18 - 30 Month Plus Group

[[No...]]

Hi Coop ... yep ... temple pressure from time to time ... one side or the other or sometimes both sides ... sorry to hear it gave you a jolt of panic ...

 

I slept a couple of hours ad then woke up ... so am up for a while ... then back to sleep ... up. down, round and round ... 

[[Te...]]

Just can't sleep....the tingling started up.....darn I'm so sick of this crap.....heck....maybe I'm a lite up Christmas tree.....idk

What is it pins and needle feelings...

It's raining here .....have this witch outside....for Halloween...the rain keeps activating it......she says over and over.....come closing let me have a look at you......I was stupid for buying it.....

Sorry ..I just so uncomfortable.........

Hope everyone is having sweet dreams......

TM

[[No...]]

TM ... I hear you ... these times of symptom induced insomnia are ragged ... and we are so often uncomfortable ...

 

Hope you are getting some rest ...

 

They say the pins and needles stuff are the nerves healing ... probably true ... 

 

 

[[No...]]

WORD FOR THE DAY

 

The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another.

 

THOMAS MERTON

 

[[No...]]

Good Morning ... has two stretches of a couple of hours sleep ... not bad for an old fella' ...

 

I see we are doing the annual dance of the time changes this weekend ... ours happens next weekend ... I often wonder why we feel we need to tinker with our awareness of time ... time is present, we are present, why not enjoy each other's company as we are ... hmmm ...

 

Let's all have a good weekend ... I insist ... 

[[Te...]]

Nova

 

Thank you.....healing hugs to you!

 

My tingling has slowed down a little.....ended up getting 4 hours of sleep

 

Gosh.....wondering if these nerve symptoms  are worse due to stress of withdrawal symptoms...it's a sad  thing.....symptoms get worse....I want run or crawl out of my skin....I guess it's the  fight or flight mode.....heck if that makes me weak......I can only handle so much of this....some days seem to be easier other days are intense.....try so hard to relax but just can't..

 

It's still raining here...guessing no walk for me today

 

Think I'll have some tea...and watch the rain.....

 

Everyone enjoy the day.......sending healing hugs,......we are one day closer to healing.....

 

TM

 

 

[[No...]]

TM ... I don't know about "relax" ... especially during the storms ... "accept" maybe ... "endure" maybe ... relax ... not too likely for me ... especially when my body feels like a bucking horse trying to throw its rider ...

 

Big Fall sunshine here at the moment ... and quite cool ... out for a while this morning ...

 

Enjoy your tea ... hope you get some respite today ... 

[[Si...]]

Just checking in briefly. Trying not to spend all day on here getting myself more worked up about this bs. Didn't sleep great last night, about 4 hours, but much better than nothing. Went to bed at 1am and probably didn't fall asleep until maybe 2. Woke up around 6am I think and couldn't fall back asleep. We went to a birthday party last night and I had a lot more sugar than I intended. Not sure if that had anything to do with it, feel pretty crappy today still. Thought a window was opening on Thursday night, but it didn't stick. Head pain still kicking my butt. Went to acupuncture again last night after work. May go for a few more weeks just to see if it may help any. We have another birthday party tonight. Hmm.

 

Hope everyone is ok today.

[[be...]]

Drew, Nova, Beulah....jumping on to ride on the bumpy road with you guys for awhile. I seem to have run out of the newly paved freeway to Normal Town...

      Beulah.  good to see you here...although of course, I wish you were not on the bumpy road... and wish you could enjoy some pizza.  How is the nerve pain? All of a sudden at month 23.5 I am getting serious restless legs.  Sometimes it feels like entire restless body.  Have to get up and do something for awhile and then it's good again....but still....so much better. ....I hope you are too.

    Drew....yep, some of my best days start out with sx that I curse, dig in my heels and grab my life back. ..sometimes it backfires but that shriek of rebellion always empowers me for the moment. ...I thought of you today as I got a new sx....at month 23.5 I got a stinkin new sx. Well, mostly a new sx. In acute I used to get a squeezing pressure over one temple...it wasn't really painful...just a little scary. Today I got it on both temples at the same time.  . again not painful but lasted a little longer than the ones in acute....sparked a full blown 10 minute panic.  I recovered pretty fast from the panic ( took about an hour to loose the d/r, cog fog, anxiety etc)... So my question to you is ....with all of your head sx.. did you get temple pressure and squeezing? .  Of course it set my health fears spinning on the Wheel of Misfortune...I just can't land on  'Healed'    Roast duck and mashed sweet potatoes....you are so gourmet.    I can't wait to see what you do for TG.

  You are doing so much better....I know you are still getting sx , but it doesn't seem anything like a few months ago... It's going to keep getting better....better with a chance of sx. 

 

.....Nova....Where does this bumpy country road end ? I know there's a fork that takes us right to the brand new highway but someone turned all the road signs around. ...

    Nova, I am hoping that after you are done with your antibiotic and your respiratory bug is completely dead , you are returned right back to your 11 days of windows. 

    Thinking of everyone... Wishing all of us another leap on the healing game.....coop

 

Hey Coop, unfortunately the nerve pain is still with me. It left in my legs yesterday for 5 wonderful hours, then it started  in my ears and neck...so weird how this stuff goes ..leaves and comes back.

Sorry you are having the restless leg..I have had it off and on throughout. I bought some emu oil and it helps sometimes, try elevating your legs on some pillows..that also helps. Do you also get the leg cramps? I do.

I've been trying to live a little since the mental symptoms are mostly gone..but the physical symptoms are getting in the way.

I am so bummed out that I had to miss my sister's wedding in Law Vegas last month...I was hoping to be able to go...oh well. We still have a lot of living to do after we are healed...I won't take one day for granted ever again.

 

Yes, a lot of bumps ahead but we shall overcome.

 

 

[[No...]]

Good Morning ... another night of broken, restless sleep ... and things are okay ... mostly just in another deep wave ...

 

One more day of antibiotics ... then a couple of days to get them out of my system ... and see what is what ...

 

In the meantime ... well ... as the saying goes ... chop wood, carry water ... 

[[Si...]]

Hey nova, hopefully when you're done with the antibiotics, you'll bounce back quickly. Sorry you've had bad sleep. Seems to be my story too.

 

The birthday party was fun last night. Helps keep my mind off this stuff. Got home around 12:30am. Went to be at 1 and fell asleep quickly. I woke up again around 6 or 7 am I think p. I'm not sure as I didn't look at a clock. Could't go back to sleep but just laid in bed until my wife woke up. Been doing housework all day. Hope everyone else is doing ok.

[[No...]]

WORD FOR THE DAY

 

In an age where there is much talk about "being yourself," I reserve to myself the right to forget about being myself, since in any case there is very little chance of my being anybody else.

 

THOMAS MERTON

 

[[Si...]]

I wish I could be someone else right now.

 

Maybe got 2 hours of light sleep last night. wtf.

[[pe...]]

Yes, Siggy. Wish I could be someone else right now....

Sorry about the sleep. It makes everything harder.

 

I'm wondering if anyone is willing to list symptoms. I need to check in that this is all normal this far out. I believe it is but checking might be helpful. I think I'm falling off because some depression is creeping in. I hate that one.

 

Peace2

[[Si...]]

Yes, Siggy. Wish I could be someone else right now....

Sorry about the sleep. It makes everything harder.

 

I'm wondering if anyone is willing to list symptoms. I need to check in that this is all normal this far out. I believe it is but checking might be helpful. I think I'm falling off because some depression is creeping in. I hate that one.

 

Peace2

 

Here's my list:

Insomnia

Head pressure

Burning (mainly spine and head now)

Tinnitus

Light sensitivity

Hyperacusis

Depression

[[dr...]]

good morning...just meandering through this which nothing much to say but passing the time....

 

symptoms-

head pressure near eyes-when head pressure is bad it sets off many other symptoms

eye problems-feel tired and hurt a lot

headaches

inability to handle stress (brain feels like it is frying)

feels like I have a tight girdle around my upper torso and neck

exercise intolerance

poor sleep which is steadily improving-haven't had a nightmare in one week

 

 

Lots of other little things come and go but these are my most bothersome now.  My list is definitely shorter but it still sucks as even one can be shitty.

[[...]]

Massive stress at work lead to meltdown (at work).  Awful weekend, so sick of this and what it has done to my thinking.  Health fears had me in a spin yesterday, the dreaded MS fears were looming. Telling myself this is temporary and it will pass. On a positive, I have slept ok apart from weird dreams and a nightmare. Still feel rubbish, just not as tired. It is what it is until it isn’t !!

 

Stay strong everyone, we are survivors of this wicked thing.

[[...]]

Symptoms

 

Inability to handle stress

Muscle, joint, soft tissue pain (especially upper body) particularly neck and upper back

Fatigue comes and goes, dizziness

Depression comes and goes, this is linked to my thinking which is a mess.

Insomnia, comes and goes

Hyperacusis comes and goes

Anxiety comes and goes

Apathy, no motivation. Sometimes I get a break from this, usually evening time.

Tingling/Burning/internal heat

Head pressure is not as bad although had it yesterday horribly. Mostly it just feels sore

[[...]]

Peace, depression is very common. who wouldn't be depressed?

 

Hope you feel better, you're very strong

[[Te...]]

Oh boy.....my symptoms...

 

Upper left top teeth pain...24/7...terrible.....

Gum burning

Mouth,lip,throat burning comes and goes

Twiching,

Tingling ,prickly,numbness like feelings in certain areas...gets worse at nighttime

Creaky joints...sore joints

Bad taste in mouth and chemical taste up throat

Throat tightness and throat dryness...at times

Just feel weak....or not normal self due to numbess.tingling,twitching for some reason have a lot of issues with mouth,face,jaw....worse

Flight/fight mode.anxiety...

Oh I'm a mess...wonder if due to fast taper...I still have so many symptoms....worries me...I knw I shouldn't compare myself to you all...but I see I have several more symptoms....and this isnt all of them just the more bothersome ones....but we all heal....right

TM

[[dr...]]

TM-I am not listing all of my symptoms just ones that are most prevalent now.  I get anxiety, throat dryness, etc...but it is not hitting me like it used to so I don't list them.  Cold turkey/long taper it doesn't make a difference now.  We are where we are.  I spent two years tapering and I was getting killed three weeks ago.  no figuring this out.    Stop making yourself crazier than you are  

[[...]]

TM, I agree with Drew and I have not listed every single one too. I am guilty of making myself crazier too. Thanks for saying that it made me smile

[[Te...]]

Thanks you guys.....it just really looks so bad when you actually put down your symptoms....thanks for the comfort......wish I could start crossing off some symptoms.....guess I need more time....

 

TM

[[so...]]

Thank you for bringing up the topic of current symptoms list.  It helps to see how much better I was than in earlier months, which is good for pulling my attitude up. 

 

My current symptoms:

 

Anxiety

Head whooshing pulsatile tinnitus

Rapid heartbeat/palps

Cortisol surges at 4am every morning flight fight response

Ruminating thoughts

 

So grateful these symptoms have resolved or decreased:

 

Akathisia

Insomnia - still have it occasionally

Air hunger

Vertigo

Cog fog

Nausea

Depression - still get it occasionally

Gut distress - still get it occasionally

 

 

 

 

 

 

 

[[ci...]]

At 19 months CT:

 

Nerve pain (50% of time feels like "road rash" or "rug" burn on entire body)

Burning (total body burning, head to toe, 60% of day/night at pain level of a 6)

Insomnia (3-4 hours of broken sleep 3-4 nights a week, zero sleep 2-3 nights a week)

night sweats

 

At 14 months thought I was almost healed, but then got slammed again really bad since month 17.

 

Good News; Mental sxs left at 12 months and have not returned. No more fear, no more panic, no anxiety, no dark depression. I have my rational mind back. But occassional get that self pity depression.