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[Kanoe36]

I am new to this forum and I am hoping that I can find some guidance here. For about the past seven years my husband has had episodes where he will have the following symptoms: slurred speech, glossy eyes, pale skin color, sweating, dilated pupils, visual disturbance, feeling as though his blood "pools to his feet", unbalanced gait, sometimes vomitting (although this happened only twice) and gastrointenstinal upset. Most of the time, I can notice some of these symptoms before he knows about them. One symptom that has occurred on several occasions is there is an alcohol odor from his breath. When I tell ER physicians about them, they ask if he has been drinking (his symptoms do mimic someone being drunk), but I am appalled that they throw this in there on top of what already is a tough situation.

He has seen so many doctors and had so many tests, and they keep saying it is syncope. We have seen endocrinologists to urologists and all diagnostic tests come back fine. The only issue there ever is, is a slight decrease in potassium. There have been times where we have had to dial 911. During those times, when he received oxygen, he rebounds quite quickly.

These episodes are now at a point where he is in jeopardy of losing his job (although I don't know if they can truly terminate him due to this disability). He is being treated for HBP with Atenolol and Lisinopril. He also sees someone at the heart clinic due to his elevated lipids and cholesterol. He has never had the tilt table test done to determine syncope.

I noticed that people are filing for SSDI. Is there special verbage that SSDI looks for when filing for disability? Is a Neurocardiogenic Syncope diagnosis enough to file for SSDI? Then once on SSDI, how long can someone stay on SSDI? Thank you for your patience with me - we are so overwhelmed with all these years of episodes. We need some guidance.

[JaneEyre9]

Hi Kanoe,

I can't help with the specifics of your SSDI questions but i wanted to welcome you to the forum. This is a great place to find the support and answers you are looking for! Sorry to hear what you and your husband have been going through for all these years. Health problems like these are not easy. Has your husband ever had a heart attack?

Kristen

[Michelle Sawicki]

Welcome to the forum! I sent you a PM.

Michelle

[Ernie]

Hi,

Welcome to the forum.

Your husband should ask for a TTT.

Don't know abou the America SSDI.

[Aprilmarie52]

Just wanted to say welcome to the forum.

[Jacquie802]

Hi, I also would like to welcome you to the forum. I hope your husband gets a diagnoses soon. Not that a person wants to be sick, but it somewhat helps just knowing what exactly is wrong. Good luck!

Jacquie

[Sunfish]

kanoe -

welcome. i'm sorry that you have a reason to be here but glad you found us and hope that you find the site & the forum to be helpful.

re: SSDI, you may want to do a search (on "disability") as it's been discussed many times. but to very briefly answer your questions:

re: special verbage, there isn't a cut and dry answer. it is important to have throrough records that mention not only symptoms but also limitations. obviously there is a lot more to it than that but honestly it also depends on who reviews one's file as the initial determination is made by essentially one person. so the exact same file could easily be approved on one day and denied another. that said, there are certainly dos & don'ts in regard to the application process to help one's chances.

re: the NCS diagnosis, it is definitely not "enough" to qualify for SSDI. it is sufficient to file as anyone can file for any reason, but the diagnosis itself will not qualify someone. that is NOT to say that it's not an important part of the "package" so to say in regard to backing up one's claim, but much more is needed re: documentation of physical limitations, specific symptoms, etc. in order to get a approved.

re: how long one can stay on SSDI, the technical answer is "indefinitely" as long as one is still unable to work. but there is more to it than that. if/when approved initially the SSA puts you in a category of sorts that determines how often you will be up for review (depending on the expectation/likelihood of improvement). this can be anywhere from a year to many more than that but generally is around every 2 years from what i've heard from individuals.

you may also want to check out the SSA website as it really is quite full of information. it's at www.ssa.gov

hope this helps a bit.

hang in there,

melissa

[BuddyLeesWife]

Sorry that you had to find us........

Your husband's symptoms sound very much like my husband's symptoms, especially the drunken state and your noticing them first. Fortunately my husband's symptoms are now mostly under control so I cannot help with the SSDI question, but he does have a twin brother who is currently pursuing disability. His brother just received a diagnosis of NCS from Dr. Grubb after MANY years of testing and MANY different doctors. I am not really "in the loop" on their disability efforts but if I learn anything I will make sure to post it for you.

As long as my husband "manages" this disorder and sets limits on what he can do he is fine but therein lies the problem.

I hope you are able to find something that works to control your husband's symptoms and keeps him safe.

[morgan617]

Welcome to the site. Unable to diagnose, but interesting symptoms. Hope they can find something. Have they put him on potassium supplements since his is always low?

As far as ssdi, it's so variable. Depends on how good your docs are at documenting, etc. There are tests for syncope, but you didn't mention anything specific that I recall. Hope you find the help you need. morgan