Afternoon Crashing

Does anyone else have this SX?

I feel relatively OK every morning, say from 6 or 7Am until around noon.  Then I get the tingling zappies like crawly bugs and if i don't lie down the sensation gets unbearable so for the past 9 months I do absolutely NOTHING between 12 or 1 and around 5PM.

Then I get a 'second wind" and I can usually get something accomplished between 5 and 8 or 9.

I bring it up coz it happens like clockwork!

I'm beginning to wonder if it's related to the AM riba.  

mayb in the morning the evening dose has worked it's way out of the system and then when you take the AM dose it kicks in after a couple of hours and finally starts leaving the body late afternoon?

Anyone have any thoughts about this?

It drives me nuts.  It's the ONE SX that is totally predictable.

Wyntre

[debnevada]

wyn, something similar. i usually have to fall asleep about 3 or 4 and sleep for at least two hours.

then have trouble getting to sleep after the evening riba...how does that all fit in the pattern?

deb

[ladywhy]

I am pretty useless every am...except Sat. I don't know if it's because I don't have to stress out over having to go to work or not?  :)  I hear the alarm but it's like I'm about in a coma... phones don't phase me either. Employer is not happy about it...but I was going in to work late. Notice I say was...I'm always hopeful next week will be better. Thankfully I have "yet" to experience the crawley bug sensation.... sounds horrible...I'm sorry to hear you're having to deal with that. Otherwise, how's things going? lol

Well, I hope you're enjoying the weekend. The weather here (outside Philladelphia) was beautiful today...no humidity..just sunny skies. Didn't do much...but I am very happy to say, that I had some major help getting some furniture out of my living room and put in storage. It felt like I was living in storage! Especially at this juncture I couldn't stand the clutter...it was not helping the foggy brain! That's all my news.
G'night Wyn

[meki]

LMAO!

I'm useless EVERY DAY --- all day... At night though, I come alive.

No - I have the crawly bug sensation around my hairline - and on my face - and any exposed skin. It feels like air sometimes is alive. (does that make sense?)

It isn't as bad as when I was on TX - and it seems to be fading away. (scratch scratch) But it's just one of those things that you either start ignoring or you will go nuts. Ativan if it gets too bad.

I'm not sure if it is physical or mental sometimes --- It feels like lots of tiny bug bites --- like what you'd expect mosquito bites to feel like --- but miniscule and all over... itchy... and sometimes I get raised welts or red spots where it itches --- or the skin swells... so who the heck knows... maybe it is bug bites. LOL!

I have to tell you guys something. For 2 years before dx - I had no clue what was happening to me - all these weird side effects... When they kept coming clean from one disease to the next I was starting to think I was going nuts. I mean certifiably cooooockooo.

And during TX when I was just reading the forum --- you guys have absolutely no idea how much of a relief that others have had the same things...

I mean --- we're not talking one or two little things... We're talking a freaking plethora of side effects that changed and mutated constantly.

It's sad to say --- but it was a relief being dx'd with HCV finally and knowing that others were going through the same stuff. I would click in - and see the same side effect (side of the day) written about and I would go ---- phew... Ok - I'm normal - ok I don't have to panic...

And now - with the sides starting to diminish --- like 75% gone... Only the really rough ones are hanging around... It's like --- a total relief.

I don't know how to express it any better than that.

But - wyn - I think you'll be ok ---- that particular side effect (creepy crawly - like little bugs or someone with a tickly hair) is lessening for me ---- I'm 6 months post now...

Things I did to lessen the feeling: Put on a lotion or cream, drank lots of water - and got under a super warm blanket. Being out of the air seemed to help for me... So --- in the shower I felt better. Or as long as my skin wasn't exposed...

Meki

[katerika]

Took shot 13 Friday, Heme is now down to 10.7, I am still holding off on making any changes. I am crawly, and feel like I have fleas. Dr. said take Benadryl at night ( I take 1 /2 - 1 tsp of the kids stuff.) and Claritin during the day.I too am up and good until 9 am, then doze off and on until 2. My knees hurt.I have twinges and gasp and sigh.  I have bouts of Alzheimer's.  I mean I had to stop and think how to wash my hands! Meki you are an angel. I am in the middle of a shedding frenzy. Do things ever even out, and stabalize. I am awaiting results from my PCR. I am crossing my fingers.
Best Wishes to all.
Teri

[ladywhy]

Hep. Dr. told me to take baths with Selsum Blue (dandruff shampoo) for rashes, bumps and all over itchy feeling. I have yet to do it though...I hardly ever take baths. It seems like too much of a chore. I'm one lazy biatch.

[katerika]

And it's too much wotk to clean the tub. I tried an Aveeno bath, by rhe time I finished cleaning the tub I was getting itchy again. I guess it works if you have a maid.

[ladywhy]

lol

[glucklich]

"I get the tingling zappies like crawly bugs "

If it comes with the need to sleep I thankfully crash ; otherwise I have found that talking a walk really helps. I hate the feeling.

[GoofyDad]

"I'm not sure if it is physical or mental sometimes --- It feels like lots of tiny bug bites --- like what you'd expect mosquito bites to feel like --- but miniscule and all over... itchy... and sometimes I get raised welts or red spots where it itches"

I had that before treatment - started about 6 mos before. Like someone tugging at little tiny body hairs. I attributed it to liver heading south - but maybe it was an over-stimulated immune response? Anyway - glad to see it gone.

"---- phew... Ok - I'm normal - ok I don't have to panic... "

That seems a bit premature....

[meki]

Phhhhhhhllllllllllllbbbbbbbbbbt!

Neener Neener..... *G*

[moondog52]

FWIW my opinion is that it's the riba. One of of my hemo docs just shakes his head ...
he's heard it all before.  I've been off tx for 4 weeks now cuz of my platelet count ...
2nd time now I can do 4 weeks on then hve to stop for 4 weeks until they come out
with some drugs for that (3+ months? Amgem product?)

Still healing from the riba rashes. But yeah, somtimes I would just get this sensation of bugs and itching after the evening riba dose that would progress to my back feeling
on fire.  Intermittent sessions during the day ... I need to buy another back
scratcher for work.

At work I just start going unconscious around noon. Have to lay my head down for 30
minutes or so. Manganger unsterstands but folks in other cubies think I'm doing
some good dope :(

All I can say is I wish the Pegintron could find a better partner to work with. Riba is
killing me. I can't stay on the program for more than 4 weeks at time.

I'm getting off topic here, should a separate post, but from what you've said it sounds like Ribavirin side effects to me.

BTW, I took a whole week of PTO (Paid time off) just to rest and eat right. Does wonders, but goodbye vacation time this year ;)

moondog52

[wyntre9]

i don't know if i can take another 9 months of this.  it's like tingling crawly buggies on speed zapping through my body - not itching (although i get that, too, if i don't take daily antihistamines, both intranasally and orally) but it's like creepy electrical currents surging through back, neck (not in hands and feet) and if I try to do any physical activity while this is occuring it makes the sensations even more intolerable so the only solution I've come up with is to do absolutely nothing during those times.

then it gradually wears off.

MOONDOG,
i agree - i think it's gotta be the riba as it happens every day after morning dose and not just after peg and neup injectiopns.

thanks for chiming in.

Deb,

yup.  I usually crash by 1 and maybe get up around 5.  I sleep at night ONLY coz i take ambien.
LadyWhy,

glad you're getting rid of clutter.  i'm trying to do the same thing when i have a moment of ambition - space makes me feel better.

MEKI,

I'd be lost without this place.  i can't imagine telling anyone except fellow heppers about the drama of friday night shot time or the total fatigue and weakness that makes me 'rest' as much as possible.

I've been going through a period of self-enforced exile coz i don't have the energy to explain to anyone who hasn't experienced these SX what it's like and how debilitating it is.

Plus, the few times I've tried to explain I end up feeling like it went right over their heads, they don't give a darn anyway and are convinced it's sheer laziness and then i feel like I expended all that precious energy for nothing.

katerika, glucklich, goofy dad,

As usual, it helps immensely to hear others are suffering along with me.  *LOL*

(just kidding - you know what i mean)

wyntre

[Becky D]

I haven't started the tx as of yet but I do know that I have that same sensation. It kinda feels like laying in a bed of fireants. Sure hope it doesn't get worsr with tx. They put me on ativan becuz I was scratching myself until I would be bleeding. Ativan makes me so hyper. Can't really take alot of meds that don't do that to me. Same with benadryl. Don't have any answers. So sorry to hear about your side-effects yesterday. I use to have to take neupogen when my wbc's would bottom out in chemo. Can honestly say that I would have rather done the chemo that week than neupogen, That stuff amde me so-oo-oo-oo sick. Lots of vomiting and high fever and all over feel like S----. I'm I gonna have to take that **** again. Still shaking my head. Countdown is on. 51 hrs until beginning tx. Not much sleep and really bad anxiety. I feel like I'm on speed. Can't slow down. Did any of you guys do this before beginning tx?????? If so, how do you get through this?? I'm so scared. Everything you guys are going through mimick chemo side-effects. I'm I ready for this???? It took me 4-ever to feel like I was getting my life back. My hair grew back out. It's very long and beautiful again. My complexion is back and looks so healty. I put on weight and feel so good in spite of hep s/sx. Try to disregard those. Denial I'm sure. My plan was to enjoy myself as much as possible before beginning tx but that ain't happening. Have managed to push anyone close to me out of harm's way. Don't like people to see whats really happening. Tend to isolate myself in illness. Thats the big hurdle for me. Don't work and I live alone so isolation is easy. Don't have to answer phone or door so I can just fall to peices and noone knows. Can't put my kids back through this again. The ca thing was more than any of us could handle. I saw how it affected them and I know how it affected me. I guess I think I have to protect those I love from the truth. Everyone watches my weight and thats their first clue that I'm going downhill. The next is when I stop cleaning my house, doing my hair and make-up and give up my life outside of apt they know its bad. Will I go through this again. Everythign I seem to read on side-effects would tell me yes...... Sure hope I'm wrong. Take care of yourself and just know that this too shall pass. So sorry you or anyone else has to go through this. I do believe it makes us stronger people though. Remember the old saying, " What don't kill you will make you stronger." Well, we are all gonna be much stronger when this is behind us. Keep that in mind. I'll be here for you. All you have to do is ask. I'm so glad I found this site. It is a life-saver for me and I'm sure many others. Try to laugh it always helps. There is something to be said about humor.

Becky D

[niceguy2007]

i got this exact same symptom, but post tx, never on tx.  however it has subsided now that i'm almost 6 months post tx.

[wyntre9]

Don't be scared, becky.

you could be one of the lucky ones who sails through TX with few SX.

From what I understand, the effects of chemo are generally worse than TX - especially with the hair thing.  

A lot of folks have had thinning hair and a change in te4xture but not too many have lost all their hair, as far as i can tell.

ironic, isn't it, that that's our first concern!  *LOL*

Yeah, the neupogen stinks.  I've been basically in bed for the past two days, aside from dragging myself to the pc or flopping in front of TV.  Luckily for me, though, i only have to take it every two weeks instead of 3 times per week like others, including Orphan hawke.

How many weeks are you scheduled for?  Is this your first TX?  And, if you don't mind my asking, what kind of chemo did you have?

Niceguy,

Jeeeez - you had these SX AFTER finishing!!!!  Guess it was the toxins leaving your body.  that's what it feels like with me, every day, that the riba is working it's way through my system and the farther I get away from the morning dos the better I feel.

then it's time for bed.

Glad to hear the SX are gone, now.

wyntre

[wyntre9]

[katerika]

tx. affects us all differently. If you've brrn through chemo this may be a walk in the park! And as Wyntre said we are here for you.
hugs
Teri

[GrandmaA]

Hope the "buggy" feeling goes away soon.  Must be terrible. I only have 4 weeks left.
Take good care.

[wyntre9]

I swear the end of your TX seems to go on FOREVER!

(I can only imagine what is feels like to you!.

i thought it was only 2 or 3 more weeks!

Are you feeling better these days?

wyntre

[wyntre9]

katerika, ladywhy

"....I hardly ever take baths. It seems like too much of a chore. I'm one lazy biatch.

"..And it's too much wotk to clean the tub. I tried an Aveeno bath, by rhe time I finished cleaning the tub I was getting itchy again. I guess it works if you have a maid"

Just saw those comments.

hahahahaha

I'm the president of the domestically impaired club, myself.

[Becky D]

Thanks for you support. Yes, this is my first go round with this. I've been sentenced to 52 wks. That's about all I know. Whaen they told me I was postive 1 yr ago it blew me away. Was recovering from 2 major surgeries. One broken arm and one broken leg. 26 rounds of combination chemo and that was way more than I could handle. Will have all details Tues. as I am well imformed and ready to deal with this. Crazy and hard to believe that I graduated University of Texas Medical Branch as PA and can't seem to remember any of the medical details. Lost alot of memory and ability to concentrate and think so I don't know whats going on. Pretty sure that I will be able to refresh alot one day soon. Probably wont ever be able to take care of sick people anymore. Hell, I can't even take care of myself. Think I will go back to school and get degree in Behavioral Science since my mind is so screwed up now. Its gotta be a plus. LOL  I do feel somewhat relieved to know that some of my sx could be Hep related rather that irreversible chemo side effects. Mostly bilateral lower neuropathy. That sucks. I kept falling and breaking bones. Finally figured out that is was becuz I couldn't feel my feet. They always feel like their asleep and tingle a whole lot. Pretty annoying. Oh well, just another speed bump in my crazy journey thru this life. Gotta laugh cuz its the only thing that keeps me going......... Thanks for being here. I know that you guys will be a big help and great support. That can make all the difference when your going thru a storm..... Good luck on your continued tx. Wyntre, sure hope those sx get better and much easier for you. Let me know if I can ever be of help........... Thanks for the support. Any suggestions on how to get a good nights sleep???? Don't take any meds. Gotta enough going against me already.......42h 45m left. Take a deep breath right ??????????? Time to start a new chapter in this huge novel I'm writing. Sure wished it were fiction. LOL   BTW, is the chair for vice president of the domestically impaired taken ?
As I've gone thru this last 5 yrs I've found that somethings don't matter as much as I thought they did.
My friends use to joke about coming to my house and doing the white glove test to see if they could find a speck of dust. I was definately OCD about that. Now you can't find anything thru the dust. LOL Wow, how things change !!!!! Take care you guys and Peace out. Becky

[wyntre9]

You're officially nominated to be chair of the domestically impaired club.

Part of your duties is ensuring the president's residence reflects organized chaos.  *LOL*

Now you've got about 48 hours before TX.  2 days.  You'll be so glad when the first shot is done.

wyn