I was recently diagnosed with breast cancer and at the mo I'm recovering from surgery to remove the tumor.
When I'm ill my body doesn't react normally, I have huge surges of energy when I should be tired.
Anyway last night I couldn't sleep 💤 and felt like I was bubbling over with energy. I really wanted to get up and party. Not that I can dance - I'd just fall over lol.
Then really big spasms started and I started trembling too. I looked like I was having a fit. But still the energy feeling wouldn't go away.
In the end I took an alprozolam tablet to get to sleep 💤.
Just wondering if anyone else has this strange reaction to being ill?
Please let me know and if you've found a way to calm this energy down.
Thanks Alison
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Last year I also had surgery for breast cancer, I was lucky and had a lumpectomy.
I recovered well from the surgery and then had chemo and radiotherapy.
It was the chemo that really knocked me for six Ataxia wise. Surges of energy were few and far between! At the time I couldn't find any information on the affect of chemo on Ataxia, in fact a Neurologist I spoke to showed no interest!
During the period when I was having chemo, my sleep pattern was severely disrupted.
Sleeping right through was a thing of the past, quite often I'd get up around 6am. Lying awake led to too much overthinking! I was a couch potato most days and put on weight!
A few weeks after the last chemo I blacked out completely and was taken to hospital.
It was a suspected seizure, apparently this can happen after the treatment.
Radiotherapy sessions were fairly quick but sometimes there was a lot of hanging around beforehand. I found lying down/getting up from the table brought on vertigo
but this passed. There was redness, some irritation and blistering but I was given cream to apply for that.
My last chemo was in February and only now do feel anything like myself. Fatigue can still be overwhelming but I've learnt to just go with the flow
Thanks so much for sharing your experience with us. Glad you're starting to feel normal (well our normal) again.
Mine was a lumpectomy too. Am recovering well from the surgery.
I also asked my neurologist about the effects of chemo with my ataxia and she just looked at me blankly!
I'll find out my next stage of treatment on Thurs.
But I have noticed over the last few years that when I'm ill with anything at all that I have bursts of really high energy. It's as tho my body generates extra energy but then doesn't know how to use it!
Maybe Harriet could shed some light on this for me?
I would be very grateful and also very grateful to know if anyone else has the same thing. I feel like a weirdo and alone with this.
I am afraid I am not able to shed much light on the unusual symptoms you experience when ill. I do remember you have posted about something similar before, symptoms of mania with some episodes of depression, and you were going to speak to your GP about it. How did that go?
Yes a couple of years ago I was manic followed by periods of depression. My Dr prescribed me paroxetine antidepressants. This resolved both problems manicness and depression. With the help of my Dr I did try to come off the paroxetine but I was manic again, so I'm back on the meds - only 10mg. I figure it's safer than being manic!
But when I'm ill now I have these huges surges of energy which I have to try really hard not to react too!!
My neurologist said "this can happen" but wouldn't elaborate any further! I just want to understand more and know how to cope with it. Also I feel freaky and alone with this.
I never had any of these problems before I was emotionally stable and usually calm person.
Sorry to hear you've been having to deal with Breast Cancer.
About the symptoms you describe, does this description of "Restless Legs Syndrome" (RLS) sound familiar? It also comes with "Periodic Limb Movements" (which can sometimes look like a kind of seizure). It can occur on it's own, but is also more common in Ataxias, Parkinson's and other conditions etc.
Ask your GP and Neurologist about this, and ask them to rule out any other possible causes of your symptoms. If it's confirmed as RLS, there are some treatments you could try if it's keeping you awake at night.
So, no, you're not alone nor "freaky" with this type of problem. I've had it for years on and off. Early on, the twitch was so bad, both knees would hit me hard in the chest and shake me awake! It took several goes to fall asleep. Lately, it's more just like restlessness, an uncomfortable sensation and urge to move my legs or get up and walk around. Yes, I can also suddenly feel "energised"
As well as RLS, it's also possible to get "day-night sleep reversal", so that you're awake at night and asleep during the day. This would often go with symptoms of Parkinson's, but can occur with Ataxia or Restless Legs Syndrome.
If it is RLS, why would it be mostly at night? Restless Legs Syndrome is thought to involve low levels of the substance Dopamine, used to send messages in our nerves, especially in parts of the brain. We make most of our Dopamine whilst we're asleep at night, and store a lot of it ready for the next day. So, having used up a lot of our Dopamine during the day, we're waiting to sleep to make some more Dopamine, by which time the lower levels can start to trigger RLS symptoms. Hence it's worst at night when trying to get to sleep. Getting a good pattern of sleep back can help relieve the symptoms. Your Neurologist might prescribe low doses of Levodopa (to make some extra dopamine) or other medications for times when it's bad (might depend on which other medications you're already on).
There are also some possibilities as to why this often happens or is worse when you're ill (if you mean by a colds, flu, infections, or fighting cancer, all of which use our immune system). The simplest explanantion is also back to the idea that RLS is associated with lower levels of Dopamine. To make dopamine, we need protein, Vitamins B3, B6, C, as well as Iron and Zinc. During colds and flu, we lose our appetite, don't feel like eating, so we get less protein, as well as less vitamins and minerals. Our immune system then uses up a lot of our Zinc, B & C Vitamins, leaving less over for the brain to make dopamine. This can lead to lower levels of dopamine, which can worsen RLS symptoms as well as Parkinson's and other disorders such as Dopa-Responsive Dystonia, which is why they can be worse during colds and flu.
There are doubtless other factors too. But in your case, if your immune system has had a double-load of work to do (cancer and colds/flu), as well as healing from surgery, then this might have been using up your zinc and other vitamins and minerals, so it's not surprising symptoms like RLS might be worse at the moment. This might improve on it's own in time. Rest, eat well, and try the tricks the NHS site mentions to help these symptoms.
As I say, if it persists or worsens at times, talk to your GP and Neurologist about this, if it is RLS, they might be able to treat it with other meds and help you get a good night's sleep again.
Thank you so much for all your info. I've read the site from your link and yes I do have legs and arms that jerk and facial twiches. So maybe it is RLS. But the energized fizzy feeling is all over my body and so I have trouble sitting still esp when I most need to. Maybe I have restless body syndrome! Lol. I will try to speak to my doctor or neurologist in more detail about it next time I see them. Got so much going on health wise at mo. I just saw my Dr this morning as I have a urine infection. And yes I was feeling great then but had a 2 hour sleep (my usual siesta) and I'm now feeling awful. I kinda overdo things esp when ill with something else and then I crash down and feel terrible. I just wish I could control myself more.
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