cvincent

Ernie and bizbiz,

I was thinking that the sleep study would show more due to my different symptoms also. For the most part I slept about the same as I would at home, the only difference that I can think of is that it took me a little longer to fall asleep. Also, I don't have the other symptoms of narcolepsy such as sudden attacks of sleep. She did mention narcolepsy without cataplexy, however I'm thinking that it's probably not likely that I have narcolepsy. It is probably more likely some type of hypersomnia.

Momofsara,

The doctor did mention that if the Provigil works, she is going to have to fight with my insurance company. I do have medicaid/molina but if I have to make a copay I probably won't be able to take it, seeing to how I don't have a job oh well, it's all in God's hands. Anyways, I stopped and seen my doctor after my sleep study appointment and he wasn't to big on me taking a stimulant. We have been working for a long time to get my bp and heartrate under control so maybe it would just be better if I ended up not taking the Provigil. I'll have to see how things turn out.

Thanks for everyone's input

Candace

Hey everyone. I know some of you were interested in my sleep study results, so here's what I found out.

First, the reason why my doctor wanted me to have a sleep study done was because of the following symptoms:

- excessive daytime sleepiness

- very vivid dreams, even right after I layed down to go to sleep

- excessive dreaming

- waking up a lot at night

Also, I will try and put everything I found out in this post, but I'm having a hard time remembering things and am pretty exhausted from my appointment today.

So I met with my sleep doctor's nurse practitioner, who was very nice and very professional. She sat down and talked with me about my POTS/Dysautonomia and seemed to be somewhat educated on it. ( Which we all know can be a major advantage ) She then got out the results from my overnight sleep study and my daytime sleep study. She went over all the results very thoroughly and made sure I understood everything.

According to the results, my overnight sleep study, overall, was normal. Which I was not expecting because I am so tired during the day and whatnot. Here are the results for my overnight sleep study;

- Sleep latency was prolonged at 54 minutes

- REM latency was prolonged at 163.5 minutes

- The patient ( me ) obtained 600 minutes of sleep during the recording time of 735 miutes, giving an impaired sleep efficiency of 82%

- There was no detectable snoring during the study. There were only some respiratory effort related arousals and a rare hypopneic event. There was no oxygen desaturation.

- There were no cardiac rhythm abnormalities. Periodic leg movements were not seen.

-IMPRESSION: The patient had prolonged duration of sleep but with some fragmentation and there was mild impairment in sleep efficiency. There were no features of significant sleep-disordered breathing or of periodic leg movement disorder of sleep.

Next was my daytime sleep study. During the daytime sleep study I had to take a 20 minute nap every two hours. She told me that normally, it takes the normal/average person 10-15 minutes to fall asleep for a nap. The results showed though, that for the 4 naps that I took during the day, I consistently fell asleep around 7 minutes. Here are the results;

-IMPRESSION: The mean sleep latency of 7.5 minutes indicates moderate daytime sleepiness. REM sleep was not recorded, so full criteria for narcolepsy were not met, but that alone would not conclusively rule out narcolepsy. The findings suggest the need for wake-promoting medication.

So, a quick summary. Before I had my sleep study my sleep doctor suspected that I had narcolepsy. Now, because I never entered REM sleep during my 20 minute naps it is not definitive that I have narcolepsy. So after my appointment today, the nurse practitioner ordered blood work to check for narcolepsy. I'm not sure exactly how they do this but it will be sent to Mayo and I won't know the results for a few weeks. She also mentioned narcolepsy without cataplexy and hypersomnia. I did a little research and found that there are a few different types of hypersomnia ( due to different causes ). So overall we are not certain on the narcolepsy but it is still a possibility. At this point the tests, along with my symptoms, show that I do have some type of sleep disorder, whether it's narcolepsy or some type of hypersomnia. She gave me a sample of Provigil to try and see if it helps at all with the daytime sleepiness. I just have to be careful due to the fact that this drug is a stimulant and could cause a raise in blood pressure( I am being treated for high bp and tachycardia ) / heart rate/ arrythmias ( I am already at risk for arrythmias due to the fact that I am currently taking a beta blocker along with a calcium channel blocker ) and I also have MVP and some PVC's . SO I will have to see how things go. I hope this helped those who were wondering about my test results and hopeing to receive some insight to their own sleep difficulties.

( and I guess that summary wasn't very quick, was it? )

Candace

Candace - it would be great if you could let us know what the results of the sleep study show!

I will let everyone know sometime shortly after my appointment on wednesday. Hopefully they will have some answers.

Candace

Hi, brain fog has been a big problem for me the last couple months. I was having trouble concentrating, problems with word recall, slurring my speech, getting confused easily, ect. It was driving me nuts. My doctor recently put me on a calcium channel blocker, Norvasc, to help with my poor circulation and since I've been on it the last couple weeks, I have noticed a huge improvement with my brain fog I can actually think straight for most of the time and I don't get confused as easily. I still have some problems with slurring my speech, and there are still the bad days but the improvement from the calcium channel blocker has been significant and very nice I will say that though I was put on Norvasc for the poor circulation I have in my arms and legs, I havent noticed a difference in that at all. My circulation is still bad. But because it's helped my brain fog so much, I definately plan on staying on it.

Candace

Hi,

I have a question, and also needed help finding an older post. Question first:

Since I was hit with POTS, I suddenly have very weird and vivid dreams. I also find - dont know how to explain this, but I'll do my best - that when I go to bed, not long after closing my eyes I seem to go straight to dreaming, almost like lucid dreaming but not. I used to go to bed and lay in bed about 10 or 20 minutes just thinking and relaxing before starting to drift into sleep. Now, only a few seconds after closing my eyes I'm almost dreaming while awake. I also find this happens in the morning, if I wake up but decide that I'm not ready to get out of bed yet, I'll stay in bed trying to sleep but end up in and out of this dreamy 'la la land'. Can anyone relate? I know there have been many posts about POTS and vivid dreams, so I'm sorry if you are all getting sick of this subject.

I have also been trying to find a post I read a few months back, but am now having trouble finding it (brain fog!?). It was about dreaming - I think the title or sub title was 'reality vs dreaming'...something about dreaming in the mornings. I have tried entering 'dreaming', 'reality' etc in the search function, but so far havent been able to find it.

Thanks.

Hi bizbiz, what you have described is EXACTLY what I go through. Right after I close my eyes when I go to bed I start dreaming even though I'm still awake. I always have extremely vivid dreams/nightmares and have them constantly untill I awake in the morning. Also, even when I'm awake in the morning before I get out of bed I dream. I'm always tired during the day and fall asleep easily if I happen to be sitting down or laying on my bed to rest and when I do take a nap which is almost every day, I usually end up sleeping for 2-5 hours. I had an overnight sleep study and a daytime sleep study done about two weeks ago. I have an appointment on wednesday to find out the results. I'm pretty sure it all goes along with the dysautonomia, but hopefully when I get the results I will have some more anwers.

Candace

Hi, welcome to the forum. I have at least 35 of the 47 symptoms you listed, as well as some others. It definately sounds like you have POTS. I would really suggest seeing a doctor who specializes in autonomic disorders. I was diagnosed at the Mayo clinic in Rochester Minnesota in 2006 and they seem to understand this stuff pretty well. Also know that everyone on this forum is extremely helpful and supportive. If you have any questions or concerns don't hesitate to post. Also, we are pretty close in age so if you ever need to vent or anything you can send me a message. Hope some of this helps.

Candace

aww thats absolutely wonderful! what an amazing Valentines Day. It sounds like you have a wonderful loving supportive family I'm happy for you

Candace

I am on Bisoprolol and cannot function without it. It took about two weeks for me before it started keeping my heart rate consistently under control. My heart rate is now in the 70's compared to 150's. As for what my heart rate is sitting/standing/laying down , it increases slightly when Im standing and laying down but not by much. It's been running between low 70's and high 80's. Im on 5mg in the morning everyday.

Candace

Just a hunch but i bet it was the blood if you felt odd looking at it.

For the record, many years ago, i used to love it the rare times I had blood drawn from my arm...the way the blood looked like a pretty maroon color as it filled up the tubes!!

Now, oy vey! I get almost vertigo thinking about it. I simply can NOT watch. Even lying down. And no I never faint just close and get lots of notice (woozieness or loss of vision)

Now about making cookies, I use a bar stool that has a place to put my feet on (so they do not dangle)

For me sometimes i can stand and mix up all the cookie stuff at once. Other times, I sit and measure ALL the dry ingredients in a bowl, cover it. Get out the eggs, butter, sugar, etc (say for chocolate chip cookies) and put those on the counter. then I rest with feet on back of couch (over my head) When ready to mix things together, turn on the oven and let the mixer mix up things up.

I often just make cookies in the small toaster oven for myself and my room mate. Usually it's choc chip cookies. Then I make up individual cookies and put on cookie sheet in freezer for 15 minutes, Then remove cookie dough from tray and put in ziplock freezer bags.

THAT WAY, you have a tray of cookies on short notice, with little effort. Also no more getting tired baking tray after tray of cookies.

I asked my doctor about it and he said that it was probably just from seeing the blood. I do have a bar stool I could use, I will have to do that next time, thanks

Hi Julie,

I was diagnosed out at Mayo in Rochester and had a pretty good expirience. I also had a spinal tap done when I was in the hospital when I was 17 when we were still trying to figure out why I was sick. For me the actual spinal tap itself wasnt so bad. The spinal headache afterwards though, that was pretty bad. I dont want to scare you. Looking back though, I'm glad I had it done because it ruled out a lot of things. I hope this helps in some way, and that you are able to decide what to do.

Candace

I get this quite a bit. I have to check my blood pressure throughout the day and this almost always happens. I also get short of breath, chest tightness, and just feel overall worse when I take my blood pressure in my left arm. I asked my doctor about this and he said my heart must be sensitive to the pressure from the cuff and because the left arm is so close to the heart.

Candace

I wonder if the heat in the kitchen when cooking has anything to do with it, in addition to the prolonged standing?

Amber

That's possible, the oven was preheating

Candace

I have had times where I've been eating something and all of a sudden it feels like my throat muscles forgot how to work. It takes a couple seconds or minutes before I feel like I know how to swallow agian. It's a very uncomfortable feeling.

Candace

I had some blood tests last week and they had to put an IV in my arm. It took 3 times before they got it in. (I too have NEVER had needle/blood POTSY issues). By the third one, I was feeling REALLY POSTY and ready to pass out!! Luckally, I was sitting in a reclining chair. They put my feet up, head down and soon I was feelling better. The tech said that messing around with veins triggers your nervous system (including ANS). So maybe when you cut your finger, it was enough to send your ANS into overdrive? Just my thought...

Hollie

That sounds like what probably happened, because I wasnt feeling like I was going to pass out before I seen the blood.

Hi Candace,

I am so sorry this happened to you. I know it can be a frightnening experience, but it sounds like you did well handling yourself, and hope you pat yourself on the back. I have a lot of trouble cooking also. I am glad the cookies made it out ok. I would hate to see all your work go to waste!

I also wanted to ask you if anyone saw you when you fell like jell-o the second time, but didn't lose consiousness? The reason why I am asking is because that is how I feel when it happens to me. Like jell-o going down. I have told the doctors I don't think I am really fainting, but last night I was bent over and stood up and got the head rush, I felt like I was going down, and aimed at a safe place, and fell slowly so I wouldn't hurt myself. But I didn't lose conciousness. So that is how I described it to my family who laughed hysterically at me and asked if I remembered the kleenex box up my nose. My husband said he'd seen airplanes fall out of the sky more gracefully. I truly thought I had floated to the ground in slow motion. I hope this was just a one time instance for you. And I hope you are feeling much better now.

Suzy

No one seen me. I was the only one home at the time, but yeah it was weird how I just went down like that. I didnt loose conciousness but at the same time I was pretty out of it. haha that was pretty funny what your husband said I am feeling better than I was last night, thanks

Candace

So last night while my mom, stepdad and brother were at my brothers basketball game I decided that I wanted to make some cookies. While I was making them I felt ok, just tired from standing up. I got the cookie dough all mixed together and ready to put in the oven, and was rinsing off some of the dishes I used when I accidentally cut my thumb on a knife. The cut was hardly noticable, hardly any blood and didnt really hurt. And I should mention that ive NEVER had a problem with seeing blood or anything along those lines. Stuff like that has never bothered me. But as I was looking at my thumb and getting ready to rinse the blood off I started feeling really sick and lightheaded and my heart started beating kinda hard. Next thing I know Im laying on the kitchen floor, confused, and my dog is nudging and licking my face. So after laying there for a moment feeling pretty sick, I stood up and started rinsing the blood off of my finger. Next thing I know my whole body feels like jello and I start feeling really lightheaded and sick again. And then I collapsed again but didnt completely pass out. After laying there for again for a couple mintutes I carefully got up and headed to the bathroom for a bandaid. Well, while I was in the bathroom I started to feel like I was going to pass out again so I just layed down on the floor. About that time everyone got home from the game. I went to my room and layed down, and it took about 30 minutes before I could stand up without feeling like I was going to pass out. So I was just wondering why all of a sudden I passed out? is it just a combination of having been on my feet too long and seeing the blood? My sciatica has been pretty bad lately so was it from my body being stressed from the pain and then just being able to tolerate seeing the blood? Im just trying to figure this out because I never pass out.

Oh, and my mom ended up putting the cookies in the oven for me. The cookies made it through the whole ordeal and turned out delicious

Candace

I've been wondering about this for a while but Im doubtful. I used to be pretty flexible in high school, especially my hips, ankles, thumbs and pretty much every where else. I was involved in cheerleading and a number of other sports including track and field where I did long jump and high jump. In cheerleading and track things came easy to me because I was so flexible, but now Im really stiff all the time and have bad sciatica so I can hardly bend over at all. However some of my joints like my ankles and thumbs are still pretty flexible. Im doubtfull that I have this, but would it be worth bringing up with my doctor? or should I just let it go?

Candace

This definately sounds like POTS. I expirience this even when I'm at home or just talking to my sister on the phone. I sometimes find myself saying things that don't even make sense. I have trouble with word recall and sometimes slurr my words and stutter. It can be extremely frustrating because I feel like a moron when Im talking to people. Before I became sick I never had any of these problems.

Candace

sorry to hear you are feeling so down, i can totally relate, i havent been able to leave my home at all for years, cannot even sit up long enough to go outside and get fresh air, and too many years since i had any friends over or even talked to them on the phone because i cannot even talk loud enough and get so out of breath, my mom is my best friend, caregiver, my whole world so i thank God i have her, i also cannot lean back, cannot lean my head back at all or get very dizzy and blood starts pumping harder in my head, very painful! so i am constantly leaning forward, and cannot stand at all, i really hope you find some relief soon, but dont expect too much since this is all so complicated and no easy fixes, but i do hope your loneliness and sadness gets better, all we can do is find support in those who are willing to listen, most people just cannot handle all our stress! we are always here,

Radha

Thanks so much Radha. It sounds like you have it pretty bad I hope you are able to feel better someday. I'll be praying for you.

Candace

Hi Candace

I'm sorry to hear of your struggles and at such a young age. As you can see you are not alone. I've found nothing but kindness and understanding from the people on this forum. If only the rest of the world could understand. I'm in my 30's and have lost touch with a few friends. The ones I still keep in touch with try to understand but don't know what to say. Life has not turned out as I expected.

I hope you find something in life that makes you happy. Take care of yourself and be thankful your family is there for you. It's good to vent once in a while and even be angry. Then look for things in your life that are positive.

Take care

bluesman

Thanks bluesman

Thanks so much everyone it's such a relief knowing I can come here and be accepted. It's really nice to be able to talk to people who truly understand. Thanks again

Candace

I really dont like complaining and most of the time I have a hard time expressing how I feel, but I really just needed to vent/ know that someone cares.

Lately, well for like the last two years Ive seriously had no social life. Most days I'm lucky if I feel well enough to do chores around the house. When I do get out of the house, like today when I went to church, I feel awful. I have a hard time being around a bunch of people. I dont know if this is overstimulation or what but it always makes me feel worse. Also I cant handle not being able to lay down or lean back in a chair when Im feeling bad. I can't go to town with my mom anymore unless Im sitting in the car for the majority of the time because standing for more than 5-10 minutes wears me out too much. So when I do actually get out of the house and go somewhere, Im usually sitting by myself in the car. I feel like no one cares that I'm sick, like no one cares about what I'm going through. I mean, I know that people do. It's just, when no one acts like they care its hard to know that they really do. The only people outside of my home that I socialize with are an older couple that I lived with for a couple months last year ( they are old enough to be my parents ). I love them to death and happen to be pretty mature for my age so I do really enjoy spending time with them. It's just that I see all of my friends that are around my age having a life and its like they all forgot about me. It's like its easier for them not to talk to me than talk to me knowing that Im sick. Like they would rather not deal with it or something. I feel like I could drop off that face of the earth for a week and no one would notice. Sorry, I guess I just need to get used to it. I've been thinking about maybe seeing a counselor or someone to help me deal with being sick all of the time but I don't know. Well thanks for listening. I just really needed to tell someone who understands what I'm going through.

Candace

I would eat two cans of beans and a whole cooked cabbage! Tonight! Let's see if the smell bothers her!

This suggestion was great!! AHAHAA

Candace

I forgot one

eating Ben and Jerry's ice cream while watching a good movie

thats the best!

Candace

Candace,

It looks like you're definitely not alone! I shake as well - especially if I'm in an intense conversation or some sort of intense situation arises all of the sudden. I don't watch intense movie's anymore either because my body can't handle them. I often feel really cold when this happens and bundle up which helps...but not instantly.

A BB didn't help me with this but Paxil CR did (I'm not on either at the moment).

Hope you find something that helps,

Lisa

Thanks Lisa, maybe someday someone will be able to figure all of this stuff out

Candace