Orthostatic headaches? Please vote!

[bombsh3ll 0]

This is a major issue for me and I am waiting to have a CSF leak ruled out, however I understand a significant proportion of POTS & other dysautonomia patients get orthostatic headaches in general, which are only present when upright and relieved by lying down. I would be really grateful if you can vote to give an idea of how common this symptom is in a dysautonomia population. 

Note if you get headaches but they are not related to position, please select "no". 

Thanks so much,

B x

[p8d 0]

I get lots of headaches but I never tested to see if they go away lying down.  I get supine hypertension so don’t lay down unless my BP is lower or bedtime.  I will try it though.  I didn’t vote because of this, sorry.

[bombsh3ll 0]

46 minutes ago, p8d said:

I get lots of headaches but I never tested to see if they go away lying down.  I get supine hypertension so don’t lay down unless my BP is lower or bedtime.  I will try it though.  I didn’t vote because of this, sorry.

That's OK you would probably have noticed if there was a strong orthostatic component to them.

I have been reading Dr Carroll's work on the issue of POTS vs CSF leak vs both, particularly in EDS patients, as the symptoms can be very similar. All my troubles began with a very forceful valsalva. I know we all long for a treatable cause, I'm not getting my hopes up, but a small number of people fitting this description have been found to have CSF leaks and helped by treatment. There was a small study comparing patients with a diagnosed CSF leak to patients with POTS but no leak; 100% of the patients with a CSF leak had orthostatic headaches and 100% of them met the upright HR diagnostic criteria for POTS, whereas by definition all the POTS patients without a CSF leak also meth the POTS criteria but only 27% had orthostatic headaches. 

B x

[GasconAlex 0]

Voted yes but after about 3 years they are much less orthostatically sensitive. Now I take more pills and spend more time vertical.

[bombsh3ll 0]

15 hours ago, GasconAlex said:

Now I take more pills and spend more time vertical

I would love that, I seem to have tried pretty much everything already but do you mind sharing what you take to get vertical?

B x

[GasconAlex 0]

Because the headaches became utterly ridiculous I take slow release tramadol all the time. With this I can be vertical for up to 120 minutes before it gets too bad. If I have vibrations (like car trips) it makes the headaches much much worse. Then I take more tramadol and also paracetamol until I have real problems. By that time I might need 12 to 36 hours flat.

It's not perfect but the chronic pain people think it's better to be able to be vertical (and yes it doesn't get rid of the pain) than to decondition myself.

 

[potsiebarbie 0]

This is really interesting. When all my funky symptoms started this was a big one. Headache when upright relieved by lying down. It was when I was pregnant. I don't get them anymore. Can CSF leaks just go away? How are they diagnosed?

[GasconAlex 0]

Treatment for CSF leaks is (in the first place) staying horizontal for a few weeks to allow the membranes to heal. In lots of cases this apparently works.

Another option is the blood patch. This is where your blood is taken and then injected into your spinal column. For me this worked perfectly for the headaches, 100% gone with no pain pills necessary for 36 hours. No headaches when vertical at all. (You can have this done if you are a Jehovah's witness by the way - I'm not but it came up when I was researching the treatment)

But this is where it gets complicated for me, my gp, neurosurgeon think it is a leak that cannot be seen on the MRI (if he can't see it, or where it might be he can't fix it) on the otherwise the neurologists who can't agree but the one who is responsible (and did the patch last time) disagrees and doesn't want to retry. Without definite proof no one else wants to contradict him.