Re: OT - DH had his Dr's appt today (advice?)

Debbie -- and YOU have my sympathies, after reading that. I have had migraines since I was a teenager. I don't take anything but aspirin for them any more (because nothing really works. Asprin will take it away at the end of the headache), but I sure feel for what YOU go through. Holy crap, girl.

Becki "In between the moon and you, the angels have a better view of the crumbling difference between wrong and right." -- Counting Crows

all that caffeine by itself can bring on the migraines. Caffeine headaches often feel just like migraines to the uninitiated.

Becki "In between the moon and you, the angels have a better view of the crumbling difference between wrong and right." -- Counting Crows

Helen,

I feel your pain. Let me ask one question. Do you know where the occipital nerve is located on either side of the head? If not, look it up on the net and email me privately at sklopman at cox-internet dot com. I have occipital headaches and they are like extreme migraines, but they act very differently. Sometimes they don't go away, period. This is what I suffer from. There is hope, including Neurontin.

However, before we go to far find the nerve and then we'll do a test. It's gonna hurt a little, but if it works you'll know exactly what's going on.

Starlia

cool.

Have you tried the others? Does it work for you? I had to stop for awhile cause it's so expensive and my insurance won't cover it.

water makes him sick? Has he been checked for diabetus mellitus (sp?)

and the nightsweats and other things also sound like pointing to sugar issues---perhaps syndrome x should be considered, which is insulin resistance and more...

if he wants to try an experiment and maybe improve his life drasticly, tell him to weed out all processed sugars--no soft drinks, no processed crap food--for a weekend. Sugar late in the day causes night sweats in my DH and several friends--even just a glass of orange juice. And up to 80% of people checked in a random test at one university were dehydrated, some severely. Anything drunk other than water pulls fluids out of the system and into the bowel, and can leave you dehydrated, especially coffee, soft drinks, beer.....these are all diuretics.

Of course, if he is unwilling to change his intake in order to feel differently but will seek out a professional to try and find a "cure", then its like refusing to give up trying to run your automobile on rootbeer, instead lets call another mechanic... Sarajane

Sarajane's Polymer Clay Gallery

Getting off all that soda would make a huge difference in his life. I did it when I went on Atkins, and it was amazing.

BTW, have lost 10 lbs since I came to CA. I ate ALL the way here (because I wasn't sleeping) but stopped over eating the minute I entered the state. It is psychological, I know (as are all my problems, LOL) but really really cool. I love being here.

Becki "In between the moon and you, the angels have a better view of the crumbling difference between wrong and right." -- Counting Crows

See, I knew you would all be a excellent source of suggestions (WTG people!!!) Dr did mention the occipital headaches (stress/tension) and also psuedo seizures (no weird brain activity) vs regular with brain activity. And that he could have both (duh) trying to remember what else she mentioned..... If it's one, the anti seizure meds (the depakote he's been on for a few years) if the other, anti anxiety meds. Or a combination thereof. I think the pain's mostly tension/stress/psychosomatic (sp?) And he realizes if he's in what he percieves as pain, he can take a pill and it's better (let's not even go into his mom's history - a pill will cure anything) (but that's a whole 'nother thing) I personally think a change in diet would help immensely. And a schedule (HAW!) to help regulate things (a schedule with chronic pain? are you kidding?) I think he might be hyperglocemic. Mentioned the possible ADD but the meds for that might cause (probably will) more seizures and since worrying about a job is the least of his worries it's not really an option. He's just got some major issues. Glad I'm patient enough (most of the time) to deal with it. Don't have a lot of processed food in the house. He's mainly a meat eater. Won't eat veggies. Likes it when I make bread. Butter over margarine. Cereal once in a while. Soda is a rarity but if he does have any it's usually root beer or the like (no caffiene) Doesn't drink alcohol (heard stories from when he was younger, grateful he doesn't) Won't drink OJ (citrus doesn't agree with him either) or anything else like that. But does like lemon in his tea. Stopped using cooking wine when doc figured out he might have sulfite allergies (makes him sick) Getting the picture?

Saved all suggestions. Print out and peruse. On an up note, got a letter from the lawyer yesterday. I guess we're filing a suit against the SSA (yippee!!) because they basically ignored the docs testimony and mine and everyone else's to say he shouldn't get anything. Hopefully good news. Loved the way it was written.

Thank you all very very much.

Later,

Helen C

On Sat, 14 Feb 2004 17:03:38 -0500, Helen C wrote (in message ):

I don't know if I can be of any help, since I'm still fighting the SSA, but it seems that the main thing is to document how the person's disability affects major life acitivies.(and by extension, work.) The more documentation, then better.

I have five doctors, and all of them wrote voluminous reports documenting my condition. The SSA has sent me to two of their own doctors, both of whom agreed with mine. In addition, my private disability insurance sent in loads of their own documentation from my claim with them. My doctors all predate my disability claim, most by many years.

Still, like your husband, my claim has been denied at the first three or four levels. My attorney tells me that we will be going to court. We've filed for a court date, and the attorney tells me it will be six months or more to even get a date for an initial hearing. We're looking at about another two years to settle this, and it's been more than two years already.

I have only a few bits of advice. Keep copies of everything, because invariably some crucial bit of paper will get lost. Every couple of months, I request updated copies of my medical records and treatment notes, and Bob makes a half dozen sets of each. I send copies to my attorney, disability insurance company and keep at least two copies of each packet for myself. I keep these files in a cabinet by my office phone, so when someone calls, I have the paperwork right at hand. I also write myself a little note when I get these calls, and throw the note in the file, so I have a dated record of everything that goes on.

Run everything you say to the insurance company or SSA by your attorney. Both of these places have contacted me directly, in spite of their own rules to the contrary. If all they want is a copy of something, I fax it to them. Otherwise, I tell them to call my attorney. I keep her phone and fax numbers handy, because whoever's calling never has them.

Be persistent. I think that the whole insurance/SSA is set up to see if you can outlast their baloney. They ask for the most obscure things, and give you nearly impossible deadlines. It definitely seems that they want you to either give up or croak before they part with a dime. Be their worst nightmare: an organized person with a mission. Stare them down and let them be the first to blink.

Hope this helps a bit. Remember, we're on your side, and if you need sympathetic friends, just shout.

Kathy N-v

Unfortunately, you almost always have to get an attorney for SSA. My mother had been denied about six times before they finally got approval. It's ridiculous. As long as I can function I won't be doing that for myself. However, if these occipital headaches get worse I'm not sure what else I can do.

"Dr did mention the occipital headaches (stress/tension) and also psuedo seizures (no weird brain activity) vs regular with brain activity. And that he could have both"

I have some info that I need to send to you regarding seizures. It will take me a couple of days, but I will send it. I learned alot and was able to educate my doctor.

Has he had the catscan? Did it show any "white spots" on his brain?

" If it's one, the anti seizure meds (the depakote he's been on for a few years)"

His body may be use to the depakote. Did he gain alot of weight?

Okay, maybe I'm way off here but I have learned something that helps the occasional migraine and sometimes my occipital pain.

Have you heard of self-hypnosis? I didn't go anywhere to learn it, but the doctors call it something else. Either way, I purchased a book to help me with other things in my life. It turns out that even with a severe splitting migraine I can control it with hypnosis. I go lay down in the bedroom and start taking myself through the steps. In about 10 minutes I can function again.

I can't do this if I'm anywhere else. Mainly a place where I can't get away from TV or other people.

Starlia

Starlia, What is the book called and author? Sounds like something I would like to try.

Sooz, I will have to try that one.

This is for everyone who replied (trying to remember all the details so if I miss anything please be gentle) He hasn't had a cat scan (yet) but he has had an MRI (inconclusive) (open because he's claustriphobic) I really ought to type up the report that we got in the mail so you can get a better idea (his doc keeps saying he has an "intense" effect) And we won't talk about the years of self medication for ADD (speed, etc) before he was with me. The coffee's also part of that but the doc's keep wanting him to cut back. That'll SO help (not!) I don't know if you can say he's gained a lot of weight on the depakote. When we got together in '96 he weighed 104 lbs (men are NOT supposed to have hourglass figures!) and I just kept feeding him chicken fried steaks till he filled out a little. He's been on the depakote since about '01 so that's not really an issue (his highest was 160 something in '02) and EVERYONE notices when he doesn't take the meds. (a lot more short tempered) Self hypnosis really isn't an option (I don't think he'd give it a chance) even though I understand it can be quite helpful to some people. Got a book from one of "them" (the intern at mental health) about epilepsy and you and a lot of the things he was doing naturally, help (not enough but some) (high protein diet, etc) There's just so much going on and with all the interactions it can be hard to pinpoint what's causing what. And lets not go into the interesting drug interactions when a new med is added (the latest was klonopin - 3 day highly aggressive episode and sleeping for days then uncoordinated and confused) It's just so frustrating that it's taking so long to figure out what's going on. Seems like there's tests that could be run or something. He refuses to go into a hospital for testing which limits a lot of it (think it's a control issue - he's a bit of a control freak) (let's not go into what he thinks of me sharing all this with you!) Doc's are looking into an ambulatory EEG to see how the brain waves go. The local EEG tech is a bit of an ass (extremely poor bedside manner. thinks I shouldn't have to "babysit" a grown man. trust me, you want me there!!) I think that's enough for now. If any of you have any questions, feel free to e-mail me about details. I know I'm skipping over quite a lot because I've gotten so used to much of it.

Later,

Helen C

The eeg is interesting. I always feel as if I am from another planet. I don't like the pokey things they put in the cap though. I wish you could bring him here to have it done. The tech is one of the most caring people you could ever meet.

The catscans are so awful. I have claustrophobia too. They have to break out the valium and others when I have it. I hate them so much.

Klonopin is something I haven't tried cause my friend had the same type of reaction to it.

Has he been diagnosed as epileptic? or are they unknown seizures? I learned that there is a difference.

I will keep you both in my prayers

I know I'm a difficult patient, only because I don't want to use drugs...but is it me or are men worse? I didn't want to even think about self-hypnosis at first. However, after doing it on my own and finding out it helps....A LOT...then I'm a believer. All he can do is try, but he has to want to do it.

As for ADD, I understand the med issues. I hate adderal, but it's the only thing that works very well for me. I don't like the jitters I get. At least I'm not on methadone anymore. I was a royal B on it.

LOL - My hubby hates to take even an aspirin. He'd rather suffer with the pain. Me.....give me the damn drugs and give me them now. I have a very low pain threshold. I do love to apply heat and ice, massage and other alternatives to drugs as well. Whatever works the fastest!