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Feeling a little low- 30 days in.
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TheManseHen Offline

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Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

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Post: #1
Feeling a little low- 30 days in.
Greetings Fellow Hoseheads,

I'm feeling a little low today. I expect that it isn't uncommon to have sort of an anti-climactic phase after the initial boost of encouragement and initial hint of feeling better.

I think what is getting to me is this. I've had Trigeminal Neuralgia (it used to be called Tic Douloureux) that affects the nerve just to the right side of my nose, on and off for years. It was initially treated with Carbamazepine (generic of Tegretol sp?) That is an epilepsy drug that even many epileptics refuse to stay on. It worked, in that it took away my T.N, but it left me tired, often sleeping 16-20 hours for days on end, nearly unwakeable by husband etc. In time I seemed to adapt to it "okay" and those periods would be rare. Now I know that perhaps the apnea complicated things there too. So a double "sludge through mud" wammy feeling wise.

A couple years ago, knowing that T.N often occurs and disappears for seasons of one's life, I weaned myself off the Carbamazepine to see if I still suffered from T.N. To my delight, it had passed and I was free of that pain for the last couple years. I'm guessing you know where this is going...

Well a few days ago, I woke with the slightest hint of that nerve feeling irritated but it went away as the day went on. Today, I woke with more of a strong suggestion vs hint, of it.

I am slightly encouraged that there exists a "total face mask" though apparently it can be hard to get fit just so. that might be an option.

I hate to face being returned to living on Carbemazepine, but as C-pap is here to stay (at least for the foreseable future) I may not have a choice.

I wonder if I was able to get a mask that didn't touch that are of my face at all, would I be able to have the best of both worlds. I also wonder if I will in the meantime with the mask I have, irritate the nerve to the point where it comes back with a vengeance and stays.

I've searched the boards and not found anyone else who has dealt with this, though surely others have. I found one person's post who thought they "'might have" T.N but that's it.

I might possibly be able to do a full face mask as it sits further out than my particular hot spot, but as the nerve lives from the side of nose out to under the ear somewhere, I'm thinking even though my pain isn't out that far, probably not a good idea to sit on the nerve path.

I'll ask my Sleep doc to send me to a neurologist to oversee the meds. In the past G.P's have done so, but having c-pap and T.N I want someone who might know of newer better ways to manage the pain.

Meanwhile, sleep doc had said 5 weeks ago, very laid back as he is, which I LOVE, So I'll want to see you, say maybe late January, early February. I just got to calling back to see about an appointment, stupidly thinking I could probably get one in 4 weeks or so max. Well they are booking for JUNE right now.Thankfully I was found a cancellation for April 1st...meanwihle They said they'd ask him about squeezing me in sooner. Boy do I feel dumb.

They have been flooded as the University of California went with Anthem Blue Cross which covers medicare as well, and I'm told they are flooded.

If anyone has any bright ideas, crazy ideas, funny ideas, I'm all ears!

Susan in a slump in San Francisco
01-26-2015 06:55 PM
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Sparkle Offline

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Post: #2
RE: Feeling a little low- 30 days in.
(01-26-2015 06:55 PM)TheManseHen Wrote:  If anyone has any bright ideas, crazy ideas, funny ideas, I'm all ears!

Susan in a slump in San Francisco

Hi Susan,

I'm sorry that you are feeling in a slump - this will pass. Stay here and email all you have to - we will all keep you lifted up.

So ok, you asked for crazy ideas - here's mine. I have never heard of T.N. so I don't know if it will work. But it did work for me for a cold sore and while it might sound trite; honestly it was a miracle. I had a cold sore that kept developing on my face just under my lower lip above my chin jaw line. I always knew when it was going to break out because before it did I could feel it tingling underneath the skin. When it did break out it was one nasty looking thing! I got the cold sore when I was sick, or tired. Sometimes I got it when I was tired due to my period. The tingling sensation would drive me crazy. So, one day I took an ice cube to the area where the tingling was and kept it applied there as long as I could stand it on and off throughout the night. My intent was to numb it to get rid of feeling the tingling sensation. What happened was the cold sore never broke out ever again.

So remember - I'm not a dr. and this isn't based on anything medical or scientific but dumb luck but I thought I'd mention it.

Tricia
01-26-2015 09:49 PM
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OpalRose Offline

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Post: #3
RE: Feeling a little low- 30 days in.
Susan,
I am sorry to hear about the pain you are in. I don't know anything about T.N., but a few years back out of the blue I started to have pain on one side of my head that ran from the back of my ear to the front temple area. Almost like a headache that never goes away, my doctors ran all sorts of tests, and thought that the nerve endings were inflamed. It eventually went away, but if I get stressed, I feel it could start up again. So I can understand your feeling low. Please see your Doctor as soon as possible and get this under control. Hopefully your doctor and DME or whoever you use to get your supplies can work with you and find a mask that won't irritate this area.
Its important to keep your CPAP Therapy going. Keep us posted here.

OpalRose
(This post was last modified: 01-26-2015 10:27 PM by OpalRose.)
01-26-2015 10:25 PM
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TheManseHen Offline

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Posts: 243
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Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #4
RE: Feeling a little low- 30 days in.
Thanks Ladies! Your kind words are encouraging. I'm still hurting at day's end, but I know that there will be some type of work arounds/answers, I'll just have to find them, and get docs to help me do so. Sparkle, ouch, I hear those are very painful, and I have many friends who report as you do, the correlations to stress and hormones etc.

I made myself smile earlier whilst feeling sleepy watching Antiques Road show, I wanted to put my mask on lest I felt suddenly overcome with sleep. It was irritating that area. So I held the nasal pillows in place a while, and played with the P10 headstrap (if you can call it that, more like a headband!) thinking "now if I could just rig this thing up atop my nose, to the top of my head, I think I could live with this one...(-:

I'll expect folk HAVE rigged their own!

My sweet wonderful husband said "just go ahead and get yourself another mask to try!" so that is what I shall do. If I hurt less tomorrow, I'll mosey over to the DME and see what Models I might have a look at when I pick up this months nasal pillows. Then I'll go try out supplier no. 1 with return insurance and see what can be found. I decided by days end, if I have to go back on the Carbamazepine to stay on C-pap, so be it.

I also wondered, if the T.N doesn't return full force, but only when "irritated" maybe having a bevy of masks, that press somewhat different area's each night, might be the way to go, perhaps by change, I can avoid the nerve pain flaring?

Sweet Dreams everyone,
Susan
01-27-2015 01:35 AM
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archangle Offline
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Post: #5
RE: Feeling a little low- 30 days in.
An Oracle oral mask might not touch you in the area in question. However, it has some drawbacks. Check the description in the useful links in my signature line below.

Perhaps an over the nose nasal mask or full face mask might do the trick, since it touches a different part of the nose.

Perhaps there's a different med available now for the TN.

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
01-27-2015 05:56 AM
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me50 Offline

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Post: #6
RE: Feeling a little low- 30 days in.
yeah I was wondering if neurontin would work for that. I don't have a clue if it would or not cuz I am a very non medical person now and certainly not a doctor physicians assistant nurse practitioner or nervous or anything like that but my better half used to take that at one time for more problems with some facial nerves
01-27-2015 08:42 AM
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TheManseHen Offline

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Posts: 243
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Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #7
RE: Feeling a little low- 30 days in.
Arch-me 50...Oracle...will read review, thanks for that suggestion!

Me50....well you aren't doing too badly with that one (-: Neurontin is used for some folk with TN and it is my understanding that it is a bit easier to "take" (the effects) than Carbamazepine/Tegratol. I have heard Gabapentin might be more tolerable too. We'll see what the docs say. Thank you.

The area of "touch me and I'll kill you" on my face is the area you would touch if you put a finger or two, right alone the crease at the base of the right side of your nose, where it flares out. So you can see how many masks would potentially touch there. Last night I jerry rigged (sp?) my p10 with a folded tissue where it presses, to see if perhaps diffusing the pointedness of the bend in the mask, might make for less discomfort. Too soon to tell, but I didn't wake with as much "pinging" of nerve in the area as yesterday.

Ya'll are the best.
Susan
01-27-2015 11:25 AM
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archangle Offline
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Machine: ResMed S9 AutoSet
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CPAP Software: ResScan SleepyHead EncoreBasic

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Post: #8
RE: Feeling a little low- 30 days in.
(01-27-2015 11:25 AM)TheManseHen Wrote:  The area of "touch me and I'll kill you" on my face is the area you would touch if you put a finger or two, right alone the crease at the base of the right side of your nose, where it flares out. So you can see how many masks would potentially touch there. Last night I jerry rigged (sp?) my p10 with a folded tissue where it presses, to see if perhaps diffusing the pointedness of the bend in the mask, might make for less discomfort. Too soon to tell, but I didn't wake with as much "pinging" of nerve in the area as yesterday.

How about a Breeze Sleepgear or one of the total face masks like the Fitlife?

Get the free SleepyHead software here.
Useful links.
Click here for information on the main alternative to CPAP.
If it's midnight and a DME tells you it's dark outside, go and check it yourself.
01-27-2015 02:51 PM
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Sparkle Offline

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Machine: Res Med Air Sense 10 Auto Set
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Mask Make & Model: ResMed Quattro
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CPAP Software: SleepyHead

Other Comments: 3 brothers on CPAP; rescue mom to Bootsie Bella; wishes the APAP matched the decor in my bedroom :)

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Location: Northeastern MA

Post: #9
RE: Feeling a little low- 30 days in.
Hi Susan ~ I think I read it on here - someone uses one of the eye masks that block out light with the CPAP mask. I wonder if you tried one of those in the time being - just lowering it bit to cover the affected area and maybe it will do the same thing you were trying to do with the napkin?

Yes - we are getting smacked with snow - I was out of work early yesterday and work is cancelled today and tomorrow.

Knock on wood - no electricity outages. Dare I say this? I am rarely affected. I lived here for seven years. It is a new (7 years ago it was new) townhouse development and there is underground utilities. I had eggs and toast for leisurely breakfast, baked an apple pie today. Had a hamburger for lunch - really enjoying the down time Smile and I don't have to worry about shoveling - I love my garage! Smile

The best part of all of it - I'm not sleeping the day away! An occurence like this would normally mean I'd be in bed 'til 1pm, eating my first meal of the day at 2:30, never getting out of my pj's and as I ate I'd be too tired to bother clearing off the counter or taking care of the dishes.

I am very happy to report that dishes and cleanup are all done as the meals were prepared. My kitchen is pristine. I was up and dressed at 9AM - Life Is GOOD!
01-27-2015 03:45 PM
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TheManseHen Offline

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Posts: 243
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Machine: RedMed A10 Airsense 10 Autoset
Mask Type: Nasal pillows
Mask Make & Model: Resmed Airfit P10
Humidifier: One that came with machine
CPAP Pressure: 7.6-14.0 EPR 3
CPAP Software: ResScan SleepyHead

Other Comments: Started C-pap Boxing Day 2014. Tortured sleep more or less since 2000. Trigeminal Neuralgia.

Sex: Female
Location: San Francisco

Post: #10
RE: Feeling a little low- 30 days in.
Oh Sparkle, I just LOVE those kind of days. Glad you are enjoying one! And still have power to boot.
Susan-----still in Jammies at 1:32 pm...but have my "maid" coming at 3-8 so I'm saving up for working with her.

(Any proximity to actual "maid" is imagined, a wee girl from our church who's mama is my local BFF, offered to help me weekly when i first arrived and had back pain, I pay her a token wage, treat her like my daughter and spoil her when possible. We chat as much as we work, but she helps me stay focused on the task at hand, and she can bend and climb up places I can't get to.) That said she's a gem and a real encouragement.

Susan
01-27-2015 04:34 PM
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