Hyperadrenergic Question

[bgregoire]

Hello,

I am new to the forum and I am trying to find out some answers for how I feel. For the past 3 months I have been feeling incredibly fatigued and no matter how much rest, I never feel better. Some other things I feel are tremulousness sensation. I can visibly see my hands shake and my teeth chatter all the time. I feel my trunk and legs shake but it doesn't appear to be visible. The sensation is a pulsing sensation. Like I am sitting on an old truck or tractor or driving on an gravel road. I have sensitivity to light and will get incredible headaches and eye fatigue if I am exposed to too much light and always hear a small ringing in my ears. I also am experiencing some leg pain. My legs always feel like they are burning. The only way I can describe it is the same feeling like after a long hard run or doing a set of squats, its the same burning sensation. They burn and shake all the time, They feel weak and fatigue really quickly. I also experience the same fatigue in my arms and back when I am holding something. I also have some tingling\numbness\burning sensation in my toes. My blood pressure is high since this started happening and this all seems to be worse when I am hot.

This all started un July after I participated in a endurance cycling event, I rode 60 miles out of the 100 that was planned, after that I have not felt the same. Before this I was a pretty active person where I was working out and training for cycling and running events like marathons and century rides. After the ride this summer I have not felt the same and I am barely able to make dinner for my family without running out of gas. The light sensitivity is so bad that I can only look at my computer screen for a small period of time without getting a huge headache.

I have been seeing Doctors about 2 weeks after the event when I could tell I was not recovering. They did a lot of tests from B12, thyroid as well as Lyme, Lupus and even Wilsons Disease and a brain MRI and everything all comes back as normal. The doctors I was seeing at the time all said it was anxiety and prescribed various types of antidepressants all which either made me feel worse or didn't seem to do anything. I then went to see a psychiatrist to help with the anxiety, but he said that he didn't think that I had any anxiety disorder and any anxiety I was experiencing was a symptom of an issue and he didn't see anything he could help me with. My doctor then then suggested I see a neurologist. I went to see a neurologist at the Mayo clinic, and we ran some tests. Everything including the autonomics test on the tilt table and he said was normal except for elevated norepinephines and normetanephrine in my urine. In his report he says I am in a hyperadrenegic state or have hyperadrenegic conditions and says its just anxiety. Also in his analysis he said the elevated norepinephines was of unknown significance. He said there was not an underlying neorlogicical disorder and suggested that this was just anxiety and I should see my local doctors and psychiatrist for further action. This leaves me at a dilemma as it seems that no doctor wants to help me with this.

I am at this forum because when I search for the term hyperadrenegic state or conditions on the internet and I only see results for POTS and I am curious if anyone else had ran into this before. I do not feel like this is anxiety, other than me not feeling well I can not think of any stress or issue in my life that is new or different that would cause this for such a long time. So my questions is if its not POTS, what else could cause a hyperadrenegic state or elevated norepinephrine? Am I seeing the right type of doctor?

When I look at the symptoms of Hyperadrenegic POTS it all seems to fit how I am feeling but I am just left with a lot of questions.

Thanks

Ben

[looneymom]

Hi Ben,

My son was seen at MAYO in Rochester in December of 2011 and he was diagnosed with POTS. The term hyperadrenegic was also mentioned in his report but they never tested for elevated norepinephrine levels. My son was unable to stand or walk at that time. If your levels were elevated, this might indicate something immune or autoimmune might be going on. Have you been seen by a board certified adult immunologist or endocrinologist? My son also suffers from tremors and shaking. Recently my had some immune testing that indicated his immune system is not functioning correctly. A specialist in another field of medicine may be able to help you uncover the medical condition.

Rachel

[bgregoire]

Thanks for the reply, I have not seen an immunologist or endocrinologist yet and I will do so. I am able to stand and walk, I just get really tired really fast and my shakiness makes me feel unstable while I walk. Thanks again.

[Katybug]

I think elevated norepinephrines may also show up in pheocromocytoma. I don't have that and so only recall this tidbit from others folks on here that have been tested for pheo. That, I believe, would fall under the specialty of endocrinology. I would also wonder about Addison's syndrome. Again, I don't have it but just a thought based on reading information in passing on my own quest for answers.

[bgregoire]

Thank you for your reply, I should have mentioned that a pheo was originally why he had ordered epinephrine tests for. As I understand it my levels are lower than what is needed to suspect pheo. They need 200% higher than the maximum of normal and I was only at 120%. I am going to double check with an endocrinologist though. He ordered the autonomics test to test for small fiber neuropathy and never mentioned POTS. Once pheo seemed to be ruled out I started looking on my own. They also didn't draw any of my blood for standing and laying down while on the tilt table. They only tested my BP and HR.

I should mention that when I returned from the Mayo Clinic I went back to see my family doctor. He was unavailable during my original treatments because of his own medical leave and I had to deal with his associates while he is away. He mentioned that since I didn't have a history with those doctors and my only interactions with them seem to be that I am anxious that they tend to just say its anxiety. He is the only doctor that doesn't say it is anxiety other than the psychiatrist. Since my symptoms are pretty atypical for what he normally deals with he is recommending that I go back to Mayo and see a general Doctor there so I can then be routed to the correct specialty. He suggested also seeing my local infectious disease doctor but getting an appointment with him is over a month away. I cant imagine feeling like this for another month waiting to see another doctor. I had to do that to see the neurologist and that was pretty difficult. I may have no choice but as you all and understand, just waiting is pretty frustrating.

Thank you for your reply

[looneymom]

Hey Ben,

If you can get into an infectious disease doctor within 2 months, it might be worth the wait. Is there a possibility of a tic bite or travel to a different area or country. This type of doctor could rule out virus and infections as such.

Rachel

[angelina]

Hi Ben,

I also was diagnosed with Hyperadrenergic State (Noreprinephrine both supine and standing) with no known cause from Mayo. I also had Pheo-type symptomology, tested positive then tested negative. I also tested negative for paraganglioma (these are tumors that secrete norepinephrine but are not found on the adrenals). I do not have a POTS diagnosis but still have many of the symptoms that fall under dysautonomia. My symptoms started out of the blue after a bought of the flu. Have you been evaluated for Mast Cell Activation ? You may want to add this into your rule out list as MCAS/MCAD fits here as well. Some Allergists have experience in MCAS/MCAD, but there are few specialists. If you do a search on here you will find good resources. At least between Infectious Disease and Allergy you may get an answer.

Angelina

[corina]

Hi Ben, welcome to the forum!

[SarahA33]

Hi Ben,

I have been diagnosed with hyper pots on 2011. I had a long journey including many doctors and tests, like most of us on this site this site. What tests other then the blood work have they done to rule out neuroendo?

The last test I had was the tilt and that's where I got majority of my answers with elevations in already high neuroendrocine values. You mentioned high blood pressures--- what is your heart rate like?

I was also active, like a lot of us on here also. I cheered throughout college and coached for about 5 years until I had to give it up as my symptoms took control. Regarding my symptoms: High Blood Pressure, Tachycardia, Brain fog, flushing, extreme brain fog, constant movement of legs I have really extreme high energy levels and also have a terrible sleep schedule, I rarely get 2-3 hours a night.

Do you mind sharing where you are located? Maybe another view from an autonomic specialist may be helpful. Sorry to hear of your struggles, it sounds like you aren't going to give up until you figure this out. Don't give up and know that you aren't alone in this,
Sarah

[bgregoire]

Thank you all for your replies.

I just had a CT scan of my chest abdomen and pelvis and there wasn't anything detected and nothing else to rule out pheo. My blood pressure has been 134/89 to 165/85 and yesterday was 145/93 and my resting heart rate is around 80-90bpm sitting here. I have been on several medications with little help. I drugs I started on were effexor, gabapentin and klonopin. They didn't seem to help at all and\or made things worse. Then I was on Propranolol and Buspar for month and a half and it did help with my blood pressure, but my major symptoms were not helped like my leg pain, shakiness, fatigue, headaches and light sensitivity. The Buspar also made me feel worse and when I was on Propranolol alone I didn't feel any better or really any different. Right now I am not taking anything and haven't been for about a month.

I am located in eastern North Dakota, I am not sure if there would be anyone else other than at the Mayo clinic in Rochester closer or even close by. I am about a 6 hour drive from Rochester and so I was hoping they would be able to help me. I know that I am just going to have to wait for all though this but the worst thing about this is that I am unable to work. So just sitting here is pretty frustrating.

Thanks all for your advice and support

Ben

[bgregoire]

My heart rate if I get up an do anything will increase up to 120-130. I am wearing my HRM monitor I use for running and cycling today as a test today. I would normally pace my runs around 140-150bpm and have a resting heart rate of 70, so I feel like this is pretty abnormal for me.

[bgregoire]

I wanted to close up this thread, I just was at my endocrinologist to see if why I was in that hyperadrernegic state was caused by hormones. During his examination he didn't think it was anything hormonal but did diagnosis me with fibromyalgia. I am still learning about that but at least it is a diagnosis and hopefully I can move forward on some treatment to help. Thanks everyone for your advise and replies.

[Chaos]

There is a lot of overlap between Fibromyalgia, ME/CFS and POTS/Dysautonomia so you may still be looking here for answers to some of your questions.

Glad you got a diagnosis and somewhere to start looking.

You might also look at "overtraining syndrome" to see if that has any similarities to what you're experiencing.