Insomnia from valacyclovir

[ilivewithcfs]

Hi! I want to ask a question about valacyclovir and its side effects. I'm at the end of my rope mentally, physically and financially, so I really need advice. Doctors I went to are useless.

I've been sick with CFS for about 9 years. It started after I decided to work 13 hour days with a common cold, instead of getting a sick leave. I tried gigantic amout of drugs and supplements through the years, and almost none of them worked. One of the few, that worked really well, is valacyclovir.

I tried it for the first time several years ago, took it for several weeks and got a really good improvement out of it. At some point it started to give me insomnia, so I had to give it up. The improvement stuck with me long term. I tried to take it again after a small break, and it gave me insomnia once again, so i decided to try other things.

Other things did nothing, so not so long ago I decided to give valacyclovir another chance. I took it for about 2-3 weeks, I had a very noticable improvement, but once again it started to give me insomnia, so I had to give it up. I can't tolerate even the tiniest dosage at the moment. It's absolutely heartbreaking to finally find something that works and not being able to tolerate it.

So here are my questions:

1) What the hell is going on? Why is this happening? Do you have any idea on how to fight this side effect?

2) I also want to hear your thoughts on my current plan. I plan to have a break, then to start to take it again for as long as can, and repeat this cycle untill I recover completely. Is this a good idea? I'm a bit worried, that this type of behaviour can cause resistant strains.

Any ideas on what to do in my current situation will be appreciated. Thanks.

 

[perchance dreamer]

If I take it after breakfast, it doesn't cause me sleep problems. However, I've never been able to exceed 500 MG without having sleep problems.

 

[ilivewithcfs]

If I take it after breakfast, it doesn't cause me sleep problems. However, I've never been able to exceed 500 MG without having sleep problems.

In my case even 500 mg taken first thing in the morning caused insomnia.

 

[junkcrap50]

Are you sure it's valacyclovir causing the insomnia?

I'm not saying that because I'm doubting you or your experience, but to think through other possibilities. Seeing how the insomnia tracked with you stopping and restarting it and intolerance to very low doses, it sure suggests it being the cause.

Perhaps it is due to a filler ingredient in the tablet or a difference between name brand & generic. It's not common, but it is known that some patient's can't switch to generic drugs in certain instances. Also, perhaps there is a difference in generics between manufacturers (in terms of fillers/processes). Maybe having it custom compounded could be an option?

What's your experience with acyclovir? Valacyclovir is the prodrug of it and is converted to it in the body.

 

[godlovesatrier]

A small subset of people get insomnia from antivirals. For me TAF and Famvir gave me insomnia, but only indian generic valtrex gave me horrendous side effects. When i bought valtrex from uk pharmacies (with script) I didn't have almost any side effects. To be clear valtrex does not give me insomnia, but Famvir gives me wicked insomnia.

So if you're in a country that dispenses generics, be super wary that the compounding is often incredibly dodgy. Even the dyes can massively exacerbate MCAS @Gingergrrl is allergic to the blue dye in american compounded valtrex - I'm not.

So yeah compounding is the issue from my perspective. European compounding seem to be ok for me tho.

 

[Mary]

@ilivewithcfs - I'm really sorry that you can't tolerate the one thing which has been helping you. It's beyond unfair. I don't know if your plan to take valacyclovir for as long as you can tolerate it and then take a break, and then restart, etc. is a good one or not. Do you think your doctor would have any idea about this?

I've had trouble with insomnia for many years. The last couple of years have been pretty brutal and it's taken everything I had to keep experimenting in an effort to get some sleep. And finally about 6 weeks ago I started sleeping better. This time the solution was to stop my calcium. (a different time I had to add IN calcium to be able to sleep - it's been maddening!)

Anyways, I'd finally started sleeping pretty well almost every night - seemed too good to be true! And then a few nights ago started being unable to go back to sleep in the middle of the night after waking up to pee. And the only thing I had changed was starting valacylovir about 7 or 8 days ago. Also my stomach and appetite were off - which I read is very common with this drug. And I googled valacyclovir and insomnia and got several hits.

I can't take not sleeping. I haven't taken valacyclovir long enough to see if it would help at all with ME/CFS, but I can't take not sleeping. So I'm afraid I have to stop it, when I've barely gotten started, before I can know it will help at all. And also will see if it is in fact the latest cause of my latest insomnia go-round.

So if you're in a country that dispenses generics, be super wary that the compounding is often incredibly dodgy. Even the dyes can massively exacerbate MCAS @Gingergrrl is allergic to the blue dye in american compounded valtrex - I'm not.

I do have a generic product, and the tablets do have a blue coating. Actually my doctor told me that he rinses off the blue dye coating before taking it - I didn't bother doing that but maybe I should? I'm going to stop it for right now and see if I'm able to sleep again, and then if I restart it, I'll rinse off the dye before taking it and see if that makes a difference.

@ilivewithcfs - I wonder if rinsing off the dye might help you? tbh, I really don't think the dye is responsible for the insomnia and stomach upset - both are mentioned as "side" effects here: https://www.drugs.com/sfx/valtrex-side-effects.html - but you never know.

@godlovesatrier - I'm really glad you raised the issue of generics!

 

[Mary]

Update: I slept last night, was able to go back to sleep pretty quickly middle of the night. Also, I have more energy today. Yesterday morning I was quite tired when I work up and never got much energy all day, and today is the opposite - I have some energy, feel better than I have in awhile - and I skipped the valacyclovir yesterday.

I counted my valacyclovir pills today and found I had taken them for 10 days. And they were making me tired and unable to sleep past 2:00 or so. It's always something with this DD!

 

[alivenotkicking]

@ilivewithcfs Have you tried mirtazapine? I'm also on valacyclovir (3x a day, the last one at 8pm) and 30mg is enough to knock me out for the night.

 

[godlovesatrier]

I've definitely heard of valac giving people anxiety and I'm sure insomnia as well. But it's just super rare.

Here are the list of sides I had with generics: crippling fatigue and malaise, sore throat, headache, terrible shooting pain down my left leg and up into my hip, severe brainfog.

Compared to glaxosmithkline where I experienced mild brainfog some physical fatigue and that was about it for a few weeks. It took three to six months for full improvement. My only side effect is kidney stones. I took 1g per day.

Indian generic famvir gave me wicked insomnia. Which subsequently reactivated ebv. But I did quite a lot on famvir in between crashes. It did help. @heapsreal took it for years without any side effects. And to my knowledge only benefits.

Varies so much.

 

[ilivewithcfs]

Perhaps it is due to a filler ingredient in the tablet or a difference between name brand & generic. It's not common, but it is known that some patient's can't switch to generic drugs in certain instances. Also, perhaps there is a difference in generics between manufacturers (in terms of fillers/processes). Maybe having it custom compounded could be an option?

What's your experience with acyclovir? Valacyclovir is the prodrug of it and is converted to it in the body.

I tried acyclovir. It was exactly the same as valacyclovir when it comes to effectiveness and side effects.
If I decide to try these meds one more time, I'll buy a different brand. Thank you.

 

[ilivewithcfs]

So yeah compounding is the issue from my perspective. European compounding seem to be ok for me tho.

The only alternative to local brands are Polish acyclovir and valacyclovir. I'll try them. Thanks. Acyclovir didn't have any dye though, it was white.

 

[ilivewithcfs]

I do have a generic product, and the tablets do have a blue coating. Actually my doctor told me that he rinses off the blue dye coating before taking it - I didn't bother doing that but maybe I should? I'm going to stop it for right now and see if I'm able to sleep again, and then if I restart it, I'll rinse off the dye before taking it and see if that makes a difference.

Thank you for kind words. Sorry, that you got insomnia. I don't think it's the blue coating. My acyclovir tablets were white, and they gave me exactly the same side effects as blue valacyclovir.

 

[ilivewithcfs]

@ilivewithcfs Have you tried mirtazapine? I'm also on valacyclovir (3x a day, the last one at 8pm) and 30mg is enough to knock me out for the night.

I'm on fluvoxamine, so I can't try mirtazapine. I'm also on tiny dosage of 12,5 mg of clozapine at night for sleep. Usually I sleep very well, but if I'm taking valacyclovir- there's no amount of clozapine, that can keep me asleep.

 

[ilivewithcfs]

But it's just super rare.

It is rare, it's not even on the list of side effects in the instruction.

Indian generic famvir gave me wicked insomnia. Which subsequently reactivated ebv. But I did quite a lot on famvir in between crashes. It did help. @heapsreal took it for years without any side effects. And to my knowledge only benefits.

Unfortunately, famvir doesn't exist in my country at all. Thanks anyway.

 

[heapsreal]

Hi! I want to ask a question about valacyclovir and its side effects. I'm at the end of my rope mentally, physically and financially, so I really need advice. Doctors I went to are useless.

I've been sick with CFS for about 9 years. It started after I decided to work 13 hour days with a common cold, instead of getting a sick leave. I tried gigantic amout of drugs and supplements through the years, and almost none of them worked. One of the few, that worked really well, is valacyclovir.

I tried it for the first time several years ago, took it for several weeks and got a really good improvement out of it. At some point it started to give me insomnia, so I had to give it up. The improvement stuck with me long term. I tried to take it again after a small break, and it gave me insomnia once again, so i decided to try other things.

Other things did nothing, so not so long ago I decided to give valacyclovir another chance. I took it for about 2-3 weeks, I had a very noticable improvement, but once again it started to give me insomnia, so I had to give it up. I can't tolerate even the tiniest dosage at the moment. It's absolutely heartbreaking to finally find something that works and not being able to tolerate it.

So here are my questions:

1) What the hell is going on? Why is this happening? Do you have any idea on how to fight this side effect?

2) I also want to hear your thoughts on my current plan. I plan to have a break, then to start to take it again for as long as can, and repeat this cycle untill I recover completely. Is this a good idea? I'm a bit worried, that this type of behaviour can cause resistant strains.

Any ideas on what to do in my current situation will be appreciated. Thanks.

I do recall somewhat not reacting well to valtrex/generic, I think they narrowed it down to the blue die they used to make the pills. So sometimes it call be the additives that people struggle with. So a good idea trying different brands👍

 

[perchance dreamer]

I rub off the blue dye under water, which sometimes annoys me because when I asked a pharmacist why the tablets are coated with blue dye, he said it's just for cosmetic reasons.

 

[cfs since 1998]

Personal experience has taught me almost anything and everything can cause insomnia. A quarter tablet of vitamin C, Vitamin D, NAC, LDN. Sometimes it seems like my health was better when I didn't take anything at all because my sleep was better.

It's been years since I've used them, but I used to take adaptogens (Holy Basil or Seriphos) for this issue and they make a noticeable difference. I started with Seriphos but swithced to Holy Basil and it seemed to have an identical effect even though they are chemically quite different.

The downside is the effect wears off after 4 hours, so you often wake up in the middle of the night and have to take more. So while it seemed like the adaptogen supplements I mentioned were helping, it also sometimes felt like it was a net wash.

 

[cfs since 1998]

You might want to try acyclovir. It might have fewer side effects since it's the active drug while valacyclovir is a prodrug that breaks down into acyclovir and the amino acid l-valine. Acyclovir requires more frequent dosage however.

 

[ilivewithcfs]

You might want to try acyclovir. It might have fewer side effects since it's the active drug while valacyclovir is a prodrug that breaks down into acyclovir and the amino acid l-valine. Acyclovir requires more frequent dosage however.

I tried acyclovir, and it was exactly the same, when it comes to effectiveness and side effects.