Diagnosed 17 yrs ago, 3 surgeries, sick 17 yrs, on SSDI, too sick to work, too sick to raise my kids full-time, out of bed 3-4 hours/day, taking 9 medicines, surgeries unfortunately unsuccessful, worst symptoms are the headache, full body pain, and anxiety.
Work full time (it was dicey there before surgery)
No kids- waiting till I’m better
Only in bed for normal sleeping hours- but before I started wearing a cervical collar I was in bed all day for I one week
2 medications: propranolol (beta blocker) for dysautonomia and cyclobenzaprine for muscles
Yes, surgery helped, but still need help for CCI
Headache, spine pain, incontinence
Maggie,
I know you’ve been through a lot, I just want to acknowledge that. You have young kiddos and
feel awful all day. It never ceases to amaze me how strong people can be. You’ve climbed mountains in my book.
I’m curious about what surgeries you had. Do you have POTS?
Diagnosed 6 mos ago. Sick with Fibro. for 6 years. No surgery. Force myself out of bed in morning, stay in chair, work part-time as tolerated. Last 2 months bad sleep apnea so no work. Swallowing, Vertigo, head pressure and fog.
Funny that everyone here calls dysautonomia POTS. POTS is just one form of dysautonomia, and there are dozens we can have. Yes, I have POTS as well as full-blown dysautonomia in many forms. First surgery was occipital and dural decompression with a C1 laminectomy. Second was to repair a meningocoele. Third was to repair another meningocoele,reinforce the dural patch, and partial reconstruction to compensate for intracranial hypotension causing my tonsils to herniate when I sit or stand up- at least that was the goal! Thanks for asking!
How long have you been diagnosed? 2 years in February
How many surgeries have you had? 1
How long have you been sick? I had headaches and weird stuff my whole life but didn't get bad til around 5 years ago.
Are you on SSDI? No
Are you able to work? I work full time as an accountant.
Are you able to raise your kids? My daughter was in her teens by the time I got really sick and is an adult now.
How many hours per day can you spend out of bed? Around 16.
How many medicines do you take? None regularly.
Did surgery help you? Yes. I saw improvement in almost all of my symptoms.
What are your three worst symptoms? Right now I get occasional muscle spasms in my neck and headaches here and there. Prior to surgery I'd say fatigue, tingling in the hands and feet, and lightheadedness.
How long have you been diagnosed? 13 months
How many surgeries have you had? 1
How long have you been sick? At least 37 years, symptoms progressed from childhood and became much worse over a year ago.
Are you on SSDI? No
Are you able to work? Yes
Are you able to raise your kids? Yes
How many hours per day can you spend out of bed? As many as it takes but would really rather be in bed almost all the time.
How many medicines do you take? 3 for chiari related symptoms
Did surgery help you? Only for the first few weeks
What are your three worst symptoms? Difficulty walking, back pain, fatigue
Almost 20 years since my diagnosis. I was always told it was nothing and that I should be proud because my brain was bigger than most peoples! Lots of uneducated doctors to say the least!
1 surgery for Chiari.
My really bad symptoms started in 2001.
Not on disability of any kind.
I can not work.
I successfully raised 4 kids.
It’s easier to Telly you how much time I spend in bed rather than out. I can not tolerate laying down flat, so I sleep in a recliner (with my terrible insomnia I only sleep a couple of hours a night). Needless to say I have constant and debilitating fatigue.
I take 2 seizure meds, 1 migraine preventive (beta blocker, not real successful. I already have really low BP and that makes it even lower) 0 pain meds due to severe allergies and sensitivities. 1 muscle relaxer. Multiple supplements prescribed for migraine and severe muscle spasm and dystonia.
I consider my surgery very successful. I had no CSF flow and hydrocephalus and a huge syrinx with a very large herniation before surgery. I would do it again if I had to go back in time.
3 worst symptoms
Pain
Hemiplegia due to the syrinx and hydrocephalus
Vision loss (because of the high pressure in my head)