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For Those Taking Clonidine


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to tell me what dose you're on?

I've started with a half 0.1 pill twice a day.

Then today one whole pill in the AM.

Not sure if it's helping the way I feel, but it has brought my heart rate down. It was in the 120's-137.

I also have a sinus infection, and have been on bactrim. Feeling very tired and just blah.

Tomorrow will be my last day of antibiotics. Shouldn't I be feeling better by now. I think my sinus infection is gone, but I still feel like crap.

Thanks

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Hey NGU-

My son was on clonidine before his doc suspected MCAD. He tried it for a month or so and decided that it made him feel much more tired than usual. (I'm sorry I can't remember his dose.)

Clonidine is a beta blocker which usually is NOT a good idea for anyone with allergies, asthma, or suspected MCAD. The main reason is that it may render your epi-pen (or any administration of epinepherine) less effective should that become necessary in an emergency situation. It can also worsen allergy symptoms in folks with allergic or non-allergic (MCAD) processes.

The way I understand it- is that clonidine is helpful for folks that have an over-active sympathetic nervous system- very hyper, nervous, excitable. It helps calm things down.

Finding the right meds or combo of meds is a major balancing act. I hope you feel better soon.

Julie

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to tell me what dose you're on?

I've started with a half 0.1 pill twice a day.

Then today one whole pill in the AM.

Not sure if it's helping the way I feel, but it has brought my heart rate down. It was in the 120's-137.

I also have a sinus infection, and have been on bactrim. Feeling very tired and just blah.

Tomorrow will be my last day of antibiotics. Shouldn't I be feeling better by now. I think my sinus infection is gone, but I still feel like crap.

Thanks

I started with 0.1 twice a day and I lost my memory. It was way too strong for me.... so I agreed to take 1/2 tab am and pm for a year

then about 6 months ago I agreed to increase the night dose to one tab at bedtime. my Heart Rate is out of control like yours and higher 140 to 160.

So we just raised it to one and 1/4 tab at bedtime and 1/2 in the morning. Next time I see the doctor I feel that I can make another increase at bed and in the am as we need to control the Heart Rate

Now the sinus infection is a whole other issue. I had it back in December along with one infection after another. My BP and HR have been terrible. My neuro told me all infections makes Pots worse and must be cleared and gone before pots will be in best control. You might need another round of antibotics, my doc said the sinus infection going around this year just doesn't want to leave. I needed 3 rounds of antibotics. I had been so tired felt like crap like you. She checked my ferritin level and it was low. So I needed Iron also.

I hope you are feeling better soon. The clonidine will make you sleepy, at least it did me at the large dose. I think you are a lot like me and need to go slow on meds. Also, my neuro said make sure to drink lots of water with all these meds. Hang in there~

xxx's

BellaMia~

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clonidine is not a betablocker as I'm allergic to all bb's..

bellamia~

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I'm supposed to start clonidine any day now... I'm just waiting for my doc to call in the prescription. I have problems with pooling as well as excess adrenaline. I am concerned about developing more fatigue, but I'll do anything to help abate the flushing/migraines/fatigue/high BP that accompany any stress or sustained talking. Also, I've read that clonidine is helpful with some types of neuropathic pain and I'm hopeful that it will reduce some of my burning sensations due to small fiber neuropathy.

I'll let you know how it goes!

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clonidine is not a betablocker as I'm allergic to all bb's..

bellamia~

Oops-you're right, Bella! here is a great link that describes HOW clonidine works. From this article it is easy to see how it would help those of us with over active sympathetic nervous systems:

http://www.drugs.com/pro/clonidine.html

The reason I mistakenly thought it was a beta blocker is that it is most often used to treat hypertension. Using it for dysautonomia is probably an off-label use. However, it is commonly used in patients with autonomic dysfunctions and is helpful for many.

I recall that my son became VERY ill when he discontinued his clonidine. He had a paradoxical/unexpected reaction, very low BP and syncope. The opposite is more likely to occur.

Best of luck. Let us know if it helps.

Julie

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I've been on clonidine since 2003 it one of the first meds that i tried for pots, I started taking the patch.. the lowest dose, and over time worked my way up to the #3 dose patch, I did not have the trouble with drowsiness that i do now with the pill form.

I had to stop taking the patch form bc it irritated my skin so bad.

i currently take 0.2mg twice a day of clonidine. It does make me very tired and sluggish, but it helps alot with tachycardia, and adrenaline surges....

hope clonidine is a sucessful drug for you!!

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  • 1 month later...

I take my clonidine strictly at night. The first two months starting it was really bad for me.

For the first month I could only sleep four hours after taking it and then I couldn't go back to sleep. I had to take naps during the day.

The second month I experienced the vivid dreams. I still get these periodically.

At this point I think my body has adjusted to my dose and I don't experience many side effects.

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Clonidine didn't work out for me. Normally, my BP goes up when standing but on even 0.025mg once a day my systolic dropped into the 80's. My heartrate increased on clonidine. I felt very fatigued and near-syncope much of the day.

I think that even though my norepinephrine goes from 254 to 1089 when standing, my main underlying problem is not sympathetic hyperactivity but is actually the pooling. My overactive sympathetic nervous system is actually functional, even though it causes other problems like chest pain, flushing, and insomnia.

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I have hyper adrenaline POTS and take clonidine. I pool and have hypovolemia (missing 29% blood volume without treatment). Considering the above, here's what I know:

Clonidine has saved my life, hands down. (My NE levels without meds on the tilt table were 5000 mg, so I am an extreme case.)

1. Pain: the American Pain Foundation includes references to clonidine in their literature for pain control. This is simply because clonidine reduces NE and therefore panic and stressing up from pain. Also any increase in NE increases pain (I have the articles on this), which might explain fibromyalgia and other pain syndomes related to CFS, which is related to POTS.

2. Clonidine reduces NE. That is why it is a high bp med. For me, it helped stop 90 degree bp swings from sitting to standing. Once you reduce the NE from orthostatic challenges (particularly if you have low blood volume), it leads to increased blood volume and in many of us, solves lots of the POTS dilemna.

DOWNSIDE: Clonidine reduces NE in your brain also, which will counteract most antidepressants and itself may lead to depression. Reducing NE will lead to constipation and affect other body functions. It takes plenty of time to play around with the doses to get it right. These problems are NOTHING to me, compared to having BP of 240/180 and fainting in public or tunnel vision while driving, but you should be aware of them.

Frankly, I could not afford the patch at $240 a month without prescription coverage, but the oral was no good because of the NE swings between pills, so I went back to the patch.

First off, I take a strong beta blocker that blocks both B1 and B2 (that is important). Then I wear a .2mg patch and then I add an oral .1 mg clonidine during the day, depending on how high or low my BP is during the day (have to take my bp a lot to avoid syncope). I max out at .1mg pills time two a day because if I take more, I basically go to sleep sitting up (or become unconscious, whatever).

By complimenting a patch with oral, I can adjust for days when I have decent blood volume and therefore lower bp. If you aren't careful, duh, you will get your bp too low and pass out anyway.

Dizzygirl, Yes, I am allergic to the patch but it is IMPERATIVE, IMHO and experience, that if it works for you, one continues wearing it, no matter how bad the pain and itching, because within 3-6 months the skin in your application areas (top of your arms) toughens up and it NO LONGER BOTHERS YOU. Do NOT wear it on your chest as the package recommends, because that skin is too thin and always reacts (on me).

I've used clonidine since 1997 and without it, I would be gone. Feel free to PM me if you have any other questions. Best of luck.

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Clonidine did nothing for me. I wish I had recorded the dosage, so that I could compare to what dosage people who have had success with it take.

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2. Clonidine reduces NE. That is why it is a high bp med. For me, it helped stop 90 degree bp swings from sitting to standing. Once you reduce the NE from orthostatic challenges (particularly if you have low blood volume), it leads to increased blood volume and in many of us, solves lots of the POTS dilemna.

Maybe in some but not all cases - NE is not always the total problem with Hyper POTS. Do you have norepinephrine transporter deficiency? In some hyper patients the NE levels are normal and they are just hypersensitive to them. Also in NET deficiency sometimes there is excessive vasoconstriction with paradoxical reductions in nerve firing.

Out of interest have your MSNA (nerve firing rates) ever been recorded?

First off, I take a strong beta blocker that blocks both B1 and B2 (that is important)

In some hyper patients they display reduced beta 2 receptor sensitivity - so combined beta 1 and beta 2 isnt helpful for all patients.

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  • 8 years later...

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