Some Symptoms Of Hyperadrenergic Pots.

[POTLUCK]

Jangle,

( this is off the Hyperadrenergic topic but following on your amygdaloid states article )

The connection as referenced below of " discharges of the type one associates with epilepsy seen in the temporal lobes " seen in 90% of CFS, dysautonomic symptoms shown in 81% of CFS.

There is a large connection between CFS and POTS and TLE. ( Note this article is very long and complex, with a lot of references, but see the last section and particularly last line under the blue Neurology section ) ( The Autonomic Nervous System section has the CFS/POTS connection)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3022475/

My Mom has the TLE diagnosis also, she has a CFS diagnosis and she has a lying to standing HR increase of 26.

I was given the TLE DX 20 years ago and was treated. The TLE symptoms were essentially dysphoria and neurocognitive problems. My performance I Q tested at borderline mental retardation level 20 years ago when I had symptoms. There were never convulsions in myself or in my Mom. The medicines relieved it and I was stable for 20 years. Several of my meds like Selegiline and VPA increase NO http://www.ncbi.nlm.nih.gov/pubmed/9721939 and as noted here http://www.ncbi.nlm.nih.gov/pubmed/19703427 it is suggested that NO would play a role in the mechanism of antiepileptic effects by VPA treatment.

This article suggests a dual pro and antiepileptic role of NO http://www.ingentaconnect.com/content/ben/cnsnddt/2011/00000010/00000007/art00006

[issie]

potluck,

Since you've been doing things for over 20 years to boost your NO levels - could it be at all possible that you've boosted it too much and that could be part of your issues with POTS? Some POTS people have too high levels of NO - rather than too low. Just a thought for what it's worth.

You don't seem to be low IQ to me - seem pretty smart.

Issie

[jangle]

POTLUCK, I just meant that my symptoms of presyncope get more severe under stressful conditions. A LOT more severe.

Glad to hear your treatment for your other condition worked well, I don't know much about that condition.

I just began the Losartan, I'm starting at a low dose 25 mg/day but I think I want to start small to let my body adjust.

[POTLUCK]

Issie,

Thank you for the complement. My performance IQ was low 70's at that time. And no I do nto believe it reflects my real IQ I believe it reflects how severe the symptoms were at the time. ( Maybe I had cerbral hypoperfusion that was not being compensated with an increase HR.)

The thing is I have not purposely been doing things for over 20 years to boost my NO levels. I did not even know what NO was. The doctors just gave me those drugs for a DX of TLE 20 years ago and I stayed on them with no symptoms and no problems till December 2009. I am just noting on looking back that many raise NO. The TLE DX was based on EEG ( epileptiform discharges in the TL that the article shows most POTS people have, ) and symptoms ( that are similar to my symptoms now - lack of oxygen to the brain feel/dysphoria/cognitive problems/working memory problems.) It is only in 2012 that I have recieved the DX of POTS when I went off one of those RX from 20 years ago ( Inderal 80 BID) The list of RX 20 years ago is on my profile. I am just thinking now that maybe those RX from 20 years ago had things balanced for me, but the DM 2 decreased the NO further.

Honestly, I am just looking for an answer to what changed in 12/09.

The HR that increases on standing does not seem like a cause of symptoms that appear to be cerebral hypoperfusion, because increased HR would give my brain more blood, not less. Thus, it seems more likely it is a compensation mechanism. I do not think it is compensating for something physical, like a deconditioned heart, because I was an active runner and hiker before Dec 2009. I had done a 10mile hike with a 3200 foot gain during the day on the evening I first noticed a mild "dizzy" feel. So I am just trying to figure out what happened. I did not know I had POTS till this year. And my symptoms and tilt test were without meds. If it was too much NO than I would think stopping the meds would have fixed it. I can not say I am certain on anything though. Thank you for the thoughts.

Jangle,

I asked the doc if I could be agressive with the med. I started 12.5, went to 12.5 BID and now am at 25 BID in less than a week. I'm off work and need to get back! ( I am disapointed my Angiotensin came back low today.)

Good luck with the Losartan!

[issie]

I know potluck - when we have something come back the opposite of what we were so sure of (after all your good research - but, others benefited from it) it makes us start to question ourselves and everything else we think we know. I KNOW - I've been there and done that too.

Just throwing ideas out - sometimes, having another angle or possibility (whether true or not) might give an answer. Sort of brain storming all the possibilities. It sounds like with your diabetes and epilepsy you need more NO - just didn't know if your body might have accumulated too much with all the assisters it was getting. (Meds, sun etc)

[ramakentesh]

All pots patients experience a worseningofsymptoms from stress or anxiety. Interestingly so do patients with nmh. The proband with net deficiency also certainly does.

Chronic elevations of inductible no could effect other types of no which is an interesting thought. High dose vitamin b12 would make low no patients worse.

Also consider assymetric dimethylarginie which is elevated in inflammatory disorders, diabetes and fibro with pots features.

Research on a CNS source of at least CFS is ongoing. Excitation is the main feature, perhaps nmda over activity is often mentioned. Elevated inflammatory markers in spinal fluid of CFS patients with poor brain perfusion.

Lastly autoregulation might be the main problem in pots.

[ramakentesh]

Amda would work the same way as ang II. Competitive against no.

[issie]

Well, with all this info Rama - it's making me even more happy to have found Tramadol to be effective for me.

It helps with NE, NMDA, serotonin, dopamine and pain - opiate receptors. Maybe, I just need to take it more through the day - instead of just at night. It definitely calms me down and my bp's get lower with it. I don't have as many surges.

I have a horrible reaction to B12 that was one of my BAD experiments. Also, confirmed more the fact of needing more NO for me.

Thanks for the breakdown and possibilities. Made it a LITTLE clearer to me - what direction I need to focus. Thanks, friend.

Issie

[ramakentesh]

Helps with NET? Tramadol reduces the reuptake of norepinephrine which may also already be limited at laest peripherally. Perhaps the cerebral inhibition balances out sympathetic outflow? But it would probably make NET function even worse.

Tramadol might help because it antagonises serotonin receptors implicated in anxiety and supersensitivity and because it releases serotonin in a similar way to MDMA funnily enough (an illegal drug that one guy in Europe suggested helped his POTS), but its SNRI effects, and its suppression of parasympathetic activity through combined muscarinic and nicotinic reception would suggest it would make POTS work.

Many CFS patients take NMDA antagonists - ketamine being often mentioned on some forums (another illegal drug) and DXM.

A bad reaction to b12 might suggest that you have low NO but that is not guaranteed. You would expect that cozaar would have helped in low flow states.

have you ever tried an SNRI?

[issie]

I have high levels of NE and according to Mayo doc and the criteria that they go by - I'm in the HyperPOTS catagory.

Yeah, remember I tried Wellbutrin and sinement - when they thought I had Parkinsons made me worse. They combined Wellbutrin and Lexapro - because, I didn't tolerate the sinement. It had no benefit to me at all. If anything that year and a half - I got progressively worse. That's why I was happy when they found the Tramadol and it's given off label for those who don't tolerate other SSRI's or SNRI's.

[ramakentesh]

Tramadol inhibits NE reuptake - which should increase NE levels. However NET inhibition works differently in the CNS than in the peripheral nervous system. In the PNS is increases NE, in the CNS is suppresses sympathetic outflow.

tramadol has so many effects its hard to know which one would have a beneficial effect. Opiod, serotonin receptors, increased serotonin, SNRI, NMDA antagonism, etc.

Some CFS patients do well on NMDA antagonists so maybe that is why?

[issie]

Don't know. When I did that cleanse and came off for a week and then went back on - the effects were even more noticeable.

[issie]

Yeah, I know - that's what I thought about the Lorsartan (cozaar) and practically begged to try it. But, that wasn't a good thing for me. The only other possible thing I came up with in relationship to that is a study on connective tissue disorder and autoantibodies to ACE. Since I have EDS (a connective tissue disorder) -it said that if there are these autoantibodies to ACE then you need to use an ACE and not an ARB. It said that you wouldn't need to increase potassium - which Lorsartan does. It will increase NO but it also increases potassium. So, thinking if I need to try another med - then the next one to try is an ACE. It would help to vasodilate too, which is what I think I do better with. The herbs, I've used that help with vasodilation - seem to help me more than the ones that vasoconstricts.

[issie]

Bump up for discussion on high NE levels.

Issie