jangle

I tried it, it built up with time and eventually - I had really bad heart pains and had to stop it. Go slow and go low.

Issie

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.

I've been reading about the notion that with pooling and orthostatic intolerance and POTs type things our brains can suffer from not enough blood flow and that means not enough oxygen. Is this really true? If it is it sounds really serious.... So the super important organ the brain is actually starving for oxygen?

What would the long term implications of this situation be? How about the short term symptoms of this.... Curious if this is what people refer to as brain fog ... Did your doctor who knows about POTS tell you about it and describe it as a normal benign occurence - even though it provides troubling symptoms? What are your symptoms of this and how did you find out a lack of oxygen to the brain is what caused the problem? Or is it a lack of blood and therefore glucose?

Has anyone had testing for dementia or alzheimer's or Mild Cognitive Impairment because of their brain symptoms? What happens if you do show a problem here ... is the treatment extreme like wearing O2 or nothing that drastic... maybe medications? Do the support hose and abdominal binders help your brain blood flow?

Has anyone asked their doctors for an MRI because of how troubling this type of symptom is? I think I asked something similar a year or so ago - but can't remember (duh!) what was discussed.

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.

This article was not published till June 21, 2012. At least you are staying on top of things Jangle! I do not think I can read the full article. It looks like maybe I can access it for 1 day for $20. I do not know if I could print it if I can access it.

Did the POTS patients in the study show expression of the NET gene that overlapped with the normals and how much difference? This is very interesting, as it actually shows something wrong, or not functioning in all POTS patients that results in the postural tachycardia etc. Even if the thing that is wrong is a result of more than one etiology. Epigenic Modification of the NET gene could even be a normal healthy body response that has gone wrong, as is the case in most illnesses. In my own case being on the Propranolol LA 80 BID for over 20 years ( for tremor/ blood pressure ) might cause the body to try to correct what the body sees as incorrect by epigenic modification.

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.

Well I don't get anxiety or symptoms like your describing. I can get over stim in animated environments. Laying down is always my best medicine, but that is hard to do when your out and about. That being said I haven't had any problems with labetalol at the dosing I'm on and it does work for me.

Print a copy of one of grubbs articles where he states he uses labetalol for hyper pots and show that to your doc. I'd don't think it would hurt to give the labetalol a try. I had issues with propanol too. Actually, most of the bp meds I tried before I found out that I had pots didn't control my bp when I was up right. I went through about 8 of them. I can still break through even with labetalol. If that happens though I just take some more and I do okay, because it is short acting. So you might have to play around with the dosing. I would start low though, we don't need the high dosing that is given for essential hypertension.

Have you tried a suda phed when your having the breathing issues? I also use benedryl, but that is better at night as it makes you tired. I sometimes feel like I can't get enough air in my lungs, and have found those seem to help. I have also used guifasen, because my mucus tissues are so dry. I don't cough or anything, but when I take that things loosen up and I breath better.

I'm guessing your docs have already tried to put you on the ssi's, or tried to treat you for anxiety did any of those work? Dr. Grubb has used effexor and his recent study showed some patients using adderall did well with that.

Grubb had my cardio do the standing and supine catechcolamine test, which showed my rise on norepi on standing. Have you had that test done yet? If not see if you can get your cardio to do it. My epi was elevated supine and stayed the same on standing which then was in the normal range.

What your describing happening to you does sound very hard to deal with, I'm so sorry that it is that bad. All we can do is keep trying until we find something that works. I still think it wouldn't be a bad idea to get in with levine for a skin biopsy to see if your symptoms are the result of small fiber autonomic neuropathy. Your symptoms do seem to fit that. Levine would also test you for a bunch of things to rule out cause. He also sent me to a good pulmonologist, to make sure there wasn't a problem with my lungs.

Here to help, you just let me know what you need. Take care!

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.)

Hey Jangle, Labetalol is the medication Dr. Grubb prescibed me after seeing him and he did diagnosis me with hyperadregenic pots. I have found it to work. It is short acting which is good because my bp and hr would drop during sleep into hypotension. If I was having a real active or stimulating day I would take more of it. Rarely am I even taking 200 mg. Mostly just 50 which is 1/2 of 100 mg pill.

I don't get all the symptoms you do, but they sure sound like what dr. grubb describes as hypo pots. Since you can travel maybe try to get in with him, even if it takes a while. He and my neuro Dr. Levine here in phoenix really got me on the right track, he also agreed with Dr. Levine's diagnosis of mine being autoimmune. Which we now no is true as the autoimmune disease finally presented.

It really sounds like you've been having a hard time getting a doc to see and/or hear you. I've been there and know how tough that is. I did finally hire a patient advocate to help me.

Take care kiddo!

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.

Jangle, labetolol is a mixed alpha and beta adrenergic receptor blocker. Propranolol is just a beta blocker, ie it will have some BP lowering effect but the HR slowing effect is much stronger. The alpha receptor blocking effect present in labetolol (in addition to the beta blocking effect) causes vasodilatation and will have a much greater BP lowering effect. So labetolol and carvedilol (coreg) are mainly used for hyperadrenergic POTS pts who have hypertension.

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.

Hi jangle,

That's interesting that you get brocospasms when speaking publicly or to really hot girls. Is it possible

to de sensitize yourself to this by doing it more often ? Starting with short sessions. Followed by

positive re-inforcement of your chosing. Or take a public speaking class.

I took a class in public speaking and it helped me get over my brain freeze / anxiety. I'm sure I'd get a little nervous now but

it's been 22 years since I had to give speeches.

Fwiw, you may find that hot girls are easier to talk to when there's only one of them. Just don't

focus on her looks.

Tc .. D

Ps. My brochospasms are from hypoperfusion and go away after laying down for an hour.

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

I don't know Katie.... Now I'm getting confused! I thought the dysautonomia doctor that I just went to said that my pre-syncope symptoms I had in his office was because my BP feel from 140/95 to 99/70 while standing and that my blood vessels in my brain weren't constricting when my pressure came by up so..... cerebral hypoperfusion. (but I may be 100% wrong)

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.

Yes. Not only do they not work, they make all of the other pots symptoms way worse-especially the fast heart rate. Inhalers make many normal people's heart race. Moreover, they behave more like a stimulant and made me jittery with uncontrollable adrenaline rushes. I have used Albuterol and q-var. Sometimes I wonder if my past inhaler use is related to my pots. Onset was consistent with this. I don't have asthma, but get horrid bronchitis frequently. I also tried it to see if it would help my pots to no avail.

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.

I wounder what affect albuterol has on catecholamine levels?

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.