What is this called?

[paul80]

Thanks for the info. Like i said before, one of the cardiologists at my local hospital is listed on the POTS UK website as being an expert so i hope i get to see him.

Problem is i really don't know how to deal with GPs, and every time i go i feel terrible which makes it hard to argue well when your brain isn't working, which i'm sure you all understand.

I think my best bet is to take some printouts of hard evidence that they can't argue with. The problem is they don't have much time to read so theres only point in bringing the one or two most convincing pieces of evidence.
If any one has any advice on the best ones to bring, that would be great. I was thinking that something that proves it is very common for PWME to have orthostatic intolerance would be good. And the NHS page on POTS is something they can't ignore so i might bring that.

 

[Hip]

Hi, you have POTS (increase of over 30 beats per minute on standing), you also have NMH (POTS and NMH commonly happen together though both of these can also happen alone).

That seems like a good conclusion.

@paul80, you can consider a very simple but often effective treatment that works for both POTS and NMH, and that is salt. You will find this detailed on the POTS websites, but basically it involves increasing your salt intake to 3 to 15 grams of salt daily (different doctors have different ideas about how much salt should be take).

The other simple thing that again works for both POTS ands NMH is increasing water intake (to around 2 liters per day).

It says here that:

To be successful, though, the increased salt intake must be accompanied by a sufficient increase in the intake of water and other fluids (minimum of 2 liters of fluid per day).

So the water and increased salt really need to be taken together.

Licorice root (a supplement you can buy online) is another accessible treatment for both POTS and NMH.

It's possible that these non-prescription treatments may place you in better stead, so that you will feel more capable when visiting your doctor, and asking him for your symptoms to be investigated. I know how hard it is visiting a doctor when you feel very weak and frail, and you are trying to get some help.

NMH is also called:
neurally mediated syncope
neurocardiogenic syncope

 

[Hip]

By the way, does anyone have an understanding of the difference between neurally mediated hypotension and delayed orthostatic hypotension? The Canadian Consensus Criteria lists three types of orthostatic intolerances commonly found in ME/CFS:

• Postural orthostatic tachycardia syndrome (POTS)
• Neurally mediated hypotension (NMH)
• Delayed orthostatic hypotension (OH), also called delayed postural hypotension

Although for some reason the ICC only lists POTS and NMH, but not OH.


I know the difference between orthostatic hypotension and delayed orthostatic hypotension is that in the latter, the drop in blood pressure on standing occurs after 3 minutes, whereas in the former the drop in blood pressure happens more quickly.

But I am not too clear on the difference between NHM and OH.

Is it simply that autonomic nervous system dysfunction drives NMH, but is not involved in OH?

 

[Valentijn]

I think my best bet is to take some printouts of hard evidence that they can't argue with. The problem is they don't have much time to read so theres only point in bringing the one or two most convincing pieces of evidence.

I took the full copy of the CCC primer to my GP, opened to the bit on orthostatic intolerance, and with the relevant bits highlighted, mostly on page 12 I think. The full .pdf is at http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf

She actually read it later, and seemed to have at least skimmed the rest of it as well, since she was much more understanding on future appointments.

 

[paul80]

Thanks for the advice Hip.

Valentijn, that's awesome, thank you. I'll report back on what my doctor says, should be interesting. Probably wont get an appointment for weeks.

 

[ryan31337]

Hi @paul80,

Weeks? You'll be lucky!

If you can afford it perhaps consider seeing the expert privately the first time. I did that with mine, I saw him immediately and had a relaxed, hour long first consultation without tiring delays. It was about £200, everything subsequently is being done on the NHS, including a referral back to him for the results of investigations & any further treatment.

If you can't do that make sure you tell your GP to refer specifically to the named consultant, I believe the NHS gives you the right to do so.

Good luck and in the meantime get started on some electrolyte/salt drinks

 

[paul80]

That's a good idea Ryan, thanks. it'll probably take months on the NHS even if my GP actually gives the refferal. I'll give them a phone tommorow and see how quick it will be.

 

[paul80]

What electrolyte drinks do you buy? or do you just make your own?

 

[ryan31337]

Yeah the good thing about going private is that you can usually self-refer, bypassing the GPs that don't understand, which is good when dealing with something like this.

https://www.amazon.co.uk/dp/B00L7WXIFE - that's the electrolyte mix I have, the small bag goes a long way. I have a couple of servings a day, ~400mg sodium or the equivalent of 1g of salt. That's not much considering most POTS/NMH recommendations are between 3g-10g, but I wanted to go easy as I get orthostatic hypertension too.

 

[PatJ]

What electrolyte drinks do you buy? or do you just make your own?

Purchased electrolyte drinks usually work better than DIY. Avoid anything with lots of sugar, such as sports drinks. Dedicated electrolyte powders have a balance of minerals etc. and can be mixed with water, juice, or other liquids. Ultima Replenisher is what I've been using. You can add salt according your need.

 

[taniaaust1]

Purchased electrolyte drinks usually work better than DIY. Avoid anything with lots of sugar, such as sports drinks. Dedicated electrolyte powders have a balance of minerals etc. and can be mixed with water, juice, or other liquids. Ultima Replenisher is what I've been using. You can add salt according your need.

i second the avoid sports drinks thing though they did work some and really did improve my POTS. The big issue was they almost completely ruined my teeth in less then a year. I went from having great teeth to having 3 holes and the sports drinks had eatten away my tooth enemal to the point the dentist thought I may have to start sleeping with a mouth guard to protect my teeth.

 

[Valentijn]

I've had pretty bad swelling in my lower back both times I tried electrolyte mixes

 

[paul80]

I usually drink coconut water during the night and just tap water with some sea salt dring the day. I don't measure the sea salt though. The coconut water is expensive though so switching to that electrolyte mixture should save me some money.

Looking at the ingredients to the sea salt it actully has very little other minerals, so that's probably why i found the coconut water helped.

I think i usually drink about 3 or 4 litres of water a day, I worked out for myself that get a big worsening of my symptoms if i drink small amounts so i just drink loads and it seems to work.

I think the reason i used the coconut water at night was that i thought i might be be able to drink smaller amouts and so wake up less often.

I've had pretty bad swelling in my lower back both times I tried electrolyte mixes

That's strange, What do you think's causing it?

 

[Valentijn]

That's strange, What do you think's causing it?

Not sure, maybe something in the commercial mixes. I don't think it happened when I was drinking my homemade salt-potassium-sugar mixture. But it's been a while since I just had that, so maybe I should try it again.

If it was just from the commercial mixes, might have been due to other minerals, vitamin C, or whatever else is in it.

 

[paul80]

Tried to get the specialist privately but he's not taking new patients.

I was prepared to try to convince my gp for a referral but surprisingly i just got a letter in with a referral to a cardiologist in july. My gp seemed very sceptical in my last appointment but i guess she must have changed her mind. Maybe she did some research after i seen her.

So i guess i'll see this random cardio and hope for the best. I wonder if he's no good if i'll be able to ask for the specific cardiologist i want to see.

 

[paul80]

Update.

Seen the cardio, seemed nice and open minded. He done a short standing test when i went in and booked me in for a proper one. He said he they don't do tilt tests there and doesn't find them very useful. I gave him my results from my self test and he added them to my records.

He said he would probably try me on fludrocortisone after the test and midodrine if that didn't work. Then he changed his mind and decided to let me try a small dose of FC (half a tablet).

Been on it 2 days now, haven't had any dizziness or head rushes or that draining from head feeling from since hours after starting it. first day i had a big pressure in the front of my head, but that's away now. No other side effects. I haven't tried sitting up for too long as i've been feeling very tired but i'll try and build it up slowly.

So, I'm pretty optimistic about this.

 

[paul80]

Done the standing test and lasted 10 minutes :/
Tachicardia and then my blood pressure plummeted. I now have POTS diagnosis which feels great to prove to my GP that i wasn't talking rubbish. She said POTS was extremely rare.

The fludrocortisone worked for about 5 days then stopped. I upped the dose to 1 pill a day and it worked but then stopped again after about a week. Not sure what's going on but we are just going to keep increasing the dose.