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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Feel on the verge of death

Snowdrop

Rebel without a biscuit
Messages
2,933
@Xhale19991

Hi Xhale

I too am so sorry to here that you are feelings so badly and I hope you hang in there and that you find some relief.

I was wondering, have you been to a Dr for any blood work and MRI/cat scans etc to eliminate possible reasons other than ME for your symptoms? It's good you have an appointment with OMI, meanwhile since some of your issues seem to be related to POTS perhaps getting some electrolytes into you would be helpful. Avoid the ones with lots of sugar and sodium. And of course there are threads here for which electrolyte mixes are good. Like this one:

http://forums.phoenixrising.me/index.php?threads/making-your-own-electrolyte-mix.19594/
take care.
SD
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
@Allyson I'm not saying that, I'm just saying I don't have it, it has never been an issue and sometimes you just feel like shit.

Hi Minkey girl not sure what you mean here sorry - do you mean you don't have POTS?
Have you been properly tested it if so ?
It IS a common ME symptom but few get tested for it
You do not know until you have ha a specific test for it
It is one of the few concrete tests we can have that provide some medical evidence for the illness
SO it is a good one to have done too
cheers

ALly
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
@Allyson. I don't have POTS, I have been tested. Yes I know it is common in ME but not everyone has it. Once again, sometimes you just feel like shit.
I stll don't understand what your comment referred to

I was trying to suggest it Xhale as a way of feeling better t times

many people say they don't have POTS but have never had a tilt table test or QSART test

so I wanted to clarify that for X hale as treating POTS can help a lot

one woman said she did not have POTS as "her cardiologist did not think she had it" !!!

someone else said she" did not have the markers for it " - which does not even make sense so there is a lot of ignorance out there
many cardiologists still do not know what it is
and most doctors do not know about it either,



ALly
 

Radio

Senior Member
Messages
453
I would look into finding a good Functional Medicine Doctor, ME doctors could be hard to locate. If you do end up going to the emergency room. Do not ask for any drugs...Drugs are not tested or regulated for mitochondrial toxicity. I would recommend asking for a saline IV drip (for dehydration). Intravenous therapy can increased blood volume and pull you out of a flare.

Intravenous therapy
http://en.wikipedia.org/wiki/Intravenous_therapy
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
On the other hand... though many of us have had bad experiences with ERs, I have had good ones and they gave appropriate (and needed) emergency meds as well as a saline IV. I guess it is Russian roulette with ERs.

Sushi
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
I would look into finding a good Functional Medicine Doctor, ME doctors could be hard to locate. If you do end up going to the emergency room. Do not ask for any drugs...Drugs are not tested or regulated for mitochondrial toxicity. I would recommend asking for a saline IV drip (for dehydration). Intravenous therapy can increased blood volume and pull you out of a flare.

Intravenous therapy
http://en.wikipedia.org/wiki/Intravenous_therapy

would love to try it
I hear there are special IV clinics in the US where you get plain IV one week or fortnight and vtitamin iv the next which works well for some POTsies

meantime I rehydrate with coconut water, lie flat, stay very cool ( cold)) and wear light compression clothing an that usualy helps some.

\Ally
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
would love to try it
I hear there are special IV clinics in the US where you get plain IV one week or fortnight and vtitamin iv the next which works well for some POTsies

meantime I rehydrate with coconut water, lie flat, stay very cool ( cold)) and wear light compression clothing an that usualy helps some.

\Ally

Allyson, most any IV clinic in the States will give IV saline with a doctor's orders. My autonomic doc, Dr. Randy Thompson (the one in the Dysautonomia video Changes) used to leave standing orders for saline IVs for us at the local hospital IV clinic.

Sushi
 
Messages
87
Allyson, most any IV clinic in the States will give IV saline with a doctor's orders. My autonomic doc, Dr. Randy Thompson (the one in the Dysautonomia video Changes) used to leave standing orders for saline IVs for us at the local hospital IV clinic.

Sushi

What about the IV helps you?

Can't you just drink a bunch of water or coconut water and receive the same effect?
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
What about the IV helps you?

Can't you just drink a bunch of water or coconut water and receive the same effect?

IV saline is works better to increase blood volume, so most immediately feel better. But yes, all this is a temporary fix--it doesn't solve the problem!

Sushi
 

Sea

Senior Member
Messages
1,286
Location
NSW Australia
What about the IV helps you?

Can't you just drink a bunch of water or coconut water and receive the same effect?

For those whose bodies 'decide' to keep our blood volume low (hypovolemia, quite common in ME/CFS) drinking more with electrolytes may help a little, a lot or not at all. It all depends on whether your body is effective at using oral hydration to raise blood volume. Many just pee it out again too quickly.

The IV saline will raise blood volume for a longer period, though again individual responses vary and the benefit will range from a day up to a week.
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
yes I think and IV infusion would work quicker and for bit longer - but I would have to get toe a clinic or hospital and that would take extra effort

If I could get one done at hoe I think that would help...I hear they help some and not others though....

A
 

Allyson

Senior Member
Messages
1,684
Location
Australia, Melbourne
For those whose bodies 'decide' to keep our blood volume low (hypovolemia, quite common in ME/CFS) drinking more with electrolytes may help a little, a lot or not at all. It all depends on whether your body is effective at using oral hydration to raise blood volume. Many just pee it out again too quickly.

The IV saline will raise blood volume for a longer period, though again individual responses vary and the benefit will range from a day up to a week.


this sounds like me Sea - Polyura and nocturia...and polydipsia

And my blood volume DID test low indeed

IM vitamin B12 shots stop this - a day after I have one I stop running to the loo constantly and it lasts about 7-9 days

then I sleep better too

Ally