Is this a typical crash feeling?

[Jemima37]

Panick attacks + ME is not a good combination, treatment of Panic disorder and agoraphobia is pretty much straightforward nowdays, I don´t want to keep pushing you but you should consider going to a doctor and treat it, you are going to feel much better.
All the best.

Hello

I don't suffer from panic disorder, I have general anxiety disorder since I was attacked in 2012. I have been on medication that I'm now slowly weaning off and I have re started therapy this year. So I am seeking support with that side of things.

My agoraphobia is purely due to my health, feeling so unwell has re triggered the agoraphobia but in a different way this time. It's purely due to feeling too unwell to go out. But I do a few times a week with hubby and the children on my less fatigued days.

Julie

 

[ja21ne]

Hi Julie

You are going through a tough time. There is a lot to think about. None of this is straight forward or easy.

One definition of POTS is heart rate going from lying to standing , should be 28 beats or more.

My heart rate is 60 lying down for a while. Then can go up to 100 to 120 first thing in the morning. My symptoms are always worse in the morning because blood volume levels seem to drop overnight. Once I have water and salt things gradually improve.

I get symptoms when my heart rate is greater than my aerobic threshold. For me that's about 108 now. It was around 102 when I started getting heart rate symptoms. The drug ivabradine slows the heart very slightly without dropping blood pressure. So it will reduce it to 90 to 100 which is then below my aerobic threshold and it helps me stand up without feeling so ill, and I have been able to build my fitness a bit so the aerobic threshold has gone up a bit, which is good.

One other thing to think about is something called pulse pressure. You will need a blood pressure machine.

Take your blood pressure when you are symptomatic or perhaps when you get up. Make sure you are standing up with your arm supported on a counter top.

You will get systolic and diastolic pressure. E.g. 100 over 60.

100 is the lowest end of normal. Yours might be slightly under that as mine is, and that might indicate low blood volume.

Then take the diastolic pressure away from the systolic pressure.

So 100 take away 60 =40.

40 is the pulse pressure.

I find that if my pulse pressure is 30 to 40 I feel reasonable standing up.

If it is Around 25 I have some symptoms.

If it is below 20 I am very symptomatic and might be sweating for instance and feeling very rough.

Knowing the pulse pressure when you have symptoms might give you a clue as to what is happening.

If I have low pulse pressure, I know I need to lie down and take salt and water on board.

Are you aware that you need to drink a reasonable amount of water quite quickly to boost blood volume. No sipping. You need to give the body more than it needs at one go so the extra goes into the blood stream. Rather than sipping water constantly which can reduce electrolytes during the day, you might be better downing a large glass or two or two at one go and then leaving it a couple of hours.

Also to balance the salt I try to eat some lo salt which is basically potassium , to balance out the sodium a bit. You need both sodium and potassium to feel ok. If you are taking on board extra sodium, then you will need to think about potassium intake as well.

I have improved in my functionality over the past 4 or 5 years with pots, and especially when I got onto ivabradine. Before that I tried herbal drugs which did help somewhat. I am hoping to come off ivabradine soon as my symptoms are somewhat decreasing. There is hope.

I apologise for the long post. I hope something here helps.

 

[Jemima37]

Hi Julie

You are going through a tough time. There is a lot to think about. None of this is straight forward or easy.

One definition of POTS is heart rate going from lying to standing , should be 28 beats or more.

My heart rate is 60 lying down for a while. Then can go up to 100 to 120 first thing in the morning. My symptoms are always worse in the morning because blood volume levels seem to drop overnight. Once I have water and salt things gradually improve.

I get symptoms when my heart rate is greater than my aerobic threshold. For me that's about 108 now. It was around 102 when I started getting heart rate symptoms. The drug ivabradine slows the heart very slightly without dropping blood pressure. So it will reduce it to 90 to 100 which is then below my aerobic threshold and it helps me stand up without feeling so ill, and I have been able to build my fitness a bit so the aerobic threshold has gone up a bit, which is good.

One other thing to think about is something called pulse pressure. You will need a blood pressure machine.

Take your blood pressure when you are symptomatic or perhaps when you get up. Make sure you are standing up with your arm supported on a counter top.

You will get systolic and diastolic pressure. E.g. 100 over 60.

100 is the lowest end of normal. Yours might be slightly under that as mine is, and that might indicate low blood volume.

Then take the diastolic pressure away from the systolic pressure.

So 100 take away 60 =40.

40 is the pulse pressure.

I find that if my pulse pressure is 30 to 40 I feel reasonable standing up.

If it is Around 25 I have some symptoms.

If it is below 20 I am very symptomatic and might be sweating for instance and feeling very rough.

Knowing the pulse pressure when you have symptoms might give you a clue as to what is happening.

If I have low pulse pressure, I know I need to lie down and take salt and water on board.

Are you aware that you need to drink a reasonable amount of water quite quickly to boost blood volume. No sipping. You need to give the body more than it needs at one go so the extra goes into the blood stream. Rather than sipping water constantly which can reduce electrolytes during the day, you might be better downing a large glass or two or two at one go and then leaving it a couple of hours.

Also to balance the salt I try to eat some lo salt which is basically potassium , to balance out the sodium a bit. You need both sodium and potassium to feel ok. If you are taking on board extra sodium, then you will need to think about potassium intake as well.

I have improved in my functionality over the past 4 or 5 years with pots, and especially when I got onto ivabradine. Before that I tried herbal drugs which did help somewhat. I am hoping to come off ivabradine soon as my symptoms are somewhat decreasing. There is hope.

I apologise for the long post. I hope something here helps.

Greta advice, thank you.

Would you say it sounds like PoTS that I'm coping with?

Daily I've the awful fatigue, heavy body, some days legs are so weak I can't walk around, low blood pressure on standing, fast heart on standing and walking around which seems to hit worse on my fatigue days and sometimes on those crash days with fatigue I feel so faint and weak in my thighs I can't even go downstairs all day. Does that sound like pots? Those crashes are so scary. Over exertion or emotional upset seems to trigger my crashes. I find he crashes scary and they then trigger my anxiety.

I had low sodium and low potsssium on my bloods in November. Only slightly under but I've panicked since and been drinking less as I was scared incase I powered them further. The sodium came up from 129 to 138 and gp was happy. Potsssium was only 3.4 so he wasn't worried 0.1 under. On the day of the text I felt so anxious as I've anxiety and phobia of blood tests hat I drank 7 cups of camomile to calm my nerves and was weeing loads lol! My gp said that would be why my electrolytes dropped so much on the day of the test. Herbal tea plus losing a lot of urine. I've had sodium tested recently and it was 134, range 135-145. Gp told me to increase salt intake as I don't add it to food. I've been adding it to food using pink Himalayan salt and I've increased potsssium rich foods. Bananas, dates, avocado... anything else I should do? Can I drink the pink salt? Is that safe?

On standing my bp dips a lot to about 88/58. Sat down it's about 100/65. I've always got low bp since being unwell with fatigue. Sat down pulse is 65, in first minute of standing it's about 106. At 3 minutes it's around 90 and stays at about that level at 5 and 7 minutes. By 7 minutes i feel all funny in my feet like they feel cold and full and I have to sit down, I don't feel right at all.

I can't seem to stand long periods this last 18 months, often feel woozy walking and need to sit but standing still talking to hubby in the kitchen I get a blood draining to my feet feeling? And have to match on the spot or sit as start to feel I'm sinking through the floor. It's horrible.

Thank you for such a helpful reply.
Julie

 

[ja21ne]

Maybe consider asking for a tilt table test Julie? Might need referral to cardiology first to get it. But you sound a definite candidate for a referral. I can't diagnose but I recognise a lot of your symptoms.

I had a tilt table today as it happens.

It was fine. Much improved equipment from 5 years ago. Hardly realised it was happening before it was all over. No pain. Not too many symptoms as it was short. Only lasted 12 mins and heart rate went from 90 lying down, to 140 standing up. The doctor knew about ME Pots and whilst I didn't learn anything new myself, I realised that in 5 years the medics have increased their knowledge. He said a virus had caused some autonomic nervous system damage and I could have autoantibodies involved. This mirrors the research and I was ecstatic to get a clear result and a doctor who was knowledgable.

Once the tilt table is done they will know what is happening to your blood pressure and heart rate and will advise.

You need a proper diagnosis. You clearly have some real issues with Bp and HR. dont let doctors fob you off with anxiety as the cause. Autonomic dysfunction could be contributing to the anxiety, rather than anxiety causing the heart issues.

I was advised to drink 2.5 litres and take salt on board by the cardiologist today. Need some potassium too of course. Lo salt is what I use for potassium but food is fine too as you are doing. So if you increase water you need more salt. I can't see the argument for reducing water to up your salt levels. It will certainly do that, but what about blood volume. Mine is low and every morning I have low blood pressure and have to drink a lot of water fast and get some salt. And then I have to repeat the next day and the next day...........and on .....and on. I would never reduce water. That would give me symptoms straightaway.

The ivabradine has helped me be more functional and build up my muscles which all helps to return blood to the heart.

If you can't get to a cardiologist, have you done the poor mans tilt table.

There is info on the Invest in ME website on POTs in ME that I found very informative on what pots looks like in ME patients. I think it was written by Dr Bell.

You need a cardiology referral imo.

Meanwhile get salt and potassium into you with plenty of water. Use the blood pressure monitor to reassure yourself you are not getting high bp. Good luck. Julie.

I have improved symptomatically in 5 years partly due to the ivabradine. So much so I am considering staying off it for a while now as I can control with lifestyle salt and water, But it is a fab drug. Tiny dose, 2.5 mg in the morning,improved life dramatically with virtually no side effects. If I need to I will go back on it.

 

[Jemima37]

Maybe consider asking for a tilt table test Julie? Might need referral to cardiology first to get it. But you sound a definite candidate for a referral. I can't diagnose but I recognise a lot of your symptoms.

I had a tilt table today as it happens.

It was fine. Much improved equipment from 5 years ago. Hardly realised it was happening before it was all over. No pain. Not too many symptoms as it was short. Only lasted 12 mins and heart rate went from 90 lying down, to 140 standing up. The doctor knew about ME Pots and whilst I didn't learn anything new myself, I realised that in 5 years the medics have increased their knowledge. He said a virus had caused some autonomic nervous system damage and I could have autoantibodies involved. This mirrors the research and I was ecstatic to get a clear result and a doctor who was knowledgable.

Once the tilt table is done they will know what is happening to your blood pressure and heart rate and will advise.

You need a proper diagnosis. You clearly have some real issues with Bp and HR. dont let doctors fob you off with anxiety as the cause. Autonomic dysfunction could be contributing to the anxiety, rather than anxiety causing the heart issues.

I was advised to drink 2.5 litres and take salt on board by the cardiologist today. Need some potassium too of course. Lo salt is what I use for potassium but food is fine too as you are doing. So if you increase water you need more salt. I can't see the argument for reducing water to up your salt levels. It will certainly do that, but what about blood volume. Mine is low and every morning I have low blood pressure and have to drink a lot of water fast and get some salt. And then I have to repeat the next day and the next day...........and on .....and on. I would never reduce water. That would give me symptoms straightaway.

The ivabradine has helped me be more functional and build up my muscles which all helps to return blood to the heart.

If you can't get to a cardiologist, have you done the poor mans tilt table.

There is info on the Invest in ME website on POTs in ME that I found very informative on what pots looks like in ME patients. I think it was written by Dr Bell.

You need a cardiology referral imo.

Meanwhile get salt and potassium into you with plenty of water. Use the blood pressure monitor to reassure yourself you are not getting high bp. Good luck. Julie.

I have improved symptomatically in 5 years partly due to the ivabradine. So much so I am considering staying off it for a while now as I can control with lifestyle salt and water, But it is a fab drug. Tiny dose, 2.5 mg in the morning,improved life dramatically with virtually no side effects. If I need to I will go back on it.

Thank you, i am sorry for my delay in replying, I hadn't seen my notification of your reply.

I have done the at home test for POTS and I seem to match it somewhat. My pulse seems to rise on standing, I could only get to 7 minutes then I had to sit as I felt blood rushing to my feet feeling and I felt faint and it scared me so I sat down. Standing my pulse on first standing was about 116. It then drops slightly to around 90-95. Resting it's usually about 66-68.

I looked at the Lo Salt, that's good it has potassium in it. Do you use a separate salt to increase your salt? I use himilayan salt daily.

Can you add the salt to your drinking water?

I have increased my water intake, which does worry me as I have had low salt but I am trying to increase the salt intake but only using the pink himilayan salt.

Thank you for replying to me.

Julie

 

[Jenny TipsforME]

@Jemima37 I recognise what you're describing but also label it more autonomic than PEM.

BTW you need to be careful with potassium. Too high or low is dangerous. Potassium and sodium are like a see saw and the balance between them matters.

My POTS doctor emphasises adding ordinary salt to my food (or sodium tablets). Although it costs more I tend to prefer a balanced electrolyte drink like E-lyte.

Compression/support tights might help you.

 

[Jemima37]

@Jemima37 I recognise what you're describing but also label it more autonomic than PEM.

BTW you need to be careful with potassium. Too high or low is dangerous. Potassium and sodium are like a see saw and the balance between them matters.

My POTS doctor emphasises adding ordinary salt to my food (or sodium tablets). Although it costs more I tend to prefer a balanced electrolyte drink like E-lyte.

Compression/support tights might help you.

I had fatigue daily, chronic for 18 months, then on top the crashes. My gp has no idea what to diagnose. I have an underactive thyroid but that's been treated. I feel confused.

How do you get that right balance? My sodium sometimes dips. I add salt to food (Himalayan pink salt) to all 3 meals now as I had a low result last November so I now add it to food and I make sure I eat veg, fruit, seeds, white meat, fish, bananas and avocados almost daily. To try to make sure I get as near to the recommended potassium. My potassium was 0.1 under range last test but gp put it down to me urinating a lot on the day of the test due to nerves, that was the day my sodium was also low. I've been panicked since and tend to worry every symptom is my electrolytes. I had sodium tested last month and it was 134, 0.1 under range. I eat pink salt on my food daily. I worry what I'm doing wrong.