Anxiety, Hyper Pots And Nor-Epinephrine

[rspry]

So I have been struggling with severely debilitating symptoms of Panic and Anxiety over the past several years. It has been worse in the past few months where I am at a point where I am scared to look out the window at times. I talked briefly about this in another post (Help with anxiety). Since I made that post my doctor had me do some testing to get the levels of adrenal chemicals. The results showed a very high amount of nor-epinephrine. High amounts of this hormone can cause just about every symptom I'm experiencing. SO that was somewhat of a relief to know at least it wasn't just something in my head that counseling and meditation could get rid of (because I have tried everything). This could lead to a Hyper Pots diagnosis however, I recently found that my doctor was concerned that I could have pheochromocytoma. Has anyone else been diagnosed with this or had testing to look into it? I'm just concerned that its been a tumor causing these symptoms for all this time and the stage it would be in at this point. Any input would help. Thanks

`Rachel

[sue1234]

I have done multiple 24-hour urines to test for a pheo, but my levels stay in the normal range. I do have a small growth on my adrenal, and really thought that a pheo could explain all of my symptoms. That's good that you were checked. Do you mind me asking how high your levels were (with the range)?

[hippychic258]

I have had several 24 hour urine tests also to check for pheo, but was it came back normal, but I have also heard many people who have had there 24 hr urine test come back normal but later found out they had the tumor. I am going online and ordering saliva testing for all my hormones its more acurate.

[kayjay]

Sorry you are going though this. I was misdiagnosed with a pheo by Johns Hopkins Hospital. I had 3 or 4 positive 24 hour urine tests for this tumor. I was then sent to the NIH for further testing. After a week there of scans and testing doctors discovered that I don't have Pheochomacytoma. I actually have hyper pots ( maybe very hyper LOL).

It is important to rule out a pheo. The good news that if you have a tumor it is treatable. It was almost 10 years ago that I was misdiagnosed with this, but I'm guessing that you may be sent for a PET scan. The 24 hr urine test is less accurate than the plasma testing but I am proof that you can have a false positive (many times) for both. Hope you get some answers soon. I understand how awful you must feel!

[kayjay]

I was also told that they are usually not malignant and are bilateral less than 10% of the time.

[Guest Alex]

I've had several 24 h urine tests as well as an abdominal ultrasound and an abdominal CT scan - all the tests ruled out the possibility of a pheochromocytoma in my case.

I hope you're going to get some answers soon.

The good news - like kayjay said is that there's treatment for those.

Best,

Alex

[Mytwogirlsrox]

I've had pheo testing as well.. I cried hoping it was in fact a pheo & not just pots & anxiety

[rspry]

I had a plasma test... Its a specific Orthostatic plasma test they poke you and make you wait 15 minutes while standing with the needle in and then do it again while laying down.. My lvls were 700... normal lvls are 500 or lower. I have yet to do any scans or anything to try to see if it is Pheo. For those of you who had the testing done.. medications can give false negative readings.. I had to stop taking my beta blocker before the test (really hard since I needed to stand my heart rate was out of control). Also medications that help with anxiety can mess up the results. I am talking to my doctor tomorrow about what to do next... I'll let you guys know what we find.

[jangle]

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[sue1234]

rspry, I can guessing that a pheo expert would not classify that as pheo levels. They usually look for 3x the upper limit, so if 500 was the upper limit, they might just say it's due to POTS. I'm basing this on the book I bought a few years ago, written by the leading pheo expert in the country. Those were his guidelines.

But, I feel we end up with the same "side effects" of high adrenaline as pheo patients do------meaning, I feel like we are volume deficient because of the high norepi. levels from being upright at various times of the day. So, even though pheo people have a dire need to have their tumor out, I feel like we deserve the same kind of attention due to the chronic problems that the chronic adrenaline poses for us.

[Kor1212]

I recently had my catecholamines checked and found my norepinephrine is 400 supine and 2090 when standing. I however do not have anxiety or very tachy issues. I do vasoconstrict like crazy tho! I tend to pool and have low blood volume so I am on 10 gms salt and 3 L fluid per day. And daily exercise. My resting HR is in the 40's, goes to 100 when I stand. Certainly low HR when you look at my NE. Funny how all our bodies are different.

[rspry]

Jangle I would be interested to know what medication you were referring to and i will have to look into the norepi transporter. This is all relatively new to me. I know that having high lvls can lead to associations (phobias) those need to be addressed after the nor epinephrine is stabilized. But I would compare it to facing an army as apposed to a few angry people when it comes to dealing with the phobias before and after the lvls are addressed.

Sue I am by no means an expert on pheo and all of this so I welcome all the advice people have. I think it might be worth mentioning patients with POTS/ Hyper POTS etc are all a little different and many are substantially more sensitive to changes with in the body. So the general guidelines may exclude Potsies when there is indeed an issue. I think my doctor was being through before he placed the Hyper diagnosis on me and treated me as such. When I was first diagnosed with POTS I had very low blood pressure (60/40) and tachycardia while standing. It was a pretty a typical case for POTS guidelines. In the past several years my condition seems to have changed and I now have an elevation in blood pressure and tachycardia (175bpm+) on average with out my beta blocker. The anxiety also changed significantly coordinating with these other readings. While my norepi lvls are relatively low compared to standard guidelines my clinical symptoms are similar to others with the condition. So it would seem that my sensitivity to these changes warrants looking into it or at least that may be why he wants to rule it out.

Kor1212... The more i talk to people the more it becomes clear to me that the Autonomic nervous system has countless jobs and any one of them can effect another function in the body. It seems potsies are as different as fingerprints and there is a number of ways in which they "dysfunction". Where i can barely stand the lvls or Norepi i have, you don't seem to be bothered at all by lvls almost triple what mine are. However I don't have any problem with swelling in my legs, blood pooling or discoloration. My resting heart rate is in the 90's surging to almost 200 while standing which may feel devastating to you and its something i manage with. See what I mean? I like to learn form everyone on here so I can feel more comfortable with what is happening in my body, and hopefully i can give some insight to some other people, but I am finding there isn't one specific fix for any given symptom simply because everyone is "dysfunctioning" differently. All we can do is try and figure out what specifically is hard for each of us and try to manage it from there.

[Guest Alex]

Reading the posts again I remembered having my plasma catecholamines tested supine and standing - just like you mentioned Rachel. My levels came back fine (can't recall exact numbers though), yet I do have "anxiety" attacks, better yet adrenaline surges, and crazy tachycardia episodes out of the blue. Also, I do not pool and have a pretty high resting heart rate despite being on propranolol, so, indeed us POTS-ies "dysfunction" differently.

Alex

[rspry]

I did some research on the NET inhibitors and from what i found the Idea is sound but the medications are not there yet. Many of the medications developed to act solely on the Norepinephrine Transporter have been shelved in the second round or so of clinical testing... Many have found a high incidence of suicide in these medications. I found one drug in this class that is approved for use in the United States that may be beneficial, but i am not a doctor. There were only a few that actually made it to the market and most of them have side effects or uses that would contradict the reason why potsies would want to take it (ie. amphetamine like results)

[jangle]

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[Guest mattgreen]

Jangle,

It's funny, when things became bad for me I had never been fitter. But then, vasoconstriction isn't the problem - vasodilation is. Which autoimmune drug are you considering playing with?

[Kor1212]

Jangle, how do you find these articles? I wonder if my endurance training background is why I tolerate my NE levels in the 2000, because I am desensitized to the vasoconstricting effects? Even with my NE levels that high I don't have " panic attacks", or palpitations, clammy skin or high HR. My HR runs in the 40's, my BP 90/60. I just started a low dose of Clonidine along with my salt and fluid, and have been walking everyday for the past month despite feeling like death. So what would do the opposite of a NET?

[tommykazim]

hi guys I did try a NARI - Rebexotine. And yes Jangle I wondered if it would make matters worse for me even if I havent had my NET gene tested. Have you or others had this gene test?

But yes I had had a response to a SNRI and wondered if the "N" of it was part of the trick! For the first few days felt like I was on speed - blocking the few NETs that work and flooding myself with norad! couldnt sleep a wink which was a blessing from my usual zombie state. But thereafter slowed down, felt worse, got palpitations and quit it.

So it was prob the serotonin blockade of the SNRI that did the trick. But why - excess serotonin activate the NET?!

Jangle are you wanting to pursue this Rituximab? Have you had any of these dysautnomia auto-antibody tests?

[issie]

I have yet to figure out why an NE reuptake inhibitor would actually HELP ME - with high NE levels. Go figure. I can't find an explanation. Tramadol so far is the best thing to calm down that Hyper surge for me. Of course, it works on other things too -seratonin, dopamine, NMDA and of course NE. Some sort of paradox reaction??????

Issie

Edit - This makes sense now that they are starting to figure out that NE is a compensatory response. If we keep it more at a stable level, then it seems it might would help with the symptoms. Of course, some of the other properties may be playing a part. As it will affect other levels and there could be an issue with any of the hormones that it affects.

[diamondcut]

I tried Mirtazapine (Not sure if this is an SNRI or not) but had the same side effect of total insomnia, feeling of being on speed, and so hyped up i couldnt tolerate sound or light. Had to stop after a week.

Issie i have tried Tramadol but it makes me feel more sick than codeine which i cant understand. Why could this be do you think?

[jangle]

Jangle, how do you find these articles? I wonder if my endurance training background is why I tolerate my NE levels in the 2000, because I am desensitized to the vasoconstricting effects? Even with my NE levels that high I don't have " panic attacks", or palpitations, clammy skin or high HR. My HR runs in the 40's, my BP 90/60. I just started a low dose of Clonidine along with my salt and fluid, and have been walking everyday for the past month despite feeling like death. So what would do the opposite of a NET?

I have my ways, but it appears I was beaten to the most exciting POTS research to come out - which was the autoimmunity study just published this week.

[issie]

I tried Mirtazapine (Not sure if this is an SNRI or not) but had the same side effect of total insomnia, feeling of being on speed, and so hyped up i couldnt tolerate sound or light. Had to stop after a week.

Issie i have tried Tramadol but it makes me feel more sick than codeine which i cant understand. Why could this be do you think?

Codeine triggers mast cell degranulation.

Issie

[Zap]

I have yet to figure out why an NE reuptake inhibitor would actually HELP ME - with high NE levels. Go figure. I can't find an explanation. Tramadol so far is the best thing to calm down that Hyper surge for me. Of course, it works on other things too -seratonin, dopamine, NMDA and of course NE. Some sort of paradox reaction??????

Quite possibly, I think that some of these unexplainable drug reactions are due to the body's innate design to seek balance. In some people, depending on the etiology, most of the body's negative feedback systems are working but they are missing a piece or a link in the chain. By stimulating them further, the body actually enters a proper feedback loop and is pushed to seek balance (which due to the link, may cause it to over-compensate, for instance).

So in a way, the body takes the over-stimulus and tries to compensate for it. In others, the functional ability to do so may be limited and so the same med will not have the feedback effect.

[Kor1212]

Jangle do you have a link to that autoimmune study?

[jangle]

Jangle do you have a link to that autoimmune study?

http://www.ncbi.nlm.nih.gov/pubmed/23002038

I'm going to go to campus so I can get the full article.