loot

I'm in the UK as well.

Probably its to do with not enough carbon dioxide in the body which leads to less than ideal oxygen levels. Hence the V˙O2max being low. Exercise increases carbon dioxide in the body so would remedy the situation. There are all manner of things that can lead to low CO2 in the body.

Yeah it comes and goes. I had a patch under my left eye for a while, several months ago. Then for ages I had nothing and now I have a cold patch at the front of my right ankle.

Me too. Its also on and off.

Losartan is an ARB (Angiotensin II receptor blocker), while those other drugs are not. What I am referring to is the drug class that Losartan belongs to which is ARB. The drugs contained in that class all end in -sartan ie Losartan, Irbesartan, Valsartan, Telmisartan, Candesartan and Olmesartan. What I am saying is that Losartan, while it has an effect, which clearly helped your son, imo is the worst by far out of all the ARBs. I never said Losartan was not effective, I just said its the worst of the ARB class which all essentially do the same thing. I'm not a scientist but I can point you to many real scientific studies and comparisons showing the other ARBs to be far superior - particularly Telmisartan, Candesartan and Olmesartan.

If Losartan is helping, then the other ARBs would help even better according to my research. You don't mention what your son's condition was but if you want to know more, I can point you to actual pubmed studies showing how Losartan is lacking in all kinds of areas, which you can approach a medical professional with with intention to switch to another. The surmountability described in the link I gave shows how Losartan's effectiveness will eventually wane. It depends also on the seriousness of the condition - its possible Losartan's effectiveness if enough. What dose is he on may I ask?

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

I'm not a frequent visitor to Dinet anymore because my son is so much better these days, but I do occasionally check in, and saw this post today.

Losartan has literally given my son his life back. He spent 3 and a half long years suffering daily with dizziness, fatigue, nausea, you name it. He went overnight from being a straight A student to being unable to attend high school. After 3 years of trying meds like Midodrine, Mestinon, beta blockers, Clonidine, etc., none of which helped him, we figured out that he has a nitric oxide deficiency and started him on Losartan (Cozaar). Within months, he was able to take SATs, pass a GED exam, get a part-time job, apply for colleges, and now he is a straight A student in his sophomore year (living in a dorm) at a prestigious university. He still has POTS, but Losartan makes it possible for him to function.

He has now been on Losartan for more than 2 and half years. Losartan is not a good drug for everyone, but it is a good drug for SOME. No two people have the exact cases of POTS and what works for one person may not work for another. Blanket statements that a drug is bad are not helpful.

Hmm this subject seems to be my territory. First of all, in my opinion, Losartan is no good. The theory is fine but Losartan seems the worst of the whole drug class of ARBs. I've made extensive research on ARBs and that while Losartan has the most history and studies, to me it is the worst of them all. Here is a comparison of the ARBs:

http://bjcardio.co.uk/2010/05/comparative-arb-pharmacology/

Particularly the insurmountability of Losartan. Basically even if it does work, it will stop working soon enough - so in my opinion no good for the long term. This is an interesting theory but aren't ARBs supposed to be bad for people with POTS according to the website we are on now? http://www.dinet.org/what_to_avoid.htm

Yes that's true, many things can be the cause of POTS. It was just my intention to point that out because the OP seemed to have confusion as to whether it was POTS or not causing the symptoms. There should never really be much confusion as to whether you have POTS or not. Maybe there can be confusion over whether your tiredness is caused by hashimoto's or CFS....but you can't confused POTS.

No matter how similar your symptoms may be to those with POTS, if you don't have the stand-up-and-your-heart-rate-goes-into-overdrive symptom....then POTS it is not.

In my opinion,just because someone has an increase of 30 + bpm it doesn't mean that person has POTS ...or I should better say just POTS.

Also, I believe that the role of the doctor is much more complex than that. A doctor can determine the underlying cause of your POTS, can help you find out the type of POTS you're dealing with as the treatment for hyper POTS is different than the one for neuropathic POTS or than the one for the hypovolemic POTS and so on.

The test you have suggested, loot, the poor man's tilt table is indeed a good indication of one's vitals, but it has to be done for more than 5 minutes and it only gives partial info about how the BP and HR numbers change. During a real and rigorous tilt table test your HR and BP are monitored continuously, not every couple of minutes - something you can't do at home unless you have a beat-by-beat BP machine. Those kind of readings associated with the readings obtained when they test your body's reaction to different substances that artificially increase or decrease your HR or your BP give the specialists a more complete and complex picture of what is going on.

For what it's worth, sometimes the TTT may be negative for someone with POTS as in some patients the symptoms wax and wane. If you were to check my vitals today, you'd never think I have POTS, yesterday was a different story though.

Best,

Alex

Yes I agree, that's why I said you need a doctor to verify everything and do more in depth testing. But, if you test it yourself and there's no actual postural tachycardia issues then why would you go to the doctor saying you think you have POTS in the first place? If you're feeling tired all the time and have other symptoms then fine, have yourself checked out but if there's no tachycardia upon standing then why in the world would you think it might be POTS?

Obviously a one off test may be negative, but if you're testing yourself with my method then try it for several days to get a good idea. If its always negative then almost certainly the problem lies elsewhere.

Loot,

That's actually a good idea. How accurate do you think those devices are though?

As far as the confusion is concerned... whether I have some dysautonomic symptoms or not is not in debate. It is more trying to find out if it is primary or secondary (caused by some other disease). And I'm actually most interested in seeing if I can pinpoint the cause of the bad brain fog that I have. I can put up with the other symptoms because they're relatively mild. It is just this **** brain fog...

Yes I'm not saying you don't have symptoms but you have to have P.O.T.S...for it to be POTS because that's it key characteristic. Its tachycardia upon changing your posture. Those devices are fine enough to get a good idea whether you have POTS or not.

loot- the issue really is that other problems can cause the same exact symptoms. Most of us have also had lots of other testing to rule out cause of postural tach.

Thegron- have you had a plasma potassium check? I had my worst migraine and pots flare after a Bp pill that raises potassium. I would have definitely used the term "thunderclap".

There are many different conditions that have similar symptoms to POTS but if you don't have actual postural orthostatic tachycardia...then it obviously can't be POTS at the root of it all. Its like having cancer like symptoms but with no cancerous cells....in that case, no matter how much it seems like cancer - it isn't.

I having trouble understanding how there can be confusion as to whether you have POTS or not. To be honest, you don't really need a doctor to diagnose it, he is only needed to officially confirm it. Just buy a portable finger pulse reader and to test, lay on the floor for about 10 minutes and then get up and stand up straight. Take note if your pulse rises 30 beats more than it was in the supine permission within 5 minutes of standing. Normally you won't have to wait long before it rises. If it only goes up 10-15 beats more then its probably not POTS.

Ok I'll have a look into that. I think I must certainly be stuck in sympathetic mode. Technically you could say people with POTS are all so 'frightened' we're too scared to even stand up...so our hearts race upon the 'shock' of standing. Pranayama, specifically analoma viloma (alternate nostril breathing) has been shown to increase parasympathetic activity. Actually its specifically the left nostril breathing for parasympathetic and right for sympathetic, so make sure your left nostril is clear at all times since each nostril will be slightly more blocked than the other at any one time.

Glad to hear you are doing pranayama. That can be very helpful, and the exercise as well. Would encourage you to keep both of those up. Biofeedback may help as well.

There is a book called Healing Trauma by Peter A Levine Ph.D which you might find helpful. He addresses the issues of what happens physiologically in the body (to the autonomic nervous system) when people undergo emotional trauma and how humans frequently get "stuck" in that pattern as we have lost the ways that other mammals have of releasing that "fight or flight" reaction after the event. It's very interesting reading and you might find the exercises and CD that comes with the book to be of benefit.

Sure hope you can find some relief from your symptoms!

You have EDS right? Don't you take ARBs for that?

Oh yes I forgot, my trauma was emotional and its no longer really felt, but my POTS symptoms remain. Biofeedback isn't too popular here in England unfortunately but I have my own biofeedback equipment anyway. I also started pranayama recently. I started cardio a few weeks back and have been doing 30 minutes every morning. Also I've been doing intensive calf training, trying to build their circumference since it seems blood flow in POTS patients is directly proportional to calf circumference:

http://ajpheart.physiology.org/content/286/3/H1216

Haven't really had any results with anything yet but haven't been doing it that long so have to see how it goes.

No I don't take any medications. I don't want to, especially since its sudden onset, trauma based, I believe it must be possible to solve it myself. There's people who can control their heart rate, temperature etc with their mind so why can't I learn to fix this too..

I'm new to this forum and would like to explain my situation. I developed POTS, sudden onset after a traumatic event. I can't be certain that's the cause but considering they happened at pretty much exactly the same time I'm guessing it must be. My symptoms are:

1. obviously my heart rate raises whenever I stand up (supine ~58 to ~110 or sitting ~72 up to ~110).

2. neuropathy - mainly in the thighs but also gradually has spread to almost everywhere being relatively numb.

3. tiredness but not really severe.

4. constant thirst and general dryness despite drinking inordinate amounts of water every day.

5. low blood pressure - has been around 100/60 but varies.

6. a few other little troubles but basically that's it.

I've had this for almost a year now and haven't been able to fix it yet. The thing is, I don't seem to have actual problems with anything, physically. I'm aware most of the time that my heart is racing when I've stood up but other than that it has no other effect. I have no problem with any amount of intensive cardio or weight lifting etc. Oh and I forgot to mention, I'm a man.

But why is your pulse rate so high in the supine position? Do you think your supine heart rate is high due to lack of exercise/conditioning? My readings are 55-60 in the supine position and then 108-110 on standing.