Meet the Other Phone. A phone that grows with your child.

Meet the Other Phone.
A phone that grows with your child.

Buy now

Please or to access all these features

General health

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

What is wrong with me?!

62 replies

3ofus3 · 02/10/2023 20:46

I've posted here before quite a while ago. But here I am again.
I was wondering if anyone has ever suffered like this before and had a good outcome. Basically:

*9/10 times when I stand up I go dizzy (have been dizzy just sat down but not as often)
*Headaches once week. That literally wipe me out for days
*Ill feel weak for at least half a week

Has anyone else ever had this before? The scary thing is I've started getting tingly/numbness feeling in my right leg and foot. And waking up with the same feeling in my right arm. Also having muscle twitches (not really bad but I can see the muscle twitching when I look). No one has took me seriously until these new symptoms have started. I am now waiting an appointment with a neurologist. I can't bare feeling like this anymore. I have a 10YO and a 1YO. It's exhausting being happy mummy all day when I just want to be in bed all day everyday. It's been going on now for quite a few years. Even worse after having my second baby. Anyone?!

OP posts:
SwordBilledHummingbird · 04/10/2023 19:56

My first thought was also POTS. You can do a general test for it yourself, it's not diagnostic but will indicate whether or not it's worth pursuing a referral to Cardiology.

Lie down for 5-10 minutes. Nice and calm and relaxed, no speaking! Then take your pulse to work out your heart rate (beats per minute - BPM). Then stand up. Stand still, no jiggling or moving around. After 10 minutes take your pulse again to calculate your BPM.

Then work out the difference between the two. If your standing heart rate is more than 20 BPM more than your resting heart rate that indicates some form of dysautonomia, if it's more 30 BPM more that indicates POTS. Only a tilt table test is completely diagnostic but my results doing this were very similar to my tilt test.

It's best to do the test early in the morning as orthostatic intolerance can get better or even completely resolve over the course of the day, but that doesn't mean you don't have POTS. I also wouldn't recommend doing it if you've had alcohol the night before. It might not matter for people without POTS but any amount of alcohol sends my orthostatic intolerance into the stratosphere, even the next morning. So it can really impact results.

Another thing, do NOT rely on a Fitbit or similar to measure your heart rate. They're fine when your heart rate is fairly stable but can't keep up with the rapid changes that happen with POTS upon standing. If you have a chest band monitor then use that but if not just manually take your pulse to calculate BPM. If I stand up my heart rate can instantly shoot up to 130 or thereabouts from a resting heart rate of 55 BPM, which is accurately captured by my chest monitor, but my Fitbit will be happily sat on my wrist telling my heart rate is only 77 BPM.

If your test indicates that POTS/dysautonomia is a possibility then get yourself back to your GP and ask for a Cardiology referral. In my area the waiting time is 17 months so you should really get yourself on the list ASAP if needed. I actually ended up going private as I was so unwell with it. I finally get to see my cardiologist on the NHS in December (same cardiologist!), at which point he'll probably be ready to discharge me but at least I should get my medication on the NHS.

POTS isn't curable but there's a lot you can do to manage it. Medication can help but won't be enough on it's own, the others things are physiotherapy (huge help for me, including following the Levine Protocol), and lifestyle changes such as pacing, as well as increasing salt intake and wearing compression stockings. I've been incredibly unwell with it but the sooner you get a diagnosis the better.

Good luck!

3ofus3 · 04/10/2023 20:04

SwordBilledHummingbird · 04/10/2023 19:56

My first thought was also POTS. You can do a general test for it yourself, it's not diagnostic but will indicate whether or not it's worth pursuing a referral to Cardiology.

Lie down for 5-10 minutes. Nice and calm and relaxed, no speaking! Then take your pulse to work out your heart rate (beats per minute - BPM). Then stand up. Stand still, no jiggling or moving around. After 10 minutes take your pulse again to calculate your BPM.

Then work out the difference between the two. If your standing heart rate is more than 20 BPM more than your resting heart rate that indicates some form of dysautonomia, if it's more 30 BPM more that indicates POTS. Only a tilt table test is completely diagnostic but my results doing this were very similar to my tilt test.

It's best to do the test early in the morning as orthostatic intolerance can get better or even completely resolve over the course of the day, but that doesn't mean you don't have POTS. I also wouldn't recommend doing it if you've had alcohol the night before. It might not matter for people without POTS but any amount of alcohol sends my orthostatic intolerance into the stratosphere, even the next morning. So it can really impact results.

Another thing, do NOT rely on a Fitbit or similar to measure your heart rate. They're fine when your heart rate is fairly stable but can't keep up with the rapid changes that happen with POTS upon standing. If you have a chest band monitor then use that but if not just manually take your pulse to calculate BPM. If I stand up my heart rate can instantly shoot up to 130 or thereabouts from a resting heart rate of 55 BPM, which is accurately captured by my chest monitor, but my Fitbit will be happily sat on my wrist telling my heart rate is only 77 BPM.

If your test indicates that POTS/dysautonomia is a possibility then get yourself back to your GP and ask for a Cardiology referral. In my area the waiting time is 17 months so you should really get yourself on the list ASAP if needed. I actually ended up going private as I was so unwell with it. I finally get to see my cardiologist on the NHS in December (same cardiologist!), at which point he'll probably be ready to discharge me but at least I should get my medication on the NHS.

POTS isn't curable but there's a lot you can do to manage it. Medication can help but won't be enough on it's own, the others things are physiotherapy (huge help for me, including following the Levine Protocol), and lifestyle changes such as pacing, as well as increasing salt intake and wearing compression stockings. I've been incredibly unwell with it but the sooner you get a diagnosis the better.

Good luck!

Thanks so much for your message.
I'm so happy for you that you are being seen to! Was it a relief to have a diagnosis?
I have a wrist band blood pressure machine. Would this work accurately if I do the home test for pots ?

OP posts:
3ofus3 · 04/10/2023 20:22

So I did my blood pressure lay down and standing..

What is wrong with me?!
What is wrong with me?!
OP posts:
SwordBilledHummingbird · 04/10/2023 20:59

Blood pressure monitor is a good way to measure your heart rate. Your figures their would definitely be consistent with a POTS diagnosis. Do it again but stand for 10 minutes in the morning and report back!

Your blood pressure is on the low side, did you realise? POTS does tend to be associated with low blood pressure but it will rise with prolonged standing as your body desperately tries to get blood back up to your head. A lot of people think that POTS is defined by a blood pressure drop on standing but it's actually unstable blood pressure that indicates POTS and the diagnosis is based on heart rate increase without a sustained drop in blood pressure when a tilt test is done.

I'm not a medic anyway, so I obviously can't say that it is POTS, but POTS is very under diagnosed and it's so easy to test for that it really needs considering for unexplained fatigue in combination with the other symptoms you're experiencing. If you want to learn more about POTS look up Dr Sanjay Gupta on YouTube, he's my cardiologist and has made some very accessible videos about POTS. And after all this, if it's not POTS at least you've ruled something out and can move onto looking for another explanation.

And yes, I've suffered for years and it's such a relief to finally have a diagnosis and a treatment plan.

I'm off to bed now but tag me if I can help at all.

TheBushOfYourGarden · 05/10/2023 09:04

How old are you op? Could be perimenopause

3ofus3 · 05/10/2023 10:34

TheBushOfYourGarden · 05/10/2023 09:04

How old are you op? Could be perimenopause

OP posts:
3ofus3 · 06/10/2023 18:12

Leg and foot have been really tingly/numb for past 2 days and started making its way up to my thigh now which is new. Spoke to my doctors they are going to write a letter to the hospital to hurry it along for my neurologist appointment. I spoke to neurologist receptionist myself and she said I was next to be seen on list but still showing as "up to 10 weeks" 🫣 I can't wait that long.
Thing is, how long/bad do I let this get before my appointment?

OP posts:
3ofus3 · 06/10/2023 18:13

SwordBilledHummingbird · 04/10/2023 20:59

Blood pressure monitor is a good way to measure your heart rate. Your figures their would definitely be consistent with a POTS diagnosis. Do it again but stand for 10 minutes in the morning and report back!

Your blood pressure is on the low side, did you realise? POTS does tend to be associated with low blood pressure but it will rise with prolonged standing as your body desperately tries to get blood back up to your head. A lot of people think that POTS is defined by a blood pressure drop on standing but it's actually unstable blood pressure that indicates POTS and the diagnosis is based on heart rate increase without a sustained drop in blood pressure when a tilt test is done.

I'm not a medic anyway, so I obviously can't say that it is POTS, but POTS is very under diagnosed and it's so easy to test for that it really needs considering for unexplained fatigue in combination with the other symptoms you're experiencing. If you want to learn more about POTS look up Dr Sanjay Gupta on YouTube, he's my cardiologist and has made some very accessible videos about POTS. And after all this, if it's not POTS at least you've ruled something out and can move onto looking for another explanation.

And yes, I've suffered for years and it's such a relief to finally have a diagnosis and a treatment plan.

I'm off to bed now but tag me if I can help at all.

My blood pressure has been on the low side for a few years now.
Not managed to do the test properly this morning due to a clingy baby 🫣 will try again tomorrow!
Thank you for your message x

OP posts:
Choconuttolata · 06/10/2023 18:37

I have a lot of similar symptoms due to Long COVID and POTS post-Covid. Pains in my legs, pins and needles in my limbs, lots of neurological type symptoms such as migraines. I am glad they have referred you to neurology to get a specialist opinion.

A good place for information on POTS is the POTS UK website

https://www.potsuk.org/

Under the download leaflets about POTS button they have a guide for GP's which you can download and print for them.

I did the NASA lean test at home using the guide I link to below for clinicians, which also gave me some observations of HR, BP etc to show to doctors. The GP can use this guide too.

https://www.google.com/url?sa=t&source=web&rct=j&opi=89978449&url=solvecfs.org/wp-content/uploads/2021/07/10-Minute-NASA-Lean-Test-Clinicians.pdf&ved=2ahUKEwjg_qL6-eGBAxXKQEEAHWD9AdoQFnoECDAQAQ&usg=AOvVaw0i6dbMu80CjJQ-dSdzDohg

Home - PoTS UK

https://www.potsuk.org

3ofus3 · 07/12/2023 13:09

Update - I finally have an appointment with neurologist in Jan!! I feel so positive that I am getting somewhere!

OP posts:
hereforit3 · 15/07/2024 21:52

Another update incase anyone ends up in the same boat?!
MRI "normal" Neurologist wants to label as migraines but won't give treatment until I see a cardiologist for a POTS test.
I'm a little confused. How would this be migraines when my rate shoots up to 120 after walking into another room and I'm out of breath?
I feel I won't ever have answers

hereforit3 · 15/07/2024 21:53

hereforit3 · 15/07/2024 21:52

Another update incase anyone ends up in the same boat?!
MRI "normal" Neurologist wants to label as migraines but won't give treatment until I see a cardiologist for a POTS test.
I'm a little confused. How would this be migraines when my rate shoots up to 120 after walking into another room and I'm out of breath?
I feel I won't ever have answers

Heart rate *

New posts on this thread. Refresh page