looneymom Posted February 18, 2013 Report Share Posted February 18, 2013 Since my son has had the flu, his headache has come back and nerve pain levels are worse. He has not been able to sleep through the night and wakes up 3 or 4 times through the night. Our neurologist started him on 25mg the first week and raised it up to 50mg last week. He is still not sleeping through the night on this last dose. Just wondering what experiences you have had with this meds. So far his blood pressure is staying where it needs to be at but he woke up this morning with legs twitching. Quote Link to comment Share on other sites More sharing options...
jkoconne Posted February 18, 2013 Report Share Posted February 18, 2013 hi, I took this med when i was younger (13-15 yrs old). I was always lowering the dose because it would knock me out! I mean 18 hrs after only 2.5mg in liquid form...my mom would wake me up to go to the bathroom, eat and drink and i'd be out again! I later found out i had issues metabolizing it and my intense sleep was actually an over dose! who would have known?! I obviously had to stop taking it..but it didnt make my pots symptoms worse.Hope he gets relief soon! Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted February 19, 2013 Report Share Posted February 19, 2013 It increases catecholamine levels and is on the list of drugs to avoid in POTS--see the home page of this website (it is a tricyclic antidepressant). Quote Link to comment Share on other sites More sharing options...
looneymom Posted February 19, 2013 Author Report Share Posted February 19, 2013 He has low dopamine and seratoin levels. I was hoping it would raise something up. Quote Link to comment Share on other sites More sharing options...
JenLR Posted February 20, 2013 Report Share Posted February 20, 2013 This was the only drug that Mayo suggested to me after diagnosing me with POTS. I took it for two weeks, but the side effects caused me to stop it. I honestly don't remember exactly what my side effects were, but I know that I was really disappointed that Mayo's only treatment option for me after spending two weeks there was something that made me much worse. Quote Link to comment Share on other sites More sharing options...
HyperPOTS8 Posted February 20, 2013 Report Share Posted February 20, 2013 With insomnia, headaches, nerve pain and low dopamine levels, it seems worth a try...I hope it will help your son. Quote Link to comment Share on other sites More sharing options...
Batik Posted February 22, 2013 Report Share Posted February 22, 2013 It gave me insomnia and low appetite, the opposite of what's expected! Plus gastrointestinal problems. I don't know whether it helps some people with POTS, but you get very mixed results when it's used for ME, which I have. A friend of mine with ME does well on it. Proceed with caution and keep notes on how he's reacting?Personally I do best with darkness therapy for sleep (should come up if you Google it). Temazepam if I'm having the odd bad night, but it's a benzodiazepine so only suitable for occasional use. Quote Link to comment Share on other sites More sharing options...
~elizabeth~ Posted February 23, 2013 Report Share Posted February 23, 2013 I had a very bad reaction to nortripytline, it definitely raises norepinephrine worsening tachycardia, Raynaud's type symptoms, triggered a very bad episode of jaw clenching that broke a tooth and raised my BP a lot. I couldn't sit down for 6 hours after taking otherwise I'd flush immediately. I don't know why, other than it must have been something to do with increasing my blood pressure/cardiac output. It actually made my face pain worse, and triggered burning pain inside my mouth and nose, and flushing in new areas of my face.My GP made me stick it for a month saying it takes a long time to start working, but nothing altered in that time. I think the pain I was experiencing was Raynaud's type vasospasm, there are reports of tricyclics triggering this, so there was no way it was actually going to help my facial erythromelalgia however long i stuck it. Quote Link to comment Share on other sites More sharing options...
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