Sympathetic Nervous System

[Guest KiminOrlando]

I just saw my doctor last week. He said he thinks what I have is specifically a failure or overreaction of my sympathic nervous system. POTS and NCS all stem from it. He thinks the malfunction is from my autoimmune disease. My official autoimmune diagnosis is Undifferentiated/Mixed Connective Tissue Disease. I have tested positive for both lupus and Rheumatoid arthritis. What I took from my appointment was that he thinks my problem is autoimmune and the rest of everything are technically symptoms, not diagnoses. 

Has anybody else been told the culprit is their sympathic nervous system? If this is the case, wouldn't something like valium solve this part of my problem?

[Scout]

Hi Kim! 

I'm afraid I don't have any answers, but I am really interested in people's replies. I have wondered the same thing, as I've been told my SNS is over-active.

What are your main symptoms from having an over-reactive SNS? 

I wonder if ours are similar. 

[Pistol]

9 hours ago, KiminOrlando said:

Has anybody else been told the culprit is their sympathic nervous system? If this is the case, wouldn't something like valium solve this part of my problem?

Yes. I have. I was diagnosed with hyperadrenergic POTS and NCS and I have both sympathetic overcompensation and sympathetic withdrawal. The first means that something ( a sudden drop in BP for example ) triggers the sympathetic NS to jump in to compensate and it does so in excess ( dumping too much adrenaline ). causing fight-or-flight response with all the fixings and - in my case - even leading to seizures ( too much vasoconstriction causing cerebral hypo-perfusion ). 

The latter means that when normally the sympathetic NS SHOULD activate ( like in orthostasis, when adrenaline should be excreted to cause vasoconstriction to counter the blood pooling and drop in BP ) it fails to do so, causing a sudden drop in BP leading to syncope.  ---- I have not tried Valium but I know that some people do take it for their POTS symptoms. I have a prescription for Ativan ( also a benzo ) to take when in a stimulating environment to PREVENT the dumping of adrenaline, but I take it very sparingly and try to limit stimulation by avoidance of triggers.  Once I am in a spell it is ineffective. Also - my autonomic specialist does not support the use of benzos for POTS b/c it is not a treatment but rather a "crutch" to mask the anxiety that comes with adrenergic surges and leads to dependence ( which he said is common in dysautonomia ).  

To me - in addition to medications commonly used in the treatment of POTS - the single most effective treatment for problems concerning the sympathetic NS are IV fluids. I believe this is b/c having the extra volume creates a normal pressure in the blood vessels, which in turn prevents the triggering of the ANS to dump adrenaline to cause vasoconstriction. Since getting weekly and more infusions my symptoms have greatly improved, hence proving the effectiveness of the infusions. 

[p8d]

I have UCTD too which showed up about a year after my hyper POTS diagnosis but I suspected autoimmune disease for 20+ years.  I had sudden onset POTS after a bad virus, the classic autoimmune trigger. My first visit with a cardiologist (after 2 years of treatment by my neurologist) for new onset of seriously high BP spikes and hypertension generally he said because of the positive ANA I should get immunoglobulin therapy.  After I started this, subcutaneously, lots of things improved but I still get hypotension and BP spikes with ANY “stressful” activity—upright too long, talking on the phone, going to dr appointments, trying to think hard, emotional upset or PT etc.  Pistol and I are eerily similar and I am on several of the drugs she is (my Drs are very willing to listen and try things) except IV fluids and the immunoglobulins for me.  My neurologist is very against benzodiazepines too but personally I think they might help with very limited use, it’s something that I plan to ask about at my next appointments.  If I know that I am going to be doing something stressful I take an extra beta blocker or if I will be upright for >10 minutes I drink extra fluids. They help but not enough for a normal life.  I  recently discovered that drugs ending “ine”, diphenhydramine, mitrazipine (which I used for sleep) cause hypertension so I have stopped them and in general my BP is lower but it hasn’t stopped the spikes.  That’s the SNS going nuts and I haven’t found anything that stops that yet. 

[p8d]

Does anyone have delayed SNS symptoms? I mean after being upright for a period of time and feeling relatively ok but getting the symptoms after sitting down for a few minutes? Every morning I wake up, have some water and wait 5-10 minutes then get up and move around for about 10 minutes (I can’t stand still), occasionally sitting briefly and then when I sit down with my tea about 10 minutes later I get a hot flash (my first clue that the SNS has kicked into overdrive). Nothing else happens because I am sitting. I have an elevated HR while up and about. I just am wondering if this happens to anyone else or if maybe it isn’t my SNS?

[Guest KiminOrlando]

@p8d It could easily be the tea or something else. My issues can be delayed. For example, I put color on my hair. I get an allergy type reaction, but 2 days later. Somehow the process triggers histamines that eventually build up, but it isn't considered an allergy by an Allergist. This happens with several things. Too much noise, too many people or too much movement also triggers my vision to get very fuzzy. I think delayed reaction is very possible. 

[MTRJ75]

3 hours ago, p8d said:

Does anyone have delayed SNS symptoms? I mean after being upright for a period of time and feeling relatively ok but getting the symptoms after sitting down for a few minutes? Every morning I wake up, have some water and wait 5-10 minutes then get up and move around for about 10 minutes (I can’t stand still), occasionally sitting briefly and then when I sit down with my tea about 10 minutes later I get a hot flash (my first clue that the SNS has kicked into overdrive). Nothing else happens because I am sitting. I have an elevated HR while up and about. I just am wondering if this happens to anyone else or if maybe it isn’t my SNS?

Every morning after I finally get out of bed, which takes a while, I use the bathroom, feed the dog, take him out, take my morning meds & supplements and it isn't until I sit down that all my muscles feel like they were set on fire with a tremendous ache, sometimes accompanied by shaking/internal tremors (chest) and palpitations. This often happens if I'm up for too long throughout the day too. The aftermath is generally worse with minor exertions than the act itself. Same with showers for obvious reasons. 

[p8d]

Thanks for the replies. Like you @MTRJ75I have to deal with my dogs first thing but only take one med right away and don’t feed the dogs or myself for a couple of hours. Some of my meds have to be taken with food and if I eat first thing that drops my BP kicking off the SNS I need 2 mugs of very weak tea before I attempt anything much.

@KiminOrlandoI definitely get delayed fatigue from exercise and have some minor mast cell reactions. I definitely react to noise, people, thinking hard etc. The delay makes it difficult to identify the cause if we ever can!

[MTRJ75]

I'm in the middle of another horrible with some post-exertional nervous system reaction right now. Didn't think I was doing anything my body couldn't handle. Been feeling as well as it gets the last few days. Strong appetite. Had a couple of pleasant conversations today. Positive mood. Then figured I would clean up after the dog outside on a decent day. 

Wasn't out there even 10 minutes. Came in and stretched my back out on the floor and then as soon as I sat back on the couch, h*** hit me full force. Every muscle in my body was burning and aching something fierce. Nausea and digestive system emptying. I mean even my stomach muscles are burning. Vision blurring. Palpitations. My muscles ache so much I can barely lift my arms to type even now an hour later. Fight or flight is full blown as the after effect of minimal exertion on a good day. 

Do we know what this is? I don't complain lightly about most pain, but this felt like it could be death for a while. I assume some doctors would call it a post-exertional malaise, but malaise is not nearly a strong enough word for this. I'm not even sure torture is a strong enough word. This is one of the most agonizing experiences I've ever felt and it's happened a few times over the last month now. As mentioned previously, I generally get lesser to moderate versions of this just after getting out of bed in the morning (which ironically wasn't that bad today) and post-shower. Those are bad enough, but this experience is shooting past 10 on that scale. 

Is this just a sympathetic over-reaction or is this something worse going on here? 

Similar to @KiminOrlandoin the OP, I have suspected connective tissue disease and am being treated for Sjogren's though I've never actually tested positive for anything via bloodwork. Could this be the result of nerve and muscle damage that may be permanent? 

EDIT: On further thought, if this were damage, it would be a more constant feeling and not a post-exertional effect, right? But of course, you know where our brain goes now...if this is more a dysfunctional reaction, how bad can it get? Could one of these flares be bad enough to eventually be life threatening?