subscribed to. That’s not a joke, y’all. There are 58 podcasts in my Pocket Casts subscriptions list, and I think I’ve favorited 400 episodes that I haven’t gotten to yet. I need help, or just a really long daily commute.
Headache status
Someone in the comments on the last post asked for an update on my headache, probably because they listened to the podcast. Well, for anyone who was curious, the headache is ok. It’s not gone, but it’s not as bad as it used to be. I still wish it would fuck off already, but I’m able to hold down a job and do regular tasks like go to the grocery and vacuum. Life would be better without it, no doubt, but I haven’t thought about killing myself for years. Yay!
As for what I’m doing, I’m on a tricyclic antidepressant and an anticonvulsant even though I am not depressed or convulsant. These seem to keep the pain down, though the tricyclic gives me dry mouth, which is crazy annoying no matter how much sugarless gum I chew or Biotene mouth spray I use. My dentist noticed it too because dry mouth leaves a noticeable plaque pattern on your teeth. Saliva protects you from cavities. So there you go, headaches are bad for your teeth.
I also use a device called Cefaly for the bad headaches. It’s a TENS device, and for those of you like me who had no idea what that is, it stands for Transcutaneous Electrical Nerve Stimulation. Basically, I slap an electrode on my forehead, put on a device that looks like a futuristic sci-fi headband, and press a button to start a 20-minute sequence that stimulates my trigeminal nerve with electricity.
You have to have a prescription from your doctor to purchase one. At first it kinda tickles, then it starts to hurt, and then it gets kinda zen and takes on a quasi-pleasant vibrating feeling. By the end of it, my trigeminal nerve feels semi-numb. I’ve used this in the evenings many times if my headache seems like it will make going to sleep difficult. It doesn’t make the headache go away, but it does bring it down a notch. By the way, is it just me, or is this photo below kinda creepy?
I also try to keep a regular sleep schedule, limit my caffeine intake, try to eat healthy, and I think very hard about exercising regularly though I don’t actually do that even though I know it would help. I am not a perfect person. I have also been known to drive to Walgreens at 9pm solely to get a bag of candy as a coping mechanism, but that’s probably not a great long-term strategy.
I’m not a doctor, so if you have a headache I don’t know if any of these things would help you. All I can say is I empathize with you and I hope you are as well as possible.
I also finally framed all those hilarious illustrations from the Chinese translation of my book and hung them on the wall. I do enjoy seeing them every day. So that helps too. I got an inexplicable, painful, chronic illness, but at least I got some hilarious illustrations out of it!
Basically, the headache is still here, it still sucks, but it doesn’t suck as hard as it used to, which is about all I can hope for at this point.
Headache anniversary
The 10-year anniversary of my headache is coming up on February 17. I feel like I should celebrate somehow, but I’m not sure what to do. I’m not celebrating the headache, just the fact that I’ve survived it this long. You haven’t killed me yet, you motherfucker!!! What best expresses that idea? Does it include cupcakes? I definitely want it to include cupcakes. Maybe we should get a cake and have them write “You haven’t killed me yet, you motherfucker!!!” on it, or maybe get the Chinese illustrations printed on one of those edible ink printers. I haven’t decided.
Out of my Head documentary showing at MOMA
I still get several press releases a week, mostly from PR people who don’t realize I haven’t blogged about weight loss for 7 years. I ignore most of them, but I was shocked and amazed to get one that was actually relevant! A documentary about migraine called Out of my Head will be showing daily at the Museum of Modern Art in New York during the last week of February, the 20th-26th. Tickets don’t go on sale until two weeks before each showing, but when they do you can get tickets here. I haven’t seen it, but the trailer looks good. It opens with Joan Didion saying, “Well, I have it right now,” which totally hooked me because I too have a headache right now and no one could tell it by looking at either of us. I’ve embedded the trailer below. If it comes to the Midwest I’d definitely check it out.
Thus ends the headache extravaganza post. I hope it didn’t give you a headache.
Photo by Quinn Dombrowski / CC BY-SA 2.0. Image was cropped and brightened.
10 years?? congrats on not letting the headache ruin your life. it prob. gets annoying to hear, but you’re an inspiration!
Jennette – So fun talking with you on the Migraine Again Podcast. I’m a little reluctant to say Happy Anniversary, because 10 years with a headache is nothing to celebrate. But 10 years of survival despite daily pain is an awesome achievement – so you go, girl! (Not that we’re comparing, but people celebrate surviving a 2 year battle with breast cancer, so why not??).
Here’s to better health and much laughter in the decade ahead!
Congratulations? That sounds weird. Kind of like heart-ing a post someone has on Instagram about a relative dying. In never know what to do about that.
I think you should celebrate! And if it involves cupcakes, all the better. You could have cupcakes decorated with pink icing that someone has swirled on the top in two halves to look like the folds of the brain. I would totally do it for you if I lived closer.
As someone who also has chronic pain (was thought to be rheumatoid arthritis, the new idea is psoriatic arthritis but in another two years it’ll probably be something else), do you ever wonder about your ability to determine when your pain is better or not? Sometimes I think my pain is better, but then I think perhaps it’s just because I am getting used to it. And then I start to wonder why I am getting used to being in pain (and why I have to get used to being in pain) and then I go down a rabbit hole. At this point, I just know that some days I feel better than others, and I don’t know if it’s because it’s getting “better” or just that I’m having a good day.
Here’s to the good days, Jeanette!
@Susan Halla – I’m sorry to hear about your chronic pain. I definitely agree that chronic pain resets your baseline for what is “good.” Days I consider good these days would have been considered bad by my 20-year-old self. I’ve also found that the fact that I’m in pain has become normalized to me that I’ve simply rolled it up into the concept of feeling tired. Fairly often I’ll think to myself, “Man, I’m really tired today,” and it takes me a few minutes to remember, oh yeah, I’m tired because I’m in constant pain. Duh.
I have suffered from headaches since I was four but in the last year they got so bad I had to stop working full time. The last couple months have been really extreme to the point of not being able to plan anything and having to stay in a dark room most of the time. I’m half way through your book and it has helped me so much because of the humor and because I feel at times that I’m reading exactly what is going through my mind. Thank you for writing it!
@Eileen – I’m sorry to hear about your headaches, but I’m glad my book has been able to help you in some way. I hope you feel as well as possible.
This was very interesting.
http://www.amalah.com/amalah/2018/02/the-wonders-of-technogoly.html
Wow I don’t know how you do it. 10 years!!! I have migraines but I am blessed that I o my have them about 20 days a month. I’ve tried imitrex and had a bad reaction, I thought I was truly going to die, topamax which is the ‘devil’, botox, trigger point injections, facet injections, and now taking gabapentin, rizatriptan, and butalbital, and my cardiologist put me on propanolol for my hypertension hoping it would also help with my migraines. The injections had been helping up u too this last set so I’m worried about what my next step is. I am in the process of reading your book and I love it. Not that I love you having a constant headache just glad that I have so done with similar situation. I’m trying g to do e a new neurologist since my current one has changed anything in years. I’ve seen that headband thingy but wondered if it worked. Have you researched the Omega procedure? It’s a permanent implanted stimulator. I’m told it’s a last result but I’m almost there so I can only imagine your feelings check it out, it may help you. Again so sorry you are having to deal with headaches daily. Hats off to you, your much stronger than I.
Hi, April. I’m sorry to hear about your headache, but I’m glad my book has been able to help you in some way. Thanks for stopping by the blog! I have heard of the Omega procedure, but I don’t believe it’s something recommended for my type of headache.
Sorry I’m late to the post but you popped into my head today so I came searching. Sorry to see your anniversary 🙁
The last time I was at my PCP I told him I have chronic daily headache (not just the generic headache in my chart). He thought I was making it up. Until he left the room (I assume) to Google it. He came back in saying “you weren’t kidding”. Yeah, I’m not good with the jokes, doc.
Do you have a list of all the stuff you’ve tried? I’m currently on a similar med regimen as yours but I also take Butterbur and have a daith piercing.
Good luck fighting the fight, friend.
@Tonya – Yeah, it can be annoying having to educate your PCP about headache. I just switched to a new one this year and had to explain New Daily Persistant Headache to her. I do have a great big headache list on my old blog that lists all the cures and problems people have suggested: https://pastaqueen.com/blog/2009/02/the-great-big-headache-list/
Are you doing okay?
@Vickie – Heh, yeah, I’m fine. I know I’ve been neglecting the blog but I promise I’m not dead. I wrote a piece for Migraine.com last month if you’re jonesing for fix 🙂
https://migraine.com/living-migraine/hard-get-prescriptions-refilled/
Three of us are on meds where no dosages can be skipped. So I hear you. All the problems.
I have auto refill set up on everything, but still things happen. As you wrote.
One of those (3 of us) lives out of state. The other out of town. And after many trials, what works for us is lots of pill strips. Pill strips are more visual than bottles I think. When you have two weeks left, you know it. In fact the last two strips are a different color than the rest.
When my under grad girl went back after spring break, she took enough filled strips to last thru the end of the semester + 2. My other girl, I fill 6-8 at a time.
And when I fill, I put a note on my calendar with when they will run out, giving myself a couple week’s warning.
I also, for myself, keep a two day supply in the glove compartment of my car. And another 4 day supply in my travel bag. That has saved me several times.
@Vickie – very good article. Former migraine sufferer (years and years). So I really feel for you.
Jennette!
I am currently halfway through your book. My “headache friend” recommended it.
Just wanted to pop by and say we are HEADACHE TWINS. Mine started on March 13, 2017.
I took ibuprofen, excedrin, advil, etc. Started getting really panicky after three days that the headache was still there. It ALWAYS went way, no problem if I popped an NSAID. This one wasn’t going away. I went for a massage and hit the chiropractor three times that week. Nothing. Went to my doctor, she suggested physical therapy. Did that for a couple months, nothing.
My story could go on and on. I have seen multiple chiros, multiple doctors. I have not gone the medication route at all, though. I took Topimax for one whole day and felt 100x more terrible than I did with just the headache so I figured it wasn’t worth it.
Our headache sounds very similar. I always tell people I have “pressure.” Like a deep ache somewhere inside my brain. I feel it in my sinuses a lot. I even had sinus surgery! Waste of money. I feel it through my neck and shoulder, too.
Anyway, I am sitting here at 14 months.
I don’t think people understand when they say, “Oh, you get headaches?” No. I have a headache. It does not leave. It varies in intensity but it’s always there.
Sigh.
Anyway, thanks for writing your story. I don’t know how you did it with your headache.
Oh, and one thing I would really recommend is finding a headache friend. Having someone in the same boat to complain to is really amazing.
@Bri Manes – I’m sorry to hear about your headache, but I’m glad my book has helped you in some way. It does sound like our headaches are very similar. I hope you’re able to find a bit of relief, even it is just by having a headache friend!
Jennette- Thank you so much for your book! For the first time, I felt like someone totally gets me and my situation. I’m sure you get tired of hearing people’s personal stories so I will try to keep it quick but I make no promises. I started with a persistent headache in May, 2015. I have always been a person with chronic illness (diagnosed with Crohn’s disease at 15 and a doctor’s kid= lots of health crap) but have always been the type to be able to push through the discomfort and move along to the next task. I am a veterinarian and for the first time I felt completely crippled. No one understood what I was going through and to me, it sounded silly complaining about a headache. I went to multiple doctors and flew across the country to the Mayo. I tried Western and Eastern techniques (which I thought I would never accept). Like you, I eventually learned that this was the new normal and I could choose to live with it or be defeated by it. When I lost my mom about a year ago, I decided it was time to make some life changes. I quit my job and am opening up my own animal hospital. This is something that I thought I could NEVER do but once I realized that I was able to live with pain for almost 3 years, I figured I could do just about anything. Sometimes I think that I am crazy for doing this and there is always the constant fear that the headaches will come back with a vengeance. Your book affirmed to me that there is no time to live in fear. The pain has improved though I’m not sure why. Maybe those life choices were for the best after all? Some days are better than others but I have learned that it is OK to crawl up in a ball and watch TV when I don’t feel well. Thank you for being vulnerable enough to share your journey. I have encouraged my husband to read it because you put into words the feelings, emotions, pain, etc. that I never could verbalize. Thank you, thank you, thank you!!!
@Brittany – I’m sorry to hear about your headache, but I’m glad that my book has helped you better communicate what it’s like to your husband. Congrats on opening your own animal hospital! I’m happy to hear you’re trying to live your best life despite the pain. Thanks for stopping by.