Crazy adrenaline surges for 5 days

[Irinasis33]

Dear all - I’m new here so forgive me if this has been discussed before. I have EDS/POTS but not diagnosed yet re CFS. About 6 months ago I had terrible PEM and started having crazy adrenaline surges non stop. My doc gave me propranolol and Zopiclone to sleep. The surges were eased within a couple days.

BUT I have just been in the worst flare of it again. Huge physical and emotional stress then started getting these surges constantly for 5 days now- plus so sensitive to noise, stimulation, even talking, that anything made me surge like the worst panic. Beta blockers no help. My doc has now given me Diazepam which is helping but I’m scared about taking it and becoming dependent. I don’t know very much about CFS yet - is it possible to be so fatigued that this could be happening? Or it might be my POTS. Waiting for appointment with my autonomic doctor. Meanwhile I’m quite scared by it all - by the surges, and by the meds! Any advice, or similar experiences ???

Many thanks xxx

 

[skwag]

Hi @Irinasis33

I've found that Clonidine is very effective for these types of episodes. I take 1/4 of a 0.1 mg pill, so that is just 25 mcg ( micrograms ).

Clonidine supresses the release of norepinephrine ( R ), and for me at least, takes care of that jacked up, overstimulated, adrenaline feeling.

Some of the other effects of clonidine, like ( possibly ) lowering BP, are not ideal for a person with POTS, but I find it worth the trade off during intense episodes like what you are experiencing now.

The good thing about clonidine is that is has a low addictive potential, and it is really cheap since it is quite old.

Good luck

 

[taniaaust1]

Hi Irinas.

I was taking Clonidine for my adrenaline surges and as the other said it can be quite effective and is a suppressor of excess adrenaline happening. It works on the body as a balancer. I started off with only 1/4 of a pill and after some time increased it up to 1/2 pill.

My doctor told me as the action is on excessive adrenaline, it should not drop the BP too badly though it is a drug used for high BP as it works through the adrenaline suppressing unlike how other BP lowering drugs work. So this drug can be used for those people like myself who have wildly swinging BP, mine goes both very low and very high.. and this helps to balance.

" I have EDS/POTS "

I dont know if you are aware but one can develop POTS of the sort where you get excessive norepinephrine (adrenaline). This is not uncommon in ME/CFS and that is what I take the Clonidine for having that kind of POTS.
Anyway, with that symptom along with your POTS, you may well have the same issue.

If you have a BP monitor start taking your BP at various times esp when upright or standing as it may be going also very high at times with this issue too... doing large spikes. If it is going up into dangerous levels, take care that your doctor does not give you the wrong kind of BP drug.

things like stress and fatigue can trigger off POTS and it's associated things worst.

 

[Irinasis33]

Thankyou both so much for your advice. I didn’t know if this is a CFS thing or a POTS thing or some other problem. I’m sorry other people get it too, as it feels horrendous, but I’m also reassured to know I’m not alone!

 

[PatJ]

Here are a couple of quotes from other threads on PR:

From Basilico on PR:
My husband has had this issue a lot. For him, most of the things that cause the excessive adrenaline issues in some way do so by triggering a vagal nerve response. Also, his MAO system is not very efficient at breaking down adrenaline (which we learned after getting his genetic testing done), so when he gets an adrenaline burst, it lasts much longer than it should.

In terms of dealing with the adrenaline burst after it's already happened/happening, we've not found a magic bullet, but we have come up with a bag of tricks to help deal with it - he does sometimes need to use either Propanalol [or] Xanax works much better for him.

Additionally, we've found that being in a really cold environment (like A/C full blast) seems to prevent it or reduce it pretty quickly. We learned this after one of these attacks sent him to the emergency room, but after sitting in the waiting room which was really cold from excessive A/C, he suddenly felt much better. After that, we've tried experiments with turning the A/C really high in the car or at home, and it seemed to really help.

But probably what we try to focus on the most is preventing it from happening as much as possible by avoiding triggers. For him, there seem to be several triggers that prompt his wonky vagal nerve to trigger an adrenaline attack. His triggers are: low blood sugar, low blood pressure, and needles (so acupuncture was not really successful!).

He still is prone to excessive adrenaline, and it's probably something he'll have to deal with for life, but after taking a really good round of Mutaflor probiotic, a majority of the crazy adrenaline attacks just eventually stopped. He credits the Mutaflor for that, and I think it was likely that the Mutaflor did have a really big impact for him. Since gut flora control neurotransmitters, that's not such a stretch.

Also, certain supplements seem to trigger adrenaline attacks - for him, specifically P5P (B6). I don't know if you are taking any B vitamins, but if you are, you might consider testing them/suspending them to see if anything changes.


from belgiangirl on PR:
Another trick might help to lower your adrenalin in the body is this once told me by an older GP when I told him about my heart racing thing:
1. Start breath out as extremely slowly as possible, make it the longest outbreath you could ever do, it may take minutes (of course don't get dizzy or don't nearly try to kill yourself ).
2. Then breath in very quickly.
3. Then repeat: breath out extremely slowly ...

Most people's heart rate goes up when breathing in (adrenalin also) and goes down when breathing out.

 

[Irinasis33]

I cannot Thankyou enough for this. It’s so frightening but this is really helpful and practical. Thankyou so so much