1 hour ago, Troy021079 said:

I'm genuinely confused, I was in a wave/spike for a week, yesterday it eased and I felt pretty much normal. I went to the gym yesterday afternoon did a light session, no over doing it which I was conscious of. Today I feel spiky again like I'm almost back in the wave. Is fluctuating like this normal? Also, these symptoms feel slightly different to what I'm use to. Thanks again for any advice.

Exercise can be too much for some in wd. Maybe ease off the gym and stick to walking for a bit whilst you are mid waves.

Unfortunately the fluctuations are so very common.

13 minutes ago, Chippy said:

Exercise can be too much for some in wd. Maybe ease off the gym and stick to walking for a bit whilst you are mid waves.

Unfortunately the fluctuations are so very common.

It's weird because I've been doing the gym in a controlled manner for about 4 months, if I'm in a wave I normally don't go until it settles then I'm fine. This one seems to be taking longer to settle, I felt good yesterday so I went to the gym, my normal pattern is after wave I stabalise somewhat and do what I normally plan, this one is just hanging around 🤷

1 minute ago, Troy021079 said:

It's weird because I've been doing the gym in a controlled manner for about 4 months, if I'm in a wave I normally don't go until it settles then I'm fine. This one seems to be taking longer to settle, I felt good yesterday so I went to the gym, my normal pattern is after wave I stabalise somewhat and do what I normally plan, this one is just hanging around 🤷

Sorry to hear. It’s good you can see a pattern. Sometimes it’s not that predictable unfortunately. Perhaps wait a few days after things settle to be sure you are in a window. It might be coincidence that you went to the gym and it didn’t worsen you. Just something to consider. I think the nervous system reacts to stress and it can cause waves so sometimes the stress of heavy exercise may make things worse or put you in a wave, although I know your gym session was light for you. Hope it all settles soon!

Hi all,

For the past 10 days I have noticed my symptoms have changed and got more intense. Before it was the inner hum and some anxiety but I was managing life. Lately it's dizziness, shakiness and adrenaline surges and just a feeling of getting worse. I have been under a bit more stress lately but trying to deal with it. I was going to the gym about 4 times a week but even that seems to make symptoms worse now. Has anyone else experienced anything like this? Could it just be a prolonged spike?

Thanks in advance.

@Troy021079 , I've merged your question about your symptoms with your thread as it is a specific question about yourself.

I'd recommend taking it easy, if possible. Perhaps stop going to the gym and do gentle activities, like walking in nature.

54 minutes ago, Luke said:

@Troy021079 , I've merged your question about your symptoms with your thread as it is a specific question about yourself.

I'd recommend taking it easy, if possible. Perhaps stop going to the gym and do gentle activities, like walking in nature.

Gym has been part of my routine fir the past 4 months, I've tolerated it mostly as I've been operating with guardrails and just doing very slow progression, no where near what I use to do. As I said, my stess has been high lately due to a toxic work place which I've left this week, anticipating a new job next week so add that. Plus just life stress in general. I hope this is just a temporary dip due to an overloaded stressed cns 😢 I still settle in the afternoon and night.

Gym is my life and what was helping me cope with all this.

2 hours ago, Troy021079 said:

Gym is my life and what was helping me cope with all this.

It was mine until I was harmed by these drugs.

It was suggested previously that you tone down exercising and focus on gentle things. You have not done this, but have then now indicated that the gym makes your symptoms worse.

When receiving this advice again, you don't want it. You're of course free to not follow this advice and make your own choices, but you also keep coming back and asking what to do about exercise making your symptoms worse.

25 minutes ago, Luke said:

It was suggested previously that you tone down exercising and focus on gentle things. You have not done this, but have then now indicated that the gym makes your symptoms worse.

No, I did not say that at all, I was just stating that it's what has been keeping me grounded and helped me cope. I was asking if anyone has had a flare like this before from stress etc. FYI I have toned it down the last week and a bit so I'm going to see how it goes.

Isn't this forum about being able to ask questions and find some support? Im not sure why the hostility is there.

7 minutes ago, Troy021079 said:

Isn't this forum about being able to ask questions and find some support? Im not sure why the hostility is there.

It is Troy. I suspect Luke misunderstood that you have been toning it down recently. Feel supported. Because you are.

1 minute ago, Chippy said:

It is Troy. I suspect Luke misunderstood that you have been toning it down recently. Feel supported. Because you are.

Thanks Chippy.

1 minute ago, Troy021079 said:

Thanks Chippy.

You are welcome. Please don’t feel unwelcome or not validated here.

4 minutes ago, Chippy said:

You are welcome. Please don’t feel unwelcome or not validated here.

I don't, we're all fighting our own battles and need to understand each other. I guess I'm just really struggling at the moment like so many and not quite understanding everything that is happening suddenly.

Just now, Troy021079 said:

I don't, we're all fighting our own battles and need to understand each other. I guess I'm just really struggling at the moment like so many and not quite understanding everything that is happening suddenly.

Good.

It’s really common. Non of us fully understand what is happening. Normally when you are sick, things get predictably better, you can feel you are ‘on your way’, but with this it isn’t like that, it’s so nonlinear. Of course the medical profession don’t know what’s actually happening either. Our bodies are complex machines. We have to trust them to put things right. Humans and their drugs don’t know how to do this intricate work. Your body does!

3 minutes ago, Chippy said:

Humans and their drugs don’t know how to do this intricate work.

That's what got us here in the first place!

Just now, Troy021079 said:

That's what got us here in the first place!

Yup!

You said:

18 hours ago, Troy021079 said:

I was going to the gym about 4 times a week but even that seems to make symptoms worse now.

I am not being hostile, I can only go by what you tell us.

7 hours ago, Troy021079 said:

I was asking if anyone has had a flare like this before from stress etc.

Flare ups can be caused by a large range of things, stress can be one of them, although for some, there doesn't seem be much of a pattern at all.

Minimising stress as best you can is likely a good thing for recovery, however we all live in the real world so this isn't always 100% possible, you can only do what you can do to reduce it as much as is realistic.

Perhaps if you can do this, it will settle down, or perhaps it will end up being difficult to end up identifying much of a specific pattern. Experiencing flare ups and fluctuations is very common as people recover.

Just to be clear, I'm not suggesting "never exercise".

I think if I were in your position, I'd try a few weeks with as little "non essential" physical and mental stress as possible, and see how you get on. If you find it doesn't make a difference, then it doesn't make a difference.

If things are considerably easier, you can then be slow and careful about what you add back in, in terms of physical activity, how much you do, go out, etc.

Of course, this is just a thought, you may decide this is not for you.

I hope your recent flare ups improve again either way.

17 minutes ago, Luke said:

Just to be clear, I'm not suggesting "never exercise".

I think if I were in your position, I'd try a few weeks with as little "non essential" physical and mental stress as possible, and see how you get on. If you find it doesn't make a difference, then it doesn't make a difference.

If things are considerably easier, you can then be slow and careful about what you add back in, in terms of physical activity, how much you do, go out, etc.

Of course, this is just a thought, you may decide this is not for you.

I hope your recent flare ups improve again either way.

Thanks Luke, it's just hard to get a grasp I guess. For the last 4 months or a bit more I've been going to the gym, putting on weight gradually and functioning mostly with the occasional wave and more activation days of course, but manageable. The last 2 weeks however my tolerance has dropped, I have had more stress so I don't if it's accumulated and has caused this flare. All I know is my tolerance has dropped and I hope it's temporary.

All this from 2 weeks of drugs which still just doesn't make sense to me 🤷

It seems common for people to worsen at some point several months in, very roughly around 6 months, give or take 2-3 months. I've no idea why, it just seems to happen to quite a few people. I've seen it even on this forum several times and this forum is pretty new.

4 minutes ago, Troy021079 said:

All I know is my tolerance has dropped and I hope it's temporary.

There's a decent chance that it is, but my best guess would be that it's not good to exacerbate it, if possible.

We don't really have any special knowledge of this, scientific information or anything or that nature really- all we can do is look at the stories of others harmed and see what helped and what did not.

You might find if you can take it easy, the fragile state will calm and that over time you'll be able to carefully ramp things back up again. It's hard to say, but I think it's worth trying to see if there is anything you can identify that does cause flare ups as that's information you can use to try to minimise them.

1 hour ago, Luke said:

It seems common for people to worsen at some point several months in, very roughly around 6 months, give or take 2-3 months. I've no idea why, it just seems to happen to quite a few people. I've seen it even on this forum several times and this forum is pretty new.

I've heard it can get worse before it gets better but I'm just going off what a few people on fb have said.

1 hour ago, Luke said:

but I think it's worth trying to see if there is anything you can identify that does cause flare ups as that's information you can use to try to minimise them.

Yeah, I know stress and looping is a big one for me. I try to pull myself out but is so loud at times.

21 hours ago, Troy021079 said:

I've heard it can get worse before it gets better but I'm just going off what a few people on fb have said.

Yeah, I know stress and looping is a big one for me. I try to pull myself out but is so loud at times.

It certainly did for me, and I've seen it happen to a lot of people.

The looping thoughts as well, I really struggled with, but have begun to improve quite a bit. It's still a difficulty but it flares up rather than being constant.

It has been a long time for an adverse reaction to a few doses, but I've seen others on the previous forum (SA) experience this and then go on to recover. I believe you will too, in time.

1 hour ago, Luke said:

It certainly did for me, and I've seen it happen to a lot of people.

The looping thoughts as well, I really struggled with, but have begun to improve quite a bit. It's still a difficulty but it flares up rather than being constant.

It has been a long time for an adverse reaction to a few doses, but I've seen others on the previous forum (SA) experience this and then go on to recover. I believe you will too, in time.

I'm glad you're improving, it sounds like you've had a rough time.

I'm actually in a bit of a window today, last day of a stressful toxic job ☺️

I've already improved since the acute phase which was hell, it's hard some days still but the trajectory is up even if slow. That's why this sudden flare feels a bit overwhelming, because I've been mostly functional and not this sensitive in a while.

7 hours ago, Troy021079 said:

it's hard some days still but the trajectory is up even if slow.

Just hold onto this. That's really all that matters.

Everything else is just looking after yourself as best you can until more time passes, and you're better.

Windows are a good sign.

Updste: the flare has seemed to burn itself out although I'm still a bit more sensitive to stress which I'm guessing is normal after a flare?

I've managed to start my new job, get back to the gym with moderate sessions, no pushing but tolerating them. I plan to build up to what I as doing before flare but more conservatively.

This phase is weird to me, I've had more fluctuating symptoms then before, I'll spike one day then the next day I'll have a window and symptoms will be more background 🤷 but it's completely random, I can't explain it. Mornings I still wake with some anxiety but it's weaker. I kind of feel better overall. I have found myself talking to more people and laughing at things I see online again etc.

In conclusion, I feel like windows are more common but I easily spike due to stress which I don't always recognise.

1 hour ago, Troy021079 said:

Updste: the flare has seemed to burn itself out although I'm still a bit more sensitive to stress which I'm guessing is normal after a flare?

I've managed to start my new job, get back to the gym with moderate sessions, no pushing but tolerating them. I plan to build up to what I as doing before flare but more conservatively.

This phase is weird to me, I've had more fluctuating symptoms then before, I'll spike one day then the next day I'll have a window and symptoms will be more background 🤷 but it's completely random, I can't explain it. Mornings I still wake with some anxiety but it's weaker. I kind of feel better overall. I have found myself talking to more people and laughing at things I see online again etc.

In conclusion, I feel like windows are more common but I easily spike due to stress which I don't always recognise.

Sounds like a positive update to me, every other day symptoms are common, it is great you can see windows happening more regularly, and also good you can see yourself coming back online at times. Youre doing great, hope this continues for you.