How did they diagnose the cholesteatoma without a scan – could they see it via the ear canal ? It’s odd that that was the left side of your head, as it’s possibly the left side of your brain accentuating right sided symptoms. I think you are very wise to ask for an MRI.
Your question about intermittency of headaches. I pondered over the intermittency of several of my symptoms (the chest tightness, the sweating, etc) for quite some time and decided that there had to be some dynamic(s) involved. I concluded it was activity related, as many activities whilst upright triggered the symptoms, yet if I was seated whilst I carried out the activity, I wasn’t as bad. Was it that:-
1). Seated my leg muscles needed less blood, so more blood available for rest of my body, or
2). Stood up, my head was more in flexion, seated my head was less in flexion.
I then realised that some jobs, even sat down, caused arrhythmias, high BP, and associated symptoms and these were jobs that included a lot of head movement, arm movement, or bending down. Again I had the same dilema, was it circulation related (increased demand on the heart), or head position related – or both!
In 2004, I carried out a 7 day study of Blood Pressure, Heartrate and various other things, whilst carrying out my daily activities, to try and get to the bottom of it. It merely served to confirm the above findings and not to favour one over the other, both were involved.
I did determine though, that my Pulse Pressure (i.e. Systolic minus Diastolic) was always low when I was having purple legs and leg pain, usually in the late 20’s. I am stunned that your pulse pressure is even less than this (without you going unconscious). Your circulation is certainly compromised, no wonder you feel so ill. Is there an intermediate body over there, like our NHS direct, that you can talk to about the readings ? Your doctor probably thinks you haven’t taken it right (or that your BP monitor is not working properly), or maybe he doesn’t understand the significance of pulse pressure! It’s certainly a strange result.
I have, more recently, revisited the data I collected in my 7 day study and, using a formula to roughly calculate intracranial pressure, it shows that my ICP was not at a constant level but it was often above normal and sometime well above normal. I think that’s what causes the “intermittency” of many symptoms.
Anyway, one aspect I could “manage”, to a degree, was head position which brought improvements, by consciously avoiding jobs that included bending down, leaning forwards, or holding my head in flexion. I’d already stopped doing any action that included turning repetitively from side to side (i.e. ironing) as this brought obvious problems and could trigger throat tightening (a swelling/restriction – bit scary).
In fact, if you do suspect raised intracranial pressure and can get to see a Neuro-Opthalmologist, ask them to look closely for subtle signs of raised intracranial pressure, it will be a bonus. It was a Neuro opthalmologist who spotted the signs of my raised intracranial pressure and started me on Diamox.
The best treatment for my severe occipital headache and morning vertex discomfort (and also the neck-ache and shoulder-ache) has been when I was issued with a Philadelphia Collar and Body Brace. This helped keep my head well positioned and my neck and back aligned – bringing immediate overnight relief (pain level from 9/10 to 3/10) – I couldn’t believe it, I’d suffered terribly for 5 years, following the accident!!
I don’t take Diamox for my headaches, as they are so low grade I rarely notice them now I wear my collar 24/7. I take Diamox to reduce my intracranial pressure, which is causing the eye pain and exerting pressure on various brain structures, including my pituitary gland, causing varying degrees of bodily malfunction (hormone related); and probably pushing my hindbrain south (cerebellar ectopia) pushing it into my brainstem causing autonomic nervous system malfunction and fluctuations; all resulting in various bodily changes, a wide array of pains and discomforts, overall generating a multitude of symptoms.
I don’t know if a neck pillow will give you sufficient support but it’s better than nothing. Hope some of this helps (someone).
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!