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Chronic dizziness, fatigue, dysautonomia symptoms
by DMgirl18, Oct 07, 2007 02:30AM
My husband has had the following symptoms DAILY since June 2005 (over 2 yrs!): dizziness, lightheadedness, fatigue, weakness, orthostatic HYPERtension, insomnia (more specifically either delayed sleep phase syndrome, or non-24 hr sleep-wake syndrome), he is unable to sweat so his body overheats very easily, and he has had a slight, but noticeable (to himself and to me) decline in cognitive function (specifically processing and memory). He is also extremely hypersensitive to stimuli, whether it be going to a store, the music being 'too loud', our baby being fussy, or anyone talking to him for more than a minute or so at a time. He gets very 'overwhelmed and dizzy' (his words) and during conversation he cannot follow the other person very well.
He is an optometrist and has been unable to work since this condition began. At first he was able to go to his dr's appts and to church once a week, although it was difficult for him to sit upright for that one hour in church. This past year, his condition has worsened to the point where he can't even do that anymore. Riding in the car to his dr's appts is almost unbearable for him, as he gets dizzy to the point of vomiting sometimes. On the days he feels 'better' (which is maybe a couple of times a month), he tries to run little errands here & there, but he will be totally exhausted and wiped out that night and the entire next day. On the days when his condition is at its worst, he can't even get out of bed or off the couch (where he lies for most of the day, every day). His is extremely weak, and says that he feels like his 'heart is just going to give out'.
Because of the no sweating thing, obviously any amount of heat makes things unbearable. He can't even go outside into the backyard on warm days, much less anywhere else. As you can imagine, after 2+ years of this, he has also developed anxiety & depression.
We have been to COUNTLESS doctors, specialists, and alternative practitioners, and had all kinds of bloodwork, scans & tests performed. Not one doctor has come up a with a definitive diagnosis. Neurologists, cardiologists, endocrinologists, EENTs, etc. Some want to just dope him up, and others are eager to just pass him along to the next specialist.
This has been an immense strain on our marriage, as we were only married for 1 year before he fell ill. And if any parents are reading this, you can imagine his utter dismay at not being able to take care of or even play with our son (who is 18mos now). If anyone has ANY little bit of insight as to what he could be suffering from, PLEASE email me. Or post a response here. Even if you just have the name of a doctor we could go to (we live in southern california), please share it with me. We are willing to try ANYTHING at this point. Thank you!
He is an optometrist and has been unable to work since this condition began. At first he was able to go to his dr's appts and to church once a week, although it was difficult for him to sit upright for that one hour in church. This past year, his condition has worsened to the point where he can't even do that anymore. Riding in the car to his dr's appts is almost unbearable for him, as he gets dizzy to the point of vomiting sometimes. On the days he feels 'better' (which is maybe a couple of times a month), he tries to run little errands here & there, but he will be totally exhausted and wiped out that night and the entire next day. On the days when his condition is at its worst, he can't even get out of bed or off the couch (where he lies for most of the day, every day). His is extremely weak, and says that he feels like his 'heart is just going to give out'.
Because of the no sweating thing, obviously any amount of heat makes things unbearable. He can't even go outside into the backyard on warm days, much less anywhere else. As you can imagine, after 2+ years of this, he has also developed anxiety & depression.
We have been to COUNTLESS doctors, specialists, and alternative practitioners, and had all kinds of bloodwork, scans & tests performed. Not one doctor has come up a with a definitive diagnosis. Neurologists, cardiologists, endocrinologists, EENTs, etc. Some want to just dope him up, and others are eager to just pass him along to the next specialist.
This has been an immense strain on our marriage, as we were only married for 1 year before he fell ill. And if any parents are reading this, you can imagine his utter dismay at not being able to take care of or even play with our son (who is 18mos now). If anyone has ANY little bit of insight as to what he could be suffering from, PLEASE email me. Or post a response here. Even if you just have the name of a doctor we could go to (we live in southern california), please share it with me. We are willing to try ANYTHING at this point. Thank you!
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You will need a referral to these doctors, and you should prepare for a 2-3 day visit with a series of tests, including tilt table, sweat test, blood work, ekg, etc. This is at the Minnesota Mayo clinic and in all honesty, even in the most difficult circumstances, the tests aren't terrible. Travel to and from southern California is not that bad either, with the biggest hurdle being getting on th plane, etc. It is worth the trip, even in a wheelchair.
You will NEVER figure this out from the internet. There are too many contextual and qualifying characteristics of the different disorders that are confusing to even the specialists. Specific tests compared against a database of thousands of patients collected over the last 10-15 years is the only way to make any sense of this.
And remember, your experience is not everyone else's experience. It doesn't matter, ultimately, what the diagnosis is, the statistics say, etc. Your husband's life is held by God and He determines your and your husband's direction--all for the greater good.
Good luck
you might want to look into either Candida or Lyme disease.
I have the same type of symptoms.
Mine started 5 months ago after receiving a tetanus shot (Tdap)
and then taking antibiotics for 18 days.
Hang in there ..... There is an answer.
1. lots of sleep- as much as 12-14 of 24 hours
2. no exposure to heat (no saunas, spas, hot baths or extreme weather). buy a cooling vest if necessary
3. high protein foods frequently throughout the day, turkey- cheese- peanut butter
4. Yoga
5. Accupressure
6. 3 liters of water per day
7 compression stockings
8. build muscle in the legs. this is a challenge because of the exercise intolerance but start slowly and MAKE it happen. it WILL help
9. high sodium diet
I wish you guys the best and hope some of this helps.
Thanks
Victoria
I am Rose (rmsbrea). Please feel free to call or email me. My cell is 714-926-1834, email address is ***@**** I would be happy to help you in any way I can.
Rose
I am Rose (rmsbrea). Please feel free to call or email me. My cell is 714-926-1834, email address is ***@**** I would be happy to help you in any way I can.
Rose
thanks, so much.
Victoria
Grace (310) 995-4722
Best wishes!
Grace