Abe Posted October 4, 2022 Report Share Posted October 4, 2022 It's being a while since I have been here mainly because this year has been the worst since I got diagnosed with POTS. I haven't had a day I call normal this year and things just keeps getting worse. After another round of tests, which by the way, all came back normal, I was prescribed Clonidine. I have heard from many POTS patients that it helped them with the adrenaline dumps which I battle with daily. I just want to know if anyone here have tried it and what was/is your experience? I am scared to start another medication as I am trying to get off Lorazepam. It has been the only thing that has helped me be able to work as little as I can over the last six years. Thanks. Quote Link to comment Share on other sites More sharing options...
Pistol Posted October 4, 2022 Report Share Posted October 4, 2022 Dear @Abe I am so sorry you are still battling so badly! I have taken clonidine once and it was terrible. I took the lowest dose on the market and slept every day, as if I had taken pain killers. Then, on day 5, I woke up in the night with terrible anxiety and thinking I was going to die. My BP that night was sky high. I stopped after that night and it took a few days to get back to "normal". I have HPOTS, so I suffer from adrenaline surges causing high BP. I dont recall if it helped with those because I slept the whole time! Having said all of this - this was simply MY experience. I know of many people with POTS who have been helped by it. It all depends on the mechanism behind your autonomic dysfunction. I have learned that we cannot know how a drug affects us until we try it! Quote Link to comment Share on other sites More sharing options...
Sushi Posted October 4, 2022 Report Share Posted October 4, 2022 @Abe You won’t know unless you try it unfortunately. It is great for some but for me it was the worst I ever tried—turned me into a zombie. But then I am higher in parasympathetic response than sympathetic and were at the reverse it might have been helpful. Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 4, 2022 Report Share Posted October 4, 2022 @Abeare you having high bp issues? I did look at clonidine to help with my liable bp's but just like most meds i declined the meds that cross the brain barrier. i did at one point even fill a prescription for wellbutrin to stop smoking i could not get myself to take it. I have seen the personality changes while on the drug. I have been working with a dietitian at UW in Madison she did ferret out type 2 diabetes but with the diet changes my vitals have improved. My GI issues have improved as well. I am going into allergy this week as well i am sure i have problems with food intolerance. Pretty sure @Pistolwas being treated for chronic inflammatory. IMO being in a inflamed state is damaging (i am living it). Just a another rock to turn over. Quote Link to comment Share on other sites More sharing options...
MikeO Posted October 4, 2022 Report Share Posted October 4, 2022 11 minutes ago, DysautonmiaMatt said: Guanfacine is another alpha-agonist but I felt horrible on that I can tell you this one bites for sure. Just my opinion. Quote Link to comment Share on other sites More sharing options...
Abe Posted October 5, 2022 Author Report Share Posted October 5, 2022 @Pistol, @Sushi, @MikeO@DysautonmiaMatt, Thank you all so much. Honestly, I just wanted to try something else to see if it will help. I feel sorry sometimes for the pain my body goes through daily and the share amount of symptoms that I deal with even though I know all of us go through it. It's just that when I get overwhelmed (as this year has being for the most part), I am blinded to everything else going on around me. It's amazing what we all deal with. I am grateful though for this place. This forum has been my little safe place things get overhead. I am scared of starting a new medication. My body over-reacts to everything. I am even scared to take Tylenol and regular vitamins. I tried duloxetine few months back and although it helped a little for few weeks with body pain, everything else got worse so I had to stop. I was prescribed 0.1mg of Clonidine. Still not sure if I will take it but we'll see. Quote Link to comment Share on other sites More sharing options...
little_blue_jay Posted January 11 Report Share Posted January 11 On 10/4/2022 at 9:43 PM, Abe said: @Pistol, @Sushi, I am scared of starting a new medication. My body over-reacts to everything. I was prescribed 0.1mg of Clonidine. Still not sure if I will take it but we'll see. This is me to a Tee!! I just had side effects from low dose Metoprolol, and just got a prescription for Clonidine. Very nervous to try it.. Did you ever try the Clonidine, and did it help or how did you react? Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.