POTS

[kiwiian]

hey all does anyone have experience of POTS which I have just been diagnosed with.Its correct title is (here goes)POSTURAL ORTHASTIC TACHYCARDIA SYNDROME its not common but does affect some type 1s of which I am one.was wondering about medication really.whats best etc .Also as a footnote if any of you ever feel dizzy when standing or fainting ,short of breath its worth having a tilt table test to find out f you have pots and not just low blood pressure which is what doc was telling me for years.thanks for any help offered ian

 

[catherinecherub]

I found a good explanation here @kiwiian,


Postural Tachycardia Syndrome - Raising Awareness of PoTS
Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition. Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down). Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing.

http://www.potsuk.org
It is worth reading some of the headings, especially the G.P. Guide as this gives some idea of treatments and therapies that may be of use to you..

http://www.potsuk.org/gp_guide

 

[kiwiian]

I found a good explanation here @kiwiian,


Postural Tachycardia Syndrome - Raising Awareness of PoTS
Postural Tachycardia Syndrome (PoTS) can be a life altering and debilitating chronic health condition. Simply standing up can be a challenge for people with PoTS as their body is unable to adjust to gravity. PoTS is characterised by orthostatic intolerance (the development of symptoms when upright that are relieved by lying down). Symptoms include headaches, fatigue, palpitations, sweating, nausea, fainting and dizziness and are associated with an increase in heart rate from the lying to upright position of greater than 30 beats per minute, or a heart rate of greater than 120 beats per minute within 10 minutes of standing.

http://www.potsuk.org
It is worth reading some of the headings, especially the G.P. Guide as this gives some idea of treatments and therapies that may be of use to you..

http://www.potsuk.org/gp_guide

Thank you for your response consultant gave me loads of info .the medication is unlicensed and I was wondering if any one else had experience of this condition.oh the fun of diabetes never ends im now on my second frozen shoulder (takes 5 yrs to go completely) and now this.oh well onwards and upwards

 

[reamarie]

Hello there!! I'm currently pushing for a test for POTS myself!!
I spoke to a GP today who refused to have me tested because it's "such a rare condition" and symptoms don't sound right. He said I have anxiety and ibs.

My heart rate is always above 90 and shoots up towards 130 when standing.
I've spent the last year dealing sick every morning
Some days I can't get out of bed from fatigue
I have terrible brain fog to the point I can't remember events such as my last birthday
I can't sleep at night.
my body just hurts and aches all the time.

I'm looking for any help I can get. Do you have any advice?

 

[Clivethedrive]

Hello there!! I'm currently pushing for a test for POTS myself!!
I spoke to a GP today who refused to have me tested because it's "such a rare condition" and symptoms don't sound right. He said I have anxiety and ibs.

My heart rate is always above 90 and shoots up towards 130 when standing.
I've spent the last year dealing sick every morning
Some days I can't get out of bed from fatigue
I have terrible brain fog to the point I can't remember events such as my last birthday
I can't sleep at night.
my body just hurts and aches all the time.

I'm looking for any help I can get. Do you have any advice?

Hello reamarie, sorry to hear your not so good,are you t1 or t2 ? Are you on meds for diabetes?

 

[reamarie]

I'm t1. I've been on novorapid and levimir for the last 7 years or so. I've had diabetes for 9

 

[Clivethedrive]

I'm t1. I've been on novorapid and levimir for the last 7 years or so. I've had diabetes for 9

Sounds to me like you need to see a diabetic consultant reamarie,the symptoms your describing and what your requesting ought to be given you anyway as t1!

 

[kiwiian]

Hello there!! I'm currently pushing for a test for POTS myself!!
I spoke to a GP today who refused to have me tested because it's "such a rare condition" and symptoms don't sound right. He said I have anxiety and ibs.

My heart rate is always above 90 and shoots up towards 130 when standing.
I've spent the last year dealing sick every morning
Some days I can't get out of bed from fatigue
I have terrible brain fog to the point I can't remember events such as my last birthday
I can't sleep at night.
my body just hurts and aches all the time.

I'm looking for any help I can get. Do you have any advice?

Hi reamarie your symptoms do fit pots.I too had trouble getting diagnosed simply ask for a tilt table test even if just to put your mind at rest.Its not expensive like other tests and will give a good indication of pots..I do hope someone listens to you and gives the help you need.All the very best kiwiian By the way I always tell my diabetic specialist about any health concerns and that's how I got my test.you should request an appointment with them.Good luck

 

[reamarie]

Thank you. I though with my doctor refusing to even do a stand test that maybe I was being a little silly pursuing it.
I see a diabetes specialist in the morning so maybe she'll give me some help.

 

[Clivethedrive]

Thank you. I though with my doctor refusing to even do a stand test that maybe I was being a little silly pursuing it.
I see a diabetes specialist in the morning so maybe she'll give me some help.

All the best with your test, well done :)