Dawg Tired

My symptoms tend to come and go. I have times when it is all day every day but then I also have days when I have almost no symptoms.

I'm 46. Just had 10th anniversary of my hysterectomy with bilateral oopherectomy. Was diagnosed 3 years ago.

I, too, kept losing my vision when I first got sick and by chance I went to a wal-mart vision center to get new glasses. I had just had my positive TTT and I told the optometrist. He had actually heard of NCS and POTS!! I was SO excited! He explained the dry eye problem I was having was probably part of the autonomic problems, and the blurriness, and blackouts.

Back in 2000 or so, as a "cost cutting" measure the job of screening and approving/denying the initial SSDI applications were turned over to the states. All states handle this chore differently. My initial app was in Montana, where I had a very LONG process to go through and no attorney would even touch it until it got to the hearing level. Montana had NO effective Medicaid system. In Missouri, where I moved by the time I was up for reconsideration (still at the state level) I qualified immediately for Medicaid because I had filedfor SSDI and the process here was much shorter. So - in my experience - it depends on what it will cost the state to support you until you are approved.

Ahhh, yes, brain fog... Between my brain fog and Hubby's head injury it's a wonder we survive!

I tend to agree with you about the sealed letter - that seems to be the best option; and also look for a chance to discuss your issue in class because if she pulls the same stuff about wanting you to read the books that will "cure" you then the rest of the class can chime in and back you up. During nursing school I missed more days than was allowed by the program and was threatened with expulsion; my classmates drew up a petition that was signed by ALL of them and I got to stay in school.

When I initially applied I lived in Montana, where lawyers won't even talk to you until you are ready to go to the hearing stage. I lived up there for 3 years, during which time I got sick. We came back to Missouri when I got my second denial and I immediately turned it over to an attorney. They filed the reconsideration. Some states have that step and some don't. Had we lived here from the first I would have turned it over to the attorney before I filed. Some of us are able to handle the paperwork; others aren't. The amount the lawyer charges is the same weather it gets approved the first try or goes all the way to federal court.

Medicaid denial... Standard Operating procedure!! They usually deny on the first (and a lot of times on the second) application. Depends on the state where you are. Missouri right now - they have kicked ALL of us disabled people off Medicaid. Appeal, appeal, appeal! Do you have a SSDI lawyer? Sometimes they will help with your appeal. So sorry you are having to begin this process - I think it is damaging for us to have to deal with all the c**p we have to go through just trying to deal with the beaurucracy!

Here's to you! It sounds encouraging for you. Best wishes, I went through that a year ago.

This is a good idea!

Chad, SO sorry you are going through all of this. I know how you feel. The heart rates you describe are pretty common here, although some, like me had heart rates dropping into the 30's laying down and for that reason I got a pacemaker. A pacemaker can speed it up but can't slow it down. Anxiety... Yes, most of us have it, and the more you go with doctors telling you that you are fine the more it grows until you reach the point of wondering which is taking over, the anxiety or the autonomic problems? Home remedies - we seem to be all over the place here. I drink 2 cups of coffee in the morning and that puts me on a reasonably even keel. Others can't tolerate coffee. I am sure that others here will respond with better answers than I can give you. Eating. Ensure plus will probably be fine for you, some of us tolerate soup of some kind. Dry eyes and mouth - I have that problem, I try to hydrate as much as possible and also use artificial tears. Unfortunately, this seems to be part of it. Cold feet?? That's my cat, Hector's job! Best of luck to you, come here often, I hope we can help you!

Mono at 14, problems after that. Then disabling in 2002 after another virus. It was all going to be better in 10 days..... So I would say viral. But then, both of my parents have pacemakers and both of my sisters have arrythmias so, maybe a combination??

"People in church used to stare at me when I did not stand up and down in mass. Now I bring my seat cane and prop my feet up while sitting during mass. I get dizzy if I sit longer than 30-45 minutes with my legs down. No-one glares at me now! My friends and family said the best thing yet. GOD knows! You don't have to do any explaining to anyone about why you cannot do something. GOD knows. Judge not lest you be judged! I am not a religious zelot but this helps me a lot." I sit on a back pew in the corner by the wall and an elderly man always sits at the other end by the aisle. If anyone tried to come sit between us he tells them, "If you sit there you have to rub Gayla's feet!" It discourages all but a few people from EVER sitting between us!

At least the lawyer is understanding. He asked me how desperate we are. I told him that now we have SSDI coming in we aren't. A year ago it might have made a difference but these people (LTD) already forced me to drop my COBRA when they cut me off a month before I could get into Vanderbilt (Leaving us with -0- income!). Lawyer knows that so he is making more filings to show the court that THEY kept me from getting help that could have possibly been offered. So we are going to hang in there and see what happens. I will keep all of you posted, thanks for the support!

My lawyer called yesterday. We have pursude my LTD all the way to filing in federal court so the LTD company made an offer to settle - $6,000! By the time the atty took his 1/3 it would be $4,000 for us. These people are supposed to pay me 66% of my wages from the time I was disabled until I'm 62 - it would total almost $200,000!!! And they want to settle for 6,000. Another way we get pushed aside and ignored. No, the lawyer told me he had to tell me of the offer but he is going to pursue it further and try to get more. The reasoning the ins co used was that my "pacemaker is functioning normally", He said sure it is... Problem is, weather the pacemaker is functioning or not... the person it's in is not!! What a crock!!

Thanks, all of you! I am just now getting back on. My regular GP came back and I had an appointment already set up with him and as soon as he saw me he said we had to get the high bp treated right away. What a blessing! He gave me a script for 20 mg zestril. It was 3 days before we had the money to get it but as soon as I did I took it. It made me very tired and a bit shaky. I went to bed - no headache! It was wonderful! I slept for almost 14 hours then I took the second one today; the side effects were not noticeable and it seems to be working well. I feel better with no headache - just tired, but hey, what's new?? Thanks again to all of you for answering me and letting me know I'm not alone in all this!

I have been fighting NCS since 2003, dx by TTT. The last 5 weeks or so I started developing headaches when I was laying down. At first I thought it was my sleep apnea - couldn't use a C-PAP - caused extreme headaches; had surgery for it in 2000 but didn't help. Anyway, I was convinced at first that was the problem but then I laid across the bed one day to talk to Rick while he was working on his computer and ZING! Here came the headache. I got my cuff and stethoscope and checked my bp and sure enough, it was 160/110! I had noticed that with the nighttime headaches I could get up and sit upright for a while and it would go away. So... My GP was in Venezuela on a mission trip and I went to the "on-call" doctor. He took me off my estradiol since that was the only daily med I was taking - told me that since my bp was fine there in the office I had nothing to worry about, and ordered a CT scan of my head. He was a bit miffed because I couldn't have an MRI. Pacemaker, ya know... Didn't want to address the bp issue at all - looked for the cause of the headache elsewhere even though I had brought in a list of readings. Oh well, we've ALL been there, done that Fortunately, my GP came back, I already had an appointment, he looked me over, put me back on the estradiol, and gave me some lisinopril. I haven't had it filled yet due to money issues but I will be getting it today. Hopefully, I will be able to lie down again. It has been SO frustrating only being able to lie down for 20-30 minutes at a time. Has anyone else had this issue? I only did in 2002 when they tried me on florineff.

Fatigue... It is like I can't lie flat enough on the mattress to rest. Maybe if I could just melt into the mattress or become one with it. Like even lying in bed is taking up energy. I have a tall stool with a back on it so I can sit at the stove/sink to cook - on the rare occasions when I can. I also have a kitchen island that is on wheels so I can easily move it wherever I need it and that is a big help.

I always, always carry a cane. I have one in each car in case I do have to use my parking tag. Then everyone can see that "something" is wrong.

I have never called the ambulance; I am fortunate that my husband is home with me most of the time and has taken me to the ER a few times. That was a disaster even though I went to 2 different ER's in 2 different states both treated me like a head case.

1. Dizziness - tachy 2. Presync 3. Fatigue 4. pain

We got central heat and air this summer - we managed to pay off the house this past spring and have been working on it. Central air was the first big investment we made! My EP ordered me not to go out in the heat under any circumstances. It has been very tough on me in the past summers with no AC or trying to get by with window units. Hubby, bless him, Mr Pennypincher has been keeping the thermostat down on 73 for me without any argument. I think he is intimidated when I hit the floor!

I have probably always had some degree of problems and I've lived all over the US. But I started really having problems when I had lived in Montana for a couple years. It was HOT up there in the summer and we had no AC.

You can check users profiles and see if they belong to an IM service such as Yahoo! messenger.

Try some Aveeno lotion - it helps me when I break out in the itchies. It isn't a cure-all but hey, even a half hour of relief is better than nothing! Maybe a cool, baking soda bath??