October 25, 2022 marks the 4th year that POTS UK is making its mark on the awareness day calendar. Postural tachycardia syndrome or postural orthostatic tachycardia syndrome is an abnormal increase in heart rate that occurs after sitting up or standing. The symptoms of POTS include but are not limited to lightheadedness, brain fog, fatigue, intolerance of exercise, headache, blurry vision, palpitations, tremor and nausea.
Studies have estimated the association between POTS and chronic migraine at rates estimated from 41% to 96% of people with this condition. Migraines can severely affect one’s quality of life and may stop people from carrying out their normal daily activities.
Gréta Hunt, a Neuroscientist, POTS & Fibromyalgia patient, photography enthusiast, and crocheter, is constantly battling chronic migraine as a result of her POTS diagnosis. She has tried several tips and tricks for migraine relief. Some have stuck to her, some have not. During the interview, Gréta answers the questions about what to do when you have a migraine flare-up. She urges anyone suspecting they have migraines to go to their GP. This is the story of her life and how she goes on with her conditions and the constant fight with migraine and other symptoms. The story shared below reflects her own personal experience only.
You openly shared your experience with migraine relief on social media. Can you tell us why have you decided to document your story?
Before I was diagnosed, I felt ashamed of it. After seeing someone with the condition on social media, I realised it’s not my fault. My first journey was starting BSL (British Sign Language). I did an introduction video about why I was making BLS videos. I made videos on what I wanted to watch 3 or 4 years ago to make others feel better. It’s not something I should hide. I wasn’t really aware of how many barriers there are. I wanted to be open about it.
What’s the biggest challenge you had to overcome with your chronic illness?
What I’m still working on is internalised ableism – when you put yourself to different standards than you would with other people with the exact same conditions. I was aware of other people having difficulties and understanding them. I was passionate about others. But when I was looking at myself, all I could see was “I can’t do this.” That kind of thought process is something I’m still working on really hard. Seeing videos of other people on Youtube or following people on Instagram who are honest about their conditions help.
Right now, my biggest obstacle is applying for jobs. I find limiting what I can do or what I want to do. Finding that middle ground with myself is challenging.
Whenever I worked before, I worked in a lab. I get to the lab using my wheelchair but I can still walk around the lab. Working within the lab is not as challenging as getting to the lab. That’s what’s stopping me right now from working in that setting. We live in a rural area. I can drive but I can’t go on my own because I get migraine attacks quite often. It is triggered by sudden flashes of light and it can come at any time. I have migraine with auras which can disturb my vision quite a lot, so if I get scared, I need to switch drivers because I can’t drive anymore. That means someone would need to come with me and then go back which would add an extra 2 or 3 hours of commute to their day, usually that’s my husband. It’s just not possible so that’s what’s stopping me from working in a lab or office. That’s why I’m looking for remote possibilities.
UPDATE: Gréta received and accepted a job offer since our chat.
What symptoms limit your everyday activity?
I think it’s mainly the unpredictability because it can be different from migraine to migraine. I might have a plan to go somewhere within a week, but the fact that you don’t know whether on that day you wake up with a migraine or have trouble standing, or any of the symptoms is difficult. You can do your best to prevent it, for example having a migraine diary to figure out what your triggers are, but sometimes even if you avoid everything, it still comes on. I would rather know the date of the migraine because I can plan around it. Obviously, I would still not enjoy it but at least I would know.
What advice would you give to someone who has had the same problem?
I shared every tip on my Youtube video. For the Medi Grade Eye Mask, the pads are definitely one of the things that I always pack wherever I go. In fact next week, I’ll have a trip to London and that is definitely one thing that I will have in my bag. But if you don’t have a cold mask or pads, just something cold especially in the forehead or eye area will help. With my strong prescriptions, I just put the mask on my forehead looking like an off-duty ninja turtle. But when I lie down for a bit, I would put it over my eyes and it does help. I didn’t think it would help that much the first time, but it did.
When it’s really bad, I use the shiny side but it heats through faster. It’s a quick cool feeling but I have to put it sooner in the fridge. If I put the softer side, it lasts longer. It’s nice that I can have the choice. I wouldn’t like it if both sides were the same. Sometimes, I really want the gel side, but when I’m working or something, it’s nice to have it on longer and it’s just a continuous feeling. It’s not as strong but it’s for longer.
How did you hear about the Gel Face Set?
It was my husband who found it. I was watching a video and the girl recommended having a gel mask. I watched the video during a flare because when you are in a flare, you try to do everything especially for migraines that would last days. I told my husband about it and he got it for me. It’s one of the best gifts I’ve ever received, especially since it comes with the mask and the pads. You can have the pads in the fridge while you use the mask. And when it warmed through, you can put it in the fridge and get the pads out. I was just so amazed. That’s why in my video, I said it’s not sponsored, I just truly recommend it. That’s the top advice.
Other than that, you should know your triggers which is what migraine diaries are useful for. But I don’t keep one right now because I find it a bit depressing to see how often I get migraines.
I also found that diet coke and orange juice help because they have an additive that is also used as anti-nausea medication. It is sugar-free so you are not pumping your blood sugar up. If it’s cold and you drink that, it can help with the nausea. I get quite nauseous when I have migraines so it helps.
We always value feedback from all our customers so we can continue to innovate our products until they meet the needs of everyone. Let us know your experience with our Gel Eye Mask.
I’m probably very biassed because it helped me so much. The only thing that for me there’s no use for the actual eye holes, but I know if I weren’t using glasses to see, I know that would be so cool to actually put it on and still do stuff. However, I wouldn’t change anything about it. I love that it has 2 sides and you can put it both ways. It’s also adjustable.
Follow Gréta on her Instagram and Youtube accounts to know more about her journey. And if you are one of those people who have frequent migraines, I hope that our conversation encourages you, gives you hope, and helps you feel less alone. And for our fellows with POTS, we will help with raising awareness about this condition. We hope that families will find time to try to spread awareness of a condition that affects so many people. The more we stand up, the more impact we have in our community.
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