Guide to POTS

Hoping this makes a confusing chronic illness diagnosis easier


Disclaimer: I am not a medical professional. I can only speak to my own experience and hope that gives you some insight into what POTS is and how it can affect you or the people around you.

What it feels like: A jackhammer in your head and when you open your eyes every light is like you’re 2 feet away from the sun. It’s hard to sleep because your head hurts so much but also you are exhausted.

What is the difference between a headache and a migraine?

A headache and migraine are biologically different and they feel very different as well. Where headaches can be caused by many things, including environment, food, etc migraines are a neurological disorder that affects the nerves and blood flow of the brain.

Headaches can be all over your head, general pain. Migraines tend to be located in one section of your head, such as behind one of your eyes and backward. There are many other symptoms that come with migraines, such as nausea, fatigue, dizziness and light sensitivity. All of which are also symptoms of POTS so it can be hard to tell what is a headache and what is a migraine. I will tell you that if you normally get headaches and then you get a migraine you will know it’s a migraine. 

Migraines are a whole experience before even getting to the migraine headache stage. In a way migraines also tend to have warnings to them. There are normally smaller headaches before the main headache. This can be followed up with aura or floaties that appear in your sight. After that you get the migraine headache. And then once your headache is gone you feel like you have the flu, exhausted, still dizzy and miserable. The entire episode of all of those stages is the migraine, not just the headache.

What causes migraines?
And how do POTS affect migraines? 

Migraines are a neurological condition but the exact cause is unknown. What we do know is that it affects the nerves and blood vessels and blood circulation of the brain. It also affects the nervous system of other parts of your body.

Several studies (cited below) have found that between 30 – 70% of people with POTS suffer from migraines. I’ve been told 2 theories around this. The first theory is that the change in blood pressure and then the snapping shut of the valves rushes the blood to your head but also doesn’t bring enough blood to your head which causes the migraine. The second theory I got was that there isn’t enough blood to reach all parts of my brain which causes the migraines. I’m not sure if either are true.

Solutions I’ve found

Okay some bad news, migraines are normally not treatable with over the counter pain meds (Advil, Tylnolol, etc). Over the counter pain meds do help a little but not amazingly well.

I surprisingly do think Coca-Cola works pretty well, it’s not going to get rid of the migraine by any means, but it will help. The idea behind it is that the caffeine in coke opens the capillaries in your brain which allows the blood to flow better. I have tried Pepsi and Diet Coke and have not gotten the same results, so original Coke is best.

Excedrin Migraine works really well for me but it does have caffeine in it so you need to watch that, maybe only use it on days that your heart rate is down or you’re in enough pain you won’t care. 

Prescription Medication

Sumatriptan is like ibuprofen for migraines. I have to say it works for some people and other people less so. I personally think it takes the edge off but doesn’t get rid of it. My cousin swears by it.

Codeine was great, I don’t think they give that out so much now but that was the one thing that would get rid of my migraines immediately. 

I have been on several medications for migraines over the years, the one I found most effective for long term daily use to keep migraines at bay was Amitriptyline. There are many more options but your neurologist can suggest which ones to try and in what order.

Pot works somewhat okay for me but people swear by it. I find that a very small dose of edibles can help a little but no more than drinking a coke or advil would.

Botox can also work really well for people. They insert the botox into the nerves around your head, mainly your neck and scalp. It wears off after 3 months so you will need to redo it that often. I found it worked really well for the first year but waned in effectiveness. 

Further Reading

Cassoobhoy, Murtaza. “Migraine Treatments, Preventative Meds & Abortive Drugs.” WebMD, 9 February 2023, Accessed 28 March 2023.

Kuruvilla, Deena. “POTS and Migraine: What’s the Link and How to Manage?” Healthline, 15 July 2022, Accessed 28 March 2023.

O’Shea, Kathleen. “Living With Migraine and Postural Tachycardia Syndrome (POTS).” Psychology Today, 21 January 2023, Accessed 28 March 2023.

“Postural orthostatic tachycardia syndrome and migraine: A narrative review.” PubMed, 19 July 2022, Accessed 28 March 2023.Riggins, Nina.

“The Link Between Postural Orthostatic Tachycardia Syndrome and Migraine | AHS.” American Headache Society, Accessed 28 March 2023.

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