Hi Barbara
I shall look into these options when I get back, the collar and diamox. Some of it will depend on results of the MRI etc….but I am certainly going to try anyway and the home made tilt test.
My cholesteatoma was confirmed on a CT scan, they couldn’t see it through the ear canal as it was a bit of a mess. Had a polyp in there too. Been feeling pressure in this ear a lot lately, and to a lesser extent the other one. I do wonder whether flying, albeit 6 weeks ago, influenced this, but as i am confined to indoors with such hot weather outside day and night(30s by day, low 20s by night) the air conditioning is constantly on. I’m thinking this might be playing a role. By way my CT scan was only of my ears, I saw it and there was nothing of my brain just area around my ear. I am due to have an MRI as it will soon be the one year anniversary of my op, with a view to second look op (often a pearl of cholesterol a can grow back). I’m dreading this seeing as how bad I feel.
One thing I am now very concerned about are my blood pressure readings. They do seem to alter with posture and with each arm, right are more worrying, where I have more symptoms. I have a collection of readings with a narrow pulse pressures under 30, including a few under 20. BP this morning was 105/87 whilst sitting, then standing it was 119/83 which was better, though sitting to standing can vary, and the can systolic drop also. I’m actually less concerned about my heart rate at the moment and more about my BP. Infact I had one reading today of 107/97 whilst seated. A little OCD now, but I think this disease or whatever it is certainly does that to you. Other readings over last 24 hours include 107/82 and 114/82 on seated, the latter in left arm.. On standing 119/83 and 105/79 etc….. I get the feeling that despite having 3 normal ECG’s over the last 6 weeks, though been 4 weeks since last one, that my heart is really under distress, worryingly so. I have had more chest pain over the last week, it comes and goes, but was more intense yesterday like right at the beginning when i arrived in australia 29th dec. My diastolic readings are high, in the 90s, it is like the pressure in the ventricle when the heart is relaxing is to high, therefore reducing cardiac output. Could this therefore be explaining most of my symptoms? The chest pain, the dizziness, the faints, headaches, the freezing hands (especially the right), the bowel and bladder disturbances, the twitching everywhere, but visibly in fingers and toes. I am drinking well, and peeing small volumes often 12-15 times a day). I just wonder whether my whole body is being hypoperfused, coupled with a lack of nutrition (my toenails are going brown!). Do I need an urgent echo? I already think the doctor thinks I’m bonkers, did I mention that he said that word ‘panic’ with reference to this! Typical. Just not sure whether I am sitting on a ticking time bomb here. When gp looked at my list of BPs I think he just saw that my systolic readings were much lower than they had been in surgery, and my diastolic readings not overtly high (except for last 24 hrs which gp hasn’t seen).I think perhaps him not knowing the significance of narrow pressure, I mean readings that low are not usually primary care issues but ones of trauma and a&e, when patients are in shock or close to arresting. My BP machine works as when i was with gp last tuesday we tested it against his machine and it was almost identical. This pain in my chest, the clicking or dislodging sensation I sometimes have, could be the signs. Oh dear, not sure what to do. I’m sure you will agree with my concerns….
By the way did you always get high diastolic readings and narrower pulse pressures when you had chest pain?
Anyway thought I would run it by you.
Thank you
Richard