I’ve been posting about this med - diltiazem- as it was a last chance with very little hope of surgery being done (rarely if at all done in UK).
I gave it 16 days and from day 2 it did nothing for my angina, brought on chest tightness at rest and side effects of headaches, flushing (few times though), increased tiredness and the most worrying took me to some very dark places and generally made me feel unwell and “unhappy”.
I rang GP and he said he’s not sure what to do🤨 so I asked do you want me to carry on or go back to amlodipine? I felt I was helping him to come up with solutions 😱. Including suggesting he write back to cardiologist. Unfortunately it’s back to my local hospital and no guarantee of getting back to my old cardiologist who understood my condition. Can’t be referred back to London cardiologist who discharged me after testing which gave a diagnosis. But at least I can stop the diltiazem- need to call pharmacist on how to do this.
So it’s back on the “treadmill” of the NHS referral process, getting a cardiologist who will understand even though I ultimately know need to get back to the London Cardiologist for them to rule in/out surgery even though they have already said to me unlikely anyone will or can do surgery and it probably won’t help that much. But this time it’s a surgeon who needs to consider my case, it’s just the matter of getting a cardiologist To make the referral.
I guess I could be down hearted (if you pardon the pun 😉) about the above that my options are now very limited, but I’ll have a good cry then get on and be practical about doing what I can myself to get this all progressing with the doctors.
I’m not sure it’s sunk in or was I already prepared for it? I just feel I’ve got hoops to jump through but know where this will end up, although appreciate I need to keep an open mind.
i cannot express enough how important the support and advice given by members here has been to me and got me to this position in what is a fairly quick timescale. And also helped me to think about how to face these challenges and potentially a “new life” rather than the one I thought I was going to have.
But If anyone has any further tips and advice, as always most greatly received.
I am so sorry when I read your posts that I have no answers and do not know how to help because I really want to as I see your journey trying to get answers and the right treatment for what seems like a complex condition
I also feel for you as I do know how it feels to keep having to what feels like chasing all the time and sometimes feels like taking one step forward and then 10 back again
I do not blame you and know how it feels to sit and cry but it can be a release getting it all out
One thing about you I sense is despite how you feel you have that fight and determination in you that I feel is going to get you what you need to help improve your situation and we will be here with you to listen in my case even if I do not have the answers
You keep pushing as much as it is draining to do so
I have every faith in you and know you will get the treatment you need even if the road to it has some bumps along the way you are going to get there x
• in reply to
thank you for your kind supportive words and understanding, in some ways it has never mattered what the condition as I’ve always taken support from your posts to other people, I am sure they help people other than the original poster whatever the challenges they face.
I’ve already pulled me socks up and contacted my old cardiologist’s secretary (who’s going to help with getting an appointment) at my local hospital and luckily the cardiologist has kept me on her “watch” list rather than discharge me. I’ve also emailed the secretary of the London cardiologist with an update on my progress so they can look to answer the surgery question once and for all and officially. I won’t hold my breath it will be quick but I’ve done what I think is ok for now.
I no doubt will be posting again when I’m needing a kick up the proverbial to keep at them and keep fighting.
Take care ❤️
• in reply to
Hello
Well you have been busy since your post and well done taking these steps as I said I have every faith in you to keep pushing to get the help you need
Again with not having your condition I have no words to help but I do care and I want to keep letting you know that I am here wanting the best for you and to let you know I read your posts and do relate to the feelings when we are going through a tough time
Thank you for your kind words and you keep posting x
I remember many years ago coming out of an appointment with one of the world experts in vasospastic angina, after being told there were no further medication options, bitting my lip to stop the tears.
I can't quite believe I am into my 11th year living with the ultimate uninvited guest of pain to my life's party.
The Portuguese have the word Saudade. It sort of means the wistful longing of our former Iives and grieving for the loss of the future we thought we were going to have.
The NHS has provided a mixed blessing over the years. From amazing life affirming kindness and compassion to awful care leaving their mark of PTSD.
Some of us don't fit into the system of usual cardiology care. We have to battle to access the care we need to live as well as possible with refractory angina.
Highlights of the best care is the 10 sessions of a Pain Management Programme run by Clinical Psychologists and physiotherapist.
I have been seen the same physiotherapist throughout. She's retiring this year😕
Then there's my Cardiologist who took me on as the hottest potato a few years ago. He's empathetic and listens. I can email him anytime.
Most important is my family my steadfast support of my husband and 3 now grown up children. Oh not forgetting my dog Millie.
Life is different, I have cried a river but there is still joy in my life too.
Acceptance is a hard won process which we may never quite achieve. (It's still work in progress for me)
Some parts of our former lives we may need to let go with grace rather than resentment.
However you may find you discover new, avenues and talents you never thought you had.
I took early ill health retirement.
I successfully applied for a PIP which I was awarded indefinitely.
I volunteer.
I try and learn new skills.
This year I want to learn to sew.
I have learned to meditate, practice Tai Chi, yoga, train a puppy to be a well mannered, gentle, if not daft dog 😁
I grow artichokes, avocados from seed. I am chitting my seed potatoes and getting ready to plant my tomato and other seeds.
It's okay to feel sad, be kind to yourself. You may feel lost for awhile but hopefully with time you'll find your way. You are still you.
Your explanation of saudade rings so true. I cried when I read it. That is such a good explanation of how I feel and I think many of us have had or still have these feelings. But as you have said you really have to find a new way of living and moving forward.
thank you, I need to digest your words, read over a few times and come back to them to let the reality sink in but equally start to look at life anew. This is certainly the hardest bit, I’m not sure it has fully sunk in or I don’t want it to. It might when (or if - just can’t let go of hope yet even though unrealistic) they say surgery is officially ruled out. When they say it clearly or I see it written down maybe then. ❤️
I agree, research into my condition has taken off in recent years.Someone I am sure wants to make a name for themselves.
There are some novel treatments around that have very little research evidence to support their use.
I do wonder why the European Society of Cardiology and NICE etc don't recommend unroofing.
Coronary vasospasms are often associated with myocardial bridges. The unknown question is whether the bridge is an innocent bystander rather than the culprit.
It’s highly unlikely you’ll be applauding me then Milkfairy
Experimental / new techniques - Not at this stage in life anyway and with 2 kids depending on me! I Will have to find another way to promote treatments of MBs.
Agree about finding test subjects, especially because most articles say MBs are more commonly found during autopsies but only a very small percentage on live bodies….
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