Still Reading Crap I Don't Understand

[Notgivinup]

Maybe someone smart can explain this:

Heart rate and blood pressure both exhibit a strong circadian pattern with values for blood pressure, heart rate, and rate ? double product typically peaking in the early morning period.[11,12] In most hypertensive patients, there is a rather marked rise in blood pressure upon awakening that is called the morning or "a.m." surge.[12,13] Systolic blood pressure rises approximately 3 mm Hg/hour for the first 4-6 hours post-awakening, while the rate of rise of diastolic blood pressure is approximately 2 mm Hg/hour.[14] In most patients with essential hypertension, the blood pressure generally declines from mid-afternoon on (especially if an individual is employed outside of their home) and reaches its nadir between midnight and 3:00 a.m. This 24-hour cycle of blood pressure then repeats itself and is typically quite reproducible in an individual as long as activity levels are similar for the 24-hour time intervals being compared.[15]

This abstract goes on to say that norepinephrine is also highest in the morning. So does any of this mean anything to those of us who have been told we have the hyperadrenergic form of POTS?

Just thinking out loud here. I do notice like a lot of people here I feel better at night.

[sue1234]

That sure sounds plausible. I do what I can to get through the morning, and then I improve the rest of the day. Of course, not enough to actually do something noteworthy. I don't make any appts. for mornings. The only thing I will do outside of my house in the mornings is fasting blood work, and I can't wait to get back home!

[firewatcher]

Well, for those of us labeled Hyper-adrenergic, it means that our "normal" morning surge will be greatly exaggerated! I know mine is. My HR will shoot from the 40's well into the 110-130's within seconds of being upright and stay that way for several hours if I don't take my Beta Blocker. My Diastolic BP will also go up by 20-40 mm/hg within a minute, my Systolic is slower to rise, but will go up to 120-130 within the hour. This "normal" rise in HR and BP is called the Morning Heart Attack Zone and most heart attacks happen then. For those with Cardiac Diseases, that morning surge can be too much on the system. Norepinephrine is one of the waking-up hormones and is supposed to help the body rev up for the day. I REALLY rev....

[Notgivinup]

Well, for those of us labeled Hyper-adrenergic, it means that our "normal" morning surge will be greatly exaggerated! I know mine is. My HR will shoot from the 40's well into the 110-130's within seconds of being upright and stay that way for several hours if I don't take my Beta Blocker. My Diastolic BP will also go up by 20-40 mm/hg within a minute, my Systolic is slower to rise, but will go up to 120-130 within the hour. This "normal" rise in HR and BP is called the Morning Heart Attack Zone and most heart attacks happen then. For those with Cardiac Diseases, that morning surge can be too much on the system. Norepinephrine is one of the waking-up hormones and is supposed to help the body rev up for the day. I REALLY rev....

Hmmm, Firewatcher I wonder why beta blockers don't help me? I've tried 3 different ones. I get depressed, and don't really feel any better. Also Dr. Grubb's work says bb shouldn't be use in the hyper kind of POTS. Or should be used cautiously is what I think he says.

[ramakentesh]

beta blockers dont work because norepinephrine is an alpha and beta agonist and ist the alpha constriction that causes most of the symptoms in hyper POTS (in theory). By blockin beta alone you are allowing alpha constriction to occur unapposed.

[firewatcher]

beta blockers dont work because norepinephrine is an alpha and beta agonist and ist the alpha constriction that causes most of the symptoms in hyper POTS (in theory). By blockin beta alone you are allowing alpha constriction to occur unapposed.

So would the Klonopin be damping down the alpha and the BB is blocking the beta? I have noticed that the BB does not work effectively without the Klonopin (went back on ONE drug at a time after Vanderbilt.)

[Notgivinup]

beta blockers dont work because norepinephrine is an alpha and beta agonist and ist the alpha constriction that causes most of the symptoms in hyper POTS (in theory). By blockin beta alone you are allowing alpha constriction to occur unapposed.

Ahhh, I see now. Thanks Rama. Your knowledge never ceases to impress me!

So again, in theory, could one raise her dose of klonapin, with docs approval of course, to dampen down some of the feelings of excess norepenephrine?

[Sophia3]

I take a xanax sometimes when I think ahead before walking or doing exercise. It HELPS with adrenalin surges so I don't get so tachy.

Klonopin is in the same family of drugs but allegedly works on the GABA receptors in the brain and MANY benefit from low doses during the day. .25 xanax on some days, not all, calm me and help me push the energy to get through a small task.

I've also heard, YEARS ago, Vanderbilt found some pts helped by Ativan.

p.s. I have hyperadrenergic POTS but my BP is often low, especially in the morning or when laying flat. likr 80's over 40's. It may spike when I first stand and that's normal too

[HopeSprings]

Be careful with the Klonopin/Ativan -- any of the benzodiazepines. I was on a very low dose of Klonopin a several times a week for only 6 months and became very physically addicted to it. The withdrawal was an absolute nightmare and took me years to really get over --in fact I still have lingering damage from this experience. I understand there are times when people have to take it-- just be sooo sooo careful and never quit cold turkey.

[gomindy21]

Has anyone only had surges at night, say between 12-2am. I do not tend to have any surges in the morning. My norepinephrine levels are in the 400's which I think is normal, so I don't know if they would classify me as hyperadregenic. If I'm not hyperadregenic by clinical terms, then I'm curious what causes the surges. Anybody have any knowledge about such things?

[erik]

I've had things that felt like surges in the night (these sometimes get likely during rare "phases", my symptoms kind of change up)... and have not had them in the morning. In my case, it is hard to figure out specifically what they were. It wasn't a simple nightmare or anything, usually had no notion of having been dreaming (or sometimes not really even asleep... just trying to sleep). I tend to be bradycardic so my HR might have gone low enough to set of "alarms" to counteract that in a brutal way. I also sensed that these could have been seizures of a sort, because of their nature and the fact that this "phase" of my symptoms also tends to include increase myoclonus (a generally benign brief seizure thing). They could well have been adrenal surges happening for some other reason too (though I do not fit the Pheochromocytoma mold that is a remote possibility).

I'm afraid I don't have anything definitive to offer, but I can say 'Yes, I've had night surges' of some sort They are not a regular thing in my case, just during certain phases. I endured rather than treated them since they aren't frequent for me. For me they had either a panic or a terror aspect to them as well... the ones that hit hard and are over in seconds make me think of seizure... the ones that build kind of slow and taper off make me think of catecholamine surge. I have no diagnosis or measure to indicate or eliminate a likelihood of either as of yet.

[firewatcher]

Be careful with the Klonopin/Ativan -- any of the benzodiazepines. I was on a very low dose of Klonopin a several times a week for only 6 months and became very physically addicted to it. The withdrawal was an absolute nightmare and took me years to really get over --in fact I still have lingering damage from this experience. I understand there are times when people have to take it-- just be sooo sooo careful and never quit cold turkey.

I completely agree to never quit cold turkey. I was on 0.5mg daily and it took me 6 weeks to taper off of it. There are many good taper schedules online. I agree that it is easy to become dependent on, and the faster you come off, the worse the rebound. Unfortunately, I have found nothing else that even comes close to controlling my daily headaches. My BB also does not work as effectively without it.

[kayjay]

Firewatcher, I think you may really be "on to something" Klonopin with beta blockers has stopped the surges for me. I have not had a huge "storm" for a few weeks now. I think I really need both drugs. I had horrible surges awake and asleep.

I would have them in stores, after walking up stairs and even if I got startled. Now I almost expect them sometimes and I realize that I am ok.

I think for me it took a few months for the meds to work Maybe 4 months.... but I have realized that I really am not having these horrible episodes any more.

Just still have pots though!!

About addiction... I was told that i would most likely have Dysautonomia for the rest of my life. I realize that I don't care if I am addicted to my medication... as long as I can always get it . haha. Also I never take more that one pill a day. If I need it before bedtime I break it in half and take the other half when I go to bed.

I don't know why Dr. Grubb would not recommend a bb for us hyper folks- Mayo clinic put me on one and I was horrible on a alpha/beta combo- made me too low.

[ramakentesh]

When i first got POTS i used to get nighttime surges. If I had a beer on the Friday night after work Id usually get them on the next night - no idea why ofcourse.

Some of mine were this bad:

Nowdays, I never get the night time surges, i just get random ones during the day and in the morning. When POTS was bad I had 12 months of them prettymuch, just recently they have started up again a little. Pretty annoying.

My doctor told me that they represent an ineffectual epinephrine response to impaired circulation that cause tremors, shaking and anxiety but that dont actually assist the blood flow problem at all. Although they feel like a panic attack apparently they are quite different (panic attacks induce changes in serotonin levels in the brain).

I believe other doctors seem to suggest they are just a peak of sympathetic activity and that POTS is primarily caused by sympathetic excess.

[Notgivinup]

God, i'm so glad I don't get tremors like that girl. Mine are just in my stomach area. It's all internal, and more like quivering. It's always right before I start to fall asleep. In the whole stomach area. I usually just notice it, and let it pass. Then I fall asleep.

[Maxine]

I'm thinking it depends on the person on how difficult it is to come off klonopin, xanax ect.

I've been on xanax and came off it with no problem, and I've also been on phenobarbitol and came off it. On both drugs I used my common sense and tapered slowly, and had no rebound effects. I think both drugs were a good therapy, and had a long term effect. When I was on phenobarbitol I was on it for about 6 months. I was having paroxysmal tachycardia spells, and horrible adrenaline rushes, but no other symptoms like fatigue ect. IT didn't seem to matter what position I was in---it just happened. The phenobarb worked like magic. I was not taking beta blockers at the time, the phenobarb worked alone-----which tells me the origin of this has to be in the brain, and phenobarb is an anti-seziure drug. http://en.wikipedia.org/wiki/Phenobarbital

When I started having the spells again in 1990, I was given betablockers. However, they didn't seem to be enough to stop the attacks completely. I took xanax, and my heart rate lowered, my baody calmed, and I tapered off them. In fact, I was able to taper my betablocker dose from 60mg Inderal LA once a day to the pill form of Inderal taking 20mg in the morning, and half that at night. I only had Chronic fatigue like symptoms for about 2 -3 months. I was able to work my job and feel fairly normal. In late 2000 I crashed badly, and have had lots of other problems. Beta blocker was increased to 20 mg 4 times a day, then I lowered it later to 60mg three times a day. When I was given ativan in the beginning of the crash It made me sicker, and didn't help that well with the adrenaline surges. I felt "out of body" on it. I went off it----tapered slowly. When Dr. Grubb diagnosed the POTS in June 2001, he but me on wellbutrin. This worked fairly well, but it seemed any time I got a virus, or a medical procedure my body went wild with OI and more adrenaline surges. Klonopin was prescribed in 2005. I only take half the prescribed dose, and this leaves room for the really rough days when I might need the full dose.

I think if a person has a good doctor, and is sensible, this type of medication can make a big difference. If the body needs it----it shouldn't be any different from anyone who needs thier insulin. We're obviously missing whatever it is that puts things into balance, and it simply makes life more livable. Who wants to walk around when you constantly feel like climbing out of your own skin?

Maxine :0)

[ramakentesh]

**** i wish my doctor would agree to give me Phenobarbitol! I spoke to one guy that used it for POTS and he said it was like night and day.

[kayjay]

Ram- can you try Klonopin? Nothing has helped me like this drug. It allowed me to sleep though the night Huge!!!

I wonder if it would help you because I also used to drink beer to feel better. I don't know why alcohol helped me but if did.

I don't (can't or shouldn't) drink now because of the meds I am but I am better off with the klonopin anyway. I take .5mg at bedtime. kari

[lthomas521]

If the norepinephrine levels are highest in the morning, it's probably because that's when the body is trying hardest to compensate for low blood volume. You stop drinking while you are sleeping, but your kidneys don't stop making urine, so your blood volume will tend to be the smallest when you wake up in the morning. The body can try to compensate for low blood volume by secreting more norepinephrine, to increase the heart rate, etc.

This is why many of us have been told to start our salt and water loading before we get out of bed in the morning.

[HopeSprings]

LThoms- What about taking a salt tablet before bed? Would that help us hold on to water through the night? I am coming to the conclusion you just wrote about-- I am up peeing during the night, my blood pressure is very low in the morning and I feel drunk upon wakening... as soon as I get up the racing heart and sternum pressure begin. What you said makes perfect sense.