Fall-Di Posted March 25, 2017 Report Share Posted March 25, 2017 Just took my first dose of clonidine last night, took half .1 pill. Fell asleep in about 30 minutes. Slept horrible for about 2hrs and woke with racing heart. Then I was wide awake the entire night. Might this mean it isn't the right med? I take Adderall, two 10mg during the day [no later than noon] and it has really helped, I can exercise on my recumbent bike/rower nearly 30 minutes most days. But sleep is a problem, I'm not getting enough and it does bring on a crash. I can't be upright without the Adderall so a bit of a vicious cycle. I have EDS and MCAD. Thinking I have hyperadrenergic POTS, now not sure. Any thoughts? Thank you! Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 25, 2017 Report Share Posted March 25, 2017 Hi, Di. I have been on clonidine for years for my hyper POTS. I get a trifecta of relief from it - helps my anxiety, lowers BP along with HR (slightly), and works for sweating & flushing, and tremor. I had horrible insomnia before starting it, but I also wake up about every 3 hours. My dr. said it's a short acting medication so it needs to be taken around every 6-8 hours, but I'm a rapid metabolizer w/ meds so I take it every 4 hours. Clonidine also comes in a patch form that you change weekly, this offers a constant dose. When i first began taking it I had a lot of dizziness and was drowsy, so I napped a lot during the day which threw off being able to sleep at night. I learned that I needed to get up very slowly when changing positions for the dizziness, and after about 1 months the drowsiness went away. I'm not aware of clonidine causing tachycardia but maybe you had a paradoxical affect somehow? I would suggest talking to your doctor or even calling your pharmacist for some thoughts? Sorry I couldn't be of more help. Did your dr. Rx it for a sleeping aid or pots? It's given off label for insomnia. Take care! Sarah Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted March 25, 2017 Author Report Share Posted March 25, 2017 Hi Sarah, Thank you for the info and your experience with Clonidine. I find I learn more from others experiences than from 'recommended treatment'. The Clonidine completely stopped my tremor and really improved my motor skills, haven't had any dizziness - of course only had one dose. I'm taking it for POTs and my recent blood pressure spikes. My general BP has increased to 128 ish/90. Dystolic has become a bit high. I want to stay on the Adderall while I get the Mast Cell treatment going, was even hoping to swap out clonidine with the Adderall. But if I sleep on neither, I feel better on Adderall. So the Clonidine was for sleep POTS problems and to lower the BP spikes. I just thought it was weird reaction, I can't lay down on clonidine because it feels like an anxiety attack. Thanks for the help, Di Quote Link to comment Share on other sites More sharing options...
haugr Posted March 25, 2017 Report Share Posted March 25, 2017 Hi Fall, My experience with clonidine has been an interesting learning experience. I initially started on .1mg, but it wasn't enough, and like Sarah mentioned, I definitely noticed how short acting it was. After I had a few hyperadrenergic attacks where my blood pressure got up to 180/120, my doc bumped the dosage up to .4mg where .2mg was from pills and .2mg was from the patch. That ended up being too much for me though as it gave me bradycardia. I ended up slowly cutting back to where I was only on the .2mg patch, which was a relatively stable place for me for a while, although the patch really irritated my skin and I felt cold all time. The day I lost my job though, I had another hyperadrenergic attack that shot my blood pressure back up to 180/120. I immediately took one of my .2mg pills to get my blood pressure back down, which worked within 30 minutes or so. What I learned is that with me, my anxiety has the potential to trigger sympathetic activity that exceeds what a lower dosage of clonidine suppresses, but taking a higher dosage on days where my sympathetic activity is low makes me feel lathargic and cold. Even though I still have the .4mg prescription, most days I only take .1mg split over 2 dosages during the day, one of which is right before I go to bed because it helps me sleep. On days though where my anxiety is high, I will take a little bit more. If sleep is your biggest issue, I do think that clonidine can be your friend. As I understand it, clonidine will make you sleepy regardless of whether or not you are hyperadrenergic. If I understood my doc correctly, adderal can help because it binds to the same receptors that the norepinephrine does, thereby reducing the effects. Clonidine though helps because it suppresses your body from releasing norepinephrine in the first place, as long as the origination of your excessive norepinephrine is triggered from the brain and not from something like a pheocromocytoma. I hope this helps and I hope you get feeling better. Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted March 25, 2017 Author Report Share Posted March 25, 2017 Thank you haugerror, I appreciate the info! I am afraid to try it again tonight since I only slept 2hrs after having it last night and then woke and haven't been able to sleep at all. For some weird reason I get wired on this stuff instead of tired. This happens a lot to me. Sleep meds keep me up. I think I am going to talk to my Mast Cell Dr on Tuesday. I may be reacting to the filler. Maybe? Thank you so much, this site is so valuable! Di Quote Link to comment Share on other sites More sharing options...
Fall-Di Posted March 25, 2017 Author Report Share Posted March 25, 2017 Forgive my tired typing! Hauger, I'm sorry for allbyou have been thru. We all have had too much suffering, it takes some strength to live like this. Di Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 26, 2017 Report Share Posted March 26, 2017 My bp lingers around 110/90ish these days but with any activity or heat it shoots up, is this something you guys experience too? Wondering if this would help more than propranolol Quote Link to comment Share on other sites More sharing options...
haugr Posted March 26, 2017 Report Share Posted March 26, 2017 Yeah, activity is a trigger of mine too. I don't recall heat ever being a trigger though. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 26, 2017 Report Share Posted March 26, 2017 I have horrible heat intolerance that impacts my heart rate and BP. Kalamazoo, Dr. Grubb mentions clonidine in his research for treatments for hyper patients as it works to control varients of the sympathetic nervous system by decreasing adrenaline (ne levels) sweating/flushing, tremor, BP surges which are all common symptoms in hyper form. Quote Link to comment Share on other sites More sharing options...
SarahA33 Posted March 26, 2017 Report Share Posted March 26, 2017 This past thread might be of interest to you: http://www.dinet.org/forums/topic/26754-benzos-and-ssris-and-dysautonomia-better-or-worse/#comment-249137 This is the opinion on meds from dr. Grubb on hyper cases: "In the hyperadrenergic form of POTS, patients often respond best to agents that block norepinephrine or its effects. One agent that is particularly helpful is clonidine HCI in either pill or patch form. We start the oral form at 0.1 mg PO 1 to 2 times a day and filtrate upward. The patch form of clonidine is quite useful because it provides a constant and continuous amount of the drug for up to 1 week at a time. The combined and β blocking drugs labetalol and carvedilol are quite useful in some patients as pure β-blockers may exacerbate symptoms (because of unopposed receptor stimulation). Methyldopa has been reported to be useful in some patients, as has phenobarbital. In addition, both the SSRIs and norepinephrine reuptake inhibitors are useful in select patients." Article written by Dr. Satish Raj, view the central hyeradrenergic section: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3756553/ Quote Link to comment Share on other sites More sharing options...
kalamazoo Posted March 26, 2017 Report Share Posted March 26, 2017 Oh wow this is very interesting as I've found that my propranolol barely helps me at all anymore and I've basically stopped taking it. I'll have to ask my cardio about clonodine but I am going to the UW neuro center where they test and have specialist. Will be seeing doctor So I believe. Hopefully that might help too. Hyper pots is frustrating, Quote Link to comment Share on other sites More sharing options...
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