Clonidine

[mvdula]

Anyone here try it? Did it help? Side effects? Addictive?

[Kitsakatsa]

I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased.

It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed.

What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan.

Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that.

I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS.

Kits

[Notgivinup]

Clonidine is an alpha beta blocker. It simultaneously lowers B/P while dilating blood vessels at the same time.

I've been asking for it, but alas, my doctors won't give it to me. No idea why. I'm told I have the hyper POTS by one doctor. Then told I don't by another.

****deep sigh****

Glad it works for you. Isn't it great when you get a good doctor AND a good medication.

[Kitsakatsa]

How does it help POTS if its a vasodilator? Wouldn't that shoot POTS all to heck?

Does it work because it dilates, then the body over-reacts and vaso constricts past the base point?

Don't get it.

Kits

[erik]

Reportedly, it results in less neuronal norepinephrine release (by activating one of the negative feedback loops involved in neural "modulation"). So it is presumed to help in a condition characterized by excess sympathetic stimulation, by blunting the release of the primary sympathetic neurotransmitter. It "tones down" sympathetic activity at a rather early/central point in the chain of events... earlier than something like a beta-blocker which tends to be impeding a step later down the line.

[Lenna]

Does the clonodine make dizziness any better or worse?

[Kitsakatsa]

Reportedly, it results in less neuronal norepinephrine release (by activating one of the negative feedback loops involved in neural "modulation"). So it is presumed to help in a condition characterized by excess sympathetic stimulation, by blunting the release of the primary sympathetic neurotransmitter. It "tones down" sympathetic activity at a rather early/central point in the chain of events... earlier than something like a beta-blocker which tends to be impeding a step later down the line.

Thank You!!! You are so smart.

Kits

[Kitsakatsa]

Does the clonodine make dizziness any better or worse?

I only had dizziness because of taking ritalin. Then, I swapped it for Adderall and the dizziness went away.

So- I don't know, sorry.

Kits

[bjt22]

I've used Catapres/clonidine for many years. One of the most helpful drugs that I've taken. For people with autonomic neuropathy as at least a partial cause of their POTS, it seems to actually promote some vaso-constriction. In effect, I can say that it helped even out my blood pressure. Not nearly so many extremely high spikes. I do need to take a beta blocker as well to keep my heart rate down and my blood pressure a little more evened out. This all makes me tend to run very low...but while I'm still very orthostatic, I feel better being orthostatic with a lower blood pressure than I did with a spiking blood pressure and sky high heart rate.

Recently, a rival, once a week generic Clonidine patch became available. I switched over to it from the Catapres to save $40 a month. I think I'm going to go back as there's something about the generic patches that keeps them from adhering as well. I used Catapres for nearly 10 years, and during that time, I think I only lost one or two patches and only had to use the adhesive "over lays" a few more times. After a couple of days, I'm struggling to keep the **** clonidine patches on. This week, for whatever reason, I've had more luck...I'm at day five and it's still stuck on without an over lay. Not been the case for the previous 2-3 months, however. I wonder if the adhesive isn't causing a good connection with the skin if the patch is able to deliver the medicine as well?

[Claire]

On 3/2/2010 at 11:02 PM, Kitsakatsa said:

I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased.

It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed.

What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan.

Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that.

I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS.

Kits

Can someone tell me. Does Clonidine help Pots or not? Really like to know anyone’s experience or info. Weaned off it and now suffering serious anxiety even though I am on Lexipro nd that was working fine. 

[Pistol]

@Claire - I took clonidine once and could only stand it for 3 days. It made me very sleepy and at night it made my BP go skyhigh and I got terrible anxiety ( not at all normal for me ). I felt absolutely horrible on it. I had that anxiety when I stopped it too, thank god only for a few days, than all was OK. I hope it will be over soon for you too. How long did you take it before stopping?

[p8d]

@Claireit’s used, as far as I know, only for hyperadregenic pots.  I find it extremely helpful.

[tapktp]

I have had PAF for over 20 years. While ortho BP drops by as much as 100 points (systolic), the last three years I've experienced supine hypertension - as high as 200/140.  Tried Chlonodine at night. Made my blood pressure rise dramatically.  I found an article indicating this could (rarely) occur if the patient has idiopathic orthostatic hypotension!

[Lily]

I take Clonidine.  It does help me to feel like I have less sympathetic nervous system activity.  Plus, I don't have to pee every time I stand up.

 

[Claire]

On 3/2/2010 at 11:02 PM, Kitsakatsa said:

I have been taking Clonidine for about a year now. The FDA approved use is to lower blood pressure. That said, if you're blood pressure is already low or normal- I don't think it does anything. I have not noticed low blood pressure with it. My Midodrine use has actually decreased.

It does something unique in POTS patients. I don't understand it- but my brilliant doctor suddenly came up with it. He is constantly reading stuff about POTS. I know. I am really blessed.

What it does for me is that it has decreased my morning nausea by about 80%. Wham Bam- very next day. It was incredible. Whatever it does for POTS- I'm a big fan.

Anyhow, I take 2 pills at night. The stuff will knock you out cold when you first go on it. When I first got it from the pharmacy, I knocked back 2 pills. Big mistake- felt like I was under anesthesia. The sleepy effect wears off about a few months of use. There is a patch that you can get for constant dosing, but unless you are unemployed with no plans to drive a car I am not sure if I would recommend that.

I don't know if it is addictive. I'm not really worried about that. I do know that you cannot stop it immediately. It must be tapered. The drug advisory says that stopping it immediately could be life threatening. Once, I forgot to take my nighttime pills and the next day I was sick and had the worst headache. I keep a stash of clonidine in my purse just in case of terrorism or whatever. I keep enough to taper down on and then I don't worry about it and enjoy the benefits of the medication. Besides Florinef, I credit it for giving me the ability to get to work without crying my way there each morning. It has really helped me be less miserable with POTS.

Kits

I know this is from 2010 but I am trying to figure out if Clonidine helped 

 me be able to stand and walk around in the mornings cause my blood pressure is so low. When I took it, it seemed I didn’t have the problem with having to constantly sit down because of the blood pressure but I started having nightmares and chest pain so I weaned off. So, not sure if the pots in th morning is worse because I stopped or what. Does anyone have experience with this particular problem.  Thank you for any suggestions.

[Claire]

On 8/13/2018 at 5:37 PM, p8d said:

@Claireit’s used, as far as I know, only for hyperadregenic pots.  I find it extremely helpful.

Can you tell me how it’s helped? Thank you. 

[Claire]

How do you tell the difference between hyperadregenic pots and another type of pots. My Dr said pots is pots. No help there.

[p8d]

POTS is not POTS.  There are tests for catecholamines, specifically norepinephrine, that indicate hyperadregenic POTS.  The blood test part has to be done after laying down for 30 minutes then after standing for I believe 10.  There is also a 24 hour urine test.  Treatment is different for it and includes alpha blockers of which clonidine is one. You might want to do some research on POTS in general and hyper POTS specifically if that’s suspected.  The DINET website has lots of information.  You might take these to your Dr or find an autonomic specialist.

[Pistol]

@Claire there are several different types of and mechanisms for POTS. The biggest different is that most types of POTS cause vasodilation which in turn causes orthostatic hypotension, tachycardia, syncope, blood pooling etc. Hyperdrenergic POTS causes vasoconstriction which causes tachycardia, HYPERTENSION etc. Some forms of POTS are from EDS which causes too much collagen in the blood vessels and they cannot constrict properly. Then there is the neuropathic POTS, where the nerve endings serving the blood vessels are missing or damaged. Another type is the hypo volemic POTS in which the body constantly feels like there is not enough blood. Hyperadrenergic POTS means that neuro transmitters like norepinephrine ( adrenalin ) are elevated. They tell the blood vessels to constrict since they are produced from signals of the sympathetic ANS. If they are too low then that causes other issues such as fatigue, slow heart rate etc. It also effets the GI system, causing either a too active GI system or too slow ( as in gastroparesis.). ---- Now you see that your doctor has no clue about POTS if he claims all POTS is the same. Many types of POTS share symptoms but none are exactly alike.