Valtrex, daily suppressive therapy and dizziness/exhaustion?

[DecievedAndDealing]

So I just started suppression therapy 3 days ago and I was wondering if anyone has experienced increased exhaustion while using Valtrex? I've used Valtrex for an initial 10 day cycle then again for two 5 day cycles and noticed exhaustion but contributed it to life since I'm a full time student and part time worker. It's been summer for me since Tuesday so I've had a lot more time to relax but I'm noticing that I'm extremely exhausted and could sleep pretty much when ever. My body could still be catching up from the sleep deprivation before my finals, but I feel like I have a pretty constant headache along with my exhaustion. Anybody else experience this with Valtrex?

[willow]

Hi, i experienced dizziness, unawareness, dissorientation and a deffinate fatigue while on my first dose of valtrex, i couldnt even drive for a couple days!

That was back in jan whn i had to take it for a week ..

i didnt have symptoms tho....

i had a minor ob a week ago and tookk valtrex again (500mg 2x daily for 3 days) and i barely noticed a thing...

i.m.o. maybe talk to the doc who prescribed valtrex to u, and see if you need a lower dose for a while and then slowly make your way up to a reg daily suppressive dose?...

I read on here a few people found it helpfull to cut the pills in half for a while. Half in am half in pm and it helped them!

Hope this helps a bit! xox

 

[derp]

I don't have Valtrex but I have been taking acyclovir for suppressive therapy for a week now and I just stopped taking it today because it made me really dizzy. Plus headaches and fatigue. I didn't think I would give me any adverse side effects because I'm asymptomatic but apparently I was wrong

[WCSDancer2010]

These symptoms are not unusual ... AND, there are lots of meds (anti-depressants are notorious for this) that can do this kind of thing when you first go on them. My recommendation is to cut the dose in half and see how you do. If you can deal with that, stay there for a few weeks, then up the dose. Sometimes the body just has to get used to the medication and the full does is too much for it at first.......

[Orngpeelmafia]

Also make sure you're drinking enough water :)

[DecievedAndDealing]

I will start cutting my pills in half! I napped for 4 hours yesterday then slept for 10! As always thanks for all the input!

[Silliness]

I was almost useless on the 1g 2 times a day doses of valtrex when I was first diagnosed. I couldn't keep thoughts for long. Which was hard cuz I'm a teacher... Now on the 500mg once a day i am fine. Although I do notice I fatigue easier.

[whitedaisies]

Does anyone find that Valtrex doesn't really help keep outbreaks at bay?

[WCSDancer2010]

@whitedaisies

 

In the first year, your body is trying to beat down the virus ... and you have no antibodies to fight it ... and if your immune system is compromised (because of stress ...which can be dietary, emotional, or physical ... illness ... and even possibly genetic factors) when the virus first gains entry, it's entirely possible that the Valtrex can't control it on it's own ... but it may be containing it so that your OB's are not as bad as they would be.

 

You can try going off and seeing if the OB's get worse or not. Or you can work on helping the Valtrex by getting your life and health in order .... either way, over time, it should settle down ;)

[whitedaisies]

I went off for 3 weeks, burning started again in vaginal and anal area. So I think you are right, its just reducing severity of outbreaks and not totally controlling them. UGH! I am taking vitamins, lysine, getting life in order, etc. I hope it settles down sooner than later....I just want to feel normal again physically.

 

Thanks Dancer

[whitedaisies]

I must tell you....I feel like a total freak.....so many people on here are saying they have one outbreak a year, maybe two, or they feel a tingle and Valtrex takes it away. It's been almost 6 months and I am trying to not be upset about it, but I haven't felt normal down there for 1 flippin day! And because I can't get a positive result, not getting hte proper treatment yet...maybe I should try the other antiviral flamivir? Anyway, I think I would be ok with having herpes, if I actually had an outbreak, it went away, and then came back a few times a year. I have no compromised immune system that I know of. So wtf! I hate to say it but why me?! I know that's so unattractive and horrible to say, but come on! Herpes has been far more than just a skin condition for me...it's been totally disruptive to my everyday life. And I just want these outbreaks to stop!

[DecievedAndDealing]

whitedaisies, I know how you feel. I was diagnosed and had my first outbreak in late April/Eary May but I contracted herpes back late January. I had flu like symptoms off and on for a couple months then drunken rough sex triggered my first outbreak which was brutal and almost lasted an entire month! Since then I've had 3 other small outbreaks. I feel like my vagina will never be the same because it's been almost two months of constant issues. Now I'm on surpressive which I hope will help instead of just putting me to sleep and giving me headaches! But I just started it and had an outbreak when I did so I have yet to have that moment of "oh everything will go back to normal" or "you will be able to have sex again at some point in life." Hang in there girl. I'm totally with you. We just have to believe what all these experienced people are saying and "drink the kool-aid" so to speak.

[whitedaisies]

Thank you so much Deceived and Dealing. It's so funny how a complete stranger somewhere out there in cyberspace can help! I am so trying...really I am. With everything I have. I want to drink the kool-aid....it just seems like such a long road and I am scared. Thank you!

[WCSDancer2010]

@whitedaisies

 

I hate to say it but why me?

 

Why NOT you?

 

There is no rhyme ore reason sometimes why one person's experience of any medical condition is different from anothers. There are studies where two people have had pretty much identical back issues ... all X-rays/MRI's look the same ... but one person is in agony and the other just complains of some back pain when they overdo it. I see it every day in my office. So while we have all kinds of general GUIDELINES of how H *should* represent, it's only the average experience .... there are always those on both ends of the spectrum. And you are on the "lots of prodromes" end of the spectrum. And I get it, it SUCKS.

 

But in reality, you have only had this a very short time. I see this time and again on here. People who have had H for a few weeks or months, who want everything to get back to normal NOW. I keep reminding people that we have the potential to live about 4,000 weeks give or take a few hundred. So a few weeks or months is nothing in the grand scheme of things. We've become accustomed to modern medicine "fixing" everything immediately ... we have forgotten how to live with discomfort (emotional or physical). And we have forgotten how to take stock of what might be making things worse because we can normally medicate something into submission so we can get back to "normal"....even though it is still there, and we are still "broken" underneath the bandaid of pain killers and such.

 

So, my advice is to use this time to learn about your body and to learn patience. There is a lesson in every experience and this may well be your lesson my friend. Keep working on reducing stress. Use the search feature here to look up past conversations about diet and food triggers and try some of the suggestions you see there. DO talk to your Dr about what else they can do to help you (lidocaine cream may help to reduce the constant itching/pain a bit). See how you can become empowered around your health and well-being through this, ok?

 

There's no kool aid to drink ... just lessons to be learned. So sit with yourself and ask what YOUR lesson is... patience, grasshopper, patience.... it will come ;)

 

 

[whitedaisies]

I understand your position dancer, but honestly, I have never taken any form of medication beyond tylenol for menstral cramps and I barely take that. I stick it out wiht pain I've had 3 kids vaginally (natural), breast fed them all....definitely not pain free. I am not impatient or wanting a quick fix. I want to get herpes like everyone else. I don't think that's too much to ask. I am being empowered but no doc will listen to me without a positive test and so far nothing! So forgive me for the self pity, I know it isn't attractive or helpful but its how I am feeling. I think the hardest part of all this, I can take the pain, I can take the itching, I can take being woken up in the middle of the night with prodomes, I am totally fine with all of that.....it is the fact that it is contagious plus all of that that is difficult to deal with. I know the facts, I am educated about them, transmission etc...but if the symptoms never stop then what? So, yes, I am going to therapy, in a better place emotionally, doing the right things and no change, so hard to have patience when you are doing all you can and not seeing any results, I am a trooper, I really am, been through lots, and likely will be through lots more, but I am growing tired. Appreciate all your advice...just tired.

[WCSDancer2010]

Remind me - how long have you had this? Are you over the 4-6 month hump? If so, I'd say do the Western Blot test ... it's the gold standard of Herpes testing and you would also be working with Nurse Terri Warren who is one of the top Herpes specialists in the USA. I'll put the info below for you... it will give you a definite result that you can take to your Dr's... and Terri can advise you on it too. You may have to pay part/all out of pocket but I think it will we worth it ... if you need to spread out the cost, Care Credit is a great medical credit card that gives you interest free payments if you pay it off within a reasonable time.

 

If you are under that 4-6 month period, I'd wait and re-test normally at about 5 months from the time you believe you got H.

 

How to get the Western Blot test:

 

1) Call the University of Washington Virology Dept. at 800.713.5198

(http://depts.washington.edu/rspvirus/documents/hsv_western_blot.pdf

and http://depts.washington.edu/herpes/faq.php).

 

2) They will mail you a kit (free of charge) with instructions, a vial, a requisition form, and an appropriate box with ice pack and biohazard sticker that you will need to use to mail your vial back to U of WA.

 

3) Go to your doctor with the forms. Your doctor has to give you 2 things: the requisition form for the U. of WA, and a lab order for a local lab to draw your blood.

 

(If you can’t get it run locally you can become a phone patient of Terri Warren's at the Westover Heights Clinic, and that her organization can order the test for you through Quest Labs. Apparently after she protested some years back they agreed to let her continue ordering out the test through them. This is likely how you will have to proceed but the "regular" process is below)

 

4) Go to a local lab with your doctor's order, have them draw your blood and spin it, and then give you back the vial with serum.

*Here's the problem: most labs will REFUSE to give you back your vial with serum. Labcorp and Quest both turned me down citing their corporate policy. I had to find a small independent laboratory in my city that was willing to do it. So, be prepared to call around. The lab I found charged me $25 for drawing fee*

 

5) Pack the vial of serum, the requisition form, and a check payable to the Univ. of Washington (currently the cost is approx. $162) and send it fedex overnight in the box provided by U. of WA. You'll have to pay for overnight shipping. Also, U. of WA does not bill insurance for anyone outside of WA state, so you'll have to pay upfront and then you can try later to get your insurance to reimburse you (highly unlikely though!).

 

6) Not all Fedex offices will accept a "clinical specimen" shipment. Call ahead of time the general fedex national number and ask them which Fedex office in your area is designated to accept dangerous goods and clinical specimens. They will make you place the box inside one of their fedex "clinical paks." I did not have to fill out a dangerous goods form, but be prepared to describe in detail how you packed it. Here's a post I found on another website that helped me a lot with step by step instructions: http://www.racoon.com/herpes/WB_test.htm

 

7) Your doctor will call you with the result. It takes about 2 weeks.

[whitedaisies]

I am on my 6th month! Happy New Year gift! I did a blood test a week ago...it will take another week to get it back. If it comes back positive, I am ok, did one for shingles titer as well (chicken pox). If it comes back negative I will do the Western blot.

 

Since I have had such a hard time getting this thing under control, I worry I don't have enough antibodies built up for the blood test to detect....and still be negative even though I have the virus....is this at all possible?

[WCSDancer2010]

Your symptoms may have nothing to do with your antibody titres so I wouldn't worry about that. It may be that your nerves are just more sensitive. Just as my back patients may have two different experiences with the same back/disk issue, same goes for H patients.

[Sparklepony]

I've been taking Valtrex for awhile now (A month and half or so...?) and at first I got slightly dizzy, but it could have been to increased heat (stupid body being super sensitive) and/or some dehydration. I also notice that I get more headaches if I don't drink enough water which may or may not be a side effect. Other than that, nothing really to notable. The tiredness might not be a side effect of the meds completely, but your body adjusting to having herpes. Fatigue is one of the symptoms of outbreaks.

 

Also, I noticed Dancer was commenting on some back pain? or sensitivity? So sorry, so lazy and didn't read through everything but I had some back pain towards the end of my initial outbreak right at the end of my spine. I'm pretty sensitive with my body and I chalked it up to the virus sort of "locating itself" there. I notice now that if I push open a door with my hip or back or something that it tingles for a few minutes.

[WCSDancer2010]

@Sparkle ..

 

I was using the analogy of back pain experience being different for different people even when they have the exact same problem ...just as the H prodromes and OB's are different for different people...so yeah... it helps to read the full thread sometimes ...LOL

[ChemistChick]

So I'm also taking valacylcovir daily (500mg) and find that I'm tired all the time. I could sleep 10 hours at night and take a 4 hour nap during the day and still be tired. I just bought a pill cutter so I could cut the dose in half to see if that helps at all. What tips do you guys have for energy? I'm going through my phd candidacy right now and have a lot of work to do for it and can't see to find the energy or concentration. I'm glad to see this is a common problem and that I'm not the only one!

[WCSDancer2010]

Try the half pill ... and maybe some B vitamins ... and try to not over stress ....

 

Other than that I hope some others chime in here.... I never had that issue ... so I'm just going on what I would tell anyone with energy issues ...

[DecievedAndDealing]

I'm just over a week into taking Valtrex and I'm taking 1g a day. My advice would be to workout! Working out always boosts my energy level but I'm noticing it more now that Valtrex exhausts me. That being said I feel like my body is adjusting to the antiviral and I'm becoming less exhausted slowly but surely. Also pay attention to your diet, if you're low on B vitamins you'll experience exhaustion as well as if you're low on iron which is common for women since we lose some every month during our cycle. Making sure you're eating enough (of the right foods of course i.e. healthy) could also be a factor. I'm hyperglycemic so if I don't eat enough I'm dizzy, can't concentrate, tired, shaky etc. Last but not least pay attention to your water intake! I've upped mine due to the antiviral. Hope this helps!