prinzmetals angina
Posted , 96 users are following.
I have had prinzmetal's angina for over 7 years. Information about prinzmetal's says that pain occurs at night while in bed. Well not in my case. I get angina pain in the day time as well at night. Does anyone out there get pain in the day as I do ? I get pain at anytime, when it is cold or when I feel stressed and sometimes activity brings it on. I am taking a lot of medication for it , can't be without the nitro spray. Am having a lot of bad days lately hope to have a few good days soon.
Because prinzmetals is rare I feel a bit lonely having it , even though there are people who have the usual angina. It would be good to talk to somebody who prinzmetals.
14 likes, 699 replies
spotty1978 Guest
Posted
Hello All.
Been a long time since I last posted. I have now had to give my job up and basically I've been written off and I'm only 39.
Suffered really bad this winter and was recently in hospital due to excess spasms, had my meds increased and ive now been given Buetrans patches for pain relief.
Question to uk peeps has anyone successfully claimed PIP? I've been put in the ESA support group but scored 0 points with PIP....Proper nightmare.
andrew22534 spotty1978
Posted
spotty1978 andrew22534
Posted
Cheers Andrew I will take a look, what makes me laugh is on Atos website it says people with unstable angina don't get called for a medical.....I did and scored 0 points.
Proper fed up with it all to be honest this PM has taken over my life now and it just so grinds you down.
andrew22534 spotty1978
Posted
Yeah it does, but with planning and a bit of thought you can get yourself to a coping point, "only" took me 5 years... to get to a coping well point... don't know haven't managed that yet...…….. and that's to get back to having some sort of new life,,,, but, I aint giving up.... just some days need to admit I need a lot more rest than I want to have. some days a bit of hobby happens some days I am almost active,,, other well hey that's planning for the active days... Good luck and all good wishes, keep in touch , If I can help in some way I will..
Bishpick1 spotty1978
Posted
I'm in the USA and I couldn't get disability. I sent them a six page letter and told the to stop trying to get me to describe symptoms of a disease I don't have. It worked... I got SSI.
deborah51700 Guest
Posted
Dear Guest and others that might benefit,
I do suffer angina from PM during the day some times as well. I can be triggered by circumstance, syrong emotional things happening, cold weather, if something affects my breathing, yes I understand how it is hard on you. I have learned that with every challenge in my life, that I have to sit down and try to find a way to turn my negative situations into positives.
So, insyead of feeling guilty that I am going through each attack and cant help others like normal, I remind myself that I spent a lifetime helping others and I remember something my doctor said to me as I was crying , saying" I am not strong like OI use to be, I cant help out anyone anymore, I feel useless, I cant be the woman he needs me to be right now," and as the tears ate rolling down my face, he smiles at me and says " you did your time, you spent years rushing to be everything for everybody, its ok if your tired, but you need to realize that this is not the end, This is just time for you now" " Timy for you to take it easy for a while and there is nothing wrong with that. You have earned it"
So, everyday, deep breathe in and start it as a brand new day...full of promise and light. We cant control it. We have to weather the storms. Deal with the paon but everyday be glad you have another day. I am 50 years old still have a young child with ADHD, I have to try to handle the prinzmetal one way or another. I choose to be stubborn and I have chosen to try and see only the positive. Its hard but your not alone.
I strongly believe that we attract positive life by trying to be more positive which in turn can bring about positive changes in our health, mind and body.
Law of Attraction.
Someone else posted a question about meds and I myself have gone through numerous changes but now am on Nitropatch ,6 every night for 12 hours..on in day if needed. I carry with me nitrospay at all times, I take Atenolol because I also have problems with my heart feeling like it is going to jump out of me chest, the palpitations are controlled by Atenolol and I am also on 2 fluid pills hydrochlorithiazide 25mg & Furisemide 20mg. I am also on "filedipine" slow release. I believe that is what they are all called. Unfortunately, my eyesight comes and goes and gets all blurry sometimes. Possibly due to me also having serious diabetes type 2 requiring insulin so also on 2 different insulins. Many other health problems also with many other meds needed. I basically lose half my life being bedridden due to weakness or catching whatever illness is going around since my immune system is shot. My arthritis is a pain and the fibromyalgia and Chronic Fatigue is painful and tiring. 😁 but I am still smiling. It is amazing how much better you can fight through all these things and still learn to smile.
My message today is give yourself a hug, male and female, cut yourself some slack and realize we didnt get sick overnight so we cant heal ourselves over night. But we can tale a brighter approach to it all and start smiling and fighting back. Take back your life and be proud of what you can do each day. Make your priority lists reasonable ones so you can always cross things off. Pick your chin up, put your big girl panties on, Suck it up and just do it!!! Someone else is always worse than ourselves. Get answers for what you need to get better. Get proper diagnosis. But just keep your chin up.
Love and hugs to you all. Chin up!!??😁WE GOT THIS!!
Bishpick1 Guest
Posted
To All,
I have a strange question to ask. Does everyone have a secondary condition such as diabetes, limphatic disorders like CLL or lymphocytosis? I have a reason for asking, it seems odd to me that a group of people who all have a rare heart disease are also a group of people who have similar comorbidities. And as far as I can tell it's not documented. I just want to find out if it's just an impression or not.
andrew22534 Bishpick1
Posted
deborah51700 Bishpick1
Posted
No_More_Scuba Bishpick1
Posted
Hi all,
it's been a while since I wrote but have been reading everyone's post.
Bish... if it helps yes I have a relatively rare long term (for life), disorder too. It's called Primary Hemochromatosis which is a genetic disorder causing a form of iron called "Ferratin" to build up in the body and can only be removed by regular blood letting. I have a pint of blood taken every six to eight weeks so that my ferretin leves remain below 50. When above that level my body has no natural way to get rid of the extra iron. It stores it in body tissues, especially the liver, heart, and pancreas. The extra iron can damage organs. Without treatment, it can cause organs to fail. The iron also crystalises out in my joints, hence my arthritis. I always know when my ferratin is high because all my bones ache especially my hip which has an historical impact damage, and I become very lethargic feel weak and suffer from stamach and bowl pain.
I have tried to talk to my doc and my cardio about any possible corralation between my PM and my Hemochromatosis but they just dismiss it out of hand. I am sure there is a connection.
As to how I am coping now and my medication I am now back on Amlodapine 10mgs per day and a nitro patch which I now wear in the day (12 hours only), after months of not being able to sleep because of the headaches caused by the patch. I can suffer them in the day and when I have the patch, I am at the moment spasm free. Just recently I have been waking with pain each night/morning around 4/5 am and need the nitro spray. Then when I wake properly I have to quickly put my patch on and try not to think about the day, breathe carefully, lie on my right side and attempt to clear my mind. If I can manage that for 30 mins the patch takes over and there are no spasms until the following night/morning; but the slightest noise, even the cat crying to be fed etc will start the spasms.
I have holidayed twice since my diagnosis last September and both times my feet have almost doubled in size. Not sure if its the heat or the plane or just the change.
I also now and then have to take pain meds when my ferratin is high and my hip (one week before my PM diagnosis I was due for a hip op... my cardio said NO WAY), becomes really painfull I can't cope with both the hip and the headaches, (like migraines in my temples and the sides and back of my neck).
Well Bish, I hope that helps and for all others, I'm still here, still trying to find a way to live with this and still have a half decent life.
Take care all, Mike.
samuels Bishpick1
Posted
I have type 2 diabetes, diet controlled, however this didn't come along until 2 years ago, I have severe sleep apnea and extremely weird lipids profile.
samuels No_More_Scuba
Posted
I think there is, I'm the opposite, I have extremely low iron and had to have iron infusions, well one, as I had a severe reaction to it and it recreated my chest pain during the infusion, quickly cleared up by GTN that time, that was ordered by my cardiologist, the iron infusion.
samuels Bishpick1
Posted
I came across some reading the other week in regards to people who have high cholesterol are more prone to getting P M angina, here's what a cardiologist told me, the cholesterol circulating around in the body, when in the endothelium the cholesterol is absorbing/eating the nitric oxide and when our body doesn't produce that, I' assuming produced in the endothelium, the vessels and arteries go into spasms, does that sound a feasible explanation to you ?
Bishpick1
Posted
This is interesting, I wonder how many of these secondary disorders can change the serum/soluble calcium balance? I love doing research🙂. I let y'all know if this can move from idea to postulate.
samuels Bishpick1
Posted
My calcium levels are normal, however, red blood cells, CK/CKMB and white blood cells come back generally abnormal majority of the time, so I am informed, tests run, scans and x rays done nothing found to be of root cause, as I said low iron, extremely low iron, troponins go out of whack every now and then, they spike then return to negative values < 15, never 0, I usually sit between 5-8 on the troponin side of things.
Cholesterol, well what can I say, nothing is of assistance in that department, according to original cardiologist it's hereditary and no one can make sense of it, the lipids, it's been far and wide worldwide for interpretation but no success as of yet.
spotty1978 samuels
Posted
samuels spotty1978
Posted
Exactly the same as me, but I don't have the thyroid problems or kidney stones, I do have abnormal kidney function according to blood tests and a few other things like white blood cells, red blood cells, off to see haematology in a couple of weeks to find out what's going on.
kim93394 Bishpick1
Posted
Hi Bishpick1 ,
I know that you have sent this 12 months ago but ive only just joined and thought id reply. I myself do have secondary conditions. I have Type 1 diabetes, Under active thyroid ( Hashimotos Disease) and Medullery Sponge Kidneys, (Cacchi-Ricci Disease). SOo lucky me have got 2 apparently rare diseases.