What Symptoms Are Common With High Norepinephine Levels?

[looneymom]

I've been reading about norepinephrine but I am confused about symptoms for high levels. Just wondering what symptoms that you deal with from day to day. Is a severe headache and sensitivity to touch a symptom?

[tachyfor50years]

Looneymom,

You can find your answer here:

http://www.livestrong.com/article/138774-high-norepinephrine-symptoms/

[looneymom]

Thank you. I missed this one.

[bebe127]

I know this has been on here before, but I can't find the threads. Can anyone say what tests dr.s do to find out if one has high NE levels?

[Guest Alex]

blood catecholamines - lying down and supine (some facilities/drs) do this during the tilt table test are used to determine one's epi, norepi (and dopamine?!) levels.

Alex

[bebe127]

This is done by blood draw I'm assuming? During my TTT they did no other tests and no one has ever suggested any other tests. I've often wondered if I have hyper because my bp rises and from the above article, the only symptom I don't have is sweating, unless of course I have a flushing type thing going on which is rare.

[bebe127]

Duh...sorry, I just realized you said blood catecholamines. I'm having that kinda day

[bebe127]

Are these levels tested to determine what type of POTS one might have ie: Hyper, etc.?

[Guest Alex]

correct Bebe it's a blood test

It can be done outside the ttt setting though - can you ask your dr to request that for you?

The sweating ...some people with dysautonomia have impaired sweating- I believe due to small fiber neuropathy (there is the QSART - quantitative sudomotor axon reflex test) measuring the autonomic nerves responsible for sweating as well as periphrral neuropathies.

I think you can have high NE levels and impaired sweating at the same time.

My understanding is that the blood test can help decide if you have hyperPOTS.

Alex

Edited May 5, 2013 by alex74alex

[bebe127]

I plan on going into the dr. soon and I want to get all information on testing that I can get my hands on. When dx. in 2009 the EP told me that I "probably have POTS". That's where he left it. He wouldn't/couldn't treat me and couldn't refer me to someone that could. He never told me there were different types nor suggested other testing. He told me to eat more salt and drink more water. Never put me on medication. Went in for a follow up and I explained all the symptoms I was having and he told me that he didn't know why I was experiencing all of them and that people live normal lives all the time with POTS. Now, four years later I am questioning even if I, in fact, have POTS. With the high NE levels, I do experience headaches (daily and sometimes migraine type that can put me in bed for three days), palpatations, have had issues with high BP although am now on BB's but still have spikes at times, anxiety issues, sometimes severe although since being on Xanax they have reduced considerably, nausea, but never vomitting.

I would like to know whether I have any other issues. From what I've learned in my reading, I suspect Hyper POTS, possible MCAS, possible Grave's, possible Meneires. I want to find out what type of testing I might need to get done so I can suggest them to my dr. and hope that he doesn't look at me like a crazy person.

Sorry to take over the post, just trying to get as much info as I can before seeing the dr. next.

Thanks for your input Alex

[bebe127]

Looneymom,

Sorry I've monopolized your post. I do hope you get some answers and so sorry your son is going through this. I hope he feels better soon. You are such a good mom

[Kris4444]

I have high NE levels. My symptoms are severe flushing and vertigo, especially with exercise. Heat and cold intolerance. Flushing when eating (random foods) and flushing with alcohol.

I am on an SNRI which I think may be making my symptoms worse so I am weaning off of it with the help of my immunologist.

Hope this helps. Good luck.

[looneymom]

That's ok Bebe. I have discussed this type of testing with my son's cardiologist. However, with his current condition, my son would have to be put on a tilt table to draw blood. They draw the blood first while lying down and then you also have to stand for at least 10 minutes so they can draw blood again. Because his symptoms are so bad right now, the cardiologist does not want to do this test. He is afraid it might cause his symptoms to become worse especially because he has to be in an upright position for at least 10 minutes. My son most likely would pass out. The cardiologist suspects high NE levels. Thursday night my son started taking Clonidine. Some of his symptoms are better. The cardiologist said that I could notice some improvement in 48 hours.

I have learned that dopamine converts to norepinephrine. In a stressful situation the body will start to do this (as in having a double round of flu). I'm wondering if this is the reason why my son has no dopamine. Norepinephrine also sends signals to the nerves. If a person has too much of this, then too many signals are going out to the nerves. I know this chemical is found in the brain and I'm beginning to wonder if my son has too much of it. He does have flushing and sweats bad during the night. I also think the adrenal glands are involved in producing norepinephrine. I'll keep researching and share what I find. Hope others can share their experiences with us.

[looneymom]

Kris, just wondering what SNRI were you on. You can p/m if not comfortable answering. Was it causing a reaction with other medications? Sometimes its hard for me to determine if a medication is causing a side effect because of all the strange symptoms associated with POTS.

[looneymom]

Alex is Hyper Pots the same as hyper adrenergic POTS. My son's autonomic reflex screen at MAYO was abnormal. In the conclusion it said hyper adrenergic states may be present. I'm really trying to understand exactly what this means.

[Kris4444]

The name of the SNRI is Pristiq.

[Guest Alex]

Alex is Hyper Pots the same as hyper adrenergic POTS. My son's autonomic reflex screen at MAYO was abnormal. In the conclusion it said hyper adrenergic states may be present. I'm really trying to understand exactly what this means.

yes, hyper POTS = hyperadrenergic POTS

Alex

[Kris4444]

looneymom that is my diagnosis from Mayo as well. Yes, hyper pots.

[Psalm 23]

I believe.Hyper Pots is just the abbreviated term for hyper adrenergic POTS. I am a bit confused myself over the Mayo terminology. My diagnosis from them is POTS with hyperadrenergic response amongst other things. I need more clarification when I go back the next time. In any event I have high NE levels. Supine 1236 and standing 2922. My supine dopamine level was also elevated. My worst symptom was extreme tremulousness / jitteriness. Of course the longer I tried to stand the worse it would get. I dont experience many of the other symptoms that are common with high NE levels such as headaches, anxiety and excessive sweating ( I have the opposite problem ). I do experience more of the typical neuropathic POTS symptoms. I was prescribed clonidine back in 2011. For me it has been a wonder drug in terms of controlling the extreme tremulousness. The starting dose was 0.1mg but I stopped there because that was as high of a dose as I could tolerate.

I'm so sorry for what your son is going through. I hope you find some answers and helpful treatment.

[ramakentesh]

Actually some of the 'hyper' symptoms can be caused by compensatory adrenalin/epinephrine release and beta receptor supersensitivity.

When NE leaks into plasma as occurs perhaps in NET deficiency its lost to the body and its reception of it - unless its in a sympathetic synapse it has very little effect although there are beta receptors in other sites.

When usually occurs is either the NE gets stuck in the synapse like in the heart and causes tachycardia or it may leak out of the synapse and stop further NE release from presynaptic vesicles causing vasodilation.

Ofcourse in the brain its different.

But Hyperadrenergic/Hyper POTS is just a description of the levels fo NE - I dont think it says anything helpful about the primary cause or etiology and sometimes it actually slaps a misnomer in relation to treatment on the condition - Hyper POTS can still have a neuropathic basis etc.

Some docs recently have adopted the neuropathic v non neuropathic POTS delineation which I think is probably more helpful.

[issie]

In the brain we get the --I want to jump out of my skin response. Nervous, jumpy, panicky etc. In the heart the tachy. Our body could be trying to react in a proper manner and we are suppressing the compensation that it is trying to do --maybe for a reason. Would the response be less severe if we encourage the response and maybe it would settle out? But, if we encourage the response --how do we handle it emotionally?

Rama, do you have the answers for that one? I think it's easy to figure out how to create a response ---but, long term - what will that do to us?

Issie

[abbyw]

Kris - wondering how long you've been on the SNRI. I know for me it was worse before it got better. I needed the full 6-8 weeks before I felt the "better" part of it. Had to take benzo to feel like I could handle it.

Issie, Rama - the first symptom I feel whenever I am optimistic enough to try to wean of my SSRI is what I call jitteriness. It is sort of like an edgy, over caffienated feeling. Like I want to jump out of my skin. Would that indicate a hyper component?

Thanks.

Abby

[Kris4444]

I have been on the SNRI for about a year now. I am weaning off of it to see if some of my symptoms are side effects of the drug. I was put on it for constipation and it has helped.

[issie]

That feeling could be the surge that we all talk about. Whether or not you truly have high NE levels --not sure. But, that jump out of your skin feeling ---is the horrible ---get your blood to your heart and your head thing that can happen with an increase in NE. NE causes your blood vessels to constrict to try to get the blood from pooling in your limbs and get to the more vital places ---heart and brain. As Rama said - it appears there is not proper response to it and there is more release. But, we don't always handle the release of it in the best way - because emotionally it's hard to handle. Therefore, my question to Rama ---if we increase NE would that level out the surges and make the surges more bearable? If there were a more steady stream of NE, would the body eventually balance itself out? If this is a compensatory thing - then maybe - suppressing the response is causing more of a response. There's just lots of questions that I don't think we have answers for yet. But, I do think we are closer.

Issie

[looneymom]

Issie, you are right about needing more answers. I wish there was a way of suppressing it without medication. POTS to me seems like a chronic illness that brings new symptoms along the way. So your body is going to have to react in some way. If you are feeling stressed all the time, then you body may keep producing the NE. In return, this will cause a lot more symptoms like a headache, excessive sweating, flushing, and tremors.

Thank you everyone for responding as you have. It's been so helpful. I just wish all of our doctors could get it figured what type of POTS we have.