Migraine

So I am trying to figure out- if hypo CSF means a "spinal" headache and you feel better laying down than when having an attack of the IIH migraine is it opposite that?

I get terrible migraines that wake me from sleep. They are often helped by me getting up and moving about, sleeping upright, that sort of thing.

Other times I already have a bad migraine and just unable to lay down...or even touch my head to the pillow. I feel better (although still at a 10) if sitting or kneeling at the bedside and just resting my head in an almost upright position against the bed/pillow.

Are those episodes symptomatic of the IIH?

Does any one else have this problem? It isn't one I have seen mentioned.......

I don't have any personal experience with IIH but I know that other members do. Hopefully, they'll be along shortly to share their experiences with you. In the meantime, I found this article you can take a look at if you haven't already:

Pseudotumor Cerebri (IIH) – The Basics

I hope this helps!

I know that waking with a Migraine frequently, tinnitus, no trigger Migraines...that is all a possible symptom of IIH.

I have heard from people that have it (I have yet to be tested, although I think I have it) that when laying down, the spinal fluid can "pool" at the base of the skull, which is why once you stand up and move around, the headache or Migraine may go away. Not you specifically, but others with this diagnosis.

Many a morning I awake like three hours before I should be awake with a terrible Migraine. It is duller when I get up, three hours later - but does not actually go away until I've been up and moving around for about an hour. That's why I wait in the mornings before taking anything unless its really bad. For the most part, I have been able to tell the difference in when it's just going to go away and when it's going to need some help.

Hi my son who is 6 has IIH.

Lying down definitely makes the IIH headache worse when your CSF pressure is too high.

Most of my sons symptoms were at night. He would regularly wake at 1am in the morning and vomit. He now sleeps propped up and has some pillows under his mattress to keep him in a more upright position. He has been sleeping and waking much better since then.

Most mornings he would wake late and take about 2 hours to get mobile as he had a headache and felt too nauseous to eat. It was usually gone by lunchtime and returned around dinner time. The neuros at the hospital told us this was a fairly typical pattern for people with IIH.

If your CSF pressure is too low then lying flat can relieve the headache.

CSF pressure fluctuates many times during the day for a variety of reasons and this is normal. It is generally higher when you sleep and lower when you stand up. Exercise can raise CSF pressure along with caffine. The neuros told us that some people are more sensitive to CSF fluctuations.

Hope this helps. Good luck with it all.

Daisy

I just found out at the end of April (through an LP) that my CSF pressure is too high. I have absolutely found that position makes a difference for me - not so much the head pain (my IIH-related head pain is usually mild), but for the dizziness. I can't sleep flat (haven't been able to for years), and the worse the pressure/dizziness/pain from my IIH, the more upright I have to stay.

For the past few years (except for the last few weeks, which I'm hoping is the Diamox I started ) I've woken up with pain that feels better within the first hour of waking up. Meaning, I'll wake up with a pain level around 4-5 out of 10, and it will decrease to 2-3 within the first hour I'm out of bed. It looks like anecdotally I'm not alone in this.

Daisy, the info your son's neuros gave you makes sense in light of my own experience. I feel bad in the morning, better toward midday and bad again at night. I'm betting the CSF fluctuations have something do to with that.