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Paradoxical Reactions And Random Fluctuations


ramakentesh

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Two of the most annoying things about POTS that I find is that firstly I get paradoxical reactions to things - meaning I can take something that helps once and actually makes me worse at other times - and I just get these random, unpredictable days where Im terrible often for no apparent reason:

To give you an example, if im feeling POTSie I often eat licorice just in a mild candy form with say 3% licorice extract to boost the BP at the time and make me feel less fatigued. It used to work great for years, but now it only works sometimes, and often othertimes it makes me feel ten times worse on the spot. So I cant take it say before a meeting at work because I dont know if im going to be great or terrible as a consequence. I find caffeine the same - very hit and miss. It will help dramatically one day so ill try it again the next time and it will go the complete opposite way and make me worse...

I find this one of the particularly annoying challenges of POTS. If I have a flare up of ankylosing spondylitis I just take an antiinflammatory and the pain usually decreases. But everything I take for POTS either is hit and miss or makes things worse rather than better.

Medications wise Im currently not on anything (commencing mestonin over the holidays). I exercise constantly but I dispute the contention that this protects people from relapse or cures them (im living proof of that).

the second thing is the totally random relapse days. Ive spent ten years trying to work out what it is that causes these. Is it me overexerting myself? Is it something dietary like eating foods high or low in nitric oxide donors the day before? is there some other sign of the cause? Honestly I think they are just random and this is the annoying factor with POTS. It makes it hard to predict how I will feel on a particular day in the future.

That is todays rant :)

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Oh yeah. I am curled up in pain right now from a trial at gluten-free. I almost fainted at Church on Sunday- while I was sitting. And, THIS was supposed to make me feel better???

Turmeric helped dramatically at first. Then I developed a sensitivity to it. I gingerly re-trialed it months later (lower dose) and got no response- positive or negative.

Paradoxical and consistently inconsistent. Grrrrrrrrrrr

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Well, I haven't found anything that works in the first place so I can't quite relate to part one, but the randomness of worsening or improving symptoms I totally get! I've had days when I feel so clear headed, almost normal and I think and think, but cannot pinpoint anything I have done differently. I wish I could find that thing and bottle it. And then go through periods when things are so dramtically worse and again can't find a trigger. With the exception of hormonal fluctuations (I can pinpoint when this is the cause), it does seem very random.

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Over the years first a beta blocker helped a little, then licorice helped for years, then valarian for a while, then my doc told me to try TCM and I got some big improvements for a while (but now this makes me feel worse). Midodrine and another alpha agonist helped for a week, made me feel super anxious and then they stopped working and Id go backwards. Florinef was again anxiety city for me for what ever reason.

At the moment my only medications are caffeine sparingly and exercise. But exercise decreases my energy levels but if I rest I tend to be worse pots wise LOL. Its like balancing to counteracting things in a web of paradox LOL. Im also trialling a high onion diet that a CFS patient told me about that seemed to help the first few times.

Even my Ankylosing spond flares up for a reason more often than not ( i do get random flares, but its often allergies or too much bad food that seems to make it get nasty). But POTS just seems totally random.

My best friend's father died and I knew Id have to stand all day at the funeral so I did everything right to ensure i would have a good day and guess what? that one day was the worst ive had in months...

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I can SOOOO relate to the randomness of flares. I've had a three month increase in most of my symptoms but have some days that are better. Recently I had a day that was GREAT! Could jog around and do things I haven't been able to do in over 2 years. Went to bed feeling great at the end of the day. Woke up and it took me (literally) hours to be able to get up and make it to the bathroom. Couldn't say 2 words without gasping for breath like I'd just run a marathon. I wasn't that short of breath the day before when I walked 3 miles and ran 1/4 mile (three times) while carrying a backpack and a water carrier of 6 1-liter bottles of water. HOW CAN THAT HAPPEN? How can I possibly be "deconditioned" when I can do so much one day and then can't walk across my bedroom the next?? What happens during the night that changes my entire physiology?

I think it was Mack's Mom (Julie) who was asking on another thread if we could move between "types" of POTS- like low flow and normal flow since she seemed to be one type one day and another type in other ways. I'm the same way. Been diagnosed with both "hyper" and neuropathic OI. This doesn't make sense, it's not logical- at least given our current understanding of "how things work." I think that's partly why I get so frustrated with this. It's bad enough to live with the symptoms and never be able to predict how you'll be at any given time, but then to have it all be so wacky, unpredictable, inconsistent and illogical....UGH!! I don't really think I'm crazy but sometimes I have to wonder. LOL

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Hi ram,

Interesting observation ...

I'm going nuts trying to nail this down too. I know for sure that certain foods, chemicals, etc cause reactions

for me but have yet to identify anything, other than low sodium and too much magnesium, that affects

my oh and pots. So, is the problem from an electrolyte imbalance ? ?

OR ? I had another idea since you said that you exercised.

I'm sure you're familiar with post exertional malaise (pem). But, If you're not familiar with how this works for

you, you may not make the connection. Exercise induces pem ... Pacific labs proved this.

I'm totally disabled so my pem is obvious. If I get out one day to run errands, the next day my body will feel

weak especially my brain. I become a couch zombie .. Lol .. This lasts for 24 - 48 hours

as my body repairs itself. Then on day 3 or 4, I'm back to having energy and brain function again.

Now, Dr myhill recommends ribose and caffeine as a boost for pwcs. It helps recycle adp to atp .. Or something

like that. I use a sugary gf snack instead of ribose and coffee.

Now if I'm rested but I've run out of energy, this combo works great. But on the days when I have pem, drinking a whole pot of coffee and eating a whole cake wouldn't help me. My body no longer had the capability to be kick started.

I have no idea what chemicals are involved at this point ... but I had these prior to getting me/cfs.

And it could be that due to hypoperfusion caused by oh and being upright for an extended period of

time, my heart, brain, lungs, etc are down for repair too.

So maybe this is what's hapening to you but since it's subtle you're not seeing it. Everytime

I.ve tried any exercise regime, I strengthened my muscles and built endurance BUT I had

Chronic pem ...

Tc .. D

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Hi,

R-you always sound so on top of understanding pots - to see you at a lost at it's randomness was unexpected.

I can't figure it out either - it does seem totally random. It leaves you feeling powerless to do anything to make the situation better.

A few weeks ago i went to see a GP who is a homeopath and specialise in nutrition. I do not really hold with homeopathy but anything that throws any light on the pots is welcome. Anyway she is about 85, still growing her own veg, driving, emailing and sharp as a button.

She gave me a lot of advise about diet and nutrition and supplements. About not using aluminium and micro waves etc

She also had a few theories which i will throw in and might have some truth to them.

She suggested that root filings (aside from the mercury filings) harbour germs and infections. When a tooth nerve is drilled out it is impossible to clean it properly and this can leave bacteria that can easily enter the body.

She suggested that there was infection or viruses in my body and particularly my heart which was causing all my chest pain. That these needed to be overcome through good diet and of course some homeopathic tablets.

Somehow this made more sense than any other theory i have heard. I found it a powerful enough experience that i have gone wheat, dairy, potato, free for 2 weeks.

As i said i do not find the theory behind homeopathy believable but one has to try whatever you can.

i am finding acupuncture has really helped my energy levels but it is not a cure - well not a quick one.

I can tell from all you research that you have turned this over and over and i have really appreciated the insights you have shared- it has really helped. So sorry you are feeling a bit despondent.

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I've spend half my life trying to find a cause and affect, as many have said what helps one day, doesn't the next.

It hits home the point that no one really knows the true root cause of POTS, we're just treating symptoms. Whether its high NO or low NO or increased renin or a NET deficiency........ Once the real cause is known maybe it will explain how one medacation will work one day and not the next.

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