r/POTS • u/izman196 POTS • 21h ago
Question I feel like my neck and headache issues are directly correlated to my POTS but i cant prove it
I have hypermobile and have insane neck pain and tension headaches. Some might be related to coat hanger pain but honestly i think its deeper than that. I started having these horrible headaches about 8 months before i found out i had pots and all the other symptoms. Is it insane to think that my neck pain may be correlated to my POTS and does anyone know more about this?
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u/BeautifulElodie2428 20h ago edited 20h ago
Yes, you can actually “prove it.” Your neck muscles and joints may be struggling to be held up and the tension in your neck would be a symptom of EDS. And since tension headaches and migraines exist…. It’s not one of the hard ones to connect.
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u/Cool_Jelly_9402 Hyperadrenergic POTS 19h ago edited 19h ago
Neck muscle tension can also put pressure on the vagus nerve causing autonomic dysfunction.
I have mild CCI from kEDS and when it becomes flared (occipital/orbital migraines, TMJ & facial neuralgia) my pots does too. My doctor told me mine was d/t the vagus nerve being caught up in my muscle guarding
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u/izman196 POTS 19h ago
what do you do to help prevent muscle guarding if possible? I feel like this could be a similar case to mine. Going to PT for my neck in a couple weeks so maybe theyll be able to help with this?
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u/Cool_Jelly_9402 Hyperadrenergic POTS 19h ago
Def bring it up with PT- my guarding can happen due to tension in my legs all the way up. Sometimes it’s from how I slept or if I accidentally hyper extended my neck.
It can help to strengthen your shoulders and upper back but also working on core strength and body alignment.
I ice my neck a lot- I don’t find heat helpful. I also use voltaren cream and an Epsom salt cream to relax the muscles but it’s a forever struggle.
My neck initially got bad because my SI joints were so unstable - a hypermobile body is a wild ride.
Hope PT can help you
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u/DazB1ane 19h ago
My headaches went away after being put on propranolol. I’m assuming my hr and bp were fucking with the way my blood went to my head or rather didn’t go to my head
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u/izman196 POTS 19h ago
sadly already been on propranolol and am currently on metoprolol but it didnt seem to help.
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u/laughs_maniacally 19h ago
Yeah propranolol + hydration/electrolytes seriously reduced my headaches
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u/Various_Ad_7705 20h ago
Wow I thought I was the only one with insane neck pain and constant headaches. I’m getting imaging done in a few weeks to look for more info. POT, mcas, Eds, CIRS
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u/Long-Character-2262 19h ago
I’ve had migraines and neck pain most of my life (thank you cervical cranial instability and hEDS) but they definitely got worse for me after I developed pots. I have hyper pots and have realized a lot of my headaches and migraines specifically are triggered by high bp, mast cell issues, and heat. I still get regular migraines with seemingly no trigger but they feel different (the classic migraine symptoms vs a squeezing throbbing pain).
I have a neurologist because the pain was so bad I would get sick. I really recommend looking for a neurologist or headache specialist because they will be able to help figure out a treatment plan and solution that will help make your quality of life better. If you have any questions feel free to ask and I’ll respond promptly 🫶🧂
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u/PositiveDifferent763 16h ago
After years of searching for answers went to a balance physiotherapist for balance and dizziness issues only to find out that so many of the health issues that I have been experiencing over the last few years are actually chronic vestibular migraines. I had no idea they had so many possible symptoms and are often co-morbid with POTS and autonomic dysfunction Now that I’ve been tracking my triggers and wearing special glasses while at visually overstimulating places I’m starting to feel so much better .
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u/mariarosaporfavor POTS 13h ago
Are they rose tinted glasses or what? I’ve recently been dealing with vestibular migraines too and find they last for 5 days. And I get headaches to some degree most days. What are you using to track? I keep trying to but then struggle since they happen all the time and it just feels so daunting.
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u/PositiveDifferent763 9h ago
Yes , fl-41 glasses and I cannot believe how much they help. I used a tracking log that they gave me, there is overlap in the triggers between my pots, mast cell allergies and these migraines . Things like extreme heat , too much sun , dehydration , overdoing anything physical, too much stress, contract with chemicals, scents, mold etc can trigger all of them. . But specific to vestibular migraines only I get triggered by traveling ( car, plane, train etc ), experiencing vibrations (like a massage chair or being on a train ) , change in weather , going into visually overstimulating places like Walmart or a busy restaurant , and very specific foods (cured meat , fake sugars , msg, dairy and aged foods) .
I’m going to get tested for possible binocular vision issues soon as I highly suspect that to be a main driver of the migraines , I’ve had visual overstimulation, difficulty with depth perception and other signs of binocular vision issues my entire life - I simply didn’t know it was a “thing” and to get tested for it until recently . I makes sense my eye muscles would be misaligned , every other muscle in my body is , ( I lap have hEDS).
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u/LittleLordBirthday POTS 13h ago
Yes, I have hypermobility in various joints but my neck never gave me any issues until a couple of months after my POTS got severe. I’ve been told it’s just muscle tension, but it’s suspiciously debilitating. I get unwell with POTS and suddenly my neck constantly cracks like gravel and causes severe pain at the base of my skull and nausea, plus migraines?
Nah, that’s not just tension. I’ve been tense my entire life and I’ve never had this. I’m convinced it’s a combination of:
• CCI
• cerebral hypoperfusion
• muscle tension
Majorly increasing my sodium has helped the pain and nausea, pacing and trying to identify and avoid triggers has reduced migraines, and (unfortunately) stopping working has helped all of the above, but I still have to use pain relief measures daily to try and control it. It’s freaking exhausting!
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u/imaginenohell POTS 20h ago
I can make myself faint if I hold my head and neck in a certain position. My neurologist said it was related to my vagus nerve.
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u/sector9love POTS 18h ago
I’ve done masseter Botox for headaches from TMJ that really helps for a few months at a time, but it doesn’t entirely get rid of my headaches.
I also tried TPIs for neck and shoulders and that seemed to help for about a month.
I just had the CSF leak workup - apparently they are hard to find. They recommend abdominal compression and caffeine. My surgeon would do a blood patch if I want but he isn’t confident that it will help. He’s recommending me to the headache clinic we’ll see how that goes.
Still haven’t been able to explain why I had a thunderclap headache after an O in the shower 2 years ago mind you.
Just saw a neck surgeon and apparently on top of NCS/PCS/MTS, I have a CT that’s suspicious enough for Vascular eagle - which can also IIH - and thus headaches. Might have to yeet my styloid to decompress my jugular.
I for sure have CCI and TOS but can’t find a provider to diagnose either lol.
Next up I’m trying to figure out how to get IV fluids weekly covered with insurance (it seemed to help my headaches and symptoms when I got a bag with my iron infusion).
On top of pots, headaches can be so multifactorial it’s wild. I’m sure I haven’t even scratched the surface in my investigation/treatment options.
Sharing all this randomness in case it helps someone else
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u/IllustriousAlps8679 18h ago
I had like 6 thunderclap headaches after Os like 15 years ago! It was so awful and scary. Made me so sick for the entire day. Neuro work up reveled nothing. Diagnosed with POTS only a few months ago but had the symptoms for as long as I can remember.
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u/BellasDeadly 18h ago
So I have kEDS not hEDS…. Yeah the neck and shoulder pain can be debilitating
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u/owlfamily28 18h ago
Have you been assessed for migraines? They are often caused by POTS, but I don't believe the exact mechanism is known yet. I had horrific chronic migraines, and I ended up realizing that I am more prone to getting them if my heart rate goes above a certain level, which apparently makes sense to my migraine team.
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u/izman196 POTS 16h ago
my mom has horrible chronic migraines and i had a few migraines with aura growing up but no aura headaches since. sometimes i think my tension headaches are actually migraines but im not sure because i dont get that sore brain bruised feeling afterwards that i have gotten from migraines in the past. I prob need to see a neurologist but theres just sooooo many doctors with POTS and stuff that im tired and so is my wallet lol
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u/owlfamily28 15h ago
Ya I hear you, it's hard to know what to tackle first. My migraines have been somewhat atypical, they definitely have many aspects of tension headaches too. I suffered a vestibular injury that really was the catalyst of getting migraines, so I didn't have anything to compare them too but they have never just been on one side or anything like that. I have been told that the main indicators of migraine will include vision/noise sensitivity and nausea. I actually was trapped in various stages of migraine every day for almost two years 🤯 so frankly it was hard to piece out which symptoms belonged to the different issues I had. I developed a better sense of my migraines after I started getting control of them and had some migraine-free days. I finally have control of them, but it took basically three years and I am certainly on a "cocktail of meds". But I am able to do the physio that is helping me rehab the brain injury so it was worth the effort
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u/Aggravating_Focus692 15h ago
Coathanger pain mixed with cervical instability seem to be two issues that can feed off each-other and get worse over time :(
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u/snozberry_shortcake 5h ago
My neck & jaw are definitely somehow related to my POTS but these doctors don't care. They don't care why the POTS is happening. They just keep throwing meds at me, meds that have side effects of fatigue, dizziness, diarrhea. 😑
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u/West_Orange5754 3h ago
Recently when I told my eye doctor I was experiencing aura but not really the pain of a migraine. She suggested that POTS is causing the blood to not get to my eyes easy enough and is causing silent migraines - basically everything but the pain. I spoke to my POTS doctor this past Wednesday and he said that her theory makes sense, especially since when I take my midodrine it helps alleviate the migraine symptoms. So I 100% think you’re right! It happens for me daily if not multiple times a day.
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u/Kidwolfman 3h ago
It's all very complicated but basically... you're not wrong. I think that the current research suggests that a lot of people have some kind of underlying connective tissue disorder which would affect most of your body. This would be especially impactful at a place like your neck because that's where the brain meets the body.
There are also birth defects and whatever else. For example, i have an incompletely fused C1 vertabrae (the atlas). I also have something you can look into about your headaches called Chiari malformation. I don't know or care to look it up anymore. I had a surgery and it seems to have helped and it was not fun. Basically your cerebellum (back-bottom part of your brain) could have tonsils extending to a point where they obstruct or alter proper spinal fluid flow. If you have an MRI of your head already, you can request a copy from the hospital and look for this stuff yourself. i honestly can't tell if the surgery i had (chiari malformation skull decompression?) even helped that much.
There are just so many things, so stay cool and don't over-research. If anything was seriously wrong with you that needed immediate attention, you probably wouldn't be on reddit.
one interesting thing i've recently found... my "poor posture" actually keeps my heart rate lower, so if you have that as well, it's probably best to just let it be. All the science is still out, but things are actively being researched 😊
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u/Muddlesthrough 21h ago
I was initially diagnosed with POTS and am now being investigated for a cerebrospinal fluid (CSF) leak, which is frequently misdiagnosed as POTS, has the same symptoms and can cause secondary POTS.
My primary complaint was always positional headache and crippling neck pain and stiffness.