Severe Episodes

[Xhale19991]

I have both POTS and CFS.

I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

 

[Sushi]

Do you wear a HR monitor when it is happening? I get something like this (no purple extremities or nausea) but with my HR monitor on I can see it is Afib as my pulse jumps around wildly.

If I were you I'd certainly consider going to the ER by ambulance. If you are in the States, arriving by ambulance gets you immediate attention. Otherwise you might wait a long time.

Best wishes,
Sushi

 

[SOC]

I have both POTS and CFS.

I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

My daughter had episodes exactly like that, although she would only get very slightly blue in the extremities, not very noticeable. But she had the severe nausea, disorientation, coldness, dizziness, high HR and BP.

She was told it was due primarily to low blood volume. She is treated with Florinef and lots of extra fluids and electrolytes. Her Valcyte treatment seemed to help some also, probably by dealing with an infection that was contributing to the problem. She hasn't had an episode like that in 2 or 3 years. Occasionally, she has similar symptoms in a much, much milder form if she forgets to drink extra fluids or take her electrolytes.

 

[Allyson]

POTS is if your pulse rises 30 pbm or more on standing
OI is if your BP drops 20 mmHg or more on standing

though you can have POTs and not test postivie - often the syptoms od not start til later in life


and you need to be rested before the testing starts

proper testing guidelines _ TTT - are listed in the thread below in my signature - about page 5 think

but this is a guide


Ally

 

[Allyson]

I have both POTS and CFS.

I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

yes it does sound like POTS but ER may not know bout it nor know how to treat it uness you have an order for IV therapy form your doctor or physician -many POTsies do that Exhale

meantime drinking lots of coconut water, stay cool and wear compression clothing may help

Ally

 

[Xhale19991]

Do you wear a HR monitor when it is happening? I get something like this (no purple extremities or nausea) but with my HR monitor on I can see it is Afib as my pulse jumps around wildly.

If I were you I'd certainly consider going to the ER by ambulance. If you are in the States, arriving by ambulance gets you immediate attention. Otherwise you might wait a long time.

Best wishes,
Sushi

I test my blood pressure when it happens every 10 minutes or so which shows me my pulse as well. I dont have a HR monitor, what will that show that the BP cuff wont?

 

[Xhale19991]

My daughter had episodes exactly like that, although she would only get very slightly blue in the extremities, not very noticeable. But she had the severe nausea, disorientation, coldness, dizziness, high HR and BP.

She was told it was due primarily to low blood volume. She is treated with Florinef and lots of extra fluids and electrolytes. Her Valcyte treatment seemed to help some also, probably by dealing with an infection that was contributing to the problem. She hasn't had an episode like that in 2 or 3 years. Occasionally, she has similar symptoms in a much, much milder form if she forgets to drink extra fluids or take her electrolytes.

Yea I dont turn into a smurf lol. But my hands and feet do turn a mild bluish color as you describe and are ice cold. All in all these attacks are the worst things I've ever experienced.

Did your daughter have the drop in BP with her POTS or was it just an increase in HR? Me personally.... my BP never gets very low, but my tachycardia is pretty bad. If her BP goes up as mine does during an episode wouldnt the florinef make it worse? I think its an epinephrine/adrenaline issue as well so will be talking to my POTS doc about possibly a beta blocker.

 

[Sushi]

I test my blood pressure when it happens every 10 minutes or so which shows me my pulse as well. I dont have a HR monitor, what will that show that the BP cuff wont?

An HR monitor will show whether there is an arrhythmia--an irregular pattern in your HR.

Sushi

 

[Allyson]

bluish and cold hand and feet is Reynaud's phenomenon @Exhale - very common in EDS

yes I had a 48 hour Holter monitor showed my pulse went up in the supermarket - slow walking nd queueing


you need a proper TTT _ the BP does not show up on one reading

florinef is supposed to help POTS and does for some but there are other meds for POTS too

this may be of interest too....

NY times on POTS

http://www.nytimes.com/2011/10/18/health/18brody.html?_r=0


Ally

 

[SOC]

Yea I dont turn into a smurf lol. But my hands and feet do turn a mild bluish color as you describe and are ice cold. All in all these attacks are the worst things I've ever experienced.

Did your daughter have the drop in BP with her POTS or was it just an increase in HR? Me personally.... my BP never gets very low, but my tachycardia is pretty bad. If her BP goes up as mine does during an episode wouldnt the florinef make it worse? I think its an epinephrine/adrenaline issue as well so will be talking to my POTS doc about possibly a beta blocker.

My daughter's OI is more classic POTS with a BP drop, then she has a BP increase over time. Mine is like yours with a BP increase. I was told that it is likely a compensation my body is trying to make (along with the tachy) for the loss of blood to the brain.

I take Florinef too, at a much higher dose than my daughter. I was told to watch my BP to make sure it didn't get really high, but it never did. In fact, my BP is much more stable with Florinef. I was told that is often the case with cases like mine. Since the BP increase is an effort to move blood to the head, once we have more blood, our bodies don't need to increase the BP anymore. Nevertheless, a good doc will tell you to monitor your BP when first taking Florinef to make sure it doesn't stay too high because you might have a different reason for high BP in which case Florinef could be a problem.

I also take a calcium channel blocker for tachycardia. It did nothing for me before the Florinef, but did lower my HR and make be feel better once I was on the Florinef also.

 

[Xhale19991]

My daughter's OI is more classic POTS with a BP drop, then she has a BP increase over time. Mine is like yours with a BP increase. I was told that it is likely a compensation my body is trying to make (along with the tachy) for the loss of blood to the brain.

I take Florinef too, at a much higher dose than my daughter. I was told to watch my BP to make sure it didn't get really high, but it never did. In fact, my BP is much more stable with Florinef. I was told that is often the case with cases like mine. Since the BP increase is an effort to move blood to the head, once we have more blood, our bodies don't need to increase the BP anymore. Nevertheless, a good doc will tell you to monitor your BP when first taking Florinef to make sure it doesn't stay too high because you might have a different reason for high BP in which case Florinef could be a problem.

I also take a calcium channel blocker for tachycardia. It did nothing for me before the Florinef, but did lower my HR and make be feel better once I was on the Florinef also.

Really interesting SOC.

Gonna ask my POTS doc about this when I see him in a few days. Thanks for sharing.

 

[taniaaust1]

POTS is if your pulse rises 30 pbm or more on standing
OI is if your BP drops 20 mmHg or more on standing

though you can have POTs and not test postivie - often the syptoms od not start til later in life

Ally

Ally OI (orthostatic intollerance) is a general term http://en.wikipedia.org/wiki/Orthostatic_intolerance which is used for any of the conditions which orthostatic intollerance in it.. the term can be used for POTS, NMH (orthostatic hypotension), orthostatic hypertension or any of the other OI condition or just when someone has OI from an unknown cause.

To have POTS one needs to have a positive test. As ally said its an unusual increase of the heart rate of 30beats per min within 10 mins of standing OR an increase to 120 beats per minute within 10 mins or standing.

 

[taniaaust1]

If her BP goes up as mine does during an episode wouldnt the florinef make it worse? I think its an epinephrine/adrenaline issue as well so will be talking to my POTS doc about possibly a beta blocker.

Hi Xhale. I have a lot of dysautonomia issues too (Ive got all the types seen in ME patients). My BP can go up to 180/138 on standing.. (it can jump from 130 up to 170 in only one minute of standing). Im on Florinef as my BP issue is caused by hyperadrenic POTS and the high BP spike is caused in my case by low blood volume (if you get thirsty and need to drink a lot, this is one sign of this). I also thou take Clonidine which is a hypertension drug which works in a different way to the other BP drugs as it helps stop the noradenaline spikes those who have hyperadrenic POTS have which cause the BP to go up.

 

[taniaaust1]

I have both POTS and CFS.

I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home.

yes POTS can cause those symptoms I(the only one im not sure about the freezing cold part.. maybe that is more of a body shock reaction due to it?). With my POTS I get very hot.

I certainly agree POTS is very dreadful, its puts me into hospital at times and Ive had a couple of bags of saline IV at hospital due to it this year as I had a POTS collapse I couldnt recover from. (I was so badly affected by the POTS that my kidneys werent working properly due to dehydration due to the low blood volume etc). To protect my kidneys due to that, the hospital has told me to put my Florinef up quite high if I need to do so.

(If the POTS get too bad you may find that you actually pass completely out or go into seizure activity).

With the BP stuff going on too, this makes you like myself, a far more difficult POTS person for doctors to try to deal with.

 

[Leopardtail]

I have both POTS and CFS.

I recently began to get these severe episodes that are new to me. I got the first one last week. It starts slowly and I can feel my pulse begin to rise. Then my entire body goes freezing cold. I start shaking/shivering violently, my pulse usually hits 130-140bpm, my BP gets to around 160/90, terrible nausea, disoriented, can barely talk, my extremities become extremely cold and turn blue/purple, etc.... It's dreadful.

Can this be POTS related? It's happened to me twice now and am terrified of when another one may strike. Was seriously considering going to the ER as it was occurring but was able to push through it at home. They usually last for around an hour or so and then I feel pretty bad afterwards as I wean out of it. I was reading of some similar experiences from people who have the hyperadergenic form of POTS so was wondering if this could be a possibility. Any advice/help you guys could offer me would be very much appreciated. Thanks for listening.

Xhale,

Have you any idea what your adrenal and thyroid health is like?

The most immediate thing that sprang to mind was the you may have very low blood volume thus causing OI + Tachycardia + Blue extremities.

A high level of Epinephrine/Adrenaline would cause the shaking and quite a few other symptoms but if it's happening in this circumstance may be a correct reaction to low blood volume.

A couple of obvious questions spring to mind:

1. what happens if you try drinking salted water during these episodes?
2. what happens if you eat something sweet?
3. does anything preceed them?

Leo

 

[Allyson]

Ally OI (orthostatic intollerance) is a general term http://en.wikipedia.org/wiki/Orthostatic_intolerance which is used for any of the conditions which orthostatic intollerance in it.. the term can be used for POTS, NMH (orthostatic hypotension), orthostatic hypertension or any of the other OI condition or just when someone has OI from an unknown cause.

To have POTS one needs to have a positive test. As ally said its an unusual increase of the heart rate of 30beats per min within 10 mins of standing OR an increase to 120 beats per minute within 10 mins or standing.

Hi Tania

- thanks but that s not what my specialist told me tho
he says OI is a drop in BP
POTs a rise in heart bea caused by the OI - ie to correct the drop in BP we secrete extra adrenaline and then the heart rate rises as result of that

also you can have POTS and it will not show up on a TTT - my first two tests were negative

He says many people do not show a drop in BP til they are I their 80s

Ally

 

[Leopardtail]

Hi Tania

- thanks but that s not what my specialist told me tho
he says OI is a drop in BP
POTs a rise in heart bea caused by the OI - ie to correct the drop in BP we secrete extra adrenaline and then the heart rate rises as result of that

also you can have POTS and it will not show up on a TTT - my first two tests were negative

He says many people do not show a drop in BP til they are I their 80s

Ally

Yes Ally,

that is very close to being correct. When we stand up (or even sit up) our blood pressure should rise since it's harder to get blood to the brain. Orthostatic Intolerance (OI) means that we can't do that and either our BP drops, or does not rise enough, doctors typically only treat with a marked deficiency (meaning a fall).

POTS means that your heart rate (ie pulse) goes up dramatically in order to try and prevent OI occurring or lesson its effects.

People, Internet Article & Even doctors do often confuse POTS, NMH & OI treating them as one condition when in fact they overlap but are not synonymous.

Leo