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Does anyone’s crown flatten when they are upright?
Posted: 25 August 2016 11:41 AM   [ Ignore ]  
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Hi Everyone

I wonder if anyone can help me understand my symptoms and get some help in the UK.

My Neurologist is perplexed himself and not sure how to help me, although he is trying to find out what’s going on. My blood pressure rises dramatically when I stand up and I feel that my breathing is laboured when I’m moving but improves if I’m completely still.  I have neck and shoulder pain, and a feeling of pressure on the top of my head. The crown of my head flattens when I’m upright but fills out when I lie down. All these symptoms started after a minor head injury some time ago and I am really struggling to lead an active life due to pain, breathlessness and fatigue.

Does anyone know somebody in the UK who may be able to help. I would love to come to Dr Diana’s clinic but travelling is very difficult for me.

Before my accident I was fairly healthy apart from ‘allergic’ reactions and sensitivities. I’m also deaf in one ear.

Thank you for reading this and I wish you good health in the future.

 

 

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Posted: 27 August 2016 08:01 PM   [ Ignore ]   [ # 1 ]  
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Bea17 - 25 August 2016 11:41 AM

My Neurologist is perplexed himself and not sure how to help me, although he is trying to find out what’s going on. My blood pressure rises dramatically when I stand up and I feel that my breathing is laboured when I’m moving but improves if I’m completely still.  I have neck and shoulder pain, and a feeling of pressure on the top of my head.  . . . . . . . All these symptoms started after a minor head injury

I have also suffered these things above after a head and neck injury. After 5 years of suffering, I got rid of the neck and shoulder pain (and top of the head pain) by wearing a Philadelphia collar (and body brace initially - but now just the collar).  I started off with POTS, where my heartrate went up substantially upon standing but, over time this has developed into my blood pressure going up instead. The post below gives a possible explanation:-

http://prettyill.com/forums/viewthread/1715/#5244

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Posted: 30 August 2016 05:00 PM   [ Ignore ]   [ # 2 ]  
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I’m so sorry to hear about how this is affecting you. :( Can you clarify for me what you mean by ‘the crown flattening’? Is it visible? Is it something you could share a photo of, perhaps?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 01 September 2016 02:38 AM   [ Ignore ]   [ # 3 ]  
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Hi Dr Diana

I’m sorry but I don’t think a photo would show anything through my hair but I will try to explain what’s happening.

When I sit up or stand, the top back/crown area flattens and indents slightly. This indentation can increase slightly when I walk but usually only improves if I say absolutely still with a collar on or if I lie down with pillows behind.  A physiotherapist I recently consulted tells me that the small muscles at the side of my neck and in the lower part of my head are in constant spasm but the exercises he’s given me to strengthen the larger muscles in my neck haven’t helped. He tells me that I shouldn’t were a collar but it feels that my life is at risk if I don’t wear one and my breathing, temperature control and insomnia problems increase. I am taking anti-histamines which help with the sleep and reactions to food and drink etc but am in a bad way!  It feels as though my neck muscles are pulling my head backwards sometimes and, if they relax when I’m tired, my head falls forwards or to the left.  The Neurologist who examined me could hear a very loud bruit on the left clavicular fossa but a recent CT scans did not show the blockage in the carotid artery that he suspected only slight asymmetry of the sternocleidomastoid muscles. He also said I have brisk upper limb reflexes but lower limbs are OK. A previous upright scan showed a Chiari 0. My Neurologist is considering a Dopplar ultrasound of the carotid and vertebras done with my head in neutral and turning positions as well as tests for POTS as my blood pressure shows a significant elevation on standing.  Any advice you can offer would be very welcome.
Before the minor head injury, I had previously had heart racing and allergic symptoms which seems to run in the family but my health was quite good.

Any advice would be very welcome.

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Posted: 01 September 2016 09:28 AM   [ Ignore ]   [ # 4 ]  
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Oh! I get it. One thought: Many of us can suffer with high intracranial pressure mimicking Chiari symptoms (including rather extreme neck/shoulder tightness). I remember how my head would sink down toward my shoulders and my muscles were so tight, they felt like bones! Yeeks! Have they ruled out Chiari in your case? Have they tried Diamox to see if you have a response, perhaps?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 02 September 2016 03:35 AM   [ Ignore ]   [ # 5 ]  
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Hi Dr Diana

Thank you for advice.smile

I haven’t had a test with Diamox yet. The muscle spasms are at the base of my skull and mostly on the left side of neck to my shoulder and occasionally on the right as well. The upright scan showed a Chiari 0 which the Neurosurgeon wasn’t too worried about as he said is not a true Chiari. Pain and distress is worse first thing in the morning when I stand and also spikes shortly after I eat or during exercise. Does this mean anything to you?

Best wishes x

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Posted: 02 September 2016 11:39 AM   [ Ignore ]   [ # 6 ]  
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Honestly, it sounds so much like high intracranial pressure—I can relate to those symptoms well. I discuss this in “The Driscoll Theory” at great length—do you have a copy of the book?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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Posted: 04 September 2016 09:38 AM   [ Ignore ]   [ # 7 ]  
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Thank you. I’ve read your book and need someone in the medical profession to prescribe Diamox. Do you have any contacts in the UK who are familiar with intracranial pressure and how to treat it?

Best wishes

 

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Posted: 05 September 2016 12:27 PM   [ Ignore ]   [ # 8 ]  
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I’m sorry, I don’t know any at this point, but I know there are some patients from the UK on this forum. Perhaps someone will speak up? Can anyone help her?

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Dr.Diana, therapeutic optometrist disabled by EDS/POTS/ME/CFS for a decade, now recovered and practicing full-time at POTS Care cheese

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