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Re: so very tired and it isn't getting better
Posted: Sun Jul 26, 2009 10:46 pm
by kteague
Mar, I do hope you are getting closer to answers. You and a couple others on here help me keep my own sleep problems in perspective. Can't say I wouldn't want to walk a mile in your shoes, because your life with all your critters seems quite charmed. But I can say I wouldn't want to sleep a night in your bed. By the way, what are you taking for the limb movements? While they don't seem to be your only problem, they apparently are contributing to the problem.
Maybe someone on here who works in the industry could explain something about this to me. But when I was on too high a dose of Mirapex, my movements were greatly exaggerated to wild flailing, and they would even happen when I was "aware" though not fully awake. (Stopped this after reducing dosage.) But in the moments preceeding the onset of the movements, there was a pulling or drawing sensation in my legs, and a similar sense in my head. I can imagine that those sensations could cause arousals, but am I correct that arousals and wakings in a sleep study are attributed to limb movements only if a limb movement coincides or is prior to the arousal? Just wondering if people with limb movement disorders may have disturbances related to but not attributed to their disorder. Hmmmm.
At any rate, Mar, sure hope you get some real sleep soon.
Kathy
3000 Rounds and $3000 Dollars A Minute...
Posted: Mon Jul 27, 2009 4:56 am
by Muffy
robertmarilyn wrote:ADM =Adrenomedullin?
Antidepressant medication, some of which are renown for REM suppression. You had mentioned Zoloft in the past. Did you take any ADMs around the time of the last sleep studies?
robertmarilyn wrote:The Allegra-D is 24 hour. I have severe allergies...What would be a better allergy medicine for me to take, that wouldn't interfere with sleep?
Phenylephrine is touted as a replacement for pseudoephedrine.
robertmarilyn wrote:Would most people who had taken Allegra D-24 thirty six hours earlier have the type of activity I showed?
No. But I wouldn't take it off the table as at least a contributing factor. I don't believe the pseudoephedrine suddenly and completely disappears at 24 hours (there's at least 2 factors at work- sustained release technology and metabolism). With horrible sleep architecture, addition of levothyroxine, and that cardiac arrythmia you posted, I think you have to take a long close look at that.
Muffy wrote:It's time for the XM-214.
robertmarilyn wrote:Ok, it's in the works. Both my husband and I are working on it.
I was only kidding about that. The XM-214 was really only a prop fed by the character "Blaine" (played by Jesse "The Body" Ventura) in "Predator". I doubt that you could hold it even with the assistance of your husband. Rather, I would recommend the Dillon M-134 (Neo had one in his helicopter in "Matrix") and mount it on top of your Mini-Cooper.
Muffy
PS - Actually, what I find to be the most fascinating about the modern era Gatling guns isn't the bullets being fired, it's the ejection of all those empty shell casings. I'm sure there's some psychological message in there somewhere.
PPS- Perhaps something akin to Aunt Clara and her doorknobs.
Re: 3000 Rounds and $3000 Dollars A Minute...
Posted: Mon Jul 27, 2009 8:35 am
by robertmarilyn
Muffy wrote:robertmarilyn wrote:ADM =Adrenomedullin?
Antidepressant medication, some of which are renown for REM suppression. You had mentioned Zoloft in the past. Did you take any ADMs around the time of the last sleep studies?
Oh, ADM meaning antidepressant medication...abbreviations will get me every time. I had been completely off of Zoloft five weeks before the June 2 sleep test.
robertmarilyn wrote:The Allegra-D is 24 hour. I have severe allergies...What would be a better allergy medicine for me to take, that wouldn't interfere with sleep?
Phenylephrine is touted as a replacement for pseudoephedrine.
Ok, I will look up phenylephrine to see what my choices are.
robertmarilyn wrote:Would most people who had taken Allegra D-24 thirty six hours earlier have the type of activity I showed?
No. But I wouldn't take it off the table as at least a contributing factor. I don't believe the pseudoephedrine suddenly and completely disappears at 24 hours (there's at least 2 factors at work- sustained release technology and metabolism). With horrible sleep architecture, addition of levothyroxine, and that cardiac arrythmia you posted, I think you have to take a long close look at that.
I had known that levothyroxine can cause sleep disturbances and that is why it should be taken in the morning (which is when I take it). That is one drug that I don't think can be eliminated because my hypothyroidism is getting worse according to the latest tests. Here is what I posted recently:
"I now have my results from the endocrinologist. This new doctor is a lot better than my old doctor but we'll have to see how open he is to things if I need to be on more than just levoxyl. My TSI was 94, T4 free was 1, T2 free was 237, cortisol was 13, and acth plasma was 18...according to the chart, those were in the "normal" range.
But my TSH was 6.97 (should be less than 2) and my thyroid peroxidase antibodies were 143 (should be less than 35). I definitely have Hashimoto's and it isn't being treated adequately. He wants to keep my TSH under 2 at all times (where as the other doctor wasn't going to make any changes unless I went over 3.5 (I was at 2.75 six months ago when the old doctor last saw me). So my levoxyl has been raised from 100 to 125mcg and I will get another blood test in 6 weeks to see where I am at then."
Muffy, I started back on Zoloft about two weeks ago. I have a hard time knowing how much I need it because my long term lack of sleep could certainly be why I think I need it. But if it is actually causing me to have even a worse chance of sleep, I would be willing to get off of it. My internal medicine doctor, who inherited me and all my former drug prescriptions...has been open to letting me decide if I need to take it or not.
Muffy wrote:It's time for the XM-214.
robertmarilyn wrote:Ok, it's in the works. Both my husband and I are working on it.
I was only kidding about that. The XM-214 was really only a prop fed by the character "Blaine" (played by Jesse "The Body" Ventura) in "Predator". I doubt that you could hold it even with the assistance of your husband. Rather, I would recommend the Dillon M-134 (Neo had one in his helicopter in "Matrix") and mount it on top of your Mini-Cooper.
Muffy
PS - Actually, what I find to be the most fascinating about the modern era Gatling guns isn't the bullets being fired, it's the ejection of all those empty shell casings. I'm sure there's some psychological message in there somewhere.
I didn't mean I was REALLY working on the XM-214 thing. I meant I was working on the ex doctor and my records. BTW, if my Mini-Cooper is a convertible, http://www.chicagotribune.com/classifie ... 999.column
where will I put my M-134?
PPS- Perhaps something akin to Aunt Clara and her doorknobs.
I had to Google "Aunt Clara and her doorknobs"...I'd forgotten about that...I loved her on Bewitched. Of course, nevermind, if "Aunt Clara and her doorknobs" means something else than Marion Lorne on Bewitched (most of those doorknobs were from her own antique doorknob collection).
I have an appointment with the sleep doctor on Aug 4 so I will have the chance to ask her a lot of questions. You want to go to the appointment with me?
mar
Re: so very tired and it isn't getting better
Posted: Mon Jul 27, 2009 8:48 am
by robertmarilyn
kteague wrote:Mar, I do hope you are getting closer to answers.
It kind of seems like I'm finding out how far away I am from every knowing the answers. At least I have excellent help here...I'd have no hope without this forum.
You and a couple others on here help me keep my own sleep problems in perspective.
Glad I can help. Seriously, seeing others who have situations much worse than your own helps you to see how good you have it. I have it really bad as far as sleep is concerned but I do have many other wonderful things that other folks lack. I remind myself of that during down times...still, I would like to sleep.
Can't say I wouldn't want to walk a mile in your shoes, because your life with all your critters seems quite charmed. But I can say I wouldn't want to sleep a night in your bed. By the way, what are you taking for the limb movements? While they don't seem to be your only problem, they apparently are contributing to the problem.
My pets are part of my therapy to handle feeling so tired...and I couldn't have them without my husband to help out in every way. As far as my limb movements, I have never been on meds for them since I had never been diagnosed with the problem before. And when I saw my sleep doctor to discuss the test results, she barely mentioned them since I think she was so befuddled by my bad sleep results...and her next objective was to have me get an EEG and MRI before she decided what to do next. And actually, she would like the advice of a neurologist, which is why she is trying to get me an appointment with one.
Maybe someone on here who works in the industry could explain something about this to me. But when I was on too high a dose of Mirapex, my movements were greatly exaggerated to wild flailing, and they would even happen when I was "aware" though not fully awake. (Stopped this after reducing dosage.) But in the moments preceeding the onset of the movements, there was a pulling or drawing sensation in my legs, and a similar sense in my head. I can imagine that those sensations could cause arousals, but am I correct that arousals and wakings in a sleep study are attributed to limb movements only if a limb movement coincides or is prior to the arousal? Just wondering if people with limb movement disorders may have disturbances related to but not attributed to their disorder. Hmmmm.
I look forward to the answer...I'm learning a lot...even about things I would rather not need to know about (esp if they relate directly to me!)
At any rate, Mar, sure hope you get some real sleep soon.
Kathy
Thanks Kathy, "we" are working on it!
mar
Road Trip!
Posted: Mon Jul 27, 2009 9:51 am
by Muffy
I would go with the Chinook mount and put it in the door:
http://www.dillonaero.com/docs/Chinook_Mount.pdf
robertmarilyn wrote:I have an appointment with the sleep doctor on Aug 4 so I will have the chance to ask her a lot of questions. You want to go to the appointment with me?
Sure.
Muffy and Mar in Conversation With the Receptionist at the Doctor's Office, Returning For Follow Up to the Follow Up
Note Muffy's superior ability to successfully debate key discussion points.
Muffy
Road trip with Muffy
Posted: Mon Jul 27, 2009 3:17 pm
by robertmarilyn
Muffy wrote:robertmarilyn wrote:BTW, if my Mini-Cooper is a convertible, where will I put my M-134?
I would go with the Chinook mount and put it in the door:
http://www.dillonaero.com/docs/Chinook_Mount.pdf
Oh yeah, that works
robertmarilyn wrote:I have an appointment with the sleep doctor on Aug 4 so I will have the chance to ask her a lot of questions. You want to go to the appointment with me?
Sure.
(watch video with Muffy as the Terminator)
Note Muffy's superior ability to successfully debate key discussion points.
Muffy
Wow, whose car will we use? After the appointment with my new sleep doctor, will you go with me to get my detailed data from the old sleep doctor? I bet he'd give it to us with you there.
mar
Making All Kinds of New Friends!
Posted: Mon Jul 27, 2009 4:30 pm
by Muffy
robertmarilyn wrote:IWow, whose car will we use? After the appointment with my new sleep doctor, will you go with me to get my detailed data from the old sleep doctor? I bet he'd give it to us with you there.
mar
No prob, we'll take the 'copter and the 134.
Hey. I've got an idea! On the way, we'll swing by Jan's and say "Hi!" to her pesky neighbors!
Muffy and Mar's Trip to the Doctor (via SLC)
Muffy
Re: Making All Kinds of New Friends!
Posted: Mon Jul 27, 2009 5:20 pm
by robertmarilyn
Muffy wrote:robertmarilyn wrote:IWow, whose car will we use? After the appointment with my new sleep doctor, will you go with me to get my detailed data from the old sleep doctor? I bet he'd give it to us with you there.
mar
No prob, we'll take the 'copter and the 134.
Great...I do get air sick...what drugs should I take?
Hey. I've got an idea! On the way, we'll swing by Jan's and say "Hi!" to her pesky neighbors!
Muffy and Mar's Trip to the Doctor (via SLC)
Muffy
Fantastic! Can we have some pretty orchestra music like they had? And since the side door will be open, I can stick my head out to barf.
mar
update since Aug 4th sleep doctor visit
Posted: Fri Aug 07, 2009 7:47 am
by robertmarilyn
I saw my sleep doctor Aug 4th and got some answers to questions we had been having about my sleep test.
I asked her why my titration pressure were raised up to 11 when I didn't have any AHIs at a pressure of 7 and 8 and she said that I was experiencing UARS (no dip in oxygen saturation but my airway was collapsing). Back when I had the sleep test before my UPPP 15 years ago, my airway was so 'not open' even during my waking time, that I had low oxygen levels even when I was awake. When I would work on relaxation exercises or try to relax while running, I would snort (not proud of that fact and I made sure it didn't happen often but that meant I didn't get to relax much). When sleeping, I didn't snore since my airway would totally close, instead I'd do a big snort to get breathing again. Once I had the UPPP, as soon as the swelling went down, even though I was still in pain from the surgery, I could breath and sleep at the same time.
A CPAP pressure of 11 is working very well for me now. If I go lower I have high apnea/hypopneas but at 11, I had another good (for me night) of an AHI of 5.1 (resmed math). For now I am going to leave the settings here since I am still undergoing medicine changes and I want that situation to settle down before working for better AHIs. (And what I am getting is pretty darn good considering what I had been getting since I started this in Feb.)
About my periodic limb movements of 10 per hour: Although this is significant and can be treated with meds, at this point the doctor thinks that they aren't a major cause of my arousals and the meds to treat PLMs can interfere with REM sleep. Both of us agree that we'd rather not treat the PLMs since they seem to be way down on the list of whatever is causing my sleep problems.
Neurologist appointment: My doctor sent all my records to a neurologist and he is going to take me on as a patient. My first appt is Oct 5. Maybe we will have a better understanding of what is going on once the neurologist gets a hold of me and my records and tests. I'm to take all my meds with me (not just a list of my meds). Both my sleep doctor and I realize that the med changes we have made recently may need to change again or I might at least need to get off of my meds for more testing.
Medicine changes/additions: July 21, my internal medicine doctor changed my Zoloft prescription to a prescription for 50mg of Pristiq. So far I haven't noticed any changes for the worse in my sleep situation (in fact my sleep seems to be getting better...probably due to another med I am taking). I see this doctor again 4 weeks later for a follow-up.
My sleep doctor told me I could try upping my clonazepam dose from .25 mg to .50 mg to see if I notice better sleep. It seemed to be helping some at the lower dose and I think it helps even more at the higher dose. With either dose, I do not seem to have any residual grogginess when I get up in the AM. Since starting the clonazepam I haven't slept in the car (with my husband driving...I promise I never sleep when I drive) and in the past I always slept once we got on the road despite the fact that I never got into the car intending to sleep.
My sleep doctor gave me a two week trial of 250mg Nuvigil. I am to call her after my 7th day of taking it and if all is well she will prescribe it for me. I've only been on it a few days and I notice a big difference...kind of weird feeling...but I don't feel sleepy. I have a follow-up appt with her in 10 weeks. BTW, she noted that I seem much more alert and bright eyed at this last visit than in the past.
Prescription and masks: My sleep doctor wrote a prescription for me to send to CPAP.com. I have trouble with contact dermatitis and it is showing up where my mask touches my face. In a few weeks when she gets the new full face mask in that came out July 20, I will go in and see if it might work for me. I will also try other full type masks. We are going to work on getting me set up with several masks that will touch different parts of my face so that I can rotate them about once a week. My IM doc gave me a prescription for cream that helps a little but not completely. In fact, for my forehead, a piece of flannel under that part of the mask, works better than the med.
Additional thoughts: I definitely feel better. I now can sleep for a few hours straight where I am not aware of waking up at all. That is progress for me. And I bet things will get better. Most of this is trial and error except where we have actual test results (and aren't sure what the results really mean ). My husband has noticed that my energy level has improved (I'm sure I could cause myself to crash and burn in a heartbeat without trying very hard because I "try too hard" sometimes) and I know I have had an easier time dealing with doctors, car salesmen (we need a new truck to haul my horse trailer), and the rest of the world. And it helps that using my machine makes me feel better because then I want to use it again the next night.
PS: My sleep doctor's office can't seem to read my Resmed card even though I make sure it hasn't been erased. So she asked me to print a copy of a month summary and a week of detailed info when I come in for my next visit.
mar
Re: so very tired and it isn't getting better
Posted: Fri Aug 07, 2009 8:26 am
by BleepingBeauty
mar, I'm glad to hear you're feeling a little better and making some progress, and I hope your situation continues to improve.
Re: so very tired and it isn't getting better
Posted: Fri Aug 07, 2009 8:51 am
by Pugsy
Mar, I just wanted to also offer my wish for your continued feelings of improvement. I am glad that you can at least report some sense of improvement in your struggles. Makes my little annoyances seem so very small in comparison.
Wishing you continued good luck.
Brenda
Re: so very tired and it isn't getting better
Posted: Fri Aug 07, 2009 9:54 am
by ozij
Hey mar, that's great news -- and it sounds like you and your sleep doctor are making a great team!
O.
Re: update since Aug 4th sleep doctor visit
Posted: Fri Aug 07, 2009 10:29 am
by Muse-Inc
robertmarilyn wrote:...trouble with contact dermatitis and it is showing up where my mask touches my face...
DermaE makes a cream named Alphalipoderm (some health food stores and Whole Foods carry it, or order online from DermaE). It contains alpha lipoic acid and green tea extract, both of which are potent anti-inflammatories. I have easily irritated skin. I use their Vitamin E gel (no oil) after washing my face with their papaya & soy facial soap, all about about 15 mins before maskup (it has not degraded the silicon in my pillows during the almost 2 yrs of CPAP). I use the cream after washing face in the morning under moisturizer and makeup. I used it several times a day when I had rosacea for 2 yrs that mysteriously disappeared; my Derm was impressive with how it calmed that condition. It might help your skin heal from the inflammation and become less reactive over time. I usually buy it (2 oz) for about $17. Good luck finding a resolution!
Re: so very tired and it isn't getting better
Posted: Fri Aug 07, 2009 10:41 am
by robertmarilyn
BleepingBeauty wrote:mar, I'm glad to hear you're feeling a little better and making some progress, and I hope your situation continues to improve.
Thanks Bleeping,
Now that my stomach doesn't feel so irritated and I feel like I'm getting some real sleep, I can tell that using my machine allows me to feel better than if I don't use it. We had an 8 hour power outage last week so I had to sleep without the machine and a night on the machine is more helpful despite the mask on my face.
mar
Re: so very tired and it isn't getting better
Posted: Fri Aug 07, 2009 10:44 am
by robertmarilyn
Pugsy wrote:Mar, I just wanted to also offer my wish for your continued feelings of improvement. I am glad that you can at least report some sense of improvement in your struggles. Makes my little annoyances seem so very small in comparison.
Wishing you continued good luck.
Brenda
Thank you Brenda,
I'll send you a ride story after I finish my ride in Sept (I have ordered a battery setup for several days of camping out in my trailer...I will give a review of how it works once I get it).
mar