Headaches and migraines

[jklass44]

Does anyone get headaches and/or migraines as a symptom? I get headaches to varying degrees multiple times per week, and then a migraine usually once every 2-3 months or so. The headaches run from the top of my head down to my neck and shoulders. The migraines leave me quite debilitated for a couple days. 

I have never been able to find a link to what's causing them. I'm not dehydrated, they don't link up to my time of month, and no amount of Advil or Tylenol will help (which is weird because I'm usually quite sensitive to medication).

Anyone that's been able to combat these annoying symptoms id love to hear some tips or tricks! I'm about ready to just stick my head in the freezer and leave it there 😅

[KnickKnack]

I have very frequent headaches and migraines too and have also wondered if they're connected to POTS. I feel the pain all through my shoulders, neck, and head. 

For me, they seem to be connected to the quality of sleep I'm getting, as well as the weather. I have many more migraine/headache days in the spring and summer and once had a migraine that lasted almost 2 weeks!

Painkillers work some times for me and other times do very little. But what I've found does help for me at least a little is doing stretches to loosen up my back and neck muscles. Do you feel tension in your shoulders/neck when you get a migraine? Like maybe the muscles are too tight and triggering it? 

I know how frustrating dealing with these headaches can be. Hope you find some relief.

[jklass44]

@KnickKnack I'm sorry to hear that you have to deal with these symptoms as well! It definitely sucks and very frustrating. 

I do feel tension running along my neck and shoulders for sure, but that's really nothing new for me. I'll keep that in mind though and maybe try some stretches or warm/cold packs. 

[Pistol]

Hi - I am fortunately spared the headaches but I know that frequent headaches are a common sign of POTS. My mother and sister have POTS as well and my mother had migraines all of her life. I only have frequent pains in my neck and shoulders that sometimes extend across my head nut I would not call them headaches. They are - however - worse when my POTS symptoms flare. -- Not sure if this info helps. Sorry you are having a tough time. 

[firewatcher]

Migraines are also an autonomic nervous system disorder. My POTS flares when I get them as well as single eye tearing, stuffy nose, balance issues, GI issues, temperature dysregulation, etc. The pain in your neck and shoulders is also very common in migraine, frequently the first symptom (like an aura or yawning.) Sleep, dehydration, blood sugar, stress, stress-let-down, weather, food....all triggers. I actually found that I craved several of my worst trigger foods before migraine (Kombucha, eggplant, orange juice...) I respond (somewhat) to triptan medications and sleep, but it takes several days for the rest of my body to reset: I know the migraine is over when I get diarrhea, it means my GI tract is working again. High histamine foods and nitrates (like in lunch meats) are known triggers. Your doctor may have to prescribe several different triptans before you find one that works for you, but they help tremendously. 

I hope this helps...migraines suck!

[Guest KiminOrlando]

I use Excedrin Migraine for my headaches. It works for me, usually, except for the actual migraines. I take it for those too because that is all I have, but then I go to my bedroom, make it dark and quiet, and try to wait it out. I try breathing exercises and sometimes they lessen the pain. Sometimes nothing helps. 

I hope you find something that works for you. Migraine pain is horrible. 

[jklass44]

Thanks for your replies everyone, I really appreciate it!! 

@firewatcher That's interesting about the high histamine triggers I never actually thought of that, I'll have to keep an eye on it for sure.

[GasconAlex]

Can't say I've had migraines but headaches are permanent. I get headaches from being vertical so am on tramadol slow release constantly, if I have too much vibration the headaches increase to a level where I have to lie down and keep my head very, very still for 24 to 36 hours. This helps along with the extra tramadol, acupan (nefopan) and paracetamol. Normally at these times I throw up, which means I take primperan (metoclopramide) for the nausea. The only thing so far that has had an effect on my headaches was a blood patch which worked perfectly for 36 hours. I'm stuck in an area where I am not sure if the headaches are the cause of the dysautonomia or the inverse.

[bombsh3ll]

Yes I was actually going to post about headaches myself to compare experiences! I had only had about 2 headaches in my life before getting POTS at 34, and since then I've had constant headaches. I wouldn't describe mine as migraines as they are generalized not unilateral, and not associated with any visual or neurological disturbance. They are definitely postural ie present when sitting, worse if I stand although I can't do that for long, and relieved by lying down. My neck is also painful. 

I believe in my case they are the "coathanger pain" described in dysautonomia due to hypoperfusion - any body part starved of an adequate blood supply is painful. 

I do have EDS and saw Dr Gilete in Spain who thought they were related to cranial settling and cervical instability - this would also be relieved by lying down as the force of gravity is removed, and would also be exacerbated by vibration/going over speed bumps etc which mine are - however 2 other opinions on my upright scans say no cranial settling, no marked instability and one mentioned only very mild tonsillar descent, not obstructing CSF. 

Also at times when my POTS has been better such as when I first started Licorice Root and it worked like magic, the headaches were relieved, which implicates hypoperfusion rather than structural problems as the cause.

For pain relief I take codeine, which I try to use sparingly due to sluggish bowels, and I take regular ibuprofen three times a day anyway for volume expansion & to minimize postprandial symtom increases. Paracetamol alone does nothing for me but it does help boost the effect of the codeine. 

B xxx

[p8d]

I get the coat hanger pain badly and exercises that stress my neck/shoulders make it worse.  Heat, hours of it, help loosen the muscles along with massage at PT.  I have a prescription for Fioricet for when it’s really bad.  I also have a bulging disc in my neck.  I get true migraines if I don’t sleep well or the weather is hot and humid and when I was premenopausal severe ones with periods.  The monthly, really severe ones stopped with menopause.  I am allergic to NSAIDs and my Dr won’t prescribe opioids so am very limited in what I can do. I also have Raynaud’s so Tristan’s are out. I have an IceKap https://www.icekap.ca/ that helps.  I like it because it has a pack for the back of the neck.  I generally stay in a dark room with quiet as much as possible.  @bombsh3ll what do you do for hypoperfusion and coat hanger pain?

[Lily]

I get migraines, but I have never though of them as related to POTS.  They are triggered by weather, specifically certain frontal boundaries and storms but not all of them.  I used to have them several times per month, but I have had only 1 or 2 per year since starting Magnesium oxide (400 mg/day) and Vitamin B2 (also 400 mg/day).

[StayAtHomeMom]

I don't get many headaches anymore but when I do they are rough. It seems like most medication doesn't touch it. I usually have to take motrin or excedrin migraine and go to sleep. I have never noticed a trigger. I just kind of deal with them. 

My oldest son (who I suspect has POTS as well) has almost daily headaches. He hates to take medication. He only takes it when it is awful and then lays down. He says the medication makes it less but never seems to get rid of them completely. This is going on 3 years now. ENT and allergist says it isn't his sinuses. And his headaches change location or are all over.  Not sure why he has them. He just shrugs them off now and says I am used to it. Definitely a tough kid. 

[Weary]

Anyone also get visual auras? with my dysautomia onset, besides heacaches, every single night during sleep if i awaken at any pont (often), i have a visual aura in both eyes. parts of it look classic, like some sciniallatio,but other parts do no- negative circular scotoma that pretty much stays put, though maybe grows in size.

interesting that migraines considered auto dysfunction.

don't forget to see if tyramines are a trigger for you, not just histamine. they are for me, but its super extreme for me now. oh, and oreo cookies gives me major visual auras. most fascinationg.

i get all the auras described by the person above- dizziness etc.

[statesof]

Hi @Weary I do get some of the visual auras you mention, most times preceding a headache but the ones that are negative circular and stay put I've had a few times in my life; my doctor said their ocular migraines. I don't get a headache with them, they just block out part of my vision and may last 15 minutes or so.

@jklass44 My migraine triggers turned out to be nitrates which are in a lot of foods, but also weather, psychological stress/ overexertion and sleep changes will set of migraines for me. Basically cutting out those foods, going to be and waking up around a similar time each day, eating relativity clean, and not overdoing it on computer/ tv screen time when I feel particularly 'migrain-ish' with my vision.

[DizzyGirls]

There were no rhyme or reason for my migraines until I had hit 40, then they were hormone related.  Fast forward 12 years and now it's anyone's guess why they appear.  The triptan drugs don't work on me.  I use an old drug called Fioracet.  Works like a charm!  I can actually function on them.  I've had migraines send me to the hospital, so some of them were exceptionally bad, most were just your typical migraine (dark room, quiet, sure your head is going to crack in half).  I don't have POTS, still undecided about EDS.  My daughter, however, has EDS, POTS, newly diagnosed with Hashimoto's, tons of knots in her upper neck and shoulders.  Most of her migraines seem to be related to her POTS, but she can develop pseudotumor cerebri and that brings them to a whole new level.  We are at about that point right now.  She will most likely need a lumbar puncture to reduce the spinal fluid pressure.  The migraines are constant, as is the vertigo, pressure in her neck and eyes.  A fast acting headache doctor she saw a couple of times a few years ago, recognized the symptoms and rushed her in for a CT guided (due to past surgery and scar tissue) lumbar puncture.  Hers had gotten so bad, that her vision was blacking out every so often.  It had caused inflammation in the optic nerves and optic disks of both eyes.  So, you might want to present this to your neurologist if you have an increase in migraines.  You can lose your vision from it. 

[p8d]

@Wearyin my pre-POTS, pre-menopause days I always got auras before migraines.  Several different types.  I still do get them before migraines but not always.  I take fioricet as soon as I get one.  Sometimes it helps sometimes it doesn’t.

 

@DizzyGirlsthat’s truly frightening.  Your poor daughter.  I have terrible knots in my shoulders.  My PT is surprised how bad they get.  She suggested a hand held massager to work them out.  The big ones you drape over your shoulders are too strong for me.  I am finding it very helpful.  I like that I can control how hard it massages.  I got one that has multiple speeds.  I also am using Penetrex, a topical anti inflammatory which seems to help too.