Catecholamine Dumping???

[brethor9]

Hi All!!

So I have another odd question I am looking for input on?? Over the last year or so I have been having alot of issues with my spine, nerve pain etc.....about 6 months ago I had a spinal tap to rule out MS and other diseases unfortunately a few days later I developed a spinal fluid leak and had to have a blood patch. Here is where it gets weird; when the specialist did the patch initially it mirrored all of the severe head pressure, etc I had been suffering only amplified by 1000...then 2 days later I was almost symptom free!!! That lasted for 3 weeks then I hurt my back again and within hrs was completely bedridden by symptoms again....a 2nd blood patch followed...again with the same results...weird right??? I was doing ok until last week when a uninformed Dr in emerg decided he was going to adjust my spine without even asking my history (frightening right?) before I knew it the damage was done...again several hrs later I was unable to walk and bedridden for over a week to present. My specialist is doing an MRI to rule out a CSF leak but his other theory is this.... when I get hurt or severely stressed could my body be catecholamine dumping?? and causing these strange episodes??? I have been diagnosed with very high amounts of adrenaline and severe sensitivity to norepinephrine......these episodes literally make me feeling like I am having a stroke...severe lightheadedness/head pressure, neck pain, complete loss of balance, migraine, massive surges, nerve pain, burning toes, numbness in left arm,chills..the list goes on and it lasts for days to weeks...does anyone know anything about catecholamine dumping syndrome?? I am still waiting to hear from my specialist...I would love any input

Thanks

Bren

[Chaos]

I have had something like what it sounds you are describing. It seems to me it has to be something "central" that causes such a tidal wave of symptoms to occur so suddenly and then last for literally weeks to months. The last really bad time I had was during the catecholamine testing they did at Mayo. I walked in feeling fine and had to leave in a wheelchair and was wiped out for 2 months afterward.

I was sent to the ER once by a physician due to the numerous symptoms that had suddenly onset while I was in cardiac rehab one day. The ER doc totally blew me off and then proceeded to hand me a list of symptoms that, if I had any of them, I should return immediately to the ER. HELLO! I had 80% of them when I was wheeled in this time and you blew them off. Why on earth would I EVER go back there?

Both of these episodes were associated with a large amount of stress in my body, so it may be like what your specialist is describing. I've also had episodes occur after several days of significant pain from dental issues, or after surgeries. It seems to me that my body has a threshold for which it is willing to tolerate and then once that threshold has been crossed, all **** breaks lose, "SOMETHING" gets triggered and then it's back to weeks or months of trying to slog my way back out of the hole that was created.

Sorry you have to deal with this as well, but glad to know others have similar experiences. Welcome to the forum!

[lieze]

I don't want to sound like a dork but this is making a lot of sense to me that the release of the chemicals into the bloodstream are what make us so symptomatic that we feel we are in danger enough to do the 911 call...I've done it many times but as soon as those levels decrease which an IV probably helps "water down" our symptoms subside and the ER staff looks at us like were just having some bad anxiety.

And those chemicals get released at the drop of a hat at times, just out of the blue, with stress, in traffic, you name it it happens....and we are just left feeling vulnerable to try to do anything.

I'm sorry I'm so dense....I don't know if it's related to my overall health or I'm just slow period.

[potsyturvy]

Lieze, you don't sound like a dork. It makes sense to me too. I had an episode like that in January. I had my ingrown toenails removed and ended up bedridden for 3 months because my POTS symptoms were so bad! I tried to get my doctor to test my catecholamines while I was so sick, but he wouldn't do it and gave me an antidepressant instead (which helped but I'm figuring that's because my adrenaline levels were too high!). I would be very interested to hear more about this. I haven't heard of catecholamine dumping syndrome, but would like to hear more about it if anyone has any information on it.

[Birdlady]

Have you ever been evaluated for Addison's disease? Almost sounds like an adrenal crisis in my opinion. Perhaps you are ok from day to day, but when you are under stress your body cannot put out enough cortisol for the stress.

[songcanary]

Lieze,

Your reply is exactly what I haven't been able to put into words. I really crash with any kind of stress and this theory makes so much sense. I wish I knew what my catecholamines were doing under those circumstances. But I could take an educated guess, that's for sure

[lieze]

One of the problems also is they don't do this kind of testing in ER-why I don't know so we go in pumped full of all types of chemicals and my guess is levels are high and why we get so symptomatic but it goes undiagnosed.

I often get more waves laying there in ER where I start feeling bad get waves of lightheadedness and feel the impending doom start thinking Omg I know they are just going to come back with horrible news and I get tearful.

It's a vicious cycle.

I've had my cortisol levels checked just this past month and three years ago and they were normal.

It's so hard to just ride these feelings out...I've literally had the feeling that I want to just scream right out loud, shake and cry.

[brethor9]

Hi Guys

WOW! I am amazed to hear that so many of you suffer from similar episodes!

CHAOS- I know what you mean about the catecholamine testing because the same thing happened to me. When I had the autonomic testing for the catecholamines ie adrenaline etc for weeks afterword I couldnt even walk...(Its like a feeling that my feet are being pulled through the floor, major lightheadedness, no balance, just really bad!!)I know its somehow related because one of those tests involved shooting me with pure adrenaline and I reacted within 5 secs...definately not normal!!

LIEZE- you are never a dork! We are all here to learn and ask questions

So I think it is a plausible theory that in those of us who are extremely sensitive to or have already high levels of catecholamines could be experiencing dumping in times of elevated stress or pain. That our systems become so flooded that it could take days or weeks for it to disperse because we are literally drowning in it..... Its funny I never would have related it all if it wasnt for this other specialist mentioning the pattern coinciding with pain episodes.

The other question would be why does the blood patch help?? His theory to that is; because I experience pooling in the extremities and the patch infuses a large amount of blood back into my upper body that it could be providing symptom relief because blood is circulating better....weird concept but with the way our systems are I suppose its possible. I hope to have an answer from my ANS specialist soon as I am really curious on his take on it....

Thanks guys!

Bren