DeGenesis

Are you saying that Mestinon is a bad idea if you are hyperadrenergic?

It's because there is very little difference between the pressure in your brachial artery when your heart pumps and the pressure in it in between contractions. It's usually caused in POTS by reduced venous return to the heart (blood pooling). When very little blood returns to the heart, there isn't much to pump out, and thus systolic pressure can go quite low, not much higher than diastolic.

Well it turns out that my appointment is actually next Friday.

I am thinking of asking for midodrine. I have used stimulants (Adderall, Dexedrine, etc.) in the past with good success, and they work very similarly to midodrine, except midodrine does not cross the blood-brain-barrier. The problem is, as with the stimulants, it will worsen my already crummy peripheral circulation. The beta-blockers I have tried have done this. (Although I am keen to try Bystolic [nebivolol]).

I lowered my dose of clonidine to 0.1 mg b.i.d. instead of 0.15 mg. My blood pressure actually dropped and my HR increased, but I could think more clearly. I think you may be on to something with the clonidine-midodrine combo.

Here is a good summary of Rhodiola Rosea and the science behind it. I'll warn you, it looks better on paper than it feels in real life.

http://examine.com/supplements/Rhodiola+Rosea/

Thank you.

I do sleep, fortunately. In fact, I have an appointment (not medically related) tomorrow morning (Edit: This morning. Lol). Should be fun. I have an odd sleep schedule. Some might call it "non-24-hour sleep-wake disorder", but whatever. They say a lot of things. Mostly I sleep 4 hours in and around obligations. I used to have a normal sleep schedule, but when I went to sleep at 10 or 11 pm, I would wake up 3 hours later. I've tried all sorts of things to fix it, including staying up an entire night and an entire day, but then I only got 3 hours sleep that night. So now I take sleep whenever I get it.

Yeah lorazepam has to be taken 3 times a day to avoid interdose withdrawal, but even then it is iffy. Valium (diazepam) is great for a number of reasons:

1) It is long-acting, as you say, due to its long half-life (20-100 hours).

2) It has several active metabolites that are commonly prescribed benzodiazepines, including temazepam and oxazepam.

3) Its most important active metabolite, desmethyldiazepam (also known as nordiazepam) has a staggeringly high half-life of 36-200 hours.

Too bad about the convulsions. I'm afraid I can't relate but the expectation of having a seizure, and not knowing when, would drive me nuts.

Don't we all wish that more doctors would keep a "beginner's mind".

https://en.wikipedia.org/wiki/Shoshin

Real quick -- when discussing certain medications used for off-label purposes with new doctors, I have to explain to each new physician I see that Ativan, (Lorazepam) is not being used to control an anxiety disorder, but rather it's used to effectively lower my heart rate

This may help.

Lorazepam is a benzodiazepine, as you probably know. Most doctors think that benzodiazepines work only in the brain. This is not true. There is the benzodiazepine site found on GABA-A receptors in the brain, which produce their psychoactive actions, but other kinds of benzodiazepine receptors exist.

There are the so-called "peripheral benzodiazepine receptors" found throughout the body. They have been given new names, "translocator protein", and now the "mitochondrial benzodiazepine receptor".

All benzodiazepines, including popular ones such as lorazepam (Ativan), clonazepam (Klonopin), diazepam (Valium), and alprazolam (Xanax), bind to peripheral benzodiazepine receptors.

Peripheral benzodiazepine receptors are involved in a huge number of physiological processes. A quick glance at the Wikipedia page for "translocator protein", which is well referenced, will show this.

Importantly, the peripheral benzodiazepine receptor is found in the mitochondria of heart muscle cells, and regulates both the force with which the heart contracts, and the rate at which it beats.

This paper explains. Read it carefully. A smart doctor will clue-in immediately. I am planning on buying the full text at some point, since I do take benzodiazepines and their effect on POTS is quite obvious.

"Roles of mitochondrial benzodiazepine receptor in the heart."

http://www.ncbi.nlm.nih.gov/pubmed/21459278

Only because you said you're a nerd.

Something weird is happening with quotes. Your response is in your quote, and I can't quote you. Maybe it's because I was editing my post while you quoted me.

I had no trouble getting my PCP to prescribe clonidine. It has many off-label uses such as migraine prevention, treatment of ADHD, PTSD, anxiety, insomnia, agitation, akathisia resulting from psychiatric drugs, etc. It is not addictive or habit-forming, although if you come off of it quickly, you can experience rebound hypertension.

Make sure your doctor does not think you are saying clonazepam.

I would never advise anyone to lie about what drugs they take, as that could result in you being prescribed a drug that could worsen one of your conditions, or precipitate a serious drug-drug interation. This requires a thorough understanding of drug metabolism and liver enzymes, and even doctors get it wrong much more often than you might expect. I keep a list of all the drugs I take in my wallet for this very reason.

Unfortunately, a prescription for an SSRI or a benzodiazepine, for example, can easily cause a doctor to attribute all of your symptoms to anxiety or depression.

Tread carefully, and if a doctor asks about a certain drug you are taking, an SSRI for example, you could say that it increases the standing vasoconstrictive reflex, which is true. You are prescribed a benzodiazepine? You could say that it reduces the tremor induced by your POTS. A neuroleptic? You could say that it helps you sleep.

I'm not sure where all that came from, but I understand the fustration of having all of your syptoms being attributed to anxiety or depression.

Degenesis,

Are you able to tolorate travel at this point? If you are in Ontario, is it a possibility that you can come to the states? In Buffalo, New York, there is a POTS specialist who is one of Dinet's Medical Advisors, Dr. Svetlana Blitshteyn. I believe she does phone consults also..

http://drblitshteyn.com/

**Hope that link works also. I am not able to copy and paste anything into my posts for some reason. Can any mod's help by any chance?

Thanks, the link works, and yes I do travel to NY state sometimes. (It is cheaper to order things over the internet, have them shipped close to the border, and pick them up. I usually send my packages to a UPS store in Lewiston).

She seems very impressive.

Thanks go out to all of you. I will address each of your comments individually, but for now I have a bad migraine. Keep them coming! I really appreciate it.

I have an appointment with a cardiologist in the electrophysiology and arrhythmia department of a local hospital on Friday. He is easy to talk to. Last time I saw him he took me off of Florinef due to high blood pressure. He advised me to drink a lot of water and eat a lot of salt.

My POTS presents as follows:

- Immediately upon standing there is a large increase in heart rate (HR)

- Over the next 10 minutes one of two things will happen:

1) Blood pressure (BP) will increase dramatically. Slowly HR will decrease. Systolic pressure lowers slowly, and diastolic pressure increases. Thus my pulse pressure (the difference between systolic and diastolic pressure) becomes very narrow. I can usually stand at this point, but the narrow pulse pressure and high diastolic pressure may indicate reduced venous return to the heart (blood pooling) or diastolic heart dysfunction.

2) BP and HR will continue to increase until I feel presyncopal and must lay or sit down. This usually occurs with acute exaccerbation of POTS, such as being dehydrated, or too hot.

- After standing, sometimes my hands and feet become cyanotic (purple) and puffy.

Ok.

- I take clonidine 0.15 mg twice a day. This has controlled my BP and HR very well, although sometimes it lowers BP a little too much and I experience reflex tachycardia.

- I now experience little to no presyncopal symptoms. If I do, they are mild and can only be detected by slowness of speech and thought.

Here's the problem:

While clonidine has normalized my vitals, I am more fatigued than ever. Fatigue was a problem before I "got" POTS, but clonidine has made it much worse, such that now that I can stand, I seldom do so because of the fatigue.

I have no idea what "subtype" of POTS I have, or if it even matters. I am not sure if the high blood pressure is a compensatory mechanism to maintain cerebral perfusion, or due to over compensation of my SNS.

Is there any medication I might suggest to the cardiologist?

Make sure you enjoy the morphine while you can.

Most strep is now resistant to penicillin, as arizona girl points out. I asume he is recieving penicillin G. There is evidence to show that penicillin and amoxicillin kill healthy bacteria in the oral cavity, and make you more suseptible to strep throat. Yes, good bacteria live in your mouth too.

A short course of a cephalosporin-class antibiotic is now preferred to treat strep throat.

There are also other beta-lactam antibiotics other than penicillin that may be more effective against group A strep infections. Piperacillin is a popular choice in hospitals. It has a very broad spectrum of action.

There are other classes of antibiotics that are effective against beta-lactam resistant group A strep, but most doctors will not use them outside of an inpatient setting, and only with proven resistance to other antibiotics.

How are Tyler's tonsils? Has a tonsilectomy been considered?

You know the drill.. add another med to fix the one given before!

All too well. In fact, I'm sure most here can identify with that experience.

I live Toronto, Ontario, so my choices are severely limited. There is a cardiologist, Dr. Guzman, a couple of hours drive from my me that some people have had a good experience with.

I'm holding off for the moment. Referrals are rather "rationed" here in Canada, and I want to be totally sure before I ask for one upfront. It's not quite NHS bad yet, but we are headed in that direction.

Thank you for your interest.

Any others here from the GTA?

Edit: http://fhs.mcmaster.ca/medicine/gim/faculty_member_guzman.htm

This is a Grubb Article from 2012.

Not my favorite (am I allowed to say that?) but some useful information is provided.

http://www.bjmp.org/content/postural-orthostatic-tachycardia-syndrome-pots-evaluation-and-management

The problem is that all the really good review articles are long. I once brought two articles to my PCP, since he wasn't doing any research and asserted that, "I don't think any doctor has ever seen this". Anyways he told me to give him the shorter one.

Raisin,

I also am on propanalol. I great deal of it actually.. 480mg total throughout the day. (Has to be short acting version, not LA) The propanalol doesn't do much for the BP, but taken w/ other meds it lowers my HR. Midodrine & Ativan.

I also take clonidine.. my doses are played with so frequently. I can't be off of it because my surges are unbearable, and it does help my BP now. I've been on it for years. In the beginning it didnt lower the pressures, now my body can quickly become pretty "dose dependent" on it and If I try to lower the doses too much, too quickly, I get rebound hypertension. Anyway - right now the doses are 0.2 4x per day & PRN when my systolic rises above 180.

I'm on Verapamil as well, it's a BP med that's a calcium channel blocker. I was put on it for the Superventricular tachycardia and it helps with my Raynoids. 240mg throughout the day. Best of luck! -Sarah

Have you tried diltiazem? It is also a calcium channel blocker and is used for supraventricular tachycardia.

Verapamil is supposed to be more selective for cardiac muscle but this study found that it caused venous pooling in supine and head-up positions, while diltiazem did not.

I have not tried any CCB, but I've always been interested since they lower heart rate without lowering renin and therefore total body blood volume. Beta blockers do that. CCBs can still cause redistributive hypovolemia due to blood pooling, but not diltiazem, apparently. I imagine amlodipine would be the worst. As usual, YMMV.

Edit: Here is the study: http://www.ncbi.nlm.nih.gov/pubmed/8806974

Good to know!

That's exciting. I don't envy you, but it looks like you're in good hands, literally.

Hi DadofPotsSon,

It's awesome that as a father you are so involved with the health of your child. It may seem like a no-brainer to you that a father should be involved, but my dad ceased to give a **** about me once he discovered I wasn't going to be an NHL superstar. My mother did the best she could.

You gotta advocate for your care, and sometimes showing doing so is risky, but it gets you the care you need.

Exactly. This is how I got care in the hospital. They wanted to send me home. Before they could detach me from all of the monitoring equipment, I got up and stood still. My heart rate immediately rose above 160 and before I knew it every **** alarm in the building was going off. "Extreme tachy", my monitor said. Note that they can see your vitals also at the nurse's desk. The alarm kept getting louder and eventually everyone came running. And that's the story of how I was admitted to the hospital for a week and given a diagnosis of POTS. Lol.

Here is a excellent video that helps to explain the connection between EDS, autonomic dysfunction, and chronic fatigue. You will not be disappointed.

http://vimeo.com/71903707

You might want to look into an aldosterone test for your son.

I'm not saying I don't believe you, but something isn't adding up.

Best of luck.