davecom Posted June 14, 2013 Report Share Posted June 14, 2013 I want to see how alone I am on this, because at this point it's my most profound and challenging symptom. Quote Link to comment Share on other sites More sharing options...
angelloz Posted June 14, 2013 Report Share Posted June 14, 2013 I wanted to rep[ly sometimes on the last question. At times they resolve when I lie down sometimes not. I think it depends if I have a migraine starting also.I have found that chewing gum helps with the plain orthostatic headache pain. Not sure why.You are not alone. i hate this symptom too...but have many others.Question..I trie to start a poll a few days ago. When I clicked finished it disapperaed and never showed up on the forum. Can you tell me what I did incorrectly??Angelloz Quote Link to comment Share on other sites More sharing options...
andybonse Posted June 14, 2013 Report Share Posted June 14, 2013 I get a terrible rubber band tight feeling on the top of my head when im sat down or stood and diziness with it, its horrendus and again my worst symptom! Quote Link to comment Share on other sites More sharing options...
looneymom Posted June 15, 2013 Report Share Posted June 15, 2013 My son has the headache 24/7. I have been told this can be a side effect of midodrine or florinif. The headache and tremors are his worse symptoms. He drinks plenty of fluids and uses an ice pack. The ice pack does help some but his headache has not gone away since he had the flu. Quote Link to comment Share on other sites More sharing options...
jknh9 Posted June 19, 2013 Report Share Posted June 19, 2013 I get frequent headaches, but they don't seem to be related to standing/walking. Mine feel like they start in my neck and then move up the base of my skull and sometimes above my eyes. Ice packs help with mine, too, and usually iburofen helps. If they get bad and I don't take ibuprofen, they get worse and don't go away with sleep. I have tried going to bed with a headache to try to sleep it off and have woken up in the night to horrible pain. Super annoying. Also, I often get them on rainy days.They were much, much worse on the florinef. I couldn't tolerate it because it gave me migraines. Quote Link to comment Share on other sites More sharing options...
davecom Posted June 19, 2013 Author Report Share Posted June 19, 2013 Seeing as orthostatic headache is such a common symptom, and probably is what is most limiting many of us from more normal activity (and increased activity may in turn, as exercise, help to alleviate all the rest of the symptoms), it would seem that solving it would be one of the most important parts of symptomatic treatment. Yet, none of the typical POTS medications treat orthostatic headache. Or do they? What have been some of the most successful treatments for orthostatic headache in POTS patients? I for one would not want to use a pain killer simply for this - since the orthostatic headache is one of the best indicators that we're overdoing it - we don't want to NOT know when we have lack of blood/oxygen/too little pressure/too much pressure in our brain! Quote Link to comment Share on other sites More sharing options...
blueskies Posted June 20, 2013 Report Share Posted June 20, 2013 The problem with leaving a headache untreated is we can become more sensitised, our pain to the pain, our pain threshold can become lower and our headaches can get worse -- is what I've been told. blue Quote Link to comment Share on other sites More sharing options...
davecom Posted June 20, 2013 Author Report Share Posted June 20, 2013 I'm no expert, but if the pain has a very clear trigger - in this case standing up - then it's clear that something that happens when standing up causes the pain. It's like saying when I put my finger over a fire it hurts. I wouldn't want putting my finger over a fire to stop hurting - or I may not realize I am burning my finger off! The pain is sign of something actually going wrong, and I for one do not want to not feel it so that I am doing damage without knowing it! Quote Link to comment Share on other sites More sharing options...
Lethargic Smiles Posted June 21, 2013 Report Share Posted June 21, 2013 I was going to say what angel said, could we add sometimes to the last question? It typically takes an hour of laying down to undo the headache. So maybe yes -- relief in less than 20 minutes and yes -- relief takes more than 20 minutes? Quote Link to comment Share on other sites More sharing options...
davecom Posted June 22, 2013 Author Report Share Posted June 22, 2013 I changed the wording of the last question to ever persist. This accounts for those for whom the headaches only persist sometimes. Quote Link to comment Share on other sites More sharing options...
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