- Lupus headaches have various triggers and they can feel like your head is pounding from the middle to front of your skull down into your mouth. It can feel like burning sensation from your neck and pounding up to the back of your skull.
- Lupus and headaches. While it can get complicated trying to figure out the causes, there are a few. First, it could be vitamin and mineral deficiencies or “low normal” lab work. TMJ and tight jaw muscles and sitting down often can push all of our vertebrae and joints out of place especially as we deal with chronic inflammation making it worse. Lupus headaches and neck pain are a thing too!
- Lupus headache relief depends on the cause. So, sometimes taking high quality and ingredient friendly supplements helps, staying hydrated with coconut water or electrolyte powder too. Chiropractic care and TMJ relief using at home massage techniques(see below) help prevent them!
Whether you’re a “seasoned” lupus vet or a newbie, the one thing that we all have in common is that Lupus confuses us at every single stage(angry emoji here). For 2 years you may have one set of symptoms and finally understand it and then new unfamiliar symptoms arise and it throws you for a loop all over again.
Don’t let Lupus get to you. Get ahead of Lupus, you are strong enough to keep going.
Am I speaking from personal experience and sound a little salty about it still? Yes. Thanks for calling me out. I know you get me!
Lupus headaches are real and they are so frustrating and mentally exhausting.
I’ve suffered from migraines since middle school. Lupus headaches are comparable. They all suck either way. Over the years, I’ve spoken to so many lupus fighters and sometimes it can be hard to determine the cause of your headaches which is even more frustrating.
Have you ever practiced mindfulness? Don’t roll your eyes me, hear me out first.
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This is where you acknowledge exactly what you’re feeling and where physical and mental. After doing this for some time, I’ve been able to have a better intuition of how and why I feel a certain way.
This combined with speaking with so many healthcare professionals, I’m going to give you all the details you need to know to make the right decision on stopping your lupus headaches and preventing them!
If you can do this and keep reading more blogs on Lupus you’ll start to put the pieces together on why your symptoms are occurring so that you can stop and prevent them.
Lupus headaches can feel a little different depending on the cause.
I’m going to describe how headaches feel. From there it will help you determine your cause so you can read more in section 2.
Then, once you understand how it happens and why the Lupus Headache Relief section will help you prevent and stop symptoms!
What Does a Lupus Headache Feel Like?
Pay close attention to what hurts and where while you experience a headache.
Lupus Life Hacks – Download the OneNote app and create a tab called “headaches” to take notes on what hurts and when so you can start to notice a trend and help you figure out exactly how and what hurts while experiencing a headache. Or write in a daily journal. Whatever floats your boat.
Pain in the Front of Your Head with Jaw Tightness:
Do you feel tightness in your cheeks near your jaw bone?
Does the roof of the inside of your mouth hurt or feel like its pounding?
Does your jaw feel tight and clenched often?
As these are happening, you may have pain radiating to your temples, your forehead and the top front part of your skull too.
It can make you tired, hard to think straight and feel crabby.
Does the roof of your mouth hurt and do you feel pain radiating between there and the top front half of your head?
That’s a type of Lupus headache too.
This may be TMJ related or it could be a tension headache. Either way, you have inflamed muscles that are pushing joints out of alignment.
This also could be stress-related as TMJ can flare when we’re more stressed than usual.
Pain in Back of Head and at the Base of the Skull:
Does your neck feel stiff and sore even though you haven’t done anything strenuous?
Sometimes your neck may hurt more on one side and your headache is at the front of your skull.
Dull and nagging pain is what is commonly felt and described for this type of headache.
Plus, a tingling sensation in your arms can occur at the same time.
Some people feel nauseous and may vomit with this type of headache, more so feeling like a migraine.
Lupus headaches and neck pain are common.
Pain in the Front of your Head or Entire Skull:
If you feel radiating pain or throbbing pain in your skull and you feel extra fatigued, this is another type of headache.
Sometimes you may feel nauseous and lightheaded too.
This can be because of dehydration and it happens very fast. Faster than we realize, especially in the summer even if you’re inside all day!
Dehydration and vitamin deficiencies are very common in us too.
Lastly, it can be a side effect of our meds. Even though it’s a side effect, we can still take proactive steps to prevent as many as possible.
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Causes of Lupus Headaches
Lupus and headaches are a real thing. There are multiple causes, but I’ve broken it down so you can pinpoint which fits you.
Generally speaking, with the symptoms we experience whether it’s headaches or brain fog it’s because we have a lot of chronic inflammation in our body. Even if you don’t see it, it’s happening.
This inflammation makes it hard for our organs to get rid of toxins from the food we eat, the water we drink(heavy metals), and the meds(chemicals from active and inactive ingredients) we take. Toxins build up inside and cause many symptoms that we experience. Lupus headaches are one of them.
Chronic inflammation is a root cause of all of our lupus symptoms. The root cause of chronic inflammation can have many and that’ll be saved for another blog though.
Let’s dive into lupus and headache causes.
Lupus Headaches and Neck Pain:
Headaches at the base of your skull can occur if any of the discs between the vertebrae rupture or you get pinched nerves in your neck.
Do you sit all day like me in front of a computer or look down at your phone often? Do you lay down on the couch often? I’m Guilty too.
Even though it took like 10 minutes to finally find a good and comfortable position, our spine, joints, and bones are like,
“WTF are you doing. That position is not natural and is making my vertebrae move out of place and I can’t do my job of allowing spinal fluid and messages move back and forth properly. So now that too much pressure is cooking in one area, you’re gonna feel it #sorrynotsorry”.
So, once that happens, our muscles and tendons are now pulling in one direction too much, causing inner swelling and stiffness. This can cause your nerves to be pinched too.
From there, the inflammation and pain radiate to the back of our head and up to our skull.
Although it may be hard to stand or stay active, even small changes will make a huge difference in our quality of life.
TMJ and Lupus Headaches:
Do you clench your jaw and don’t even realize it? This is a big struggle of mine and a bad habit that I’m TRYING to change.
Are your teeth touching when your mouth is closed? That is a big no-no too. If your mouth is tight or your teeth are touching, you’re flexing the wrong muscles for a long period of time and that causes pain, stiffness, arm numbness, headaches and so forth.
TMJ and Lupus is very common and not talked about enough.
Dr. Steven Lin has some good signs of TMJ:
- Clicking in your temporomandibular joint (TMJ) when you open your mouth or chew
- Stiff or sore jaw muscles
- Pain in the temple or jaw area
- Popping sounds in the ears or earaches with no infection present
- Less range of motion when opening your mouth
Fibromyalgia and TMJ are common too.
Also, not so fun fact. TMJ – gets worse with our monthly flow. Everything is triggered by hormones.
My dentist confirmed my intuition about this and it felt so good knowing the real trigger of all of my and your autoimmune diseases. It always ends up being an imbalance of hormones and poorly regulated hormones.
Estrogen dominance is the root of Lupus and headaches, migraines, and other autoimmune diseases.
Another reason for headaches during this time according to a functional medicine expert Laura Paris, “[during your period] you have higher levels of inflammatory prostaglandins (PG) in your uterine lining”, causing headaches.
Lupus and Headaches because of Dehydration:
Let me guess. You think you drink enough water. How many cups of water do you drink a day?
Unless you’re drinking 100 oz of water a day, it’s not enough.
Especially because we have a chronic disease. Our organs need more water to flush out toxins and keep our cells hydrated so they can work.
Lupus Life Hacks – Get a 24 oz BPA free water bottle and make it a daily goal to drink at least 4 of them. Put some flavor in there to make it easier in the beginning.
It’s not entirely clear why dehydration causes a headache. Some studies have shown that blood vessels in the head may actually narrow in an attempt to regulate body fluid levels. Because this would make it harder for oxygen and blood to get to the brain. Resulting in a headache.
Your 2019 Lupus Checklist will help you communicate effectively at your next doctor’s appointment.
Vitamin Deficiencies and Lupus Headaches:
If your car doesn’t have the right oil, does it work right and last as long in terms of high quality? Nope.
Nutrient-dense foods are far and few between in most of our diets. Unless half of your plate is made up of a variety of dark leafy greens, you’re not getting enough daily.
Most companies like to label their processed food as “healthy”, but if we read the ingredient labels we can tell immediately that it has all been heat-treated and the nutrients have been replaced with nutrient like chemicals. This is connected to our underlying symptoms like the headaches we experience.
That’s where high-quality supplements that have been tested for purity come in handy. The better the quality, the better it works. It’s as simple as that. If your supplements are from your local chain store, it has been chemically and heat-treated, zapping alll of the nutrients out of it. So don’t waste your money anymore!
Some examples of processed foods that seem healthy, but contribute to our symptoms are:
- Dairy products – Yogurt has tons of processed sugar and preservatives. Dairy unless grass-fed and finished will have a lot of hormones and antibiotics so it’s worse for us since we want to avoid those from breaking our immune system down.
- Gluten – It’s lab-created now and our body can’t recognize it as our ancestors could, making our body reject it more often and it causes joint pain, brain fog, stomach aches, and headaches. This happens even if you don’t have Celiacs disease.
- Granola bars – Filled with a tiny bit of granola and tons of fillers and sugar
We have to really put ourselves and our body first.
The only way to see change is to make a change.
Saying no to things that make you feel good at the moment, but hurt you, in the long run, will be the BEST feeling ever when you start to notice the positive change in your mood and health overall.
Another thing to point out is that if you’ve had your bloodwork done, 90% of the time doctors will not test any vitamins and minerals. Which is sad because over 80% of people have deficiencies in at least 1 vitamin or mineral.
They do test them, but you’re a “low normal” and they do nothing until you’re in a severe range. The “low normal” results validate your symptoms because a low normal is not good enough and your body is telling you that. Our bodies work best when in homeostasis or balance. So with a range of 30-100+ is too big and not realistic for how our body works.
This is an easy fix by the way.
Doctors have access to easy fixes and yet they don’t even think about it. That’s because they practice what’s called emergency based medicine or conventional medicine. That means they only pay attention to emergencies. Plus, these types of doctors only treat symptoms and provide a pill or procedure to alleviate symptoms, not to treat and prevent causes of illness.
So, please advocate for your health and ask for these to get checked:
- B12 – Upper quarter of the range. The urine test Urinary Methylmalonic Acid, also called the UMMA, can be added since it is a very sensitive detection and if high, will reveal a true B12 deficiency.
- B6 – According to a research published in the journal CNS and Neurological Disorders Drug Targets by scientists from the Human Genome Center at the University Sains Malaysia, folic acid (vitamin B9) and vitamins B6 and B12 may play a role in migraine triggering and suppression. According to this study, deficiencies in these vitamins can trigger migraines.
- Folate – Standard range is 3-17, so optimal would be at least the top third of that. Higher for MTHFR gene mutation. 50% of the population has this mutation making it almost impossible to use the vitamins we’re taking. However, this is a perfect solution.
- Magnesium – Mid-range or higher.
- Vitamin D – 70-90 is the optimal range.
- Ferritin – This measures the stored iron in the body. The optimal range is between 70-90.
To calculate the mind range: Add the lowest number in range to the highest number in the range. Divide by 2.
Stress and Lupus Headaches:
Stress can flood your bloodstream with high levels of the fight or flight catecholamine hormones: dopamine, adrenaline, and noradrenaline. The adrenal steroid hormone cortisol can go up. These surges can trigger migraines.
Lupus Headache Relief
If your lupus headaches are neck pain related this will help:
Whenever I have neck pain and headaches, this method has been the best because it supports all of my bones and joints from all of my autoimmune diseases (Lupus, RA, psoriatic arthritis, etc)
Instead of taking NSAIDs that break down your stomach lining and hurt your liver over time, I have a natural remedy that is trusted by hundreds of thousands of people.
Glucosamine and chondroitin are used to alleviate pain and inflammation, aid recovery of joint and connective tissue, and stave off degeneration of bones and joints. Glucosamine chondroitin in combination works within 2(ish) hours for pain and inflammation relief.
Long term, it helps in repairing joint tissue, slowing down and/or preventing degeneration. According to research, supplements containing both will normally be in a 500mg/400mg ratio. If you’re on blood thinners or high blood pressure meds, it’s not recommended to take the sulfate form though.
If your lupus headaches are TMJ related, this will help:
TMJ has some amazing at-home massages you can do while sitting watching TV.
Whenever I feel my jaw tightening up or have a headache stemming from my jaw, I do this:
Dr. Steven Lin has some great insight that I’ve found helpful:
1. Progressive Relaxation
This helps in reducing the over-contraction of your jaw muscles.
Clasp your jaw as tight as you can, then allow your jaw to fall open. Keep your hand under your chin and press gently as you open your jaw, then let your jaw relax. Then, move your jaw to the right and relax for a while. Again, move your jaw to the left, then relax.
2. Jaw Stretch
This exercise extensively stretches your masticatory muscles in your jaw that are responsible for chewing and grinding.
Use your fingertips to massage your jaw muscles in small circular motions. Now open your mouth as wide as you can. Hold your stretch for 10 seconds, and then relax your jaw. Repeat 10 times.
If your Lupus headaches are from dehydration or vitamin deficiencies:
Avoid caffeine-based drinks. Green tea, coffee, and matcha are some examples.
If you can’t, make sure to drink water with your coffee to help offset it’s negative side effects.
Did you know in as little as 30 minutes to as long as 3 hours, your body can feel the results of hydration.
Boy does it feel good! You have more energy as a bonus!
Because it can take so long it’s best to prevent it by drinking at least 100 oz of water a day.
If you’re going to be outside or are eating and packaged or processed foods, it may be best to drink coconut water that is not full of sugars and syrups.
The best types of coconut water:
Even if it’s labeled “100% Coconut Water” that’s “All Natural” it could be made from reconstituted concentrate. Just like other juices in the store, they heat fresh coconut water and reduce it to a syrup. It’s cheaper for them to import this coconut water syrup, which they later add water prior to packaging.
According to foodbabe, you should shop for coconut water that has these qualities:
- Young coconuts have the most nutrients, not mature ones.
- Coconut water is very delicate, naturally perishable, and should be kept cold. Never buy it from a shelf.
- It’s been reported that some non-organic coconuts may be preserved for transport to the U.S. by dipping them in chemicals, including formaldehyde a known carcinogen. Buy certified organic only.
If that’s not your thing, my personal favorite is to use ingredient friendly electrolyte powder that are a calorie, carb, and preservative-free!
According to Discovery Health, “electrolytes are important because they are what your cells (especially nerve, heart, muscle) use to maintain voltages across their cell membranes and to carry electrical impulses (nerve impulses, muscle contractions) across themselves and to other cells.”
Your kidneys work to keep the electrolyte concentrations in your blood constant despite changes in your body. For example, when you exercise heavily, you lose electrolytes in your sweat, particularly sodium and potassium.
The best types of electrolyte:
- Don’t use food coloring or dyes (red #40, blue #1 etc). They use fruit extract instead.
- Include sodium, potassium, chloride, and magnesium
- < 1 gram of sugar or carbs
Complex B vitamins (includes many B’s all in one)
This includes B6, B2, and folate (safer version than folic acid). B deficiency or low normals can cause horrible headaches!
Vitamin Bs, especially B 12 is essential in preventing anemia and it’s symptoms. Often, people with lupus have this issue and it contributes to the tired and weak feeling and headaches associated with it.
- Vitamin B6 blocks the toxic effects of certain drugs and chemicals that cause lupus symptoms, so if you’re on medication, or being weaned off it, supplements can help to ease symptoms.
- B vitamins provide energy
- B vitamins are fundamental to life, as humans cannot make them and thus must be obtained by diet and supplementation.
Magnesium is arguably the most important mineral in the body, which is why magnesium deficiency can be such an issue. It’s actually a really common deficiency, more than most physicians believe. Did you know 80% of people have this deficiency?! Since we take meds that deplete our system of nutrients, we’re most likely one of them.
Magnesium can prevent muscle cramps, migraines and headaches, fatigue, help our smooth muscles (heart) function, and it helps relax us too.
There are 6 different kinds of Magnesium. This one seems to be the best in terms of quality and ability to work well.
We all have low normal or are very deficient in vitamin D. Are you taking vitamin D supplements that your doctor prescribed?
That kind is called D2, which is a lab-made chemical that is almost identical to the D3, bioavailable or natural version that our body can absorb. That’s why you never get better because it doesn’t work well. Even if your blood work is improving, you still may be feeling symptoms because your body isn’t using it, it’s just circulating in your blood.
If you’re having dizziness associated with headaches, it could be your iron levels. The lack of hemoglobin means not enough oxygen reaches the brain, causing its blood vessels to swell and create pressure. Plus, low oxygen delivery to the brain compromises the energy that your brain can use and may exhaust you mentally and physically.
Get your levels checked and start preventing lupus headaches.
If you think your headaches are stress-related:
A thorough way to find the trigger and prevent it is to test your adrenal steroid hormones (cortisol and DHEA) levels and fluctuations with the Dutch adrenal test.
Then work with a practitioner to get your HPA axis (adrenal-brain communication) in order. This will make a big difference, and help you be more resilient to stress. Laura Paris has some good insight on this.
What are you doing to do to prevent your headaches now that you know what the cause is?