bombsh3ll

16 minutes ago, GasconAlex said:

I knew I could not remain vertical and conscious so perhaps that counts as presyncope. 

Yes, that is presyncope, and describes me to a t. I just wanted to check whether someone with a confirmed CSF leak had it. I think presyncope is probably difficult for people to articulate, if they do not know the medical term & have not actually fainted, they don't necessarily identify that the way they are feeling is how someone feels right before they faint. This is probably why so many people with dysautonomia complain of or are labelled with "fatigue" - yes, they need to lie down, but it is due to cerebral hypoperfusion/presyncope not tiredness. 

Has that improved since your surgery?

B xxx

12 hours ago, Outaker said:

My potassium is 3.4 again at

I am not sure what range your lab is using but in the UK normal range starts at 3.5, so it is low but not dangerously so. Have you got a plan for supplementation & further investigations? 

B xxx

Thanks for popping back Megan, I am really hopeful that a treatable cause will be found for you!

Please do keep us updated!

B xxx

On 7/11/2019 at 10:10 PM, Eraena said:

By the way, does anyone else have trouble taking your BP while standing? My BP machine spits out error after error, and If it does catch it, the pulse pressure is low.

Yes that can happen commonly with automatic BP cuffs if either the BP or HR are abnormal or rapidly changing. 

B xxx

24 minutes ago, jklass44 said:

Honestly, not much. I was a little disappointed. He was honest with me and said that majority of his patients suffer from headaches but that he hasn’t found a way to treat them successfully.

That's a shame, I hope he is still looking!

The triptans are probably not for me, as they cause cerebral vasoconstriction plus my headaches are not migrainous, however I am considering naproxen which is another NSAID like diclofenac (I had to look up what cambia was).

Good luck with the rowing machine! I would really like to try one too without the massive cost of hiring one - 4 weeks at £65 pw is the minimum hire I think - and then find that I just can't use it at all. 

There is a gym near me which has the concept 2, but I know they have to call an ambulance if someone passes out, which would be really embarrassing & they probably wouldn't let me go there again. Still, it might be worth it just for a trial to decide whether to hire one.

B xxx

1 minute ago, Pistol said:

no, I do not do the Valsalva during my exervises since I am still on the lowest resistance setting. I could totally see how advanced rowers might utilize the Valslava to get extra strength for rowing.

Thanks that is really good to know! What type of rowing machine do you have? I know the concept 2 is used by Dr Levine's lab. There is a company near me that hires them for home use.

B xxx

On 7/11/2019 at 9:45 PM, GasconAlex said:

If you are thinking of opening pressure measurement can this be combined with a blood patch?

I had never thought of that, I doubt I would be able to access that but it is a good idea & I will certainly ask when I see the neuroradiologist who specializes in disorders of intracranial pressure & flow next week. 

Can I ask, with a confirmed CSF leak I know you had terrible orthostatic headaches like me, but did you also have the fainting/precyncope/cerebral hypoperfusion?

B xxx

On 7/12/2019 at 11:27 PM, jklass44 said:

 I had my consult with Dr. Raj earlier today

Sorry for taking the thread off topic but WHAT DID HE SAY ABOUT THE HEADACHES????

On 7/13/2019 at 10:37 AM, Pistol said:

The rowing machine seems perfect for me

I have also thought about trying a rowing machine, as it is favoured by Dr Levine with rowers having the biggest strongest hearts etc.. BUT I understand rowing is or can be associated with a mini valsalva at some point in the stroke, & with that being what precipitated my illness I am hesitant. I have never actually used a rowing machine even when I was healthy - do you find yourself performing a valsalva at all whilst rowing, or that it increases lightheadedness at all?

At the moment I just do recumbent bike, & arm weights (not at the same time!)

B xxx

Florinef, other steroids, insulin, furosemide, beta agonists for asthma etc) supplements eg licorice root, & conditions such as excess secretion of cortisol, aldosterone or insulin, or any bowel problem causing diarrhoea for example, can cause low potassium, from my knowledge.

If you are deficient and/or supplementing it is important to have regular blood tests and medical follow up.

Best wishes,

B xxx

Thanks! It is interesting your MRIs showed nothing. I was so convinced I had found the answer to my problems when I learned about the connection between CSF leaks and POTS, especially since I was completely healthy until a forceful Valsalva. 

Can I ask if you ever had your intracranial pressure measured either with LP or intracranial bolt, and if so was it low?

B xxx

On 7/8/2019 at 8:53 PM, Outaker said:

MY theory is the hyperadrenergic state makes us piss out the potassium

I am not sure if it increases urinary excretion, but excess catecholamines certainly drive free potassium into cells, lowering blood concentration. 

When I was working in hospitals, salbutamol which is a beta-2 adrenergic receptor agonist, was routinely used as a treatment to lower blood potassium in patients whose blood potassium was dangerously high. 

B xxx

Yes your pulse pressure is low, & pulse higher than it should be for quiet standing (compared to a healthy person).

This picture is consistent with hypovolaemia & low stroke volume. 

Florinef is one option if you are a responder & can tolerate it. I would ask your doctor before taking a beta blocker as they may make your heart rate number look better, but would likely worsen your symptoms, which is more important. 

Are you on any treatment at the moment?

B xxx

I am so pleased your surgery was a success & hope you continue to improve! Don't be discouraged by your heart rate changes, for one this can be induced in healthy volunteers following bedrest studies, & secondly HR changes are a poor marker of POTS severity & often do not correlate well with symptoms. If you can sit up comfortably, that is a win!

B xxx

9 hours ago, KiminOrlando said:

How do you get prescribed diazepam? They treat it like morphine down here. You can't have it. At least, I can't get it. I have had to cxl MRIs because they wouldn't let me have one. I am hyperpots and all the noise and closeness of an MRI sets me off. 

Yes, it is difficult to get in the UK as well. It has a bad rap because of abuse by a small minority of patients & recreational users, which is a great pity. I had a good cardiologist request my GP to prescribe it after I was ending up in A&E with dangerously high BPs & tachy. 

You may need to see a psychiatrist to get a regular prescription. I know and you know, and they will also know, that you are not mental, but they are very familiar with prescribing meds that act on the autonomic nervous system, often more so than neurologists/cardiologists. If that's what you need to do, just bite the bullet & go because there are so few things that help & it is good to have a tool you can use when needed.

B xxx

I am a doctor although no longer able to work due to POTS. I had not heard of POTS until I got it, and at the time I remember my mind going to the worst possible case scenario of what can cause a person to be unable to stand without fainting. For a while back then I had myself terrified I had MSA. I was 34 at onset so it would have been very unlikely! To make matters worse I tried a few SSRI antidepressants (as I had read they helped with OI, not because I believed I had anxiety or depression), and they made me jerk whilst asleep. Well, then I read about RBD, and you can imagine...

I now know that I don't have that, although I remain very disabled with POTS. Just wanted to say most people with our symptoms have at some point come across MSA and been worried.

MSA is very rare and you are right it would have almost certainly shown itself with motor features by now. 

Have you had an ENT examination with a nasendoscope to check your vocal cords?

B xxx

Mine does, but infection raises the HR in healthy people as well.

B xxx

Thanks both of you!

I was on a low estrogen pill (Mercilon) when I developed POTS, then went up to a standard strength to see if it would help with fluid retention but no, then the ring. It is difficult to tell if there really is a difference between brands. I always took them continuously so as not to have a period. 

This time, although ideally higher dose would be better from a fluid retaining point of view, I am also concerned about the clot risk due to being over 35 and immobile. I think I will start with a lower one for that reason, probably a European one I have found with 20mcg estrogen and 0.5mg norethisterone, called Eve. 

Regarding the implant, I tried the progestin only pill Cerazette which is essentially very similar, & had to stop because joints were becoming lax which had not been before. I have a diagnosis of hypermobile EDS, & upon reading a lot of EDS patients have problems with, and are advised to avoid if possible, progestin-only preparations. It did keep me bleed free though & avoided ovulation hence natural progesterone exposure, which is a diuretic. 

B xxx

On 7/6/2019 at 1:13 PM, firewatcher said:

The best medication for me was Celebrex/celecoxib.

I know the coxibs have fallen out of favour now, at least in the UK, but I wonder if part of the benefit of this was also a bit of fluid retention due to its renal effects, hence increasing blood flow upstairs? I take ibuprofen also for this reason, but I know long term it suppresses renin which is a bit of a catch 22. 

I wish I could find a painkiller that didn't worsen my presyncope. Anything that results in me needing to lie flat defeats the object as just lying down would take the pain away itself.

B xxx

I think I would also increase the time before the resistance. I think the total amount of time spent moving in some way is more important than intensity. Small amounts frequently is more beneficial for circulation & preventing blood clots etc. I am thinking of breaking up my recumbent cycling into several shorter sessions per day for this reason.

B xxx

Hi dannyg,

Thanks for coming back to update. I am sorry you are still struggling with POTS. I'm glad it wasn't cancer. (I know we'd all take that over not being able to stand or walk, but dealing with both is just TOO MUCH!)

I hope you can begin healing now. 

Given there was something obvious, a mass or chronic infection plus weight loss that seemed to trigger your POTS, and that has now been removed, I still think there is some hope for you to improve as you become stronger.

B xxx 

I hate the fact that POTS took away my appetite & the ability to shop & cook, my diet really went downhill compared to when I was healthy. What I can say is I really love my Nutribullet, it is a quick and easy way to get in a bunch of fruit, veggies & some forms of protein, without actually eating them. 

B xxx

On 7/2/2019 at 10:34 PM, Chillyhilly said:

If I’m doing everything I’m supposed to do, there must be something the docs are missing, right? 

Yes, I am still looking for my cause 5 years on and will never give up.

A condition is only idiopathic when all known causes have been ruled out.

B xxx

14 hours ago, toomanyproblems said:

I've had a frank relative polycythemia, or during good times a borderline one, for at least 12 years. There is no combination of my meds, fluids, salt gatorade, etc., that makes me stable for long. I wish I knew what was broken. 

I think natriuretic peptides and urodilatin need to be studied in the context of chronic hypovolaemia. Natriuretic peptides oppose aldosterone and urodilatin increases flow to the kidneys.

There is a lot of research in this area in terms of heart disease and hypertension, where natriuresis is seen as beneficial, but I think we have excessive levels of these. I watched a presentation by someone who treats paediatric POTS, forget the name now but he talked about urodilatin being elevated, hence high renal blood flow and eGFR rates >90, which mine is. 

B xxx

I take a small dose of diazepam. It is definitely physical, not psychological.

B xxx

1 hour ago, haugr said:

Low Flow POTS as Julien Stewart calls it), is that there is too much Angiotensin II in the blood

I am interested in that theory because I have undetectable renin and aldosterone, but have never been able to get AngII measured. I did try losartan though (when my BP was high enough to tolerate it as I was on licorice root) and unfortunately it didn't help me. 

I have never benefited from salt loading, although the licorice root did help for a while.

Technically I am not hyperadrenergic as my catecholamines are in normal range for both supine and standing, although my BP goes up, not down when I stand, & I am very vasoconstricted like the low flow types.

B xxx