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!
FIrst, let me say how sorry I am for your trouble. The Mayo Clinic has a battery of tests to evaluate and properly diagnose your husband. Dr. Paola Sandronii is a specialist there as well as Dr. Philip Low. They have spent their careers studying autonomic disorders and are generally able to sift through the symptoms and pinpoint the issues. Even the most skilled specialists around the world (who have not made a career out of autonomic disorders) have difficulty with these symptoms and the range of diagnoses will continue to be colored by each of their respective disciplines--for better or for worse.
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.
Hello- I am also in So Cal and recently was finally blessed with the Diagnosis of Dysautonomia after struggling 10years with many of the symtoms you mentioned. I was happy to finally understand the mechanics of how my body is malfunctioning. Information IS power. I feel for you guys. It has changed my life to the point of disability. I would recommend visiting the Autonomic Center at UCLA. Dr. Yan-Go has helped me get my symptoms to a managable place. My regular Neurologist had to refer me to her and I see both still. Here is a brief overview of what I do to control it:
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
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.
Hi...I just happend upon this website and am reading the last post from rmsbrea. I have been having the same symptoms for the last 3 months. My cardiologist thinks I might have dysautonomia. I live in Los Angeles and would love to speak with you regarding the Autonomic Center at UCLA.
My husband has been experiencing the same symptoms and was diagnosed by Dr. Yan-Go in March with dysautonomia. His condition is not life-threatening, but it has taken a huge toll on him mentally, physically and emotionally. I am in the Los Angeles area. I've been trying to find a therapy group to deal with the emotional stresses that my husband is going through. He feels very isolated from being at home and unable to drive, and dealing with the symptoms. Please feel free to contact me as well.
I also have been suffering from the same symptoms for 10 yeas now. Dysautonomia, POTS Syndrome seems top be the conclusion the Doctors have come to. Its hell at times. Weather stress, and time of the year all seem to play a part in this drama. I found lots of water, the right amount of salt, WHOLE FOODS only, and sleep are a must here. I walk 3 mile a day weather I have the strength or not. It took many months to work myself to the 3miles. After the Pots Crash I couldn't 'walk a block. I also cant sweat, I get PVC's and PAC's rapid heart rate bursts. The works. You just have to stay diligent in the fix! Im in the middle of a flair up right now, and Im looking for a support group here in Ventura CA. Cant find any good Doctors that have a handle on this either. Although I feel no Meds are the best way for me. Feel free to write me on my site Godnjazz.com their is a contact email there. God Bless and thank you for being here. Jeff
It's been a while, and I just thought I'd follow up and see how you are doing. Please let us all know whether you are feeling better. Did you find some means of feeling better? Did you find a good doctor; one who is familiar with treating your condition?
It has been up and down for my spouse, in part, due to the weather now. He seems to have hit a rough point.
He also stopped seeing Dr. Yan-Go, as that was going nowhere.
I guess the bottom line is don't give up. It seems that there are clusters of good and not so good periods. Rest when you aren't feeling well, and enjoy the periods when you better.
Hi there. I'm a 22 year old male and have been experiencing these types of symptoms for about nine months. I can barely get out of my house, i can't follow people during conversation and I feel like I can't concentrate. I used to play division 1 basketball at school but now i can't even get out of my house. i went for a walk with my dad the other day and broke out in cold sweats and was so dizzy. I was exhausted for the rest of the day. I have had chronic sinusitis this whole time and I had surgery done to fix it. but i'm still feeling miserable and am wondering if there's something else wrong with me. It's so depressing, i used to be a very busy independent person but now I can't do much of anything. I want my life back.
Hi. I just stumbled upon these posts. It struck me that many here are in Southern California. I am as well.
I have many of the same symptoms described here. It appears as though I have Lyme disease and Babesiosis. I was looking up dysautonomia because my doctor told me that's what the lyme (and related issues) is causing.
Treating lyme has been a long and pretty hellish road, and I have experienced some improvement, but also some very, very rough times.
Just wanted to add to this thread. I see that it's old, but I'd wonder how some of the people who posted here are doing now.
Definitely look at the ILADS sight for a Lyme-literate doctor to examine you and get the tests they recommend to determine if you have Lyme disease and/or other infections from a tick bite. Sure sounds like it to me.
i have had similar symptoms. for as long as i remember, i have been very heat intolerant. i don't have daily symptoms though. when i get hot, i will get sever migraines, nausea, vomiting, and fatigue. this is very stressful due to the fact that i feel like my family has to live around my problem. we have to take vacations in cooler weather and i know when i go to watch my kids play sports i'm in for an evening in the bed. i did see a neurologist which said it was dysautonomia and sent me to mayo clinic where they ran tests. they also shocked my autonomic nerves (which seems to have helped me sweat some under my clothing, still not on my head or face though) they told me i was heat intolerantand to stay of the heat and wear light clothing. i just wish this could be fixed. i hate to feel like i can't even watch my kids outside...
Yea, that's odd that most of us are from Southern California. Anyways, I've had a rough time trying to get help with doctors. I feel that they don't believe me of what I'm telling them because of how young I am. It's not only been a physical problem... It actually has caused lots of anxiety and panic.
Can anyone help? It's been super scary.
I want to test for Lyme, but don't know which test is best to test.
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