Welcome to my health blog. I am a 29 year old living with a range of strange and confusing medical symptoms and conditions including various functional/neurological disorders, Endometriosis, PCOS, Raynaud's Disease
and seronegative Hughes Syndrome. This blog is to document my struggle with doctors and the impact these illnesses have on my life. I hope that in some small way, my experiences will give others who are in similar situations some sort of strength or some form of comfort. Thanks for visiting!

Some may question my choice of title but if you are ill constantly and seem to always have your brain on pain and discomfort that's making your life very difficult, you begin to feel that perhaps you are a hypochondriac or what's worse, that other people see you as one. Whether you are or not, you still feel pain, sadness, and dispair which brings me to this quote from Harry Potter and the Deathly Hallows by J.K. Rowling:

"Of course it is happening inside your head, Harry, but why on earth should that mean that it is not real?" - Albus Dumbledore

Tuesday 31 January 2012

First DV Notes

(Mostly documented over the last few weeks due to lack of voice and inability to converse with doctors)

15/09/11 - 11/12/11 - Feeling of lump in throat and violent coughing, worsens during the evening.

12/12/11 - Pressure felt in head and neck, loss of voice entirely. On attempting to speak, increases pressure in head, causing ache and inability to breathe and talk at the same time. Voice will only function when head is tilted down to chest and to the right (to the left causes loss).

January 2011

Voice still gone as above. Balance and dizziness worsen. Three days after increase of physical activity (in an attempt to improve symptoms) one minor migraine/bad headache.

21/01/11 about 6pm - Shaking begins in hand, followed by facial numbness and strange feeling in head, neck and right shoulder. Dizziness increases and collapse in hallway. Ambulance called and admitted to DVH with ‘CVA’ symptoms to right side. Hot and cold flushes over brain, slumped face, blurred vision, loss of right side limbs.

Thrombolysed at about 9pm showing no bleed on brain. No scan of neck.

During administration of Alteplase/Thrombolysis, symptoms fluctuate between normal and stroke symptoms also with clear voice then no voice. Short while after complete injection of Alteplase, symptoms stay improved with the voice coming and going irregularly. Recovery going well.

Can now lift both arms. Leg weakness still present but not as bad as before. Admitted to stroke ward. Consistent low blood pressure, on drip for about 24hr.

22/01/11 - Recovering but leg lift from bed is still poor. Both legs can bend. Felt much better in myself. Bad headache/mild migraine during the day but passes within an hour. Random pains felt in the head.

At about 6pm, both ears go cold strange feeling in head and quickly relapse into stroke like symptoms - whole of lower face numb and slumped to the left, loss of mobility in left side limbs. After about an hour symptoms improve yet face alternates between slump and slurred/no voice to feeling and normal voice - 15sec intervals. CT done: no bleed.

23/01/11 - Regained mobility in left arm (not coordinated). Both legs weak on raise but can bend. Face slumped for night and half the day and returns in the early evening. Slumps and slurred speech occur again after attempted walk down hall with assistance of Zimmerframe.

26/01/11 - Discharged from DVH

27/01/11 - 6pm-8pm After walking a greater distance with assistance of a walking stick, vision worsens, lights bright, hot and cold flushes on brain and waves of nausea come and go. Voice loss again, only able to talk if chin is to right shoulder.

On going to bed, hot/cold flushes continue, chest feels heavy and difficult to get air in - sensation of bubbles in chest. Face slumps, confusion and voice slurring. Electric shocks in right cheek. Limbs do not worsen.

Ambulance called, admitted to DVH A&E and back onto the stroke ward. Hyperreflex in left arm noted and double vision to the upper left.

Following day extremely tired. Leg mobility increasing. Nurse notices strange pattern on the pulse monitor.

31/01/11 - Morning: On sitting up heart is beating very fast (as if running) and minor chest pains. Another nurse notices increased pulse rate (120bpm) and low blood pressure.

Afternoon: Discharged DVH.