Flying

[greeneyes247724]

So my NS gave me Diamox (which is for altitude sickness) to try and help prevent my headaches.....it made things worse!!  This past weekend I flew twice and both times flying made my headache better!!  So what does that mean?  I think my NS thought my CSF pressure might be high so he gave me the Diamox but I'm not really sure.  Any thoughts?

Kristen

[sleepypea]

Hi, I also take Diamox. For me it takes about a week before I really start to notice just how much it helps me. Don't get me wrong it has it's side effects. Lots of tingling in my hands and feet, my skin feels funny (like it's being dried out) but all in all the benefits outweigh the side effects for me. The side effects do get better the longer you take it. I take it for a few weeks and once I really start to feel better I quit for awhile. I just don't want to stay on it for long periods because it is hard on the kidney's and if you don't stay good and hydrated you can get cramps. Dehydration also will cause bad headaches so increasing your water intake while on Diamox is a must.

[greeneyes247724]

When I have the headaches it doesn't matter how I lay or sit or stand....it just hurts!!  lol  It does seem like most of the pain is on the side of my head where my numb spot is.  The headache I had Sunday before flying was one of the horrible ones...I was queasy and everything.  I couldn't even people watch at the airport cuz it made my head hurt to look around...lol  But once in the air the headache eased up and was gone....even the queasyness got better.  

I really think the low pressure might be the answer....it just seems to make the most sense.  I am very interested to see what my NS says on Monday!!  : )

[jenniferk86]

well.. I think selma may have been on to something when she first said that your pressure can be low.. you can have your pressure headaches because your csf in your head pressure is low and your csf pressure on the outside can't get in.. you can also have the oppositue problem.. if the diamox is supposed to help reduce the pressure it would make sense it made you feel even worse and going higher in altitude made your pressure in your head higher thus making you feel better because really you have low pressure....

[selmaS]

  Well I am stumped...can not for the life of me figure out what it could be....if it was a CSF leak u would think flying would make u feel worse...change in position would also make u feel worse., lying down is generally the best place for u.

Try and lie down during a bad HA. during the day and see if it offers relief...if so, it could be a leak....

    "selma"

[jenshead]

I may be completely off, but has your doctor explored the possibility that you have a CSF leak?  A CSF leak will cause pretty terrible headaches.  Would also make since that Diamox would make it worse.  No idea on the flying point.

My dr has brought up CSF leak before because my headache is very dependent on position...I'm fine when laying down flat.  Is yours the same?  Diamox works for me though so I definitely don't have a leak.

[cash242]

I completely understand your frustration with daily headaches I cant imagine what I would do if I were headache free for 1 day-my NL wants to try botox next and has had great success with other headache patients so I figure what the heck insurance covers it just would love the level of pain to be less.  Good luck on figuring it all out!!

[greeneyes247724]

I only took the Diamox for maybe a day like a month or so ago.  I just talked to the nurse with my NS and she too said that was strange.....but she would leave a note on my chart for when the dr gets back on Monday.

I dunno but these daily headaches are killing me.....and not knowing who to go to makes it worse...back to the NS who said my CSF is flowing and acted like there was nothing else he could do or try another neurologist or try a pain mgnt dr.  I just don't know... : /

[selmaS]

  Well that is odd...unless the DIAMOX changed ur CSF output??? Not sure if it can or not...but , not being a DR I am not sure...have u asked the Pharmacist about this.

I still think u may have a lowered CSF pressure that may be causing the HA...I could be way off base tho....sorry I am at a loss.

  "selma"

[greeneyes247724]

Thanks for the input!!

I guess I should have clarified that I tried taking the Diamox several weeks ago and stopped after a couple of days cuz it just made me feel very lightheaded and dizzy and just not good.  I still have the now daily headaches again.  Both days before the flights I had a headache but once in the air I could tell that they were better.  I landed last night and felt great....today....headache is back in full force.

[selmaS]

  Hi...I know DIAMOX is used to help reduce excess CSF fluid....so, it is possible u would have been fine without the meds....I flew 1 month b4 I got my dx and was fine....I did experience a new symptoms after that flight, but it was in my leg not my head...so not sure it was flight related.

  actressmouse- I am the same way, it can be a beautiful sunny day and I feel like crap cuz in  2 days it is supposed to rain, once the rain comes I feel fine....weird...but I think the Drs got it wrong...lol....

   Ur CSF may have been fine greeneyes, and the DIAMOX reduced it...flying increased it with pressure so u felt fine...JMHO


   "selma"

[cash242]

I have been on diamox for 2 weeks and have had improvement in fact went camping at 8000 ft and still had ha but not as bad as before so maybe you need something for low spinal fluid? I honestly dont know trying to figure it all out myself but I definetly have what your dr is talking about with pressure with storms and barometric pressure.  I flew to st thomas and was almost headache free since altitude is so low?  Good luck!

[actressmouse]

I had a NS recently tell me that I should "feel better" when the barometric pressure is high, like on sunny days, and that a falling barometer (just before a thunderstorm) will probably make me feel worse.  Well, I don't know....I've had some pretty bad headaches on simply beautiful, sunny days... and I've felt perfectly fine on stormy days.  One thing I have noticed for me is that humidity (really thick, soupy days) isn't helpful and if I have a headache "brewing", humidity will probably ensure that it becomes "full blown".  I haven't flown since my dx, though, so I don't know how that would influence me.  I take Zofran PRN for nausea and that helps.