Nor-Epinephrine And Snri Treatment

[k&ajsmom]

Ive read several posts on here and I feel very like a preschooler reading advanced chem.....lol...so bear with me if and feel free to roll your eyes at my lack of common sense on this stuff...

So ive had adrenalin rushes all throughout this illness but they were always undefined and irratic and Im not sure Ive always recognized what they were till lately. It seems since Ive withdrawn from the ssri (doc says I had serotonin reaction?) that my symptoms are very well defined and predictable now. I wake up and for a few minutes I feel stuck in brady, then I start to feel adrenalin, which previously I think I associated to anxiety. Then my heart speeds up to tachy. WHen standing I feel lightheaded and tachy, weak and shaky but not so much witht the adrenalin feeling. Then when I sit, bam adrenalin surges...takes a long while for the heart to come down, but it does calm however it beats forcefully. I can feel and see it everywhere, evn at 80 bpm or even 70bpm. Pvcs increase alot during this time.

If Ilay on my left side of back it stays the same...if I lay on my right it calms down significantly and feels somewhat normal again. Then it will slip back into brady till I get up again. I also notice its become apparent that this is going to happen after a meal. The thing that confuses me is Ive read a lot of you have these adrenal surges but its usually with flushing and heat and high bp. Mine is not, occassionally I will get overheated and feel swollen but not always during these episodes. And I never have high bp...ever. The highest has been 110/70 and it only stays that high for a moment before it drops back down again. I dont think I have flushing, or I think I would know it...lol

ALso the doc as Ive previously posted wants me on a snri or lamictal...wouldnt this increase adrenal responses???

My fiance is dealing with ptsd and tbi and is on a lot of meds, two of them are for adrenalin rushes...he gets flushing, high bp, tachy....he is on wellbutrin and abilify along with several others such as gabapentin and some others I cant recall. He says his doc told him it is to "burn" out the adrenalin. His body produces too much so the pills add more availabilty which cancels it out. He doesnt understand this explanation and neither do I.

I know this is asking a lot but can anyone try and explain what they think is happening, and feel free to dumb it down for me haha Ive tryed learning from old posts but some of it is just too much for my little brain <blink;stare> ;P I really need a pots for dummies manual

[issie]

We have all felt that we need a "manual for dummies" in regard to POTS. I still feel like that, at times.

For some of us lying on the left side cause issues with mitral valve and can cause the surges that you describe. I have found that a good many of us with EDS have this issue. I have this problem too.

We all have a learning curve on this and I don't think any of us know it all. Science keeps advancing and so does knowledge. So, you are in the same boat with the rest of us ---we're all learning.

Issie

[k&ajsmom]

Hi issie, thank you so much for taking th etime to write me. I have decided, though tentatively, to not take my new meds. I know my doc will be "bothered" but I need to trust my gut on this one I think and try some healthier routes first. Ill continue my florinef and other meds, but think I will be adding zantac, Which I already have on hand from when the er initially told me I had anxiety and reflux..blah blah blah lol I have been researching mcas and other realated mast cell issues and it fits like a glove.

Thx for the explanation on the snri, though I feel it may be helpful, I feel the side effects would not be. AFter coming off my zoloft I dont waana do that to myself again. I also dont think messing with my gaba levels is wise. Xanax, the last time I took one, effected me very very poorly and crashed my sytem with massive chest pains....no thank u gaba gaba.

I cannot express how well the mast cell issues seem to fit....its like a light was turned on. I am gonna find a local health store and plan an outing today if all goes well and honestly I am excited about the possibilities, opposed to being terrified about the manufactured drugs. They will be alast resort.

I know I have a lot to learn here and do read and read ad read and have learned alot...but am so amazed at the levels of knowlegde some of you guys have. Its inspiring that we dont have to be victims and dependent only on a doctors knowledge. I hope to be my own advocate in this. I have 6 months to prepare before seeing Dr. Chemali so until I will be studying lol.

I do feel there is something with mvp, however my echo and nucleur tests were all clean, except for tachy and some afib, my mom has mvp and hypotension and on atenolol her hr still climbs to over 100.

Do you know if mvp can be missed? My mom was diagnosed over 20 years ago, went recently for 2 echos, first said no mvp, second said mvp present? Is it one of those things that can be occassional??? This feeling I have comes and goes?? I dont know if I should push for an echo when I feel it flaring??

Thx again issie =)

[issie]

I think our bodies are so un-predictable. It's hard to tell if things will be good one minute and bad another. Some people with POTS have been missed because they were having a good day when they had their TTT. So, it's hard to say on the heart thing.

I'm glad you are looking into MCAS. As I told you in our PM ---I think with some of your symptoms, it seems like it might be a possiblity. I have found that Allegra and Zantac are the best combinations for me. But, I only take 1/2 of the Zantac. I find taking them together is what works best for me - cause you're blocking more then one type of histamine that way. (Some have to take the H1 and H2's more then once a day.) There has been a lot of discussion on mast cells here. Also the site I gave you to the girl in the UK has more information and she keeps it up to date.

Some of us are finding that quercetin and turmeric are helpful for mast cell issues too.

Hope you find some answers.

Issie

[k&ajsmom]

Thank u again issie, you have given me GREAT direction to go hunting for information. Yes we are some unpredictable creatures...lol...Ill just have to trust my gut and wait till I see Dr. Chemali. However, I started my zantac today with my zyrtec and claritan at bed. It immediatly calmed my stomach, along with my other meds felt pretty good. I was surprised, wish I had done this sooner, but then I had another massive allergy meltdown, so as I sit here, swollen faced and sneezing my self into fits of tachy ...lol....I have some excellent links and info to read up on till I can emerge from my abode and slink to the healthfood store. All and all, Im really excited about trying some things and its given me a bit focus, so thx again and take care =)))

[issie]

Most of us keep a journal and make notes about what we eat, use, wash in etc. You have to figure out what things are your trigger. When you look back on your journal a pattern will evolve. Then you can figure out where the problem things are. If you are still having allergy type things even with your H1 and H2's on board - you may be one that needs them more then once a day. Also, Nasal Crom is an over the counter - mast cell stablizer. It helps me. I use it a couple times a day. When I added the GastroCrom to all this ---is when I really started noticing improvement.

It just takes some time and close note taking. You will figure this out.

Issie

[k&ajsmom]

As u mentioned Gastrocrom being pricey is a problem, def. havent hit the lotto lately lol I have applied for some insurance but being self employed with a pre existing condition is not moving things a long.... however I am going to pick up some nasalcrom, I looked it up and have read very good things in regards to mast cell stabalization.

I am horribly unorganized by nature so I havent started a journal until you mentioned . I sat down and started one, Ive thought about doing it after reading about triggers but just kept procrastinating, so thank you for the motivation there.

One thing I didnt mention is I own a Cleaning business and for four years have been emersed in toxic chemicals. Even when careful there is only so much you can do. Now, I would blame my condition on that except Ive suffered since I was a toddler, however maybe the work Im in just sent it over the edge. I havent worked since October, because physically I can barely function as of late and Im not sure Ill be able to go back and expose my self to the toxins and physically its hard work. I may have to turn my business over to an employee and seek disability for a while till I can find a line of work I can handle.

Anyway...lol

U reallyhave been quite motivating and helpful and cant thank u enough for your kind :experiences: I am gonna play with these meds and try to get the dosages right for me and keep learning....=0)

Oh Ps. I know I ve been rambling on and taking alot of your time but does anyone know: When I have a allergy meltdown lasting over 24 hours I begin to crave sugar, uncontrollably. I binge on it. till it makes me ill. I am not one to eat a lot of sweets so this is wierd for me. My glucose has been borderline through all this though so I try not to, but even when I have no sugar and eat small and healthy meals my sugars been running around 100-112...I reviewed my old labs from when I was heathier and it always ran between 70-88...is something with mcas or just a comfort eating thing lol

[issie]

Yes, the GastroCrom is one I would not be on if I didn't have insurance. Unless, maybe I got it from some place a whole lot cheaper. (Mexico or Canada, maybe?)

I looked up what I thought may be causing the issues with the sugar and found a link that confirmed what I thought. I'm not saying to do the program that this article is recommending ---just thought this might answer some questions as to the sugar cravings.

http://www.radiantre...m/chemistry.htm

This may not be it - but was the first thing that popped into my mind when you said this.

Not sure about the chemicals. I'm sure that has not helped anything and we are so sensitive to most things. I try to use natural type cleaners. My sister-in-law has her own cleaning business and she manages to clean very well with many natural cleansers. She uses a lot of vinegar. There are many recipes for cleaning products that are less toxic.

Issie

[k&ajsmom]

hey Issie,

I definatly think there is something to that. Especially the beta-endophins. I def can associate with the "high" from the sugar. Thx you have given me a lot of sirection and I have been doing some studying on these theories and it seems to all be starting to make since. =)))

[peregrine]

Hi k&ajsmom - sorry to join the conversation so late!

I have been taking Lamictal for the last 8 years, and it doesn't seem to have caused any POTS-type reactions before I started having POTS several years ago. As far as I know it's pretty good for that. SNRIs mostly affect your serotonin and norepinephrine levels (Wellbutrin, which is not technically an SNRI but is a non-SSRI antidepressant, affects norepinephrine and dopamine). I have noticed Cymbalta (an SNRI) affecting my POTS symptoms in a slightly worse way, but since it was what seems to have triggered my POTS in the first place, that may be specific to me.

The explanation about your partner is kind of weird - what I would say (not a doctor, of course, but) is that adrenaline levels in your body are what tend to affect sweating, adrenaline rushes, high heart rate, etc. Things like SNRIs mostly affect the levels of norepinephrine in your brain, which can decrease chronic pain (as in Cymbalta) and depression, but not so much in your body most of the time, although Cymbalta can increase your blood pressure slightly; basically, it mostly does things in the brain. However, if episodes with adrenal surges are due to stuff happening in your brain (perhaps like PTSD, for example), then the SNRI can work on preventing the response to things that trigger those episodes - basically, you see something that stresses you/triggers you; you don't react as strongly because your brain neurotransmitters are more stable; ergo fewer body responses because your brain isn't going haywire. Does that make sense?

Certainly for me the Cymbalta and Lamictal didn't do anything for the body in a good way! I have found that clonidine does help in that area, though - it works in the brainstem to "mute" signals that encourage production of adrenaline in the glands on top of the kidneys, so you get mostly body effects. I know clonidine is used for ADHD, but I haven't seen anything for it in PTSD; for me it does decrease my overstimulation and tendency to look behind me to make sure nobody is coming up behind me (since I space out a lot), so I wonder if anyone has looked at that in PTSD.

Anyways, hope that is helpful! Feel free to pm me if you have other questions, or ask here, or whatever :^)

[Lemons2lemonade]

I am really proud of you for painting such a detailed picture. Most of us aren't able to do that. (at least i'm not) Kudos. From what i understand, it sounds like your adrenaline is compensating for either low HR, low bold pressure, or both. This does not necessarily mean that you have to have high blood pressure, but more that it can be a reaction that is preceding a drop in your low blood pressure. I get the same thing with the adrenaline, and then the tachy. Adrenaline often precedes my tachy. As for laying on the right side, it pulls gravitational pressure off your heart. Additionally, when you say bradycardia, what do you mean by that in terms of pulse rate? And with tachycardia. what do you mean by pulse rate? Also, what times of day are you experiencing brady in regards to your sleep wake cycle? i.e is it happening right after you wake up, in the middle of "your day" or at night? As for adrenaline rushes, an SSRI will control them. IMHO that is how they work. Additionally, propranolol (beta blocker) blocks beta adrenergic receptors--adrenaline=adrenergic.

Might i also add that i was opposed to medication for a long period of time, and only after being medicated did i find relief from my symptoms.

[ramakentesh]

What lemon said plus:

A SNRI works more on dopamine

Wouldnt it then be called a dopamine transporter inhibitor rather than a norepinephrine transporter inhibitor?

SNRIs basically just increase norepinephrine. Since at least some POTS patients have abnormal NE clearance as it is it may worsen POTS in these patients (see Dr Raj's response in the 2013 newsletter for DINET). However, apparently some do well on SNRIs at least according to Blair Grubb. Combined SSRI SNRI are reputed to increase serotoninic input in the brain stem and reduce sympathetic outflow. Alternatively, selective SNRIs reduce sympathetic outflow directly by NE stimulation of alpha 2 receptors in the brain stem - infact that might be what causes POTS in NET deficiency (blunted vasoconstriction and baroreflex abnormalities)/

[ramakentesh]

There is a lot of research and speculation on whether there is a dopamine deficiency or too much of it. There is also some believing that there is a lack of GABA and therefore, lack of parasympathetic system function. (Which on the flip would create over SNS issues.)

Speculation about POTS relating to excess or too little dopamine?

GABA has very little to do with the function of the parasympathetic system. It is innerved by acetylcholine muscarinic, nicotinic and nitrergic nerves.

[k&ajsmom]

Thx guys for ur thoughts.

Lemons by brady in terms of pulse i mean anywhere between 35 and 55 and it usually will occur in the evening / afternoon through the night. It will be prevalent for a day or so then will dissapate and i will have a more normal rhr of around 60. Tachy is always between 120 on a very good day and 170s on a bad and will be upon standing and consistant. I have had very few days without such high numbers. I will however have a day occassionally when brady and tachy will tagteam me on my feet. Standing one day doing nothing strenous..my hr was 58 then 5 minutes later 130 then 5 minutes later 80..i have very very few days like this but it was a rough one...lol

[kitt]

What lemon said plus:

A SNRI works more on dopamine

Wouldnt it then be called a dopamine transporter inhibitor rather than a norepinephrine transporter inhibitor?

SNRIs basically just increase norepinephrine. Since at least some POTS patients have abnormal NE clearance as it is it may worsen POTS in these patients (see Dr Raj's response in the 2013 newsletter for DINET). However, apparently some do well on SNRIs at least according to Blair Grubb. Combined SSRI SNRI are reputed to increase serotoninic input in the brain stem and reduce sympathetic outflow. Alternatively, selective SNRIs reduce sympathetic outflow directly by NE stimulation of alpha 2 receptors in the brain stem - infact that might be what causes POTS in NET deficiency (blunted vasoconstriction and baroreflex abnormalities)/

Rama,

Interesting. I've had a crazy year with several difficult DX's, yet I've had no depression or mood issues.

Am thinking is it's because my dopamine levels are very high. (Dopamine levels were tested as part of the plasma catacholamine testing. My norepinephrine is very high but my dopamine is also very high.)

Any thoughts on the relationship between dopamine and mood?

[weathermandj]

Dopamine that is high will lead to more alertness with mood, less depression, mania (for some people), anxiety, hallucinations (depending on how high it is; after-all, Schizophrenia is caused by high Dopamine), and insomnia. Some doctors also think high dopamine could even lead to OCD behavior. High Norepinephine can also lead to insomnia, anxiety, mania (for some people), and less depression/increased attention.

Tramadol doesn't directly increase Dopamine as it has SNRI effects (SNRIs directly affect Serotonin and Norepinephrine only). Serotonin, Norepinephrine, and Dopamine receptors are "friends". Since Tramadol increases chemicals in the synapses of Serotonin and Norepinephrine receptors to better the mood, that can indirectly increase Dopamine as well, but Tramadol has no direct actions on Dopamine receptors. Something like Wellbutrin is an NDRI and touch NE and Dopamine directly.

[ramakentesh]

The notepinephrine transporter is responsible for clearance of some dopamine - maybe 20%

dopamine recpetors in the kidneys can promote volume loss.

[kitt]

Interesting, so (20%) of low blood volume may be attributed to dopamine? Or did I read that wrong.

[ramakentesh]

if there is a fault in the NE transporter potentially all of the low blood volume could be from abnormal kidney dopamine activity - maybe

[kitt]

Found this on Medscape regarding high dopamine and high norepinephrine. Also mentions renal disease.

Don't have familial dysautonomia and am not of 'Jewish extraction'. (Seems to be a prevalent theme in my search for 'dysautonomia, high dopamine and renal disease)

Don't want to go 'there'. An example of too much internet information for my purposes. But here's some research.

Lots of pages to this article. http://emedicine.medscape.com/article/1200921-overview#a0104

Another article on renal disease in familial dysautonomia. http://www.ncbi.nlm.nih.gov/pubmed/17059997

Never felt better that I don't have familial dysautonomia. Something to be glad for.

Counting my blessings.