Dysautonomia and Chronic Migraines - anyone relate???

[Knellie]

     In August 2018, I started getting headaches pretty often. I was a little concerned but didn't think much of it. These headaches soon progressed into every afternoon, and then everyday all day. These headaches started shortly after I had gotten glasses, so we got my eyes checked several times, and every time the doctor would just say, "Kids get migraines!". I was frustrated, so I took a different approach, which was going to an ENT doctor. I had developed symptoms of chronic dizziness and I was always tired, my feet were always purple and cold, and I was always sweating for no reason. and so the doctor ordered an MRI to check for tumors, sinus problems, and inner ear problems. My MRI came back normal, and then I was really puzzled. We went to my PCP who referred me to a pediatric neurologist. It was there I got diagnosed with Chronic Migraines. She didn't give me any medications, but just told me to drink more water and eat more salt. I tried that for months, drinking 144 oz of water everyday and putting salt on every meal, but there was no effect. I had a follow up with her and they just told me the same thing. We mentioned our concerns about me maybe having POTS, so I was referred to the pediatric cardiologist at that hospital. He said that I had the postural orthostatic part, but not the tachycardia part when I stood up. But I do usually have a resting heart rate between 85- 110. He also told me to drink more water and eat more salt and then referred me to a pediatric physical therapist to help me exercise again. Although I have answers to why I am dizzy and have cold, purple feet, something tells me that chronic migraines may not be the correct diagnosis. I don't have light sensitivity or sound sensitivity. I have had three "migraine attacks" where I get an aura and can't read, but that was only a couple of times. I really don't know what to do. I have been on amitriptyline and propranolol, which didn't help anything so I stopped using them. I am thinking of getting my intracranial pressure checked, to see if it is a headache of that sort. My vision started going down hill around the time my headaches started, and I just had to get a higher prescription this year. Pain killers worked for my headaches in the beginning, but now they don't help at all. My physical therapy makes my headaches a million times worse as well. I am really confused and don't know what to do. Has anyone had a similar experience? I don't know if my headaches are related to the dysautonomia.

[MomtoGiuliana]

Welcome to the forum.

Headaches can be a part of dysautonomia.  I get episodes of headache that can last for days, but not an aura, or anything that suggests migraine.  I've been told they are tension headaches.

You can search for "migraine" on the forum to find past discussions.

There have been a lot of past discussions on this topic.

Here are a couple that may be helpful:

https://www.dinet.org/forums/topic/27750-occipital-neuralgia-vs-migraine

https://www.dinet.org/forums/topic/25786-horrible-migraine

[Guest KiminOrlando]

I get migraines. I have yet to find a solution. I think it is fairly common. If I ever get an answer I will post it.

[sfthriller]

I've had POTS since December 2011 and have had headaches every single second of every day since then.  The location of the pain and intensity of the pain changes by the second.  Sometimes they're unbearable, sometimes mild, sometimes the pain is super intense all day long.  Like you I also have extremely cold feet.  I wear very thick wool socks all year long.  I do have tachycardia.  At one time or another I've tried the drugs you have tried.  And like you, nothing worked.  I've tried migraines specific meds like amovig and nasal injections.  

As for exercising I can really only do a recumbent bike.  My goal is usually 45 minutes, sometimes I can do that with little rest, sometimes I'm resting every 5 minutes.  Sometimes I can't do more than 10.  When I started on the recumbent I'd do 10 minutes, then moved to 15, and so on until I could 45 minutes with little to no rest.  I don't exert myself too much.  Oh and swimming I've found is really good.  I have significantly less discomfort swimming than any other form of exercise. 

Wondering if your headaches are worse standing?  If so, that might help explain why you feel worse exercising.  My tend to be, so one theory was that I had a spinal fluid leak.  several blood patches, MRIs, CT scans, and a MRI myelogram later, it was determined I do not have a leak.  But a small spinal leak could be causing your issues. 

The only thing that has ever really helped was IV fluids.  For the last 9 years I've been drinking as much water as I can and increasing my salt intake like crazy.  The IV gave me several hours of relief (not 100% better, but I could function so much better).  So if your local doctor can give you an IV of fluid (saline) that may help.  It seems to get better each time so maybe see if you can do it 2-4 times within a months time. 

I've tried so many things, so if you have more questions feel free to ask. 

[Pistol]

@sfthriller - a couple of things you mentioned in your post made me suspect your problems with headaches could be from excessive vasoconstriction. You mention cold feet, tachycardia, headaches worse with standing and improvement of headaches and POTS symptoms from IV fluids.  This sounds like vasospasms to me. --- I have Reynauds syndrome in my feet as well ( constantly cold feet ), have HPOTS ( caused by blood vessel constriction due to sympathetic overcompensation ) and have Prinzmetal angina - chest pain caused by sudden and severe vasospasms of the coronary arteries. I also have high BP from the HPOTS. 

The reason I find this relating to you is that many people with HPOTS also suffer from migraines, and these often are due to vasospasms as well. In my case it is coronary arteries that spasm - in your case it COULD be the vessels in the brain? In my case when my brain vessels constrict they do so very suddenly and severely and I have seizures from this. It could be that you suffer from just constantly constricted vessels, like you do with your feet. 

What has helped me a lot with the excessive constriction is calcium channel blockers, as they work by dilating the vessels. And i have a port and get IV fluids several times a week at home. The fact that you respond so good to IV fluids also points in the direction of excessive vasoconstriction. The IV's not only provide volume but they also create a steady pressure in the vascular system, therefore counteracting the ANS's urge to constrict. It is essentially like running water full force through a pinched hose - this can "unpinch" the hose. 

Have you ever tried calcium channel blockers? Also - what helped me was nitro glycerin patch, it also relaxes blood vessels but i had to stop it b/c it dropped my BP too low. 

[sfthriller]

@Pistol Thanks for the info.  First what's HPOTS?  I googled it and nothing shows up.  

Vasospasm marks lots of the boxes for me.  I'll run it by my doctors and see if I can get some tests done.  I've had several scans and some vascular scans (those were years ago) and everything normally comes back normal.  

I have not tried calcium channel blockers.  I have pretty low blood pressure as it is.  Gets lower when I stand.  So that probably wouldn't work for me. 

My doctors have talked about ports but are weary because of the potential for infection.  How long have you had a port?  How often do you replace it?  Have you ever had any issues with infection?

[Pistol]

2 hours ago, sfthriller said:

First what's HPOTS?  

@sfthriller - HPOTS is short for hyperadrenergic POTS, excessive sympathetic activity causing high adrenaline levels. 

2 hours ago, sfthriller said:

 I've had several scans and some vascular scans (those were years ago) and everything normally comes back normal.  

You would not be able to see vasospasms in a scan, my coronary spasms were found during a heart cath and the spasms in my brain that cause seizures were caught when I passed out during an EEG. 

2 hours ago, sfthriller said:

My doctors have talked about ports but are weary because of the potential for infection.  How long have you had a port?  How often do you replace it?  Have you ever had any issues with infection?

I had my first port put in 2 years ago and my symptoms and high BP have GREATLY improved. A port usually lasts 5 years but I just had my third one b/c the first one was put in crooked and had to be replaced and the second one ended up getting pinched off, so I had a third one placed this month. Thsi is highly unusual, though, most ports are good for a long time. The needle and dressing get changed once a week by a nurse that comes to my house ( I am homebound ). Most docs do not want to consider a port b/c there ARE risks associated. But I am a very strange case and am medication refractory as well as I kept passing out and taking seizures and all of the falls caused a risk for injuries ( which I had a lot ). Since the infusions I rarely have those episodes anymore. Before the port I would go to an outpatient clinic to get weekly infusions, some clinics or urgent care centers or infusion centers do them on a outpatient basis. They stick a needle in your arm and remove it when you leave - that may be a better idea if you consider trying infusions. 

Regarding infection: no, I have never had any infection from my port, neither have I had a blood clot. And I really put my port to use! 

[Knellie]

@sfthriller - Thanks for your response. Your headaches sound a lot like mine. I am wondering if you have had a spinal tap before. I am wondering if my headaches are caused by high/low intracranial pressure. Do you think I should ask my doctor about it?

[sfthriller]

@Knellie I've had four spinal taps, maybe more (and several blood patches in attempts to find/fix a leak).  My pressure is usually normal but I have high protein levels every time.  No one can figure out what that really means.

 I think it's worth asking your doctors.  I was seeing a doctor at Stanford whose specialty is fixing spinal leaks.  He treats a lot of patients who were incorrectly diagnosed with POTS when in actuality they had a spinal leak the whole time.  This is a video of him talking about that, it's a long one. 

 

[Knellie]

@sfthriller - Thank you so much for the video! I think I will bring this up with my doctor. Thanks everyone for your replies!

[yogini]

I think chronic headaches are an extremely common symptom of dysautonmia.  You can get a headache if your blood pressure is too low or too high and that is the most common cause.  Headaches can also be a side effect of many of the POTS medications.  Of course there can be other co-condtions with dysautnomia which also cause headaches.  So it is a bit hard to determine the cause!  

When I got or get flares I sometimes had a headache or migraine for 2-3 days in a row ad there was nothing I could do but stay in bed all day. I found my headaches almost totally went away when my other symptoms started to feel better.

[misseb]

This is interesting as I was just looking here for migraines. When I have "overdone it" food wise, am stressed or simply try to do too much I have a 24 - 48 hour attack and get slurred speech, am very unstable on my feet, have very slow response times, drop things and am very light sensitive  - but all without a headache. All POTS specialists I have mentioned this to say these are not POTS symptoms. I wonder about the autonomic link and migraines symptoms. 

Typing this with one eye closed feel exactly as above. YAY.

[Pistol]

12 minutes ago, misseb said:

When I have "overdone it" food wise, am stressed or simply try to do too much I have a 24 - 48 hour attack and get slurred speech, am very unstable on my feet, have very slow response times, drop things and am very light sensitive  - but all without a headache.

@misseb - I get these symptoms when my POTS gets triggered and in my case these symptoms are triggered by cerebral hypo-perfusion ( not enough blood flow to the brain ). For me this is due to either constriction or dilation of blood vessels, causing not enough blood to reach the brain. The symptoms are generally considered as presyncope - near fainting. And yes - they can last hours and even days, whereas most physicians think of presyncope a temporary state. 

 

16 minutes ago, misseb said:

All POTS specialists I have mentioned this to say these are not POTS symptoms.

My autonomic specialist has explained this mechanism to me and IMO these are totally POTS related. 

[Amyschi]

Can I ask when you get these POTS flares and probable associated presyncopal or hypoperfusion symptoms, are they accompanied by extreme weakness way over your baseline?  Sometimes when this happens, I literally feel like it could be an emergency or I may be dying, that there must be something else happening .   But I am 61 (did not develop dysautonomia symptoms that were more severe until my early 50s; had chronic dizziness following a virus for 35 plus years and CFS/fibromyalgia).  I know that sounds dramatic, but it is to that intensity, almost unable to get out of bed and walk.   However because it has passed several times, figure it must be part of the dysautonomia picture.    I personally think that many symptoms occurring together somehow must create the "perfect storm?"   Unfortunately, I know that most of you who deal with this are younger.   Scared to death too of the COVID, or any virus for that matter.  Can't imagine dealing with that on top of the issues we already have.   Praying for all at this time.

[Pistol]

20 minutes ago, Amyschi said:

Can I ask when you get these POTS flares and probable associated presyncopal or hypoperfusion symptoms, are they accompanied by extreme weakness way over your baseline?

Yes - I get too weak to get up, and very very fatigued - at the same time wired. 

20 minutes ago, Amyschi said:

I know that sounds dramatic, but it is to that intensity, almost unable to get out of bed and walk.  

I am literally unable to walk - I have to CRAWL to get to the bathroom during those spells.

20 minutes ago, Amyschi said:

I personally think that many symptoms occurring together somehow must create the "perfect storm?"

To me it is more that certain triggers create the perfect storm of symptoms!!!!

[Amyschi]

Thanks Pistol!  So sorry you experience this also, but glad to know it can be part of the picture.  I totally agree that the trigger creates the storm of symptoms, but it seems that the more symptoms you are trying to juggle and the intensity of those symptoms, the worse the flare.   Like you were saying with your seizures and/or fainting spells - so glad you are doing better with that aspect at least with the IV fluids.   Take care.