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Issie, I'm not using this continuously as I feel my POTS is controlled with exercise. However, I want to use it more for anxiety. Propanolol was good for my anxiety symptoms however I can't tolerate more than 10 mg of it. I'm only going to use this medicine in low dosages to prevent panic attacks.

Julie were you taking high dosages of these medications? Typically for anxiolytic effects one just has to take low dose - like for propanolol I think it's 10-30 mg. I tolerated 10 mg propanolol ok. 20 mg was a little too much as I remember. I'm not looking for a long term treatment as my POTS in non-stressful situations isn't that bad with exercise + salt. I just need something to keep the anxiety attacks down during performances.

Well I took a 10 mg CR dose today and nothing really happened, I think it was too low of a dose. My blood pressure didn't even fall at all. I'm going to call my doctor tomorrow and ask for a higher dose. Also think I want to get the short acting stuff not the CR dosages.

It blocks the beta receptors like propanolol does but it also blocks alpha 1 receptors. The alpha 1 receptors are the receptors that norepinephrine predominately binds to. So in this way if you have excessive norepinephrine it will help to counterbalance this state.

Cardiologist gave me some 10 mg Coreg CR samples. Just took one about an hour ago, haven't really noticed any change but the peak concentration isn't until 4 more hours. Anyone have experience with this drug?

In terms of orthostatic hypotension this makes a lot of sense. Midodrine is indicated for OH patients because it is an a1 agonist so in other words it activates the a1 receptors preventing OH. However, I don't have OH, in fact I have orthostatic hypertension, which is why midodrine did nothing for me.

There are people who've had POTS for many years and do not have chronic cognitive impairment nor do they show signs of brain volume loss or cellular death. Alzheimers is now being viewed as an inflammatory disorder, not necessarily a cardiovascular one. Brain cells do require lots of oxygen but anytime you're not getting enough blood to your brain your brain will let you know by having you pass out, in which case the blood flow will renormalize.

POTLUCK, I don't see the individual numbers of NET levels of the POTS patients. However, it was a low average with a very low standard deviation suggesting that pretty much all the POTS patients had reduced NET. EDIT: they might have posted it in the online data supplement, I don't have access. Yes it is exciting to know what likely is causing the POTS, however there isn't a well defined treatment available to go with that thought. I believe by suppressing the cytokines with immune drugs it could boost NET levels by the Hand2 pathway, but that is something that would need to be experimentally verified.

Kayjay, I'm looking not for a medicine that I'll take regularly, but a medicine that will prevent a panic attack (my norepinephrine surges) during performance situations so I can talk/function. I'm guessing labetalol will pretty much prevent you from getting a panic attack. I can't find any studies with it used in panic disorder but it seems to do everything to inhibit norepinephrine. Benzodiazepines do not help. They make me feel less anxious, but the noradrenaline is still shutting my lungs off which is really the problem.

That sounds like a good idea with seeing Dr. Levine and getting tested for small fiber autonomic neuropathy. Keep in mind I did have a QSART that was negative that I believe tends to rule out small fiber neuropathy. Pretty much my worst symptom is the bronchospasm, it's so painful that it really is what causes my anxiety. (I think most people would feel anxious if they feel like they're suffocating.)

arizona did it help anxiety symptoms? I would love to get with Dr. Grubb, the only thing is I have important things coming up in about two months and Dr. Grubb is booked until past next year. I'm going to talk with an AOA cardiologist, he point blank told me he's willing to read any research I bring to him and will help me out. So I figure I might try labetalol or I might try prazosin. The major symptom I want to get rid of is the bronchospasm during NE dumps. It makes it so I can barely talk.

Have you tried the medication? Did it help your symptoms? I believe I have hyperadrenergic POTS (low NET) -hand tremors -cold sweaty hands -Raynauds -mild hypertension (but I'm young) -anxiety -bronchospasm under stress -panic attacks (NE dumps) -excessive sweat in response to light exercise Of course I'll not get "officially" diagnosed because all the POTS specialists are booked 1 year out.

Thinking about trying this medication. Propanolol took my HR down, but only seemed to make presyncope and SOB a little bit worse. Just wondering if anyone has had experience with this drug and if it has been positive.

dizzysally, no it's not psychological anxiety I've done it hundreds of times and still feels the same. Too much norepinephrine.

hypotension can also cause hypoperfusion of the brain. I say "also" liberally as I'm not entirely sure norepinephrine can cause vasospasm in the brain similar to Raynauds, but I'm just extrapolating that it can.

I think it's because we're hitting the wrong receptor. In this article, http://www.ncbi.nlm..../pubmed/2883941 they found that norepinephrine causes bronchospasm through alpha receptors. Not beta 2 receptors, histamine receptors, leukotriene receptors etc. etc. Labetalol has both beta and alpha blockade and was able to inhibit bronchospasm from norepinephrine. In my case I'm pretty sure it's norepinephrine induced bronchospasm since I only get the attacks during public speaking/talking to really hot girls. Which well just kinda is no bueno. Has anyone experience with labetalol? I'll talk to my doctor about this. But I don't get to see my specialist for a few months. Maybe my GP can pick this one up? EDIT: Actually it appears not to be alpha 2 receptors that norepinephrine induces bronchospasm, it is through alpha 1 receptors.

Interesting. My bronchospasms occur in performance situations, would anyone know a bronchodilator that might help?

Reuptake means the elimination of norepinephrine from the nerve. I don't know much about serotonin and how it can help pots but I hope your doctor will be of more assistance.

Albuterol blocks the beta 2 receptors. POTS already has excessive norepinephrine in the synapses, if you block one receptor they'll just go to the other receptors. It's a trade off effect probably. I'll have to try Albuterol, shortness of breath/throat spasm during public speaking/anxiety provoking situations is my worst symptom.

What I'd like to tell your doctor is the following. "In the case of Raynaud's a patient does not necessarily have systemic low blood pressure, yet their feet or hands experiences a hypoperfusion of blood. This is due to vasospasm of the relevant blood vessels. I'm not sure what causes the vasospasm, but because Raynaud's occurs in POTS and POTS is linked with excessive norepinephrine in the neurons, it might be due to excessive norepinephrine. Since norepinephrine can cross the blood brain barrier, it is also exerting effects on the brain. By the same mechanism, it might be causing vasospasm here which throws off the cerebral autoregulation. This is all without significantly affecting systemic blood pressure - just like in Raynauds." I'd actually be curious as to the response.

Unfortunately it is poorly understood what levels of serotonin as well as norepinephrine need to be to be "symptom free" which is one of the reasons why doctors don't test these neurotransmitters. The nervous system is quite complex, so we can only intelligently describe general trends. The SNRI you're taking inhibits serotonin reuptake as well as norepinephrine reuptake. Now it has been documented that norepinephrine reuptake inhibition causes POTS in healthy volunteers and that POTS patients have naturally low levels of norepinephrine reuptake. So that part of your medicine is likely to exacerbate your POTS symptoms. However, the serotonin part of the medicine might be what explains the beneficial effects of reducing your adrenaline surges as well as the fibro pain. There probably is something else going on because if this were the case then one would logically just switch you to a SSRI which has more specificity to serotonin receptors than norepinephrine receptors and that might work it might not I'm not sure. You have to understand we're not dealing with the gall bladder, skin, hair, or intestines. We're talking about the nervous system, the most complicated system on Earth. Even super computers do not reach the complexity of the biological nervous system. There is no way we will be able to provide precise answers, we can only talk generally and qualitatively.

So the more I think about norepinephrine and its involvement with POTS, it kind of sort of explains my shortness of breath issues. Whenever I get a norepinephrine rush, my throat gets really tight forcing me to swallow constantly. In addition, I get so short of breath that I can barely talk. This has really been a hindrance in my life. I was reading that asthma medications block the beta 2 receptors which prevents vasoconstriction in the lungs. Has anyone tried asthma medications for their shortness of breath issues?

There is a genetic predisposition, but it's more likely a predisposition for the epigenetic alteration. I.E. it's of the reversible kind.

Anything that gets the noradrenaline going is going to cause symptoms.

I just found a physician who is a professor of medicine in neurology, so I'm somewhat excited. The office said she treats dysautonomia so I'll give it a go. I called quite a lot of neurologists and got rejected as a patient. It's difficult to find someone because this condition isn't taught in medical school. I would suggest looking for professors of medicine or those involved in academics, it's unlikely you'll find a clinic doctor willing to take you on.