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Adrenaline Surges Continue Even With B-Blocker & A-Blocker, How Is This ?


hyperpots

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I just want to reiterate, I had a pos. Tilt Table Test a while back. It was never determined that I had Hyperadrenergic Pots until recently. However the Dr. suggested Florienf, Midrinone, which really arn't used for this form of POTS.

Without making this too long, I tried a few things last night. I took 0.2mg of Catapress, 150mg of Zantac, and and H1 Blocker. I slept great, even woke up better then I have in a long time.

When I got up, about 2 hours later, I started getting the Surges again. I had already taken another 0.2mg of Catapress and another 150mg of Zantac, plus my a.m. Klonopin of 1mg. I was feeling very sedated in the head while this was going on and I'm like What the Heck is going on ?

I went onto my treadmill and walked for 25min. at a mod pace to try and burn up some of this. I felt horrible the entire time I was walking, but want to implement exercise into my treatment. I came upstairs, sat down and cooled off, and the Adrenaline Surges started again.

At this point, I decided to take 20mg of Propanolol, which I had from the same Dr. originally, but had never taken any of these meds. So, I felt some relief about 20 min. later, but 20 min. after that, the surges started again.

My Blood pressure is just fine and my heart rate is beautiful at 75 Resting and about 90 standing. Havn't seen numbers like this in a long time. So, on one hand, it appears I'm blocking the Adrenaline if you look at the numbers, but what I'm feeling in my chest shooting down into my stomach is consistent with the Adrenaline. I can't fathem that this could be anything else.

I'm not trying to treat myself, but I do have a strong medical background and I'm careful with what I'm doing and watching my HR and BP by machine to make sure I go slow. I'm only doing this because I am in such agony with these Rushes. If I go to an ER, they will shoot me up with 4-5mg of Ativan which does nothing, so please don't jump on me. I obviously need help and have my 3 hr ANS appt. on Monday. Just trying to survive until then. Can any of you relate to any of this ? Please tell me what else could be causing this ? My Plasma NE was 406, but that was laying down in a hospital bed. I'm sure it's much much higher standing, but I'm even getting the Rushes while just sitting in a chair and the only time I feel proper blood flow to the brain is when I am 100% flat in bed. This is rediculous.

Steven

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My understanding is that the beta blockers only block the action of the adrenaline on the heart that it will not stop the surges.

I think a benzo might do a better job of that which you said you took one.

I find activity difficult.

It's like I need to be a monk and sit in a trance to not agitate the system.

I know this is not what any of us desire or realistic for our lives.

I would have difficulty controlling getting my system agitated with the activity that you are doing.

I have to do a little ( sit with feet up and get system calm ) repeat.

Too much activity sends me haywire-but I'm not on any meds.

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Is this how many people here live ? Do they just sit and try not to move ? I havn't been to active b/c of Malaise from the Lyme, but I have never had mobility issues and these types of rushes that are so severe.

I can't imagine that this will be the rest of my life, just sitting, meditating ? What do you do when you have kids ? I'm gonna need a full time shrink.. Very Overwhelmed if it's not evident....... :(

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My choices have been complicated by my own issues and fears...

I have felt I had reactions to meds so fearful to take them.

I wouldn't necessarily say I'm the norm.

Also it's complicated by my anemia.

I didn't know what was happening I just knew I was getting weaker and weaker and I didn't know why. My instinct told me I was going to just burn myself right out.

So finally it was discovered I have microcytic anemia and I'm being treated with IV iron.

I am hopeful in time that I can be more active but my choice to do less felt like what I needed to do.

I do get out and run errands and many here are quite active so no you don't have to spend your life meditating like a monk.

It's all a personal choice and we all have different limits.

I hope that you can find meds that help you to achieve a lifestyle that you can be comfortable with-I guess I'm hoping I can ease into more activity without feeling like my body is spinning out of control.

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Is this how many people here live ? Do they just sit and try not to move ? I havn't been to active b/c of Malaise from the Lyme, but I have never had mobility issues and these types of rushes that are so severe.

No not at all. Most people do improve eventually. You will find that the people on DINET tend to be pretty unwell--that is why they are on DINET. However, many members have come and gone, many of whom improved with time and treatment. I have improved greatly, personally and live a pretty normal life. I do have relapses from time to time, but I would define myself as "recovered".

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I do almost all of the above- no alpha blocker for me anymore though Just a beta blocker. When I get really bad I drink pedialyte (spelling) and try to wait it out. I know how horrible this feels. ERput me on ativan also. just made me feel loopy on top of everything else. I take nadolol and Klonopin. It took a long time but now my surges happen less.

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Have you seen an endocrinologist and been tested for adrenal gland tumors that could be secreting excess adrenaline ? When my local cardiologist was at his wits end, he referred me to an endocrinologist to rule adrenal tumors out. I did find out that I am hypothyroid, so it did help. Alpha and beta blockers can increase the BP in a rare type of adrenal tumor called pheochromocytoma. Thats what the endocrine doc said. It would be worth a try to have the testing done, at least you wouldn't lose anything if it turned out normal and the endocrinologist might be able to give you tips on treating the POTS, since florinef is actually FDA approved for addison's disease (adrenal gland failure).

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Florinef and midodrine can and are often used for all forms of POTS.

Usually, but not always, the adrenaline is caused by abnormal circulatory control - it is a consequence of POTs rather than the main problem. if you treat it with an alpha blocker it might help (if you have very elevated NE levels), but it may tip you into hypotension which will cause the adrenaline symptoms to worsen.

Most patients Ive spoken to suggest that inderal, with its combined beta 1 and beta 2 response is better at cutting the adrenaline feelings. This blocks the effects of adrenalin at all beta receptors and seems to make a patient feel better at least for a while. But again, beta blockers also decreasd blood pressure and can also make you feel worse.

Since a faulty norepinephrine transporter is still implicated in some forms of POTS - usually the hyper kind - I would think an SSRI would be a safer option than an SNRI, so tread with caution.

How I got through my last and by far worst relapse was to use beta blockers to calm down the anxiety feelings and once they were under control then I worked on improving my orthostatic symptoms with exercise. When your all adrenaliney your body is haywire and will react to all sorts of things.

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Hi Steven,

I know you want to find that perfect cure and in a hurry. Please keep in mind that there are various treatments that may be the right fit for you. Your body will, however, need time to heal and some of these meds may take a little while to have their full impact.

My POTS specialist was clear with me from the beginning that he believed I would get better but that it would take more time than a typical illness because we are really performing a balancing act with our nervous system. My point being, I know it is hard to be patient but trying to force and rush through the process of treatment and healing can be detrimental given the kind of disorder we are dealing with. I find that on days when I let myself wind up about my situation, I end up having a flare up by that evening or the next day, not because of depression or anxiety, just because it is a body's natural reaction to stress.

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Hi Steven,

Sorry to hear how frustrated you are. I am in the same boat - still trying to get anyone to deal with the adrenaline rushes and trying different things. A year on from my diagnosis i have lots of good days (swimming's good) but like you am into my third day of adrenal rushes and poised over a valium having already taken half a beta blocker and wondering why doctors don't seem to get how awful this experience is. My cardiologist who has only seen one other POTS patient suggested Pinodolol but i have not tried it yet.

Some days it is just HR which goes high and i can cope with that - i don't feel ill just frustrated because i want to get on. But the rushes are something else.

Your post and the responses has helped me too so thank you.

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I agree with Ramakentesh. Adrenaline can make your body do weird things, I have read several articles saying that constant adrenaline activates your immune system causing all sorts of problems. My adrenaline surges went away when I was a smoker do to my bp being up. Now that I dont smoke, I feel rotten and have constant problems with adrenaline.

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