Today's guest post comes from Nicki Nemeth, an artist and a fellow migraine warrior who broke a 2 year intractable cycle a few months ago with the help of diet, supplements, and MMJ. To see some of her art, check out her page @nickidoesart.
Hi everyone, my name is Nicki and it’s my honor to be featured here on The Dizzy Cook. Today I’ll be discussing something that isn’t often spoken about in our community - migraine sexuality. While many people with migraine find sex to be therapeutic, finding relief from their pain through orgasm, others are just as likely to trigger or worsen existing pain. This continuing pain, along with preventative medications that decrease desire, can cause sexual dysfunction and affect your quality of life. When you live with chronic pain, so much of your time is spent learning about your triggers and the things that make you feel bad, that it’s easy to forget about learning what makes you feel good. Just as the things that bring you pain now might not have brought you pain before, the same goes for pleasure. It’s important to explore this new side of yourself. My goal with this post is to open the lines of communication on the topic. I want to help people feel less alone on their migraine journey, while bringing pleasure and joy back into their life.
I was diagnosed with migraine at 22, then went into remission only to have it return at 26 - I still have no idea why! I’m 30 now and my official diagnosis is Complex Intractable Migraine. I experience varying levels of pain and associated symptoms 100% of the time. A diagnosis as complex and broad as this leads to necessary lifestyle adjustments that are equally as diverse. Since there’s no handbook out there on how to live a migraine friendly life, it comes down to you as the migraineur to experiment and push yourself out of your comfort zone on a daily basis. If I were to postpone activities and wait around for my migraine symptoms to subside, I would never get anything accomplished and would not lead a very full life. As a migraine warrior, not a migraine victim, I can learn to lead a happy life alongside chronic illness.
Whether or not you’re in a romantic relationship(s), chances are you have had (or will have) sex. It’s something you deserve to enjoy, regardless of your health status. I personally find sex triggers my migraine symptoms, and it took me a long time to get where I’m at today. While looking at everything from a new perspective that I never would have in the past, I felt like I was losing my virginity all over again. To simplify this issue, I broke it down just like I do any other area of my life that needs to be fine tuned to migraine. By looking at sex according to the five senses, I was able to begin my research.
Needing to find resources where people were open to communicating about their sexual experiences led me to BDSM and Tantra. I felt very intimidated by my research, especially BDSM. So if studying these topics makes you feel uneasy, that’s ok, you’re not alone. Just remember it’s only reading material, and you don’t have to do anything you don’t want to. I learned that BDSM isn’t only pain, like how the media portrays it, it’s whatever you want it to be. First and foremost, it’s safe and consensual sex with open communication at all times. By researching this sexual lifestyle, I was able to pick and choose certain elements that are very helpful to a migraineur, such as sensory deprivation. This allowed me to become more comfortable with communicating my desires.
Tantra is about so much more than what our Western society makes it out to be. It’s an ancient religion dating all the way back to the middle of the first millennia, encompassing union and intimacy on a very deep level. Since Tantra isn’t merely about sex, you can practice it with or a without a partner. I find Tantra research especially helpful when it comes to breath work, or as it’s called in sanskrit, “pranayama”. By combining these two seemingly opposite lifestyles, I was able to find a middle ground that worked for me and my husband very nicely. I’m happy to report that I have rejuvenated my sexual identity while living with intractable migraine.
The most vital part of all of this is to communicate, communicate, communicate! You need to be able to have an open dialogue about your sexuality with yourself and/or your partner(s), otherwise you will get nowhere. This took quite a bit of time for me to get comfortable with, but with practice everything gets easier. I mean, look at me now, I’m writing my first ever blog post and it’s about sex! My research in the BDSM community really helped with my communication skills. I found verbiage I enjoyed using and learned that I wasn’t alone in my likes and dislikes. Another great way to practice is by going into an adult store and asking questions about things you see. Not only is it a great place to go with your lover and find things that pique both of your interests, but also the employees speak with a matter of factness and confidence about their products. It can really help to remove any reservations you may be feeling.
When it comes to migraine, people struggle with sex for all sorts of reasons. Between pharmaceutical side effects, possible mood disorders, pain, and weight gain, which are only a few things that come to my mind right now, sex can often be a low priority. It’s something you’ll get to when you’re “feeling better.” Then when you throw in the complications of day to day life, along with a potential partner’s life, sex can become non existent. It doesn’t have to be this way, which is why I’m a big supporter of having planned sex. Here are my 7 tips for improving your sex life while managing migraine.
1. Planning Ahead
Some people say that planning sex is the opposite of sexy. That by taking the spontaneity out of the equation, you also remove the lust. I couldn’t disagree more with this statement. It all depends on how you choose to go about it. If you put it in your calendar and treat it like a doctor’s appointment that you need to show up on time for, than I agree that’s not sexy. But if you use it as an opportunity to have something to look forward to, and potentially come up with new ideas for, than that can be a lot more enticing. When you have a chronic illness, even the most basic of tasks can feel cumbersome and take time to recover from. I can’t tell you how many times I’ve had to take a nap simply because I took a shower. By planning sex, I’m able to coordinate what I want to get done, be it grooming, cleaning the sheets, picking out an outfit, making a romantic meal, or even taking preventative medication. These are things that help me to feel good and allow me to have sex with a level of confidence that I may not have had otherwise. When you take advantage of the scheduling, you’re able to set aside a larger block of time, experiment with new things, potentially romance your lover, and build a sense of lust and desire leading up to the moment. I’ve personally found that by planning sex, I’ve begun having more spontaneous sex as well. So don’t be afraid to coordinate your play, you may find it works really well for you.
2. Practice & Props Make (Almost) Perfect
Sex is no different from any other area of your life and it requires proper ergonomics. If you don’t practice this, your body will strain itself and tire more easily. Migraine is already tiring enough, and there is no need for sex to wear you down further. So take a look at what sexual acts and positions you enjoy the most, and modify them accordingly. There’s nothing wrong with using props, such as pillows, blankets, or anything else that strikes your fancy. Just because it isn’t ribbed or vibrating doesn’t mean it won’t help you feel good. I personally use foam rolls given to me by my chiropractor more than anything else while in bed. They help encourage proper curvature of the spine and prevent my neck muscles from spasming. If you want to purchase a product to enhance this area of your play, there are companies out there offering ergonomic furniture designed specifically for sex. Liberator is my personal favorite, but do your own research and see what you can find.
3. Lighting is Key
Light is my number one migraine trigger. Even a single flash of it can bring on a cascade of symptoms. So having complete control over the color and brightness of the lighting in my home sets me up for success. There are lots of companies out there that offer lighting products that do these things, but my personal favorite is the Phillips Hue System. If I can’t tolerate any sort of light, this is where my sensory deprivation research comes in handy. During these times I’ll cover my eyes, but instead of wearing a blindfold, I use a black scarf and wrap it around my eyes and the base of my skull, tucking the end into the folds. I make it as tight as necessary, turning it into a compression mask. This helps with any pounding/throbbing I may be experiencing. Since there are no gaps where light can come through, I experience total darkness. This has proven to be such an effective migraine remedy for me that I’ll do it anytime I need relief, not just during sex. If you want to see, but are still feeling light sensitive, you could simply rotate your position, or place things to block the light from your direct line of sight. If the idea of a blindfold makes you feel uncomfortable, do some research of your own. There are lots of alternatives available for vision deprivation.
4. Keeping Quiet
If you’ve ever attempted to have quiet sex (on holiday at the in laws anyone?), than you know just how difficult this can be. Luckily if noise is only an issue for you as the migraineur, there a few options available to you. The things that trouble my head the most during sex are heavy breathing and the scratching of linens. This is where a bit of shopping and tantra/pranayama come in. You can incorporate certain breathing exercises either with your partner or practice them solo. By doing this you slow the breath, soothe your nerves, and increase sensuality. One of the best things I’ve done for my phonophobia is switching my bedding out to modal cotton. Not only is it silent when I move around on it, but I also sleep more soundly at night due to it’s breathability.
Although it may seem counter intuitive, having background music on can be very helpful when you have pain. At the Migraine World Summit this past year, it was theorized that a migraine brain doesn’t block out irritating sounds. When you hear it, your brain stays alert in fight or flight mode until it ends. This only causes physical and emotional stress on the individual. If you can turn the music loud enough, your brain should be able to focus on that instead of the sound that is triggering you.
Wearing earplugs or headphones is common with sensory deprivation, but can personally cause me more trouble than going without them, unless I’m wearing my blindfold. Anything that scratches against the outside of my earplug or headphone is booming loud in my inner ear and causes further pain. When I have the scarf securely in place over my ears, it prevents the scratching from happening. By combining these two forms of sensory deprivation, I’m able to drop what could have been a full blown attack down multiple levels. This solution makes it a very useful migraine remedy, regardless of my activity.
5. When Food and Scents can be Triggering
For taste, avoiding any food and/or drink you find triggering is a good idea, but sometimes that’s easier said than done. Pleasure comes in many forms, and food is one of them, so don’t be afraid to indulge every now again. I would also recommend having any medications you take handy. Whether you take preventatives, abortives, or supplements, these have the ability of extending your play and allow for a more invigorating and active time.
When it comes to smell, I simply avoid things that bother me, such as chemical cleaning products/detergents, candles, or incense. Instead, I use essential oils to clean and make my home smell fresh. By doing this, I avoid the smoke of the incense, the flickering of a candle, and I never have to worry about my bedding smelling like a strong detergent.
For migraine treatment and cleaning products, I prefer scents like peppermint, tea tree and lavender. For sex, I enjoy spicy and warm scents. The oils of frankincense, clove, and orange are grounding, sensual, and are some of my favorites. You can use a diffuser or make an air spray to distribute your favorite scents. I posted a video in Migraine Strong on how to use this healing scent.
6. The Sense of Touch
The final sense is the sense of touch and, as you can imagine, this is the most detailed one of them all. This area is going to be fine tuned to you, and due to its ever evolving nature, may take the most time to figure out. To me, this makes the journey more fun and exciting.
A lot of people say that the build up of tension before orgasm is one of the best parts of sex, but I disagree. Too much tension prevents me from being able to orgasm, no matter where I’m at symptom wise. If I do orgasm, it’s uncomfortable getting there and I enter the attack phase of my migraine very soon after. I need to be fully relaxed and feel melted to properly enjoy sex. My nerve endings are already on edge all day, so the last thing I want to experience is more tension. Which is why, if possible, I really love to take a bath or get a massage before sex. Since these aren’t always possibilities, you can incorporate massage during the act by either asking your partner to grip you more firmly, especially in the places causing you discomfort, or by simply doing it yourself. Another thing you may enjoy is hair tugging or pulling. I find head massages to be too loud and scratchy sounding, but gentle tugging at the roots, in large sections, can be very therapeutic and stimulating.
7. The Finish Line
If your orgasms elude you, you’re not alone. I find it much more difficult to finish during certain migraine phases, and a great thing to experiment with for this are the elements of hot and cold. Who here hasn’t worn socks to warm their feet during an attack, or used an ice pack or heating pad to find relief? Sometimes I’ll even give myself brain freeze by resting an ice cube against the roof of my mouth. This soothes the trigeminal nerve and sends a shock of relief through my brain. These same concepts can be applied to sex. Some ideas to try are rubbing ice, warm massage oil, or anything else that sounds pleasurable, along your body. This should help keep your nerve endings stimulated yet soothed. It can increase your sense of pleasure and diminish the possibility of an orgasm slipping away.
Human sexuality is a complex, fluid, and sacred thing. There’s no right or wrong path to follow, it’s just finding what makes you happy. It is quite freeing to rediscover your sexuality, and find new ways to bring pleasure back into your life. Chances are if you can do it with sex, than you can apply it to other aspects of your life as well - making this a very fun way to enrich your life post migraine.
"The essence of life is to communicate love. - Yogi Tea" So everyone, please practice safe and consensual sex. Thank you!"
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Anonymous says
Thank you for this! I have issues with sex almost every time and many times in the middle...(not fun at all) There are a few things here I hadn't thought of.
Sally Pascall says
I have just been diagnosed with Vestibular migraine and I was at a loss as what to do. The doctor prescribed vitamin B2, Co enzyme Q10 and Magnesium. He never mentioned A special diet but I have found your comments very useful.
Sally
Claire (@throughthefibrofog) says
Thank you for being so open and honest about an under-recognised issue. It's so important to keep talking about these things - I don't think a doctor has ever mentioned a relationship between sex and migraine to me.
Alicia says
Thank you for reading, Claire! 🙂
Liz Bannantine says
Thank you so much for your open, honest, and enlightening words, Nicki (and for posting this, Alicia!) This topic is so important and not talked about enough. I love your point about living with migraine and how we focus on all the things that trigger us or are unpleasant for us and our attention is drawn away from what is pleasurable and add value to our life. Having an open conversation about sexuality is especially important with a chronic illness because of the laundry list of items that we need to keep up with on a daily basis - potential medication side effects, fatigue, busy days, etc. I know medication side effects for me have greatly affected my sex life, so these tips are invaluable to me. Thanks so much!!
Alicia says
Thanks for your feedback, Liz! I had the same thoughts as you when I first read Nicki's draft. So glad you enjoyed it. 🙂