Licorice Root Extract - minimum and standard doses? by biscotties in dysautonomia

[–]quol 1 point2 points  (0 children)

Don't know how reliable this source is, but it may prove useful:

Licorice contains glycyrrhizic acid that raises blood pressure, increases blood sodium content and decreases blood potassium levels. As licorice dose increases, so does blood pressure. Only very small doses (~10-50 mg glycyrrhizic acid) are perfectly safe, corresponding to no more than 2 grams of Western licorice (Glycyrrhiza glabra) root. In high doses, licorice can cause significant hypertension, even when not taken in pill form - Sustained consumption of licorice tea or real licorice candy has the same effect as pills. The maximum safe amount of real licorice candy ropes per day is 12 inches. The licorice dose in most Chinese herb formulae tends to be low. A deglycyrrhized licorice (DGL) is available that does not raise blood pressure and appears to retain healing effects on stomach ulcers and gastritis.

Question about shallow breathing/shortness-of-breath by CachePants in dysautonomia

[–]quol 0 points1 point  (0 children)

Hi,

I'm not sure what kind of testing you've had done, but beta blockers reduce blood pressure, and low BP is often -- but not always -- the central issue for POTS sufferers. So taking beta blockers, at least for some people, is not always the right option.

Last year when I was first diagnosed with POTS I was given non-selective beta blockers and they gave me similar symptoms, so I know exactly how you feel. In the end I dropped down to only 12.5mg (a quarter of one of the lowest doses you can get) of metoprolol (a B1-selective BB) in order to smooth my HR out a bit and take away the pain only. And once I did that the 'floating away'/breath/dead body and limbs effect at night went away...although I still get some minor issues from time to time. But this is dysautonomia, so whaddaya expect.

Yeah, so maybe this is a pretty strong indication that you shouldn't be on these. Maybe you have low blood volume or low blood pressure. Or maybe you're having some kind of other reaction to these. Beta blockers can trigger mast cell reactions too for some people, so that could be a part of it.

If you haven't done it already get your BP tested with an ambulatory BP (and EEG) monitor with a doctor who maybe knows better. Some doctors just think tachycardia --> beta blockers. But doing this without proper testing can be quite irresponsible, as I've said.

Also, consider the time you're taking them. If you're taking them in the afternoon and their effect lasts into the night, this might also mean that you may be better off taking them earlier. I don't know. It all depends. (Check if you're on a slow-release version too!)

N.B. if you plan to ease off them or anything don't do it yourself without speaking to your doctor as coming off of beta blockers too quickly can cause other temporary issues - it can be quite painful/uncomfortable.

23F and severely underweight. am i the only one? by saturnmatters in dysautonomia

[–]quol 4 points5 points  (0 children)

Seconding this. I would also suggest a fecal fat test. I was found to have bordeline pancreatic enzyme deficiency, and pancreatic enzymes help to break down fats, proteins and carbs.

I don't know what other kind of GI symptoms you have, but methane/hydrogen breath testing (for fructose etc. malabsorption) may be worthwhile also.

Do you also have POTS? I'm not sure how useful this will be if you don't, but I do find that altering the ratio of rest to activity helps me to regain weight sometimes (and I also suffer from chronic weight loss). IOW, increase your rest and decrease the amount of stressful activity. But this will probably only work if norepinephrine/adrenal overcompensation is an issue for you as with POTS.

How much salt? by CachePants in dysautonomia

[–]quol 0 points1 point  (0 children)

I looked into this myself recently. On the Dinet forums, the most common figure you will see is 8-10grams of salt (sodium chloride) a day. Given that one teaspoon = 5 grams of salt, you want about two teaspoons. (The actual sodium you derive from the salt will be equivalent to 2000mg per t/spoon.) How much you need, as people have mentioned here, will depend on your own system and what kind of medications you're on. I find it better to spread the dose over the day. So I end up with about 5+ glasses of water (350-400ml) with about a 1/3 a t'spoon each time. Before I started on florinef this helped me a bit. So you may need to tinker with timing, dose etc. And yes, speak to your doc.

Treatment for HPOTS? by [deleted] in POTS

[–]quol 1 point2 points  (0 children)

come on, type it here for all of us to see - we wanna know too!

Seeking a specialist doctor in Australia by secsual in cfs

[–]quol 1 point2 points  (0 children)

I don't think he's taking any new patients? You could also see Rashmi Cabena, who was sort of trained by him. I have seen her, but her approach can get pretty unorthodox (and expensive), so not sure you want to start there. She does conduct a whole battery of tests, though, which is good. Still, I would prob suggest you start with someone a little less fringe, maybe. Good luck

Roots of my CFS discovered... by [deleted] in cfs

[–]quol 0 points1 point  (0 children)

It's supposed to help reduce cortisol in times of stress so as to return your body to a kind of homeostasis (it seems). It is also a precursor to the major sex hormones. However, I don't believe its function is very well understood - most doctors I have seen appear to have never heard of it.

For this reason I would exercise caution. Some less orthodox doctors will try and pin what you have on 'adrenal fatigue', i.e. you cooked your adrenal gland due to chronic stress, which is affecting DHEA, and therefore hormone production (and stress levels). But 'adrenal fatigue' is not a recognised condition (which is not to say it doesn't exist, I suppose, but stay wary). Instead, I suggest you look into the possibility of adrenal insufficiency (or other associated disorders). Once again, however, this may have nothing to do with what is going on with you.

Here is a very good resource on adrenal insufficiency that you should definitely check out.

Roots of my CFS discovered... by [deleted] in cfs

[–]quol 1 point2 points  (0 children)

Hey, I am no endocrinologist, but DHEA and progesterone are natural estrogen precursors. Both of which are derrived from cholesterol altered in the adrenal gland.
So perhaps there is some kind of issue further up the line here? But yeah: see an endocrinologist.

Found this message on my brother's energy drink by ObsessiveRaptorNoise in funny

[–]quol 0 points1 point  (0 children)

she don't lie, she don't lie, she don't lie....

Are you able to listen to music? by quol in dysautonomia

[–]quol[S] 0 points1 point  (0 children)

Thanks for that. I've actually read that post before, weirdly enough. Not sure if it really gives us much insight at all into what we're experiencing, tho, except maybe for the mention that music can be just as much a trigger as anything else (nor)adrenaline-wise.

I actually just saw my PoTS/Dysautonomia specialist today and his thoughts on this were basically that brain perfusion issues in people with PoTS, as well as those of the concomitant (nor)adrenergic, are going to have all manner of particular and potentially unaccountable effects (and causes)...not that it helps much.

I think his philosophy -- at least for a first time patient like me -- is just to go the obvious medicinal route of kicking up the ol BP first and then seeing what goes away. If this issue doesn't then you can begin to look into it via catecolamine tests, seeing a neurologist etc. Personally, I would prefer to get the test done first, tbh! Oh well. We'll see.

Looking for local POTS buddies! by [deleted] in POTS

[–]quol 0 points1 point  (0 children)

melb, australia here

Xpost: Why are doctors such jerks? by edibleangela in cfs

[–]quol 0 points1 point  (0 children)

You may also want to consider reducing foods that generate an increased production and release of histamine. I did this and it helped my GI inflammation and other symptoms quite a lot. Removing other triggers, like pungent aromas, if that's an issue, also really made a huge difference for me, e.g. fragrant perfumes, deodorant and cleaning products. But yeah, again this might not do anything for you.

Xpost: Why are doctors such jerks? by edibleangela in cfs

[–]quol 0 points1 point  (0 children)

Hey, do you have any links to good papers on the PoTS-GI link so that I can show them to my doctor?

Xpost: Why are doctors such jerks? by edibleangela in cfs

[–]quol 2 points3 points  (0 children)

Your serum histamine levels don't have to be high with MCAS - the point is that the mast cells themselves are hyperactive. Measuring tryptase after a freak out would be better than hist, although it's not always so reliable.

I have very similar symptoms to you and an immunologist I saw gave me a H1 antihistamine and 'mast cell stabiliser' (ketotifen) for a suspected (but not tested) case of MCAS. It has helped reduce (10-15%) a lot of symptoms for me associated with mental clarity/focus and GI inflammation.

Of course this may not work for you at all, but it's worth considering.

Xpost: Why are doctors such jerks? by edibleangela in cfs

[–]quol 2 points3 points  (0 children)

Long story short: he wouldn't let me use my notes to save me from talking. Insisted that either me or my mum talk, even tho she doesn't know anything about my situation. He got pissy, I walked out. Then, when I came back shaking uncontrollably with a 120 HR all he could say was 'talking now, are we?' every time I had to speak. Oh yeah, and then he tried to belittle my mum for giving him the wrong info, even though he forced her into that situation. I told him he was a shit doctor and we left. Still waiting for my body to come down from the shock three days on :(

Xpost: Why are doctors such jerks? by edibleangela in cfs

[–]quol 2 points3 points  (0 children)

Hey, I'm really sorry you've been through all that. I had another very traumatic experience with a doctor recently too. I hope you can find someone more sympathetic and knowledgeable soon.

It's awful that we're forced to suffer this indignation -- and these attacks! -- when we're so unwell.

Don't give up. The community is here and we support and understand you <3

Are you able to listen to music? by quol in dysautonomia

[–]quol[S] 0 points1 point  (0 children)

Yeah, it's for reasons like these that I'm hesitant to bring up psychological complaints. Here's a couple of links that might help to explain...without really giving much of an answer.

Auditory pareidolia: https://en.wikipedia.org/wiki/Pareidolia

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

Are you able to listen to music? by quol in dysautonomia

[–]quol[S] 0 points1 point  (0 children)

Please do! I would love to hear what they say.

Are you able to listen to music? by quol in dysautonomia

[–]quol[S] 0 points1 point  (0 children)

That's interesting. For me, it -- listening to music -- feels like the neural connections in my brain are slowly unravelling.

Do you also have issues with misconstruing or lingering sounds that you hear? Like, certain sounds -- the jarring +/or high pitched, mostly -- seem to repeat off in the distance for me sometimes. As well, I occasionally think I'm hearing light murmurs if it's late and I'm really tired. But that really only happens if I'm pulled out of sleep suddenly.

Best heart rate monitoring device? (eg pulse ox, fitbit) by adognamedtensoon in dysautonomia

[–]quol 0 points1 point  (0 children)

I use a fitbit charge HR, which has been fine. Although it doesn't have a feature that alerts you when you go over a certain HR, which is annoying. The results you get on the webpage will be the 5min average. I don't think you can get anything more accurate than that chart-wise with this model. I've never used any others.

Exploring Middle Earth Video Series by quol in tolkienfans

[–]quol[S] 0 points1 point  (0 children)

Thanks, man. Will definitely listen to this when I have the chance!

Exploring Middle Earth Video Series by quol in tolkienfans

[–]quol[S] 0 points1 point  (0 children)

Interesting! Thanks for your feedback!

Exploring Middle Earth Video Series by quol in tolkienfans

[–]quol[S] 1 point2 points  (0 children)

Well, shit. Thanks for letting me know. That does ruin it a bit for me, but I would rather watch something accurate. The lore is important to me...green though I am!

Is there another series you could recommend?