Review Clonidine (Kataprex, Nexiclone, Duriclone)

[Issie]

I took it for awhile when my POTS was so bad. It helped the tacky but contributed to what I think made my kidney function worsen. I had severe edema with it. And it made me so tired I could barely function. If I have a really bad tacky day and mast cell meds doesnt correct it, I keep it on reserve. But I find that either the mast cell meds or Tramadol with Bentyl work better for me. My thoughts were, I was tired of being tired on it.

Issie

 

[Debbie Iverson]

Just want to report some good results with Clonidine. I convinced my doctor to let me give it a try to address a few issues with one drug instead of many (hypertension, restless leg syndrome, and attention deficit disorder) after reading that Dr. Rowe was using it for some of his pediatric patients.

One month in, I have not yet seen benefits in regards to RLS or ADD, but my blood pressure is very well controlled. In fact, I am not experiencing the drastic drops in BP after standing or exerting myself for a while, nor is my heart rate jumping as much. This has left me feeling quite a bit stronger. Unfortunately I'm having trouble judging exertion prior to crashing, but that's a problem I'm happy to work on.

The most exciting result for me came today at an all too frequent blood draw. No problem finding a vein to stick!! A normal sized needle was used! AND the blood flowed freely! This hasn't happened in over a decade so I'm finding it hard not to geek out over it. There is definitely something to this low blood volume in CFS thing.

As far as negative effects go, the clonidine does make me sleepy. But we all know that sleepy is not anything to be confused with fatigue. I can see how "sleepy" would cause a reduction in activity levels in pediatric patients. It must be difficult for a kid to tell the difference between wanting a nap and NEEDING to rest. How cruel that any child should have to deal with this mess?

Also, I gained two pounds on the clonidine (and I really don't need THAT), but I honestly think it's two pounds if blood.

I feel very lucky so far. Will update with any future clonidine effects changes.

 

[Cort]

Just want to report some good results with Clonidine. I convinced my doctor to let me give it a try to address a few issues with one drug instead of many (hypertension, restless leg syndrome, and attention deficit disorder) after reading that Dr. Rowe was using it for some of his pediatric patients.

One month in, I have not yet seen benefits in regards to RLS or ADD, but my blood pressure is very well controlled. In fact, I am not experiencing the drastic drops in BP after standing or exerting myself for a while, nor is my heart rate jumping as much. This has left me feeling quite a bit stronger. Unfortunately I'm having trouble judging exertion prior to crashing, but that's a problem I'm happy to work on.

The most exciting result for me came today at an all too frequent blood draw. No problem finding a vein to stick!! A normal sized needle was used! AND the blood flowed freely! This hasn't happened in over a decade so I'm finding it hard not to geek out over it. There is definitely something to this low blood volume in CFS thing.

As far as negative effects go, the clonidine does make me sleepy. But we all know that sleepy is not anything to be confused with fatigue. I can see how "sleepy" would cause a reduction in activity levels in pediatric patients. It must be difficult for a kid to tell the difference between wanting a nap and NEEDING to rest. How cruel that any child should have to deal with this mess?

Also, I gained two pounds on the clonidine (and I really don't need THAT), but I honestly think it's two pounds if blood.

I feel very lucky so far. Will update with any future clonidine effects changes.

Thanks Debbie good luck with it - and your search for ways to improve your blood volume and autonomic nervous system functioning.

 

[Debbie Iverson]

Happy New Year!

Clonidine is still stellar at BP and heart rate control. I no longer have drowsiness with it. I am seeing some improvement in my ability to concentrate and find words when fatigued or stressed. Unfortunately, I seem to be developing very regular 2 am wakening with insomnia so I am not experiencing any great cognitive improvements overall. I'm still having a great deal of trouble gaging my limits since starting Clonidine.

These notes reflect that the only medication or behavioral change has been the switch from Lisinopril (ace inhibitor) or Clonidine for BP control.

 

[Paw]

My cardiologist gave me clonidine. It was very effective for sleep, RLS, and hypertension. Unfortunately .1mg at night left me feeling extremely sleepy the entire following day -- like Dorothy et al in the poppy fields kind of sleepy. Half doses were more manageable but they lacked the desired effect on my BP.

Tried guanfacine as an alternative but found it very similar. One mg makes me too sleepy the next day, while .5mg doesn't affect BP.