Adjusting to Clonidine, Not Sure

[gnnmi]

I have POTS, not sure yet what subtype. A new neurologist just diagnosed me with EDS also and gave me a prescription for Clonodine, half a .1 tablet at night to calm things down. It definitely helped me sleep more deeply although it did not eliminate the usual sleep interruptions of flushing, sweating and elevated heart rate. In fact, it seemed to increase those symptoms. 

The Clonidine changed the times at which I wake up, and once I was awake I would stay awake for up to two hours rather than going back to sleep as before. After a few nights of taking it, I was also looking for cookies in the middle of the night. During the days I felt depressed, so I cut down to 1/4 of the pill. I'm back to my "normal" sleeping patterns now, but my peripheral neuropathy seems quite a bit worse.

Does anyone know much about Clonidine and why I had this reaction? Does anyone else find it ( possibly) exacerbated nerve pain? I did call the doctor's office and they advised me to cut down then stop taking it and said we can try something else at my next appointment. Does anyone else use another safe medication that works for them on severe sleep interruptions? Florinef increased my neuropathy and I was scared to try Midrodine because of the creepy-crawly side effect, which I always experience anyway. Thank you.

The Clonidine only cost me $1.78 for a two month supply so I liked that side effect. 

G

[POTSius]

It could be that the levels of clonidine in your blood are too variable with this dosing. They will be at a peak after taking and then get lower later. Perhaps you feel worse as you are going into a mini withdrawal?

Whatever the reason, the clonidine pill for me would work great a few hours and then I would feel worse

I solved this by moving to the patch which has worked great as it provides a much more stable dose. I don't take it for sleep so I can't speak for that.

I would also note that I actually had worse orthostatic intolerance for a few weeks when starting clonidine until my body adjusted to it, so keep that in mind.

 

 

[RecipeForDisaster]

Metoprolol is the only thing that has improved sleep much for me. It partially quiets the pounding tachycardia. I do sometimes use melatonin, theanine, or valerian root to "cover up the sick feelings" and make it easier to sleep despite them. Magnesium taurate or glycinate has seemed to help, too.

 

I haven't tried clonidine although I am sure it would help - my BP is far too low for me to use it.