A medical mystery - sensory changes, vascular dysfunction?, gut changes

[Jonno]

Hello from the UK, specifically Yorkshire. Can anybody relate to the following? I apologise in advance for the far too many words - I don't know how to reduce them!

Over the past 10 years I have suffered intermittently from a disabling disease which usually takes the following course (quick summary!):

• phase 1: a cluster of cardiac events mainly while at rest - chest pain often with transient ST-T ischemic changes to my ECG and usually with elevated blood pressure and pulse, sometimes rhythm changes (consequence of ischemia??), quite often with a transient increase of about 1C in my temperature. These events come with chronic chest etc pain and noticeably include attacks between midnight and 2 a.m.
• phase 2: sensory changes: tingling, pain and unpleasant sensations, in particular in my limbs and often with chest pain, sometimes dizziness, sometimes a weird change in my spatial sense of my body, basically feel entirely horrible and my blood pressure and/or pulse go up and down in correlation with how ill I feel, delayed gastrointestinal transit & gastritis. With luck, I recover after some weeks of this. I will then be well for a period of between one month and four years (Four years! What bliss.).

No medical test has found anything wrong. In the past 10 years I have had 2 angiograms, 3 gastroscopies, a colonoscopy, multiple echocardiograms, a myocardial perfusion scan, multiple pheochromocytoma tests, an MRI scan of my head, a CT scan of chest and abdomen, a PET scan (for neuroendocrine or other tumours), an EEG, blood tests for everything under the sun, all with the result that nothing was wrong. The NHS has been useless at progressing towards a diagnosis but thankfully a nurse whom my wife knows pointed us in the direction of a London consultant and I paid a small fortune for multiple scans and tests he ordered. His conclusion was that my symptoms might be caused by dysautonomia and I am now waiting for a consultation with Prof Mathias. (I asked my GP for a referral to the NHNN in London but was told I couldn't see a London consultant under ordinary procedures as my local CCG (illegally?) requires an "individual funding request", and at this I decided once again to resort to my cheque (American translation "check") book).

I am currently having a miserable time with chest pain and unwellness.  When the chest pain is particularly bad or prolonged, we call an ambulance, basically to be given a troponin test and then kicked out when that is ok. The hospital cardiologist is a lovely man who takes me seriously but seems out of his depth.  He has prescribed amlodipine (calcium channel blocker), GTN patches and metoprolol (beta blocker). My conclusion is that my cardiovascular system suffers from Prinzmetal's angina and/or microvascular angina as a subset of an odd neurological condition that also affects blood pressure and pulse, my gut, and marginally temperature regulation as well as - apparently - my sensory system. But can the disabling symptoms be managed better?

 

[Steven]

I can relate to a lot of what you described, but for me episodes don't come in a two-stage pattern.

I get episodes of chest pains and discomfort. Numerous ECGs have turned up ST elevation and partial right bundle branch block, and ECGs here and there have picked up other features. My blood pressure cuff turns up abnormal beats somewhat frequently. I also came across Prinzmetal's angina and microvascular angina in my search for possible explanations for chest pains and discomfort. I'm seeing my doctor in a few days to get results from a 24-hour Holter monitor. I've had plenty of other tests over the past few years. Australia is also pretty bad when it comes to investigating this sort of stuff and getting a proper diagnosis.

I also get the symptoms you described in your phase two section. (Sense of body position is known as proprioception, in case that helps with finding info on it.)

Have you looked into whether you meet the diagnostic criteria for a specific category of dysautonomia, such as POTS or orthostatic hypotension - as well as having general dysautonomia symptoms? (I meet the diagnostic criteria for POTS.)

Various people on here have brought up chest pains but, from what I've read, they typically don't get satisfactory answers about why it happens, or how to prevent it or treat it. You can type chest pain in the search box at the top right of the page to see what others have written.

[Bluebonnet08]

I'm sorry you are having these issues.  I always find it interesting when attacks are occurring at certain times like you describe.  Mine are very similar.  Are you eating a heavy meal before bedtime or anything like that?  I've read that heavy meals or high carb meals can trigger POTS episodes by decreasing blood pressure.  I've had to cut my meals in half.  

I had a cardiologist tell me that chest pain doesn't always mean heart pain... it could be the stomach or even a diaphragm that is having spasms.  

It sounds really encouraging that your events have improved for one month and even four years!  Could it possibly be a severe allergy to something (food, medication, otherwise)?  I would keep a careful journal of what you are eating and when the events are occurring.. maybe you are having a bad reaction?  Just a thought.