Melissa's Story

In April 2014, at age 40, I developed a spontaneous spinal cerebrospinal fluid (CFS) leak and intracranial hypotension. This is a condition where the membrane that surrounds the brain and spinal cord develops a hole or a tear, allowing cerebrospinal fluid to leak out internally, somewhere in the spinal area. It results in a chronic, persistent and severe headache when an individual assumes an upright position. This is because CSF is the fluid that keeps the brain buoyant inside the skull. Therefore, if CSF is leaking internally, the brain sags inside the skull under the force of gravity when a person becomes upright. This causes intense head pain, and sometimes jaw/upper back/shoulder pain, as well as an array of other (often severe) symptoms, such nausea, vomiting, vision and hearing disturbances, tinnitus, ear popping, seizures, etc. People with connective tissue disorders are at increased risk of developing a CSF leak. In my case, this led to an diagnosis of underlying Ehlers-Danlos Syndrome, Hypermobility Type.

When I was suffering with a chronic 'low pressure headache' attributed to a spontaneous CSF leak, I could physically feel changes in barometric pressure. I could feel a wave of low pressure move through the atmosphere, just before it was about to rain. It felt like a suction feeling in my sinuses and soft palate, like the intracranial pressure in my skull was trying to equalise and equilibrate to match the change in pressure in my surroundings. At first, and before I had realised that it related to barometric pressure changes, I found the sudden change in symptoms alarming and unsettling. Then over time, I realised that this sensation occurred in the short time of a drop in barometric pressure, and just before a sudden 'cloud burst'.

Initially, people around me would raise their eyebrows and thought it was funny/ridiculous. But then I could predict an oncoming shower with such accuracy, that it became a bit more believable. It happened so many times that people around me were in no doubt that what I was feeling was very real.

Then when the spontaneous CSF leak healed, I flipped into a rebound state of raised intracranial pressure. This was quite severe initially, but gradually reduced over a number of weeks/months.

I can still feel changes in barometric pressure, and when we have a day when there are lots of stop-start rain showers within a single day, I often have a migraine-like unilateral headache by the evening.

I have also experienced changes in symptoms with changes in altitude. For example, last summer I spent a week in the French Alps (varying between about 1,000-1,600 metres above sea level), and the symptoms associated with my raised intracranial pressure were the best they have been since it started in August 2014. Then, when we returned home and went under the English Channel in the Eurotunnel, it felt like my head was being squeezed in a vice!

With regards to my theory about how this happens, I believe that when barometric pressure is low, the human body is less-squeezed by atmospheric pressure. This allows tissues to relax. Then this allows tissues to swell and cause discomfort/pain. This is definitely what it feels like in my skull.

I also believe that the reason why I can perhaps feel changes in barometric pressure in my skull more than someone else, is due to my joint hypermobility/Ehlers-Danlos Syndrome. My extra-stretchy collagen and connective tissues, which can potentially relax and stretch more than someone without Hypermobility Ehlers-Danlos Syndrome, are probably more prone to being manipulated by changes in atmospheric pressure, and hence I can feel the changes fairly instantaneously in my skull.

For further info on CSF leaks, please see CSF Leak Association: http://www.csfleak.info/

For further info on Ehlers-Danlos Syndrome, please see Ehlers-Danlos Support UK: http://www.ehlers-danlos.org/

*Name has been changed