Black outs

[jennylynch]

I went almost two weeks with no black outs. this morning was getting my daughter ready for school and she had just left i went to the bathroom and woke up on the floor. dang it. there goes my driving privileges again. does any one use anything to prevent their falling before surgery. or any way to stay safe from these things. i sure hurt myself today got a huge bruise on my side and hit my head on the bathroom sink. anything you do to stay safe would be great thanks.

[jennylynch]

Thank you very much. my DX doesn't like to prescribe any pain meds so he is making me now suffer til the neuro and mind you its been 3 weeks since i have seen my normal dx. so a month and a half with no pain meds and nothing to help just because he dont like giving pain meds. so i take tylenol all day and benedryl and tylenol pm to sleep. its all i can do anymore. now to just wait i will be calling tomorrow..

[*Stormy*]

I would go over the top and call your NS...the only way you get anywhere with this condition seems to be by advocating for yourself. It's sad but true unfortunately..

I understand not having the time to go to the ER and maybe feeling like you shouldn't take up their time...I felt like that too when ppl told me I should go. But I think black outs really do call for a trip there...they can't tell you that is caused by pulled muscle!!!

I have a lot of sensitivity to meds to but I am able to tolerate Lyrica and Amitriptyline as long as I don't take them during the day. I take them at about 9pm and I wake up feeling not too groggy in the morning. Have you tried either of those? I take them to help me sleep and to help with the nerve pain. Then def help with sleep but not as much with the pain as I would like...mostly b/c I can't take them during the day. Still, some help is better than none at all...Neurotin was a bad choice for me too, way too many side effects.

I wish you all the luck as you call tomorrow..

Carolyn

[jennylynch]

My stomach cant handle the steriods they gave them to me for my asthmatic bronchitis a few monthes back and i was sick as a dog with em. and i cant have normal nsaids either.  i was on ultram too and my body didnt like that either..   thank you spaceystac.. i hope something can be done very soon i will be on the phone with my pc dx on monday since i have to go to him before he can change my NS appointment at all.. thinking of going over top and calling the NS on monday morning

[Spaceystac]

Have you tried steroids? The inflammation can worsen symptoms, and the steroids can really help people with the constant pressure causing inflammation. I didnt tolerate then well the time I tried them, It is very hard when you cant take meds, I cant take normal nsiads due to chronic inflammation of the lining of my stomach, so in a way I understand what you mean Hope you find something you can tolerate but nerve pain is just so hard to treat, and hard to handle. I recently had some success with Ultram for my nerve pain (strangely), It helped a bit more than other things I have tried.         I have also read that clonazapam can reduce nerve pain and it would help with anxiety of black outs. It calms the central nervous system.         You are most likely not able to tolerate any of these, I hope you can find some relief!  

[jennylynch]

thank you.. my fiance' is here all the time when i have all the kids. i usually am not alone anymore only at college. the nerve pain is horrible. i tried neurotin but my belly couldnt stomach it. i am either allergic to many drugs or i get really sensitive to some. its horrible but something has to give soon for the pain and the scariness of the black outs

[Spaceystac]

good to know you have all those things around for your lungs. I hope your weekend is blackout free, with 6 kids around they might try to play "light as a feather stiff as a bored" with you while your blacked out.    No seriously, will you be alone with that many kids?  I hope If that is the case you have someone close to call if you need help at any point.

Im sorry you are dealing with all of this so fast, we all know too well how scary it is but just remember that Chiari is rarely life threatening thankfully.  I read your first post, I have many pains similar to you and it is sometimes very hard to function. My pain complaint that goes the farthest back for me is a left arm pain radiating from neck feels like nerve pain with weakness, so bad no meds help. You know the difference between muscle pain and nerve pain when you have them, and it is most diffidently nerve pain.

I will be thinking of you this weekend hope all goes well.

[jennylynch]

Thank you i honestly dont have time for the er this weekend im taking all the precautions i can. i am taking musenex and drinking extra fluid and using a albuterol breathing treatment until monday when i can call the dr. i have 6 kids this weekend and a daughter that just had tonsils out and she is also really sick she has the same cough and cold. wow never thought in life i may have to put my health up first. it used to be the last thing i worried about but the way it looks im gonna have to change that

[Spaceystac]

If you have continued issues with swallowing you need to got to the er.  If you get a cough or feel like you have fluid in your lungs go the hospital. When you get swallowing problems you can get  pneumonia easily due to fluid being able to "go down the wrong way" and it can be very dangerous.

[jennylynch]

I am scared to go to the er. I have been going there alot before my diagnoses for all my pains and symptoms because nothing done helps and we had no answers. now i feel that we have an answer to the pain they are gonna not treat me or treat me wrong.. Will the er be able to help me at all is my problem. we have waisted so much time in the er for them to tell me oh u pulled a muscle for my neck and arm pain..

[*Stormy*]

That is RIDICULOUS!!! They should have you seeing a specialist today!! Your symptoms are now compromising your safety and they shouldn't be ignored. Have you thought about going to the ER if you black out again?? That is one way to get the attention you need right now!!

Carolyn

[jennylynch]

i agree.. if they wont let me after i see this guy im calling my insurance for the referral and maybe they can help. this is getting horrible im getting more and more black outs and this throat thing is nuts.. i wish they would stop arguing it with me

[selmaS]

  I would tell ur Dr...I choose to come to u, and I pay u to get me the best care, I would appreciate u working with me on this....and , that if they want u to go to this other dr, fine, as long as u can also get an opinion from  the dr u selected.....otherwise u can fire  this dr and get a new one...I would not tell him that...or do nething until u find a new one, but they do work fur us.,...not the other way round,.

  "selma"

[jennylynch]

honestly i called the family dr since they are the one scheduling my appointment.. im very upset right now told her i have new symptoms. that im blacking out regularly and yea tonight had my first public black out... i felt so embarrassed... and then now i cant swallow it feels like everything is stuck in my chest and i have to gulp to get anything down.. what is wrong with me.. they told me to what the two weeks to see the specialist and dont worry about my symptoms. and my insurance wont pay for me to go to the specialist i want to go to even though they accept my insurance they need a referral and my dr wont give me a referral to them because they only work with this dr i have never seen. im so UPSET

[selmaS]

    

   No worries : )

[jennylynch]

THank you

[selmaS]

  

   Call....u will never know what they can do to help if u don't.

[jennylynch]

SO the medical rehabilitation dr i went to a week or two ago said if my black outs continue i should call her. but i am wondering what for? I now have had Two today and really wonder if i should call or just wait out the next couple weeks... Should I call her?

[jennylynch]

thanks selma

[selmaS]

Well Like I said that will help with balance, but not a drop attack......it is one more item to fall on or on u....

My fall was on concrete...no fun...especially mid fall I was aware I was falling as I was aware I hit too...ouch.

The walkers with the seat always seems like a good idea when going out shopping as I am always looking for a place to sit shortly after we get out in the store....

And at least u will not have to buy one for after surgery for the short time u will need it..I used one mayb the first 3 weeks....

"selma"

[jennylynch]

My father has two of the walkers with the seat on them and i was honestly thinking about using one when i go "out" or to school at home at least i know 90% of the time ill hit carpet but being out i know its all hard concrete.. i think i will add that to my list of things to ask the neuro

[selmaS]

I have had a cane for over 10 yrs now, and had a cane with me when I had that fall ...it doesn't help when u go "out"....

I was told to use a walker when I came home from the hospital...u can see it in a pic in my profile page....DH is sleeping on the floor next to me...I called him my warden as the walker looked like bars...lol....

I had the walker from one of my surgeries on my ankle.....

The cane helps with balance, not the drop attacks.......

"selma"

[jennylynch]

Im glad someone understand. I guess now i know im not the only one anymore. I know i have been dealing with being a klutz for many years so i think i been having problems for many years. I was always off balance and falling and breaking bones and the dr back then never ran tests just said must have fluid behind ears so.. now i know it was not jsut me though back then i still am horrible i fall all the time without blacking out too. i trip on my own feet and i walk side ways i swear cant walk a straight line.

Im just wondering has anyone like used a walker or cane or something before and after surgery as your own protection?

[selmaS]

Oh I know...I was with my DD we went to NYC to see a show and while we were walking to the show I had one...I sprained my ankle really bad it hurts now still ...and I tore the meniscus in my knee..and had to have 2 surgeries to repair the damage all b4 I got my chiari dx...so I know what u mean..that last one had me at the point I would not go back to work till I knew y I was having them...

so, yeah I understand.

"selma"

[jennylynch]

thank you selma i have informed the dr's i have seen and all they recommended was to be careful. i wont see a neuro til the 7th of February and it cant come fast enough this is so scary to do anymore. Im scared im gonna hurt myself bad one of these times