Question To Clonidine Users - Edema, Dizzy, Tiredness

[issie]

I've started on clonidine and it has really helped my terrible tacky that I was having hourly and my bp is much better too. But, the side effects I'm having is being really lethargic and more dizzy and the one that has me worried is terrible edema. I've heard that the tiredness and dizziness might get better - but, is edema something that goes along with this drug? I've read a few reviews and the ones that said there was edema involved - most of the people stopped taking clonidine. My edema has gotten really bad in my feet and legs, and has especially gotten worse with this medicine. Anyone know anything about it and if this could be what's causing it and if it will get better? I probably need to call the doctor tomorrow. But, just wondering of others experiences with this. I've decided that I can deal with being tired and more dizzy over the hourly surges and tacky I was having so often. But, not sure if this edema could be an issue or not.

Issie

[LindaJoy]

Hi, Issie. I just started clonidine within the last week. Mine is the patch, and I'm finding side effects, as well. I'm a bit more puffy, too, but not too bad. I think all of my additional issues are due to the clonidine blocking DAO in my gut, causing me more histamine, which is causing my itching and other allergic symptoms. I'm finding myself taking more and more of my antihistamines. I don't know if I'm going to be able to continue on it.

Have you noticed any nose bleeds with yours? I've started those, as well.

I'm sorry I can't be of more help to you with your question. What I've learned, though, over the years is, even if it isn't a noted side effect, if you are experiencing something different in your body after starting a new medication, then that is YOUR side effect and, should it continue and be too uncomfortable for you, then you must stop the medication.

For example, I went on a mast cell stabilizer a few years ago. Right after starting it, I went into kidney failure. For six months, my kidneys continued to be impaired. No one could figure out why. I kept saying, "I started this new medication and then my kidneys went south," but all I got back from docs was, "But, that is not a known side effect with this medication." Since the medication wasn't doing a thing for me anyway, I stopped it, and low and behold, my kidneys got back to normal. To this day, not one doctor will say that medication caused my kidney problem because it wasn't a known side effect, but I know. I, just little ol' me, can't handle this medication.

Take care, Issie, and just listen to you. You'll know when enough is enough or if you can handle this medication. (I think I need to listen to my own advice!)

Linda

[issie]

Linda,

Not having nose bleeds. Just more fatigue and dizziness and terrible edema. I was talking with someone last night and was told that it could cause more edema and works similiar to a calcium channel blocker in that it is a vasodilator but works on lowering the NE levels that gives us the adrenal surges - unlike a calcium channel blocker. But, it could be that I'm vasodilated too much and that's what is causing the edema. I drink coffee in the am and that should help - but, isn't helping enough. Was told to try my compression hose and see if that may make a difference. But, one thing I had noticed with compression hose - is they made my neuropathy worse. So, not sure if that is good either.

I was having edema before I started the clonidine - but, it's worse now. So, maybe need to call the cardio doc. I had also read that this could be an issue caused with clonidine - at least with one other person. But, I'm feeling so much better with not having the hourly surges and my heart doesn't hurt - like it was. But, I'm gaining a lot of fluid weight every day - yesterday over 6 lbs. Maybe, need to add a diuretic - then that will mess up the hypovolumia. There is such a fine balancing act that we have to figure out with these meds. One thing gets helped and 10 other things pop up.

Will see what the doc says.

Issie

[ramakentesh]

Could be too strong. Could be that your sympathetic activity is high because of reduced venous return like nearly all POTSpatients.

[issie]

Rama,

They have me doing 1/4 pill 3x a day of the lowest dose. I was trying only 1/4 2x but, it wore off too soon and then the surges were terrible. They were trying to keep it more level rather then swinging all over the place. But, I have been thinking that it is probably a compensatory thing that my hr is doing to increase blood flow. But, it was so hard and so drastic - that I had to have a break from it. Maybe, just trying to lower NE levels without affecting blood flow. Not sure that would make a difference though. But, knowing that there is high NE and that it can be released for no good reason even with just moving your arms - could trigger it. Seems important to get that more in check and then maybe the increased heart rates wouldn't be so bad. It's when it starts to affect you emotionally with the high NE the anxiety it causes - that is hard to take.

Hopefully, I can figure out what to do - before too much damage is done. I've had several people (nurses) think it is my heart though. I had the edema before starting the clonidine - just not as bad. Waiting to hear from Dr. G - have a call into him - today.

Issie

[issie]

Thinking about Rama's post about the sympathetic nervous system causing the tacky to help with vasoconstriction/vasodilation (?) to return blood flow to the heart and brain - most of the POTS people I've talked to have these surges once in awhile. I was having them nearly every hour and sometimes more than that - they were also waking me up at night and I couldn't sleep because of them. If it were just the sympathetic system ramping up - it doesn't seem like it would be that often. (At least, most people are telling me it happens a few times a day - have talked only a few that it happens more than that and only can think of one that may be having it on an hourly basis - and they don't have him figured out yet - (Potluck - I feel bad for you.) So, maybe the release of NE is the issue creating the tacky and that's why the clonidine is helping that. The only other thing I know that lowers my NE levels and my blood pressure is Tramadol. But, trying to determine if it's just a "NORMAL" sympatheitc nervous system release needed for blood flow - or an abnormal NE release causing extreme hourly surges would be an interesting thing to figure out. What comes first - the chicken or the egg type thing. HyperPOTS is soooooooo complex and complicated. Wish I had more answers.

Issie

[ramakentesh]

Not really sure.

[issie]

Not really sure.

Oh come on Rama - surely you have a theory?????? or an article you can share???

Issie

[ramakentesh]

My theory is that if you have EDS then it is likely that the excessive sympathetic activity is compensating for reduced venoconstrictive apparatus but this is something Ive said to you many times.

You may interpret Beta 1 receptor sensitivity as hyper POTS but postural hypertension can (and one would logically expect without making an assumptions) occur where the sympathetic mediated vasoconstrictive system is functional and is attempting to correct EDS impaired venous return. that is unless you dont actually have EDS?

One would expect that is sympathetic excess was the primary problem, venous return would improve through reductions in sympathetic tone. that is through conventional understandings of hyper POTS - which ofcourse in recent times has altered substantially.

My feeling is that the symptoms are more part of the coping mechanism, and when you dampen that your going to get increased venous pooling. this is on the basis that the most obvious answer is the most likely to be correct, although now days the most obvious answers are rarely the first accepted or the most popular on internet forums.

Licorice can and will cause mild edema in some - most POTS patients have low blood volume so most wouldnt consider this as a bad thing...

And this is heading into medical advice so Ill give it a rest.

[issie]

Thanks Rama for your insight.

Docs do feel for sure I have EDS 3 and all indications are that RX is correct. I have high NE levels and high BP's so that does put me in the HyperPOTS catagory. Having those two RX's confirmed..........the technical reasons seem logical. But, that doesn't mean I can emotionally or physically handle what my body is trying to do to correct veneous return. My bp is high enough to have a stroke (without meds) and the hourly surges whether caused by compensatory things or by issues with NE sensitivity - are just not tolerable without having a bit of a break from it - at least some of the time. (I'm also having PM conversation with a girl that went untreated for the same issues I'm having for over 20 years and now her doctors are only giving her months to live. I wish she would tell her story and others could see that POTS and untreated HyperPOTS with high bp's and high NE levels could be deadly.) She is one reason I decided to go ahead and try the clonidine.

I don't see how one cup of licorice tea a day could cause me to have all this edema - it has some other herbs in it too. But, I do know my body reacts pretty strongly to everything and if such a small dose of clonidine makes me feel mellow and chilled - then I suppose the licorice (could possibly) be affecting me too. A little bit of edema and volume would be a good thing. But 6 lbs. in one day is way too much. I don't think this is a little edema - I think it's a lot and merits being concerned about. If you couldn't get your shoes on and you couldn't button your pants and your fingers hurt to bend them, (I don't think I'm over dramatizing Rama - like you said in your PM.) You would be whinning and wondering what is going on and looking for answers too. Don't forget - you've been there before (quite recently - in fact) - we all have our issues and get to a place where we don't know the answers. If we knew all the answers we wouldn't be on this forum - searching for the answers. We'd all be cured. I don't claim to have ALL the answers or understand the physiology of it all - despite your telling me these things. I never claimed to know it all or have a brain that retains everything I read or have been told. But, I do try to listen and hope that the things I need to know and remember are there for later recall. Or, at least I can remember where to go look it up.

I did hear back from my doctor today and he wants me to STOP the clonidine and see if the edema gets better. Otherwise - they are thinking - it could be my heart. I will also stop the licorice tea and see what happens over the weekend. I know my bp and hr will be completely out of control and I'll be an emotional wreck. The meds warnings say that stopping the med can make things go higher then before you took them. So, not looking forward to the weekend.

Issie

[ramakentesh]

This is why most doctors prescribe polytherapy for POTS rather than monotherapy.

I can be an optional thing - treat the sympathetic excess or beta 2 receptor sensitivity and deal with the dizziness and extra pooling. Or treat the opposite and deal with the short-term boost in sympathetic drive.

[issie]

Well, I guess from having 3 phone conversations with the doctors office today - he's wanting me to stay on the clonidine and go back to wearing compression hose to try to get the edema to not settle so bad in my legs and feet. Of course, that won't help my hands and abdomen - but, maybe it will settle out some with a little more time. I'm thinking there will have to probably be something to pull the edema down other than just time - but we will see. Had someone recommend an abdominal binder - so will get that out tomorrow too.

Issie

[corina]

Hope things will work out well for you Issie!

[issie]

Thanks Corina - me too.

Issie

[brethor9]

Issie

I can sympathize with you I am also one of those people that had hourly surges all day, every day it was miserable...(my best med for that was lorazepam...recently read that it is also a mast cell binder....explained for me why it calms alot of my MCAS stuff down). I mostly have high BP with high tachy but if I get episodic enough it will go to the other end of the spectrum. I recently had to suck it up and give in to being put on a tiny dose of beta blocker but am finding its wreaking its own havoc now I am edging into bradycardia and BP under 90......and it makes the pooling and Reynauds sooo much worse....and like you I have been getting horrid water gain. You are definately right 6 pounds in one day is not normal and is not good for your heart....thats fluid build up.....hope your docs can get you figured out. I was thinking of trying clonidine but now not so much......hate this illness..its always such a catch 22.....wish we could all just shut down and reboot the system hang in there Issie...Hugs

Bren

[issie]

Bren, if you have MCAS the beta will make it a whole lot worse. Before I knew I had histamine issues I tried about 5 different betas - all made me worse. Even though the clonidine is causing more edema - I have to say that it is the first med I've tried that has been worth the side effects. It really helps the hyper responses and has made my bp's and hr's more normal. Don't let my having edema - be a deterring factor of trying this one - your body may react totally different.

Issie

[ramakentesh]

ive heard surges before but I tend to find that they disappear when the dizziness does for me. Volume expansion seems to help in my case. But everyone is different.

[brethor9]

Thanks Issie! I was warned about the beta blocker making the mast cell worse but my auto doc felt it was absolutely non-negotiable as I was having irregular heart rythmn not just tachycardia anymore. I am on a really baby dose but it still sets me off. We are trying to find an alternative...he is thinking maybe a CCB or Ivabradine or Clonidine next...... its hard having 2 illnesses that work against each other isnt it?

Bren

[Schorobi]

Bren, I have hyper pots. Clonidine works great for me. I don't have any side effects. The patch is much more effective.

[brethor9]

Thanks Schorobi! Thats good to know does it effect your blood pressure at all? I mainly have high but it swings alot and can go as low as the 90's on some days...thats why the beta isnt working so well

Bren

[Schorobi]

Yes, my BP has been exactly as you describe...usually too high, but sometimes SBP as low as 90. My BP was always low/normal until the POTS started. My supine norepinephrine was 1300, upright 3300. Yes, the clonidine has helped my BP a lot. Let me know how it goes if you try it.

[issie]

I wish I could use the patch - but, right now on the lowest pill - I can only use 1/4 of it and they have me spacing it out 3 x a day. It works good on the bp and hr and not noticing that it is dropping me too low either - much more balanced all the way around with bp and hr. I was told that the tiredness and dizziness would get better with time. Like I said, it's the first med that I thought was worth the side effects.

Issie