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hyperpots

Fight Or Flight, Could I Be Onto Something For Hyper Pots ?

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My Values below from testing, so a few things are happening. Probably the cause of my POTS, Sympathetic Overdrive (Constant), Immune Suppression bringing out the Lyme, Babesia, etc. Would account why I'm not Orthostatic, but I'm not hypertensive either, which is strange. Would appreciate if you guys look at entire post and give me your opinions.

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Epinephrine

  • Also known as adrenaline, epinephrine is a hormone and neurotransmitter transferred by the nervous system that creates a fight-or-flight response in the body. Present naturally in the adrenal glands, epinephrine raises the heart rate, constricts blood vessels, dilates pupils and suppresses the immune system.

Norepinephrine

  • Norepinephrine is a neurotransmitter and hormone that also is part of the fight-or-flight response in the body. When norepinephrine is released in the body, it raises the heart rate, which causes glucose to be released as energy and blood to flow to the muscles.

http://www.ehow.com/about_5380460_epinephrine-vs-norepinephrine.html

I have Clonidine here 0.1mg Tablets. Took 1 tab before bed last night and although I still feel sick, my head wasn't as crazy out of bed this morning. BP was 102/70 HR 73 sitting, and 106/84 HR 83 standing. I still feel overstimulated, but a bit more tolerable. So, I just took another 0.1mg of Clonidine and will see how the rest of my day goes. If I can get this under control, perhaps the immune system can come back and deal with my Lyme infections, just a theory, but would seem to make sense.

Clonidine is a centrally-acting α-adrenergic receptor agonist with more affinity for α2 than α1. It selectively stimulates receptors in the brain that monitor catecholamine levels in the blood. These receptors close a negative feedback loop that begins with descending sympathetic nerves from the brain that control the production of catecholamines (epinephrine, also known as adrenaline, and norepinephrine) in the adrenal medulla. By fooling the brain into believing that catecholamine levels are higher than they really are, clonidine causes the brain to reduce its signals to the adrenal medulla, which in turn lowers catecholamine production and blood levels. The result is a lowered heart rate and blood pressure, with side effects of dry mouth and fatigue. If clonidine is suddenly withdrawn the sympathetic nervous system will revert to producing high levels of epinephrine and norepinephrine, higher even than before treatment, causing rebound hypertension. Rebound hypertension can be avoided by slowly withdrawing treatment.

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Who drew your labs and what do they suggest?

You are low in every area.

Why would you be low.

Is this chemical issue actually triggering your issue and what does your doctor want to do about it.

You are self medicating and as a nurse it makes me nervous.

I know it's your body and you are desperate to try anything, I would just be very nervous to give cardiac meds if it isn't indicated.

You can do more harm than good....potentially get a build up in the system to where you could get hypotensive or have bradycardia.

Please be careful.

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A Dr. gave me the Clonidine a while back. It made me so sedated, even at the low dose. Thought I'd try it again given the high Epinephrine.

It's not working... ! Making me sleepy in the head. BP is ok as is my Heart Rate, but there is this disconnect between my head and my body. I'm laying in bed and feel so sleepy, yet I'm squirming all over the bed, can't sit still. So uncomfortable. I've been taking 5-htp and L-Tyrosine too to try and get the other numbers up.

Not sure why the Dr. ordered this test as there were no suggestions given to me.

None of my Dr.'s know how to treat me. What choice do I have ? Even my Lyme Dr. is lost with my symptoms.

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I think if you haven't yet I'd try an integrative doctor.

Just because you get prescribed a med once doesn't mean that you should experiment with it.

It's hard telling what all meds you have in your possession right now and a doctor would not want you to be storing meds and coming up with your own cocktail. It could be deadly, damaging or at the very least counterproductive.

I had enough meds to probably kill a horse and disposed a bunch just for safety purposes.

With kids in the house I didn't want them to get a hold of them and hurt themselves.

You really need to be careful with that.

Okay I'll take of my nurses cap now.

I really would though try to take these findings to someone and get answers.

Maybe even a neurologist since these are brain chemicals-just an idea.

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Steven,

You still don't know if your HyperPOTS yet. Just because your noriepi levels are low with a seated test - you have to lie down for at least 30 min. and then stand and see what happens to that level when you stand. If it goes above 600 then they consider you HyperPOTS. Clonnidine is used for HyperPOTS to lower the noriepi levels. Even though I am hyperPOTS went way above 600 that med didn't work for me either. Side effects not worth the benefits.

I do agree with Lieze - but, in a little different way. If you are going to try out/experiment (which I do to) - just do one thing at a time. That way you will know what is doing what. It could be the combination of things causing an adverse reaction. Until you can get your lying and standing noriepi levels checked - I probably wouldn't do that med.

Will type more later,

Issie

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Your labs are similar to what I had for results when I first started struggling with dysautonomia. One thing I always noticed was when I had a back massage that was very relaxing (the ones that just feel so wonderful) it seemed like I would feel better for a short time. My niece was going to college for massage therapy and she was learning how it can increase dopamine levels by a pretty large percentage. If there was a way to find a non-prescription tactic to improve our health, it would be much better than having to deal with side-effects that come with most meds.

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you sound similar to me. You epinephrine may be high to compensate for low NE - your body tries to use this to re-route your ineffectual circulatory control. But all it does is make you anxious and 'squirmy' like you said. Apparenrtly the same experience happens in people who take too much blood pressure medication. they get agitated, weak, high E and squirmy.

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From what I understand you also need a large rise or high BP upon standing, not just high standing norepi to be diagnosed as Hyperpots.

Not necessary a rise in blood pressure upon standing, but having high blood pressure and not low most of the time. We still have the drops in our bp's and that's how they get the orthostatic part of the illness - but most of the time we tend to run high or more normal bp's. Just being upright will give us the high bp's whether sitting or standing.

Issie

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Your labs are similar to what I had for results when I first started struggling with dysautonomia. One thing I always noticed was when I had a back massage that was very relaxing (the ones that just feel so wonderful) it seemed like I would feel better for a short time. My niece was going to college for massage therapy and she was learning how it can increase dopamine levels by a pretty large percentage. If there was a way to find a non-prescription tactic to improve our health, it would be much better than having to deal with side-effects that come with most meds.

My fiance rubs my back everynight and it helps soooo much. I think that is why smoking helped me too is because it also increases dopamine levels when I used to smoke in the past. Also massages help with blood supply and pooling :) even if only for a short time.

This would also explain why I am so addicted to chocolate LOL

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The labs you had done may actually not be accurate. I believe this was done from a urine sample (ug/gCr is urine) ? I had a similar problem--you really need to get plasma catecholamine levels. My urine catecholamine levels were all low which was incredibly confusing...but once they tested my plasma-- it was all elevated.

See if you can get the same doctor who ordered this to order plasma levels for you--and ask for 3 levels: One lying down for 30 minutes, one sitting, and one standing for at least 10 minutes. I'm willing to bet you will see much different results ;)

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I also seem to be stuck in the 'fight or flight mode'.... for about 9 years now, but in the past 2 years, it has been super intense and neverending. I had 2 very poorly tilt table tests done, one from our reknown heart center in my hometown and one from vanderbilts autonomic unit. One was inconclusive and the other, was a poor man's tilt test.... and i wasn't having my multitude of symptoms that day, only maybe 3/4s of them. And why i say multitude, is because i can have over 50 different symptoms in one day, everyday.

My integrative doc and I have talked for a year now about my case. We talk alot about my forever being stuck in the flight or fight mode. I think the meds that i take should be in my 'signature' at the bottom of this post, if you would like to compare to yourself and others. I think our first initial attempt to get things more 'in control' was to be put on klonopin...... although it helps alot, i still get the same feeling you describe. And it's a feeling of like you really want to crawl out of your skin but you just can't and it, to me, can lead me to desperate measures that i will not mention here. Also, one key factor was figuring out that i do have mast cell activation disorder, thanks to several amazing women on this forum. That, has been one key factor in me regaining some part of 'me' and lessening some of my other major symptoms, such as the breathing issues and the constant urination of up to 40 some times a day (no kidding.... seriously)........

My integrative doctor, as of a few weeks ago, put on my charts as having 'chronic autonomic dysfunction' 'mast cell activation disorder' 'chronic fatigue syndrome' 'gluten intolerance' and chronic headache..... (as in, it never goes away.... ever..... in like many years..... never have i spent a day without one). He also suspects me to have 'elhers danlos' and possible mitocondrial disease........

We are currently working with yin yoga......im trying to learn to meditate......a diet free of gluten and sugar (or as free as i can possibly get it) and my current concoction of meds and supplements.... (and im currently working on assistance with marinol), which we both have found very beneficial for me since i vomit and have dirrrhea every day of my life for hours at a time. The elimination of gluten has 'calmed' things down a bit and has made a definite difference, not a cure all, but well worth living a 'clean diet' lifestyle, which i still struggle greatly with.... but with that diet, my meds and marinol, the fight or flight, seems to lessen considerably. Unfortunately, i cannot afford 700 a month for the marinol, so i am having to due without and still in a very sick state. My last appt last week, he also is adding ashwagandha to my regimen...... for my poor response to even the tiniest of 'stressors'....... this is suppose to help adrenal fatigue, as well as sleep, as i have had insomnia since i was a child.

oh and one thing i found out for me..... i cannot take ssri, or snris or tri cyclics..... and i cannot take benadryl, atarax..... the phsyc drugs make me a million times worse and can quickly and easily send me into a psychotic state, which are scarier than i don't know what.... only one worked for me for 1 year, which was lexapro, but after about 9 mths and 35 lbs of weight gain later, it stopped working...... the benadryl, etc..... if i take that, im climbing out of my skin and climbing the walls... i literally want to peal my skin off due to the feeling of a blue million nerve endings all firing uncontrollably (that's the feeling i get) almost like someone is slowly electricuting me..... had to go to the er over a few of those that i tried...... never want to feel that feeling again..... but, due to the 'stuck in the fight or flight mode'..... i get that same feeling and it is utterly horrendous. I feel like im being physically tortured everyday.... which does horrible things on the mentality.

Oh, and i fired my old therapist/phsyc doc of 3 years...... as every experience with them was negative...... and they could not teach me coping mechanisms in dealing with my intense spikes and intense illness times, which are many, which are often.... and my own coping mechanisms where no longer working. My integrative doctor, who is also a professor at our medical school here, has in his office, a psychologist who deals only with the chronically ill, of whom are my doctors patients, all of whom are chronically ill with rare cases (my doc is a rare case doc)..... so i started up with her a couple of weeks ago. I knew i had to have some type of therapy. As going from a straight A student in college and entering pharmacy school and now being bedridden about 60-90% of the time...... well, it is quiet humiliating and all this sickness is really getting to me after so many years and i cannot apply myself to anything, and that is a hard concept for me to accept, among many others.

I've been researching for 9 years about what's going on with me. This site, being a key factor in any progress i have made......Hoping with a few things set in place and with the help of marinol, if i get it, and with the yin yoga, clean diet, my current meds and ashwagandha and im sure more suppliments and medication changes in the future.... hoping to gain some life back this year. Not sure..... but i do have a darn good integrative doc who listens, cares, and BELIEVES ME. He and I discuss many options and he, if i can back up what i suggest with good research, he will allow me to try meds/alternate methods that I mention, with the agreement that i try meds, alternate methods that he suggests too. I feel like he is in this with me for the long haul and that, is what keeps me going. A caring integrative doctor, who does believe and does want to help in every way.

But.... i sure would love the fight or flight mode to just get back to normal for once... and forever..... but oh well..... still working on it.

much luck..... peace be with you and many blessings for answers that you need. :)

tennille

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Im personally am now starting to agree with the growing consensus that there is no difference between regular and 'hyper' POTS. Mayo clinic dont really accept that there is any difference and recent work from Vandy suggests that QSART results were abnormal for both hyper and non-hyper patients to the same extent (52%).

The hyper for me anyway appears to be a compensatory mechanism. When im very bad my BP goes down, when im doing ok it stays up higher. A beta blocker makes my BP go UP. An alpha agonist makes my BP go DOWN rather than up!

With that out of the way, Id say that the squirming is your body trying to fidget the blood to your brain. Whwn the anx is really bad Ill take a beta and make sure I stay flat as much as I can. But ultimately the things that help these symptoms are things that improve blood pressure rather than the opposite.

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With me if any of the meds wore off, I'd have drastic spikes of blood pressures - called rebound bp's. Because I'm so sensitive to meds - I never could take the p.m. doses because of my bp lowering so low at night. I have drastic swings in my bp and it can happen within minutes of really high - highs and lows. That's why, for me, meds are almost impossible for me to take because of the extremes.

I guess Mayo must be coming around to the HyperPOTS idea - that's the DX I have from the doc at Mayo. He also told me I'd be one of the hardest types to treat - and he wasn't kidding. As for the QSART test - mine was normal. Maybe working on things that affect the blood pressure is the wrong angle. Maybe, we need to look at something else. If our bp's are compensating for something else - then maybe they need to swing all over the place. It's really so frustrating.

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