Clonidine Increases Blood Volume?

[brethor9]

hey Mcblonde I am having issues with Florinef lately too......I went off for about a week to have some tests...started to downslide and now I am trying to get back on but having major tachy, jitters, mood swings....higher BP......arrggh....its one of those drugs that seems to turn on you in a minute!...and now I dont know what's causing what......

[McBlonde]

That's so weird...... I wonder if it could be something in the brand itself, like a filler?

[issie]

Thanks Issie I knew you would come along and straighten me out lol......its the MCAS that is the wild card....because of that meds just don't work the way they should never mind the dysautonomia on top of everything. I asked my specialist to try me on clonidine but he didnt think it was a good idea? he said it was something to do with my possible underlying peripheral neuropathy? if I understand correctly it can affect how the nerves signal to the blood vessels? and that is where my body may be having a problem.....if that makes any sense...... what am I saying? NONE of this makes any sense

Bren

NE has a good bit to do with signaling of the nerves - with those of us that are HyperPOTS and have higher NE levels - the clonidine does supress this. It was a welcome relief for a little while - but, I just couldn't stand being so tired all the time. I was one mellow person and really enjoyed the calm. But, had to get my brain to working better (ha! wish it would work all the way - brain fog - hate it!) With MCAS it is one that seems to agree with us - at least short term (for me). I have neuropathy too - but, didn't notice that the clonidine - made that any worse. It did lower my bp through. It leveled out the highs and stopped the lows. I was more balanced all the way around - but, did seem a little more dizzy on it. Cause thinking I need some of the hikes to regulate the blood flow to my brain - it seems to be a compensatory thing. I think we just need to learn to walk on our hands and then we will get enough blood to our heart and heads and we should be okay. LOL

Issie

[comfortzone]

I hope to get some clarity soon on this question myself. I have always run in a hyperadrenergic state - first time I was told that was in my 30's - I'm mid 50's now. I was having very unstable/labile b/p's - and then the holter showed runs of PAT, some other things that basically equalled 'palpitations' ... and a baseline HR of 100. Also regular old hypertension. After a few different trials of meds to slow the heart rate and get rid of palpitations - and possibly stop the orthostatic intolerance - (faint like feelings when b/p low) - I ended up on Propranolol, Clonidine and Dyazide.

Then I developed a couple of bizarre things for me - one was profuse sweating - any and all the time - just pouring off me - soaking clothes throughout the day - and sometimes at night - requires mopping the face etc... this is not anything I'd ever really had before except it began in menopause - but only really took off about a year ago at most - with this horrid sweating.

The other thing was a rushing, flushing, gushing swoosh into my chest and upper abdomen with the movements in bed upon awakening in the morning - same if I lay down to rest during the day and then get up again - sometimes this is accompanied with chest pain.

I told my neuro about this and he said, "unfortunately Clonidine can increase pooling" - but that's all he said. And we went on to talk about other things. I just called today to speak to the nurse and told her I simply cannot keep adequately hydrated with this amount of sweating and also this chest sensation sometimes comes with mild pain - I then asked her to ask the doctor what he meant by his comment - such as - is Clonidine the cause of these two symptoms - like a catch 22 - it helps with the b/p and things like that - but might it be causing these other two things....

Hopefully I will be hearing back from her soon - I'd hate to begin again messing around with med changes - as this combo does effectively get the b/p down - and I really need it - forget one dose as I did the other night and I have a raging headache in the morning and diastolics over 100.... I still though get too low during some days - but it's a never ending battle to get the fluids in which would probably help things....

I may not hear back till Monday - but maybe next week I can share what he said? Hope so - because increasing blood volume per the OP's title question seems to be a good thing - but it sounds like my doc thought it increased pooling which is different altogether I think - I'll have to read all the responses too... thanks!

[sue1234]

I don't really know how drugs work on receptors, but I was learning about pheos before I was learning about POTS. From what I understand, with the high adrenaline in pheos, they start them off on an alpha blocker first, like clonidine, to relax the blood vessels. The high adrenaline casues vasoconstriction, which causes the body to want to lose fluid as a way of bringing the blood pressure down.

So, take the alpha first to calm down the body wanting to lose fluid. In this fact alone, the body will begin conserving more fluid, thus slowly building up the blood volume again.

To finish this thought, when they calm the b/p down, of course pheo people are hypovolemic, so they are encouraged to spend a couple of weeks taking in salt and fluids. When they have built up their fluid level, THEN they get on a beta blocker, which will lower their heart rate. If they would have gotten on the betas first or right away with the alphas, they might have collapsed without the higher heart rate helping the circulatory system.

Anyway, I see POTS as having a similar issue. We have all that adrenaline from just doing daily activities such as bathroom trips, kitchen trips, etc.

Which reminds me, I REALLY need to get off my caffeinated iced tea!! I can't think without the caffeine, and feel awful slow and pooly, too. But, maybe after a few weeks I could up my fluid status and possibly feel better??

[Anoj]

thats weird Mcblonde!..... I have major high catecholamines and yet my specialist put me on florinef and beta but did not like the idea of Clonidine....he suspects my nerves are effecting the constriction/dilation issues and somehow Clonidine adds to that....I forget the whole explanation ......goes to show how treatment can vary so much

Bren

I know! Here's the link to the treatment plan: http://circ.ahajournals.org/content/117/21/2814/T2.expansion.html

what does PD and H mean in this study?

[sue1234]

PD-----Partial dysautonomic

H-------Hyperadrenergic

No, I am not smart....I opened the article and found it! I had no clue what they meant either! After reading the description of both, it doesn't seem like I have one or the other. It seems like I have a combination of both. Weird.

[ramakentesh]

that break up is now murky - the terms being used often post 2012 are neuropathic and non-neuropathic POTS.

Neuropathic POTS - QSART abnormalities, small fibre neuropathy, higher supine heart rates and blood pressure.

Non-neuropathic - low aldosterone

- low aldosterone/increased angiotensin II/low blood volume/sympathetic excess

- acquired NET deficiency (abnormal MIBG reuptake, hypersensitivity to yohimbine, decreased sensitivity to tyramine

- MCAD - may be related to one form of the above.

https://docs.google.com/viewer?a=v&q=cache:PQNSKoLpKWYJ:10thintcatsymp.org/presentations/tue/10AM_NAUTILUS_9.11_RAJ.S.pdf+postural+tachycardia+2012&hl=en&gl=au&pid=bl&srcid=ADGEESjUhBpEBTPYV-tZiATIur_HhZf6W0RrkFYLzNvZrARNm_IfPHNoro6QqkDLc0W87gaasgivat_TKmozVDWmInwxyeUSh8RNkbIzRVzmFSwjmGu1fgTycOEo1IGTmKLm2S_T4cbF&sig=AHIEtbSYmFZi3m7eF_L9acLbP777XULTnA

[corina]

Rama, thanks for reminding me of that poem, the blind men and the elephant! I think it so fits in with diagnosing and treating POTS. I know it's a syndrome which means that there are more/many things involved, but where to start?!

[ramakentesh]

Rama, thanks for reminding me of that poem, the blind men and the elephant! I think it so fits in with diagnosing and treating POTS. I know it's a syndrome which means that there are more/many things involved, but where to start?!

Exactly! Maybe a brain transplant and a new body?

[corina]

Hahaha, I can't tell you how many times I've been thinking those exact same words! I even asked my doctor about them. Unfortunately there was nothing for sale at the time

[sue1234]

I'll take one!!

[looneymom]

So glad this was posted. The cardiologist is wanting to put my son Clonidine.

[davecom]

In this study, Clonidine increased blood volume 12% in patients post treatment:

http://journal.publications.chestnet.org/article.aspx?articleid=1054942

[looneymom]

Thanks for posting this article. Since my son started taking the 2mg of clonidine at night, his blood pressures in the morning are much better. In fact his blood pressures are like normal readings l 110/75, 114/78, 116/80. This has been happening the last two weeks. Have you started the Clonidine yet? Are you noticing anything like this. My son has been on this nightly dosage for about 6 weeks. The strange thing was when he took 1 mg mid morning, I could not keep his blood pressure up, his heart rate would drop way down and he would get very tired. So the cardiologist said to stop the morning dosage. For some reason the clonidine seems to help him more at night but I still don't get it. If my son has high NE levels at night then the clonidine would calm this down but according to this article it will raise blood volume, so this would raise up blood pressure up also. Why won't the clonidine work like this during the day? My guess is because my son it sitting up and not laying down. Are you seeing any improvement since you have started taking the Clonidine?

[davecom]

I haven't started yet. My doctor warned me that in all of his patients on clonidine there is often discontinuance due to side effects, namely extreme fatigue. Perhaps side effects were affecting your son greatly during the day, but at night are helping him sleep and you're still getting the benefit of the blood volume expansion?

[looneymom]

That's what I'm thinking. My son is still waking up several times through the night. I think I'll ask the doctor to see if it can be increased another mg. Maybe he would sleep through the night. My son has been off his florinif for over two weeks and his blood pressures are still staying up. Florinif also causes sleep problems. So maybe when this gets out of his system, he will sleep better.

All medications have side effects. It's too bad that it's so much trial and effort with POTS. Had I know about the side effects of florinif, I would have never kept my son on it. I don't want my son to suffer but he wants his life back. So taking a chance to see if a medication works is worth the effort at this point.

[davecom]

Yeah you have to take chances sometimes... My doctor said clonidine is pretty benign as far as risk profile goes, although it is not safe to stop suddenly, like florinef. He said most people dislike the side effects, but that it's not a "dangerous" drug in his opinion when used at relatively low doses.