I am a newbie here. I have been very poorly for 2 years. All my problems started after I had been for a long walk. My first symptom was awful head tingling which I still continue to have on a daily bases. The sensation seems to get worse when my body temperture rises, especially when I exercise. Fast forward to now, For the last few months I have been back and forth to GP, and A&E on several occasions with chest, arms, jaw , back,neck pain , stomach pain with nausea and palpatations and still having these sensations in head. I also am having pain under my left breast and left ear. ECG's, blood tests, Tropin all normal and chest X-ray. Last week I saw a cardiologist who is saying this could be Microvascular Ischemia, so he started me on Diltiazem 60mg twice daily. I only took 5 of these tabs which made me feel like death and just wanted to lay down most of the day, I have stopped the tabs as I can't stand the side effects thet are causing. The Cardiologist said if they make me worse to stop them for a few days then to restart. I am too scared to take these tabs as they seem to have made me worse. He also said that if I can't tolerate them I will need to be transfered to another cardiologist that specialises in Electro Physiology in the Refractory Angina Clinic. I have also been given GTN which I am taking a lot of to help with the discomfort. I am just si very tired and am finding that laying down is much easier, but as soon as I get up everything is so much worse. I am also getting tingling in my lower legs too. To me everything seems to come hand in hand and is heart related. I also have Hypothyroidism which is being treated. My head is having some really strange movement in it, plus my face gets so very hot, then my heart starts pounding and I feel it in my ears, and chest. I also take BP meds..
Sorry for the rant, but I'm so scared .
Thank you for reading and any advice greatly appreciated.
Take care
Bubba🤮🤮
PS Forgot to say my hands and feet are like ice but, my face is so hot.
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bubbatetley
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Sorry to hear you are going through this, but try not to be scared. It could be anxiety which is causing your symptoms, or making them worse, our minds can do such powerful things to our bodies. I should know I suffer with terrible health anxiety. I get palpitations, chills, sweating, headaches & dizziness. Also like you very cold hands & feet, mine are clammy too. I do practice meditation & breathing techniques, which help a little to calm me down a bit. When we get anxious we take in too much oxygen, which can cause the tingling sensations, etc.
Best wishes & I hope you get to the bottom of it all.
Thank you for reply. Cardiologist saying possible microvascular Ishchemia as my arteries are all clear,, But the medication has made me feel worse. He said if this happens stop the meds and restart in a few days, I'm just so scared , plus I already take BP meds. My head is having strange tingling sensation's which is coming into my face.
I have lived with vasospastic angina for over 10 years. Vasospastic angina is caused by transient constrictions of my coronary arteries, which causes myocardial ischaemia.
My coronary arteries are all clear too.
I also have neurological symptoms of headache, numbness in the left side of my face, jaw, shoulder and left arm with my episodes of chestpain.
I suggest you keep a diary of your symptoms and how you are responding to your medication.
Then go and see your GP and discuss with them your diary and ask to be referred back to a Cardiologist who understands microvascular and vasospastic angina.
Microvascular and vasospastic angina are not well understood by many Cardiologists, which does not help us as a group of patients.
I also suggest you ask for the appropriate tests to determine the cause of your symptoms.
Sometimes it is trial and error finding the best combination of medication that will work best for you as an individual.
Thnx for that link about microvascular angina. It is very informative. One realistic thing it points out is that heart research and the discovery of new aspects of heart function and how to identify/ diagnose is ongoing. Included in this is the fact that MV angina diagnostic tools are still at an experimental stage.
Things have moved on from when the BHF microvascular angina information was produced.
The European Society of Cardiology's 2024 Management of chronic coronary syndromes recommends that there is sufficient evidence to adopt new diagnostic tools into rountine clinical practice.
Microvascular angina along with vasospastic angina are types of angina/ ischaemia non obstructive coronary arteries, ANOCA/INOCA
Functional angiograms to assess how the microvessels and coronary arteries work will be more widely available in the future as a result.
In the UK more centres are already using these diagnostic techniques.
Thanks Milkfairy. I realised this possibility when I couldn’t find the date on the article.
Nevertheless my point still remains that awareness of, research about, and diagnostic and treatment options for cardiovascular disease is ongoing. We are not at the point in time where every “mishap” of the heart is indubitably known.
Even in the area of ECG interpretation there are numerous 2024 articles breaking new ground.
We all have to accept the fact that sometimes the definitive answer for our diseases at any particular point in time may not exist. That’s frustrating, but it’s reality.
Hi, and thank you for reply.... Lymes disease ruled out. I have decided not to take the Heart meds the cardio has given me, as they have made me feel worse... I have not yet been properly diagnosed with Microvascular Ischemia, its just that I have alot of chest, arm, neck and back discomfort. Whats the point off taking these meds until I have a definitive answer?
Many of your symptoms seem similar to Microvascular Angina - Pain in chest, neck, left shoulder and arm. I also have cold hands annd feet which I attribute to one of the 10 different medications I take every day. I sympathise with you but suggest you continue to push for medical assistance as often as possible. One comforting thing about being involved in this support group is that you realise you are not alone. Good luck and try to stay calm and relaxed.
Hi Lotsirb, Thank you so much for the reply. I hope you are ok. May I ask if you had any strange head sensations, like tingling and pins and needles in the head, also in the face and legs? The consultant cardiologist has put me on Heart meds called Diltizem, but I have stopped them as they have made me worse. I am thinking why take heart meds when I have NOT been properly diagnosed. The consultant said if I feel worse to stop the meds for a few days and then restart them, but to be honest I am too scared. I also have Hypothyroidism, and was wondering if it could be Thyroid related?
You are having a terrible time. It is obviously very complex when you have endocrine (thyroid) problems as well as possibly microvascular and constant uncomfortable symtoms. It is probably important to keep within a small circle of doctors who communicate well with each other so you don't end up in endless repeated tests, anxiety, and never the full picture pulled together. Certainly some of your symptoms can be related to anxiety with overbreathing reducing your carbon dioxide levels and causing tingling for instance. But one thing I would ask is, has multiple sclerosis been considered and ruled out? The association of unilateral nerve-type symptoms with exercise/increased temperature and its persistence would suggest this. Best wishes
Hi, Thank you for reply.. I am 66, and MS has been ruled out.
Cardiologist thinking Microvascular Ischemia. He has put me on Dilitizem and they have made me worse, he said if I dont get on with them to stop for a few days and restart, but to be honest I'm too scared.. Whats the point of taking heart meds if I havent been properly dignosed yet?
Hi, im so sorry to here of your illness. This could be a neurological condition. Palpitations etc can be caused by anxiety and pain caused by the symptoms. I take high doses of Gabapentin for a very similar feeling. In my case it feels like pins and prickles all over my skin, every inch. After 5 years it's still undiagnosed. There are some side effects to Gsbapentin and it takes 3 months to work properly. Would it be possible that you could suggest this and try it at a dose of 200mg 3 times a day rising to a higher dose. Low doses don't work as well. Gabapentin blocks neurological pain which yours sounds like. Its very good at what it does.I Hope you get it sorted soon. Take care.
Hi. I can relate..I've had ongoing issues for 2 years now after having a stent fitted to my LAD artery following a number of severe angina attacks. That's the first I knew I had heart issues as well as a hole in my heart (ASD) !I have been diagnosed with vasospastic angina/ prinzmetal angina and I didn't respond well to diltiazem and it has taken a while to get the right medication sorted. I'm now on Invabradine to help slow the heart rate and verapamil 3 x a day. Generally I have good days but recently have been feeling unwell and alot of chest,back and arm pain again.. I do think anxiety doesn't help but then living with a chronic condition is stressful and it's about how I manage it and balance my day and self care.
Hopefully cardiologist will try some different medications for you, we aren't all tolerant to the same drugs but it is trial and error. A good cardiologist will keep on trying till he gets the right combination for you - in my experience !
Try and count the good days and hang on to them rather focus on how rubbish or unwell you feel..I know it's hard to push through that sometimes but it's reassuring to know you are not alone..especially when I see other people's comments on this community which I've just joined as I was having another low patch.
Hi Sugarplum, I hope you are well.. Thank you for the reply.. May I ask did you have tingling sensation in the head and face? I have had this for 2 years , it's so frightening.
I feel very sorry for you, hence I am replyingin the hope that something from my past experience could help you! I also had a brief spell which seemed like death! I put it down to my BP suddenly plummeting. My GP told me to lay of the meds for afew days until Ifelt better again.
Could tell me if you are monitoring your BP during these difficult times? I found that some meds can cause BP changes quite unexpectedly.
Hi, thank you for reply. I don't have a BP machine and dont want to buy one either, they are not reliable and the readings are never correct. I have stopped the Diltiezem as they are making me feel worse. The cardiologist secretary is phoning me tomorrow after speaking to the cardiolgist about the Diltiezem. I don't know what to do?
Thank you for replying, much appreciated. I don't have a BP machine and am too scared to have one.. I am feeling dreadful, and have stopped the Dilitzem for a few days then restart.
Hi, thank you for reply. Only had ECG so, more tests to follow. 2 years ago I had ECG, Angiogram, ultrasound, and stress test, had these tests done in another county, I was told then by the Cardiologit that I have suspected Microvascular Ischemia, and she put me onto
Ranolizine which I could not tolerate. Then I moved to another County where I am now, so the Cardio read my previous tests and went from there. He has put me onto Diltizem which is making my symptoms worse, so I have stopped them as he said, bue he said to start taking them again after a few days, but to be honest I am too scared to take them seeing as I havent been properly Diagnosed. I dont think its right until I have a proper diagnosis?
I was sick and having all kinds of symptoms some like yours, I was having these symptoms for 9 months and all the Dr's that I had seen kept telling me nothing was wrong it was just anxiety this is even including all kinds of tests, going to the ER, and even being admitted and they never found anything until I had a heart attack 9 months later, come to find out I had a 98% blockage in the lad they only found that through a heart Cath which should have been done in the first place....... I would mention this to your Dr about getting one done....I am also on Lisinopril, aspirin, atorvastatin, and plavix.I do take my blood pressure daily, that is something I would definitely suggest. I have the omron wrist monitor that never needs calibration, I have never had any problems with it and have used it for 2 years.......
sorry to hear you’re having a bad time. I had similar symptoms to what you’re describing and I saw a private cardiologist (because the wait on nhs was a joke) I had several tests which showed nothing wrong ecg, echo, blood tests, and then I had an angiogram which showed my main lad and other arteries to be partially blocked. My private cardiologist recommended a by pass but unfortunately I was taken to a&e where I had stents fitted it is 2 months since and I was led to believe everything would be ok, I feel worse now than before I am very breathless all the time and have angina pain frequently.
Thank you for replying Ziggyfan. I am very sorry you are poorly, I hope with each day you get stronger and pain free🌸 may I ask , did you have strange tingling in the head, face and legs?
I have had these sensations for 2 years now, I am definately getting worse with more strange symptoms. For the last few weeks I am getting very hot especially face, but my hands and feet are freezing. The body heat gets worse at night in bed, I have to use a fan. Also I wake up every hour with profuse sweating and urgently need to empty my bladder, this happens all through the night. The back of my head pulsates and then I get very hot. I have rang the Hospital twice for the cardiologist team to ring and stll waiting for a call. Also I have a feeling of movement in the head which moves to the left then right, This is certainly not right to feel so ill, weak and tired. I am usually very fit and go to the gym daily, but now I can't even manage to go to the shops. The Cardiologist started me on Diltizem last week and said if I cant tolerate to stop them and restart in a few days. I took the meds for 3 days and felt like I was dying, not that I know how that feels yet! I am too scared to restart them. Also what is a new symptom is ear pain in the left , I t seems to come hand in hand with all the other strange symptoms that I'm having, at the same time my lower legs from my knees down tingle .
Forgot to say , bad stomach pains and vomiting.🦋🦋🦋🦋
Sorry for the long rant, but I'm pertified I,m going to die or have a stroke.
You are in my thoughts and prayers, God bless and take care
I have fibromyalgia as well as osteoarthritis so I am familiar with pain and weakness in my body but before it was discovered I had blocked arteries I was having episodes of lightheadedness and occasionally losing consciousness as well as pain in my chest (angina). My body struggles to regulate my body temperature so I suppose that is similar. You could mention to cardiologists about an angiogram.
Hi Bubba. I see you have been diagdosed with MS and Lupus? Seems you havd been through hell. Not much advice but are your MS and Lupus under control? If not, your symptoms can be related to them and not your heart. Hope you get help and relieve soon.
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