No plain sailing??

[heapsreal]

I have been doing well the last couple of months but the last few days have been ordinary with my two old mates returning, brain fog and insomnia, i just wish they would p---s off. I have crashed alot worse but have had a few crappy nights sleep and generally foggy and flat. Not doing too much so not from overdoing it, maybe viruses have woken up to tell me there not all gone yet and to be careful. Im on 2 weeks leave so lucky i can rest up and dont have to take sick leave i dont have, lol. I have had a couple of extra doses of antivirals and a b12 injection and will have another today to try and stop this down turn. I did have one day a couple of weeks ago and i thought i was back to square one, i was in bed all day with major fog and was achy all over etc but lasted 1 day and now this episode which is alot less intense but lasting a few days. I think its a sign to take it easy, maybe im ready to increase my adrenal hormones dhea/pregnenolone as im dosing very low but will wait till i get tested for it and see where im at.

Im sure i will feel like crap later on, its now 5am and been awake since 3am and probably wont sleep at all during the day. Just need to take a big sleepy pill tonight. bloody crashes, but i think we have to always be on guard.

cheers!!!

 

[L'engle]

Thanks for checking in, heaps! I can never tell whether I'm getting overall better because there are so many different factors. I think overall yes with the methyl b12, I do not have as much pain or crashed feeling, even if functioning is still not that high. So I'm to where I can feel not that sick when I don't do anything, but adding in activity is tricky. Are you on Freddd's protocol as well?

Good luck!

 

[heapsreal]

It is hard to tell sometimes how much you have improved but when i stop and turn around and think how i was pre antivirals, with constant aches and pains, crappy sleep and constant brain fog and the need to lie down all the time, i have improved alot. My son said the other day that he can remember when he was in grade 5(3yrs ago) and he would come home from school and i was always in bed, or going on holidays and trying to walk on the beach and get all shakey, nauseas and out of breath and have to sit down after only 50mtrs, so things have changed.

Except for this crash now, im mostly symptom free but struggle with activity, like u said its hard to manage and recover from, im hoping once i get all my hormones etc to a healthy level then my ability to recover from activity will improve as well as sleep.

I dont use fredds protocol or any methylation type protocols, i have tried them but didnt get alot out of them myself, but others seem to. B12 injections have helped in the past and i just throw it in when i crash, sort of my rescue remedy, i dont really know if it helps but it cant hurt. I mainly use antivirals and now treating adrenal dysfunction etc with dhea, pregnenolone and low doses of progesterone. Plus assortment of vitamins/antioxidants and sleep meds.

I just posted this so people know that its not just smooth sailing when recovering, plus gives me a chance to have a whinge too.

cheers!!!

 

[L'engle]

Whinge away!

 

[*GG*]

What's a whinge?

GG

 

[heapsreal]

What's a whinge?

GG

Whinge is like whinning, complaining etc word used alot by aussies who have improved on the english language, lol.

 

[taniaaust1]

Whinge is like whinning, complaining etc word used alot by aussies who have improved on the english language, lol.

Whinge sounds better then a whine

 

[taniaaust1]

Heapsreal .. Hoping its just a very temporary thing for you. Best luck.

Except for this crash now, im mostly symptom free but struggle with activity

Glad to hear you've progressed that far L'engle.


I think that is the easiest part of this illness (if one can call it easy!!).. getting to a point where we are "mostly" symptom free except with activity. I cant seem to nowdays improve beyond this and have sat at that level for ages now.

 

[Mary Poppins]

Totally have a whinge, Heaps. Here listening

 

[Rooney]

I'm sorry you're in a bad patch just now, Heapsreal.

Like you, valtrex did nothing after 8 months of trying so it's on to famvir at 500 mg x 2. We also have a similar immune profile. I've really enjoyed your posts on famvir which has given me hope for improvement.

Question; did you experience an initial funk with the drug? Valtrex made me sleepy and slow the first month. Famvir, nothing, maybe better. I've kept to the house mostly, really taking it easy and asking for more help lately and feel better just from that.

Many thanks,
Rooney

 

[u&iraok]

Whinge

"Middle English *whingen, from Old English hwinsian; akin to Old High German wins?n to moan
First Known Use: 12th century

Pronounced 'winj'"

Well, I always thought it was pronounced the same way we pronounce it in the U.S., 'wine'.

I guess you have it right over there since the way you spell it comes from Old English. We must have broken it down as we do, to make the word sound like the action: Whiiiiinnne. Especially when we say 'Quit whining!' to a child. We draw out the 'i' in quit and the 'i' in whine. More effective than 'Quit Whinging!' 'Whinging' sounds like you're doing something interesting.

But please, heapswell, grouse, gripe, grumble, kvetch away. We're listening.

I hope it's just a temporary setback.

 

[heapsreal]

I'm sorry you're in a bad patch just now, Heapsreal.

Like you, valtrex did nothing after 8 months of trying so it's on to famvir at 500 mg x 2. We also have a similar immune profile. I've really enjoyed your posts on famvir which has given me hope for improvement.

Question; did you experience an initial funk with the drug? Valtrex made me sleepy and slow the first month. Famvir, nothing, maybe better. I've kept to the house mostly, really taking it easy and asking for more help lately and feel better just from that.

Many thanks,
Rooney

Hi rooney,
i got know funky side effects from famvir just slow improvement, sounds like its working for you just keep plodding along with it.

Everyone else thanks for listening to me have a whinge, now that everyone knows what it is, lol. Also sometimes we aussies call it having a sook, lol.

Feeling much better today. Im not sure if the crash was viral reactivation, but i think sometimes our hormonal/neurotransmitters go out of whack. The hypothalamus which is generally not working properly in cfs can cause this as it controls alot of hormones and neurotransmitters and i think it just go's stupid sometimes. I imagine it like a TV playing up and you whack it and it clears up, so i just need a whack, lol.

Hard to explain, i dont think its anxiety but i get that feeling in my brain that something is going too fast and i just get brain fog and headache feeling and this causes the sleep problems and then sleep deprivation then adds to it by giving me that nice brain sizzling effect. Generally for sleep i use zopiclone and an antihistamine, plus neurontin for leg pains, but have a few things i use very rarely and generally help with sleep when im desperate. If i used them all the time it would stop working so just keep them up my sleeve. These are seroquel and mirtazapine/avanza. So last night with the sleep deprivation building up i added the avanza and took 2 doses of neurontin with my normal cocktail, this knocked me out and i slept 9-10hours. I have woken this morning feeling alot better, the brain sizzling and fog etc as settled, so my cocktail is just like whacking the tv and getting a clear picture. So its calmed down whatever was revving up in this brain of mine, like a reset button, lol.

cheers!!!

 

[taniaaust1]

Whinge

"Middle English *whingen, from Old English hwinsian; akin to Old High German wins?n to moan
First Known Use: 12th century
Pronounced 'winj'"
Well, I always thought it was pronounced the same way we pronounce it in the U.S., 'wine'.

Thanks for sharing that good to know where the word comes from. We do pronounce it as "winj"

...

Good to hear things have improved there heapsreal.

 

[physicsstudent13]

http://en.wikipedia.org/wiki/Valaciclovir

does valtrex cause brain damage? it lists as a side effect altered consciousness which sounds like terrible APHASIA or brain damage. I've been taking it because I am going DEAF but don't know if it is neurotoxic, there was a pubmed study on it and there were no reported adverse events but that is very limited and no one really knows how an individual could be DAMAGED by it

 

[Valentijn]

does valtrex cause brain damage? it lists as a side effect altered consciousness which sounds like terrible APHASIA or brain damage. I've been taking it because I am going DEAF but don't know if it is neurotoxic, there was a pubmed study on it and there were no reported adverse events but that is very limited and no one really knows how an individual could be DAMAGED by it

I suggest asking your doctor, and getting assessed and treated for the hearing loss.

 

[SDSue]

I just posted this so people know that its not just smooth sailing when recovering, plus gives me a chance to have a whinge too.

Seems the monster is never far behind us, no matter how significant the improvements. Caution is good, but a nice winge is sometimes even better. Hoping to hear you are back to baseline soon….. like today maybe. Or tomorrow at the latest!

 

[heapsreal]

blast from the past. Im going through a bad patch at the moment and trying to work out why im typing about the meaning of a whinge and what valtrex has to do with it, then i see the date when this thread started 2011, haha