[ Home | Contents | Search | Post | Reply | Next | Previous | Up ]
AntiSpam: orange
From: Becca
They offer great support to both patients _and_ their families and they do have a video too of an attack which can help drs pinpoint a diagnosis - which possibly your dr can request.
I'm 30. I've had attacks since about 14. I can't drive, but I get by with public transport. If I stand too long, or get hot, or walk to long or get extremely upset or stressed out then I get ill. I found the diary I mentioned most helpful because it helped me find out possible triggers. If he has difficultly walking for long periods then buy a small portable stool - embarassing yes, but less so than having an attack. Lying down can ward off an attack - again embarrassing but less so than being ill. I can work and did work full time until just under a year ago. Now I work half time.
What he needs is _you_. I don't have family support and right now with my conditions being bad I'm struggling the one thing I want is support. Be there for him. Help him accept the condition for what it is - a pain and a part of his life but NOT his life.
There are meds that can help. Including betablockers and midodrine (both of which I tried but they didn't help me). Thing is the only way to find out what helps is to experiment.
The condition tends to be particular to the person so it can be hard to treat.
One thing, you and he will come across doctors who say this is his fault and with effort he can make it stop. This is _not_ true. All this means is the doctors do not know and are therefore blaming him.
Does any of that help you? Becca