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TOPIC: Diaphragm spasms and high pulse rate

Diaphragm spasms and high pulse rate 1 year 11 months ago #3810

  • Supergran
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I am having episodes from mild to severe of spasms in the diaphragm area and a higher than normal pulse rate of anything from 100 to 140 per min. I have been examined by my GP and dystonia medication does settle it but it keeps coming back. My GP has told me although they are quite sure it is dystonia the problem is so close to my heart it could either cause a 'cardiac event' or become a 'cardiac event'. The emergency GP form NHS 24 sat with me for quite a time until she was sure that the dystonia medication would settle it and she did not need to order an ambulance.

I am quite stressed about this it is very scary when it happens and I live by myself with the worse episodes being at 3am in the morning. My diaphragm at its worse feels like a rubber mat of 2 inch thickness is separating my lungs and heart from the rest of my body. I do deep breathing and this some times helps but I am doubled up and find it hard to straighten up with out severe chest pain.

I am tired and fed up my GP said if it lasts for longer than 5 mins I am to phone 999 and my family are quite concerned. I have nightmares of the previous poor experiences of ambulance staff and they do without a doubt treat you differently when you are on your own than when you have a family member with you. On your own its like you have anxiety problems but if some one else is there to validate your suffering it is then taken more seriously. I have also been told by a member of the ambulance staff that it is debated amongst them as to whether it is an anxiety disorder or panic attack. Not all staff are like that but it is a hit and a miss when you call an ambulance for dystonia as to what walks through your door!

I am rambling now but thank you for taking the time to read this and if anyone has any tips they can share I would be very grateful I feel too unwell to fight with another ambulance crew is the bottom line.

Christine x
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Diaphragm spasms and high pulse rate 1 year 10 months ago #3821

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Christine
Why don't you go back to your GP and explain the problems you have had with ambulance crews in the past refusing to take your dystonia seriously, not knowing what it is, not understanding your issues and treating you like there's nothing wrong with you or you are just overly-anxious.

Then ask your GP to provide you with a letter confirming your diagnosis and setting out clearly and simply the medical concerns that there are regarding this cardiac event risk (with whatever level of detail your GP feels will be helpful/necessary). Have your GP outline in simple terms the circumstances in which you have been advised by him/her to dial 999 and request an emergency response. Your GP can also include any other pertinent practical or medical information or instructions that he/she feels may be helpful to an ambulance crew attending you. It would be helpful too if your GP would confirm that the symptoms you have are not just a panic attack and you are not merely suffering from a panic disorder. If you do then find yourself having to dial 999 in these specific circumstances, you can simply show the GP letter to the crew so that they know you aren't a hypochondriac time-waster and so that they actually understand what the medical issue and the medical risks are.

I can't see any reason why a decent GP would have any issue with providing you with such a letter if they have specifically told you to dial 999 in these circumstances. I don't see why they would levy a charge for such a letter but if there was one, it should be minimal.
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Diaphragm spasms and high pulse rate 1 year 10 months ago #3822

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My address is red flagged with the ambulance service and now when I have a bad or an exceptionally good experience I confess that I write a letter and complain/complement. The diaphragm business came to a head with a base line pulse rate over 140 and i was transported to hospital with blue lights and sirens I am seeing the neurologist on weds to see what he has to say. Hospital staff are not experts they can get your breathing and heart rate settled back down but they can not keep it down. Its very much an elastoplast situation.

In terms of ambulance staff they are human and with some people a uniform does give them a bit of power that is not always used appropriately and you are never going to change that all you can do is complain. It is just exceptionally frightening that they literally have your life in their hands before you find out who is up to the job of getting you to hospital safely and who is not and by then it is too late and one is frankly in no fit state to do anything about it and thats why all you can do is complain. The majority of paramedics that visit me for the first time usually google the condition and watch a video on U Tube! Shocking though it is that is the training that paramedics have for dystonia.

Hope all is well with you, We just have to keep going dont we!

Christine x
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