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For the last 7 months I've been suffering from "what neurologist says" hemiplegic/limb migraine.
I am looking for people who share similar experiences so I can really understand more about my condition.
Long story short:
37 year old male, fit and healthy.
One day at the office sudden palpitations (140-90bpm), massive disorientation and dizziness, high blood pressure (160-100), huge fatigue. Paramedics took me to hospital. 4 hours later it all settled but I was shaken. Cardiologist gave me the thumbs up and off I go.
2 days later, same thing with less palpitations.
3 days later, same thing with left hand side went semi numb, massive jaw, chest, head pain, my vision went funny, tight chest. Pain was too much I blacked out at the A&E.
Thats the day my tinnitus first started and never disappeared. Also to date my left leg and arm are still numb a bit. My face and jaw numbness is gone now.
I was so scared spent a few thousand pounds at private and used all facilities of NHS possible. Seen 13 doctors so far. 12 of which said "it must be a nasty virus".
Tests carried out to date:
24h urine with a chemical in it. All clear.
7 day heart monitoring. All clear.
Treadmill and lung function. Gas exchange rate at 70%. All else exceptional.
Heart and abdominal ultrasound scans. All clear.
Brain ct scan. All clear.
Every single blood test you can imagine. Folic acid was low a bit. Slightly high cholesterol.
Lyme disease tests to follow. A German lab gave a very very low positive which is not recognised in the UK.
Pinner intolerance test. Not intolerant to anything I would normally consume.
Since then I'm suffering these episodes every 3 to 5 days. Gradually milder. Never in the morning, sometimes in the afternoon, usually in the evenings.
Episodes always have 3 things in common and last about 15 minutes to 3 hours;
-Massive fatigue that makes it even hard to walk around. I feel like I'm dying but not sure how to describe this feeling. At some point I accepted death so it doesn't bother me much.
-Chest or abdominal sharp stinging pain.
-High blood pressure. 150 over 100 usually.
After every episode there is a 2 day hangover period which I feel extremely ill.
After one month of suffering I visited a really good and experienced neurologist. He diagnosed me with limb migraine and put me on beta blockers (150mg/day propranolol) and sodium valporate (800mg/day).
In the last 2 months I feel like I hit a wall and never going to get back to healthy me again. All these symptoms are still lingering but milder that enables me to carry on with my life in a less enjoyable way.
Anyone sharing similar experiences please let me know how you get on with your condition.
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