Clonidine

[khaarina]

I have been diagnosed with POTS and based upon my symptoms (high bp when standing, insomnia, etc.) I believe it is Hyperpots. My treatment plan is helping a little but I am still totally disabled. I have been reading a lot about Clonidine and I want to ask my doctor to put me on it and see if it helps. Those of you who have tried Clonidine, what was your starting dose and what time of day did you take it? Did you experience any side effects? What other meds did you tae with it? I am taking Midodrine 2.5mg as needed up to 6/day and Metoprolol 12.5mg 2/day, can I take Clonidine in addition to these, or would it replace one of them? Any other information you have about Clonidine and POTS would also be greatly appreciated. Thanks.

[margiebee]

I have been wondering about clonidine as well, it sounds like a miracle med for my symptoms so there has got to be a catch.

[looneymom]

My son has been on it for a month. The first two weeks I thought it was helping a little, however his shaking has gotten much worse this last week. His heart rate is also much lower. This week some of his heart rate readings were in the upper 40's. My son saw his cardiologist just yesterday and was concerned about the low heart rate readings. However, the plus side is my son is not having any tachycardia. Instead of pulling my son off some of his clonidine, he has decided to try weaning him off his fludrocortisone. So today he took half of his dosage and his heart rate stayed up better. The doctor and I are really hoping my son has outgrown the use of fludrocortisone. Don't know if the clonidine will work any better for him, time will tell. He is also on 40 mg of midodrine 3 times a day. Two weeks ago, the doctor tried to cut this dosage in half. My son's blood pressure went way too low, he cannot function without midodrine. The are the three main prescriptions my son is on for his POTS at this time. My son may have hyperpots but due to his health condition, this testing cannot be done. He takes 1mg of clonidine mid-morning and 2 mg before bed. I'm hoping to see more improvement this next week with the clonidine. If I see improvement, I'll be sure to post.

[Psalm 23]

I am on Clonidine 0.1mg twice daily ( breakfast and dinner ) The 0.1mg was meant to be a starting dose and at that dose I did not experience any significant side effects but when the dose was increased to 0.15mg I had significant problems with increased fatigue (which was already a huge problem ) and blurry vision so I went back to taking 0.1mg. Even at what was meant to be a starting dose it has helped immensely with severe tremulousness and tachycardia. In addition to Clonidine, I am on Mestinon, Plaquenil and Neurontin. Up until a few weeks ago I was also on Propranalol 5mg twice daily but that is temporarily on hold. I have never been on Midodrine or Florinef but they were suggested as possible add on treatments if greater blood pressure stability was achieved. I have a very labile blood pressure as well as a very high NE level and for me Clonidine has worked exceptionally well. There have been a number of past postings regarding forum members various experiences with Clonidine and the reviews are pretty mixed.

Looneymom,

I'm so sorry to hear how your son is still struggling so.

Janet

[HyperPOTS8]

I am on a very high dose of clonidine--I use two 0.3 mg patches every five days and then take up to 0.6 mg oral clonidine up to 4 times daily as needed along with diltiazem when my BP shoots up. I also occasionally have low BP. I have very high NE levels with supine levels 1400-1800 and upright 3400. This medication has helped me a lot and has no side effects in my case. I also take florinef as very high levels of catecholamines usually cause hypovolemia and I have severe hypovolemia by blood volume analysis at mayo.

[margiebee]

HyperPOTS, random question but were your catecholamines taken during your blood volume test? I suspect mine are way high which is also why I think clonidine would work, and my next test is the blood volume test. I thought I remembered them saying they draw blood to test NE and such during that test but I could be mixing things up.

[HyperPOTS8]

No, mine was done I believe the day before the blood volume testing. At Mayo, the catecholamine testing is done in the lab and the blood volume testing is done in nuc med.