postural headache

[GardenGal]

Do others have postural headaches? Mine start if I sleep in to late or lay down in the day: excruciating headache when sitting or laying down and goings away or is much improved within a minute of standing up... Well those of you with OI know how well that goes over. I'm jumping up and sitting down like a jack-in-the-box. Can't breathe and pre-syncopal on my feet, terrible pain sitting down. Anyway, I've been messing with my medications to see if any of them are contributing, especially the mitodrine and desmopressin. Thoughts? Have others not here found them contributing to these types of headaches?

[DizzyGirls]

My daughter couldn't take midodrine, caused too many headaches.  Has a lot of migraine trouble to start with.

[bombsh3ll]

That's the opposite of what I have - I have headaches upright that are relieved by lying down! I attribute this to cerebral hypoperfusion. 

Headaches that are worse lying down and improve when upright can sometimes indicate raised intracranial pressure. As you are on desmopressin this is worth discussing with your doctor.

 

[Guest KiminOrlando]

Midodrine caused headaches in me that were so bad all I could do was curl up in my bed in a dark, quiet room and hold my head with my hands. I decided I would rather randomly pass out if these were my choices.

[Jan]

I don't think you are supposed to lie down on Midodrine?  I ended up in ER getting a shot of pain killer in my buns the headaches were so bad on that drug. 

[GardenGal]

thanks guys. Appreciate the feedback. I do get headaches from the mitodrine, and am sorry to hear others have had such bad experiences KiminOrlando and Jan, and DizzyGirl's daughter. For me the mitodrine headaches are migraine-like. My cardio said it was OK to use it intermittently so I use it when I go shopping or something to make it through the standing, not taking it all the time. The postural headaches are happening when I'm not taking it actually and I wonder if it's rebound??/. Yes, I've wondered about the desmopressin and ICP stuff too, but my doc kinda scratched his head when I tried to talk to him about it (thanks for affirming that this concept is not nuts Bombsh3ll :-). The postural element of it really scares me, so the last week or so I've backed off on the desmopressin, but my other symptoms have gotten worse. hmmmmmm what to do? 

On a brighter note, it was SUNNY and warm today, and I had a blast watching my kids ride their bikes! 

[Missy M]

I got daily migraines from laying down for 1 1/2 years. Here’s what I found that helped me:

1. Sleeping propped up on a wedge pillow bought me more time asleep before the headaches would wake me. 

2. Upon awakening, pedaling non-aerobically (in “slow motion”) with a floor pedal exerciser while seated in a chair would typically resolve my headache in an hour or two. Using caffeine (coffee, which my doctor okayed for me) while pedaling helped. As a bonus, it would stabilize my heart rate and blood pressure for as long as I pedaled. I’m guessing (without knowing) that perhaps it “unpooled” the blood in my lower legs. 

3.  I’m not claiming this would work for others but my daily migraines surprisingly went away when I went on a moderate ketogenic diet. I went moderate to avoid the dizziness, etc. that people often get with keto diets (we already have enought dizziness in our lives with dysautonomia). The migraines were one of three symptoms that went away after five days on the keto diet (the other two being edema and bradycardia). The diet has zero impact on my other symptoms (tachycardia, hypotension, hypertension, etc.) So it’s no “cure”. But hey, I’m SO incredibly happy to be shed of those headaches that I now do the keto diet as a lifestyle. I would add that if I get careless and don’t follow it precisely then my banished symptoms do return. This all sort of makes sense to me because I read that a keto diet is a longstanding, mainstream medical treatment for epileptics because of the stabilizing effect it can have on the nervous system. 

Hope that helps. 

[GardenGal]

Missy M, thank you! I want to try that! Makes sense!