sleeping problems

[Lovage]

I wanted to know how many people have problems sleeping at night.  I have a problem laying down at night.  I usally get up in the middle of the night and end up sleeping in my recliner.  My head usally hurts, my sinuses are clogged and i just can not get comfortable.  When i'm sleeping in my recliner i usally wake up with a headache.  Does anyone else have the same or problems to at night?  

[Lovage]

SSI/SSD makes you wait for 2 years if you do not have kidney or cancer problems.  There is a clause in there that you can get medical insurance if you have a life threatning problem.  Well  i tried that one and they said that i do not have a life threatning condition.  My condition is very bad and they do not seem to count that as one.  I'm going to try another angle of the whole insurance thing and i hope it works.  I do get finacial assistance from the hospital so that will help.  My husband and i wanted to switch hospital due to them not doing anything for me so i guess this was the best time to do so.  OHSU not has a new policy, witch if you do not have insurance you have to pay $350 for a access assurance but it only gives you a discount for labs, and primary doctors visits.  You have to pay for everythiing else.  I thought that OHSU was a good hospital for people that did not have insurance but i guess i was wronge.  The other hospital is going to give me finacial aid and it will be 100 percent of the amount with all specialist that i need to see.  It was highly recommended me to switch to Emauel Hospital in Portland.  They do have alot of specialist and are very good at what they do.  I'm looking forward to getting help if this goes good.  

LJ

[selmaS]

Hi LJ,

I also heard they can make u wait for the medical insurance especially if u do not have a certificate of insurance and have a pre existing condition.

Actually, u do not have to wait as long as some others have had.....hang in there : )

"selma"

[shanmomof3]

I'm sorry your having all those insurance problems! Did they say why you have to wait 8 months to get ssd insurance? I think i would talk to them and see if there is anything that they can do JMO sometimes it just takes finding someone who will try to help or knows which string to pull ;~) --Shannon

[Lovage]

Right now i have no insurance so im getting my meds as i go right now.  We made too much money for the program we were on and we do not make engough for private insurance.  I did get SSD but will not get there insurance until august or september.  It *****.  I do rest but i seems like not engough.  I do not have a life anymore so that helps.  LOL

LJ

[shanmomof3]

Hi LJ! Well luckily i have a great pcp who does everything he can to help with meds and such but rest is really what helps the most and not pushing myself which is VERY hard for me! Lol --Shannon

[Lovage]

That made me feel better that i'm not the only one out there that have the same problems.  I'm sorry to hear that you have to go through it too.  I believe that the doctors did miss something or did not do the surgery right.  I will be seeing a specialist in Feb and i'm looking forward to it.  I just found out that my blood pressure went down and has stayed there for a while.  My doctor would not let me leave the doctors office for a while until someone came and picked me up.  It sucked.  I finally got my seizure medication again and it seems to help but still having them. I do know that there are people out there that have them too.  What does your doctor do for you when you have these problems?  Do you have a good doctor?  I'm currently switching doctors due to them changing there policy.  If you anyone geos to OHSU in Portland oregon, they no longer take uninsured patients in there clinics unless you pay $350 for a program to get your bills discounted.  It *****.  

[shanmomof3]

I haven't had surgery yet but i completely understand all the symptoms you have because I have the same things except for the seizures and high blood pressure mine is actually low. I've gotten the same way about going out especially the slurred speech! I couldn't even order a happy meal at McDonalds for my little girl! I had to pull around to the window and wright it down for them and then i just cried! I will be 35 in 16 days and most days i feel like i'm 60! So i do understand but i do think your docs have missed something or the first surgery was just not successful. JMO  -- Shannon

[Lovage]

I have not gotten to the specialist yet due to my leg and the weather being not good.  We were sopost to go a couple of days before christmas but our van was not working so i had to cancel my appointment until Feb, 8th.  I was not happy about it but it had to be done.  My primary is trying to keep me comfortable but does not understand Chiari all that well.  She has another patient that has it and she has not had surgery yet.  I have lots of specialist working with me but it seems i end up in a deadend.  They always say that they do not understand why my body is not doing well.  I do believe that there is more that they have not caught yet or the surgery did not go the way they wanted it to go.  I do wish i had more time to make the desision about the surgery and did not do it, but i did and i can not do anything about it now.  I do feel like the back of my head is being beaten sometimes.  I get these bad pain and they take a while for them to go away.  It has been a year and 2 months that i had surgery and i still do not feel good.  They did find a tumor on my spine when they did a MRI recently and i have not had a second check yet.  They think that getting new glasses will help with my headaches so we are getting new glasses next week hopfully.  They have me on heart pills, nerve medication, pain medication, diabeties, sezures that are unexplainable, and a diet pill due to swelling that i had.  My swelling when down when they put me on the diet pill and it also made me loose weight.  So far i have lost 15 pounds in a month, which i think is good.  I have noticed that i can not feel my fingures anymore.  My left are is numb and so are my feet.  It has gotten worse in the past year.  My doctor said that my body is like having a 50 something body and i'm in my early 30's.  I have never felt this bad in my whole life.  I do not like going out in public because i do not know when i'm going to have an episode and not be able to corrdinate and communicate with anyone.  People look at me funny when i'm having an episode and i do not like it so i do not like to go any where out side my circle.  It is really sad if you think about it.  I just do not know what to do.  I keep looking for thing on the internet just to hope i run into the right article about chiari or something related.  

LJ

[shanmomof3]

Hi LJ! I'm sorry i didn't realize or remember lol that you had already had surgery. I had to go back and read some of your posts! When i was talking about the cerabellum being compressed it usually refers to someone who hasn't had the surgery. But like selma said yours could have failed or your herniation has grown again. Did you ever get to see the chiari specialist? How's your leg healing btw? Hope your sleeping better soon! -- Shannon

[selmaS]

HI LJ...sounds like ur PFD may have failed or u have other related conditions that may be affecting u.

I also know u were having issues with the drs up there in the Portland area.....has this improved?

"selma"

[Lovage]

What can be done about the cerabellum being compressed?  I have problems when i wake up like nubming in my face, not being able to communicate with anyone due to slurring and very weak in the arms, and legs. I do have the same problems during the day also, but sometimes it can be worse to the point that i can not talk or do anything. It is really concerning to my husband because he said that i act like i'm a little child or a drunk person that drank a bottle of liquor.  I keep hoping that there will be break through and it will help everyone but i know that it will not happen today.  I never thought in a hundred years that i would be having to deal with something like this.  

[shanmomof3]

After i had my sleep study done i was sent to a surgeon to see if i was a candidate for the surgery but i was not. That dr told me that i had no obstructions and my apnea was a brain issue that my brain just wasn't communicating correctly while i was sleeping. Then i told him about my chiari and he said that was most likely the cause because your cerabellum is what controls your sleep!!! So most of us with chiari will have sleep problems because our cerabellum is being compressed. It is also why we have so many different symptoms because of all the different things your cerabellum controls.

[Lovage]

My head does hurt when bending over, sneezing or caughting and especially when sleeping laying flat.  I wake up in the middle of the night with my head hurting and a sinus problem.  I also thought that was comming down sick and went to the doctors twice and they both said that i was not sick.  They did not know what to do. I have not had a CINE test done yet.  I think that is the only one that i have not had.  All my test came back alright except for what they have already found.  I knew that there was something else wrong with me but i did not know what it was and still don't.  All i know is that i do not know how much i can handle.  I'm not able to lay down flat and so i sleep in a recliner most of the time.  Does anyone know how it is related?  I have been wondering that.  

[cyberpyxi]

Up until November, I had a horrid time sleeping. It took me forever to fall asleep, I woke often with headaches, and god forbid I try to sit up when that happened! I felt like my head would explode!
My neurologist said it was either due to blockage in my CS fluid, or an excess in fluid. He ordered me a CINE MRI to monitor the fluid circulation, and a sleep study. After my CINE, he put me on Topimax to reduce the amount of CS fluid I produce.

I am happy to announce that I now sleep like a LOG! I don't wake with headaches, neckaches, or eyeballs that feel like they are trying to escape my face. I fall asleep within minute of laying down, and feel much better. I can for sure tell when I've forgotten to take my pill, because my quality of sleep is nil.

And the sinus thing... I thought I had a serious problem with my sinuses because they seemed to ALWAYS be clogged. I used to live on otc nasal spray just to sleep. I now rarely use it. I have no idea how it ties into it all, but I have to think it's somehow related.

Have you had a CINE? Do you have hydrocephalus? Do you get pressure headaches (worse when bending over, sneezing or coughing, or straining)? Perhaps the problem is with your CS fluid.

Hope you find something soon. I know how horrible this is.

[MRT09]

I am like shanmomof3. My sleep goes in cycles. Some nights my head hurts so bad that I don't fall asleep till the early morning. Other times I want to sleep 12 hours or more.
When I talked to my neurosurgeon about this he was not concerned because I was waken up by pain. On the other hand, I wake up to use the bathroom at lest 5 times a night... still loss of sleep.

[shanmomof3]

Hi! Yes i have sleep problems too but they kinda cycle. I go a week or so with insomnia and then have weeks where i cant seem to get enough sleep. I also have sleep apnea but the cpap machine doesnt help much so even if i didnt have chiari i would always be tired because of the apnea. Sorry i know that doesn't help much just sharing. -- Shannon

[mikeysmom1995]

My son has suffered from insomnia for quite awhile now, but sometimes it will ease up for awhile then return. It makes it very hard for him at school as sometimes he only gets a few hours of sleep a night.  It is not usually due to pain or HAs, he just can't sleep.  Sorry to hear you are suffering with this too. I think others here do as well.  Blessings.

Barb

[pr1nsis]

since christmas, i've had a terrible time sleeping!

i've had this dull achy headache that just wont go away... last night i just couldnt get comfortable, the weight of my own head hurt...  and trying to roll over (lifting my head) hurt...

and trying to work on no sleep is tough!!  

you're not alone!!  :/

[jorlex137]

Well it's almost 4am here and I've yet to be asleep, so yah I do.  But not always so I never know what night is going to be the long one!  

[selmaS]

Hi LJ,

Many here have mentioned sleep issues of one kind or another.....I tend to sleep on an incline for reflux and sinus problems and do much better that way then flat.

I have a tough time getting comfortable as well.

Didn't u go to a sleep clinic?.....what did they say?

"selma"