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  • TDS Moderators: AlphaMethylPhenyl | paranoid android

Would you give up too?

Someone who knows me in real life has suggested "TLE and mixed frontal epilepsy"

being 'reviewed' to see neurology then waiting time will be around a year or so good ol britain

thoughts on this anyway?
 
I will never give up.

Martin Scorsese GIF by The Good Films
 
Darksidesam said:
Hi so im writing this message i wrote a similiar one years ago but sadly im still experiencing the same issue.

For over 8 years now whenever i am in contact with: Petrol, Air Freshener, Perfume, Aftershave, Scented Candles, gloss paint, solvents, sealants i get Migraines and Cluster Headaches

The health system in the UK is rather shit and they just tend to throw pills at you for symptoms and wont thoroughly test you to find out what the root cause is, so i still do not know to this day why i am experiencing this.


Recent examples:

Travelling on a bus/train next to someone with loads of perfume even for just 15 mins = migraine, nausea, head pain, brain fog, blurry vision, mood change , clumsiness 4-5 hours

Visiting a relative where air fresheners are used in that home , duration of stay 1-2 hours approx = 3 days of migraines, nausea, head pain, brain fog, blurry vision, mood change, clumsiness, light sensitivity AND lots of physical pain just like Fibromyalgia pain, bedridden basically


Im on the verge of suicide at the point of choosing to either spend all of my time alone or keep ending up around my triggers and being unwell. Migraine preventatives dont work for me and give me weird nasty side effects. The relief tablets dont work either.

Edited to add:

I also thought i should add in terms of overall physical health im actually at the strongest and best form ive ever been, started doing weights 2 years ago (altho always trained arms, did bodyweight squats and push ups etc) then bought a bench and bar squat rack and everything got right into it , i religiously work out 5 times a week 90 minute or more sessions

This doesnt cause a migraine or give me symptoms but i dont know how i would cope without doing it.
Click to expand...
I know the feeling. I'm sorry you're going through this. It's the things that are out of our control that sometimes bother us the most. All I can say is I hope you stay strong and get through it 🙏
 
Darksidesam said:
Hi so im writing this message i wrote a similiar one years ago but sadly im still experiencing the same issue.

For over 8 years now whenever i am in contact with: Petrol, Air Freshener, Perfume, Aftershave, Scented Candles, gloss paint, solvents, sealants i get Migraines and Cluster Headaches

The health system in the UK is rather shit and they just tend to throw pills at you for symptoms and wont thoroughly test you to find out what the root cause is, so i still do not know to this day why i am experiencing this.


Recent examples:

Travelling on a bus/train next to someone with loads of perfume even for just 15 mins = migraine, nausea, head pain, brain fog, blurry vision, mood change , clumsiness 4-5 hours

Visiting a relative where air fresheners are used in that home , duration of stay 1-2 hours approx = 3 days of migraines, nausea, head pain, brain fog, blurry vision, mood change, clumsiness, light sensitivity AND lots of physical pain just like Fibromyalgia pain, bedridden basically


Im on the verge of suicide at the point of choosing to either spend all of my time alone or keep ending up around my triggers and being unwell. Migraine preventatives dont work for me and give me weird nasty side effects. The relief tablets dont work either.

Edited to add:

I also thought i should add in terms of overall physical health im actually at the strongest and best form ive ever been, started doing weights 2 years ago (altho always trained arms, did bodyweight squats and push ups etc) then bought a bench and bar squat rack and everything got right into it , i religiously work out 5 times a week 90 minute or more sessions

This doesnt cause a migraine or give me symptoms but i dont know how i would cope without doing it.
Click to expand...
When I was in the psychiatric hospital, there was someone with the same symptoms. When he told the group about it, I thought he was faking it. I found his difficulties completely incomprehensible... so different from all the other ‘illnesses’ that cropped up there.

Later we became friends and I saw that he was ‘normal’. At least, what I understand by that.

But that part of him was different. Different in the sense that I didn't understand it.

From then on, I believed that he was suffering a lot.
 
Last edited:
deficiT said:
I know the feeling. I'm sorry you're going through this. It's the things that are out of our control that sometimes bother us the most. All I can say is I hope you stay strong and get through it 🙏
Click to expand...
hey , thanks for the kind words
Im trying my best to meet people and do things (outside, summer in britain now) trouble is im now getting more issues like i cannot tolerate street lights at night, or car lights also my gaming time has gone down from 80-100 hours per 2 weeks (Its how i cope with the loneliness as i dont have that many people i can see around) to a mere 9-10 hours , also im now unable to look at anything flickering or flashing it makes me feel very sick i cant even look at the sun going through a fan. Also my smell sensitivity has gotten even worse in the last few months
Literally had to argue with my dr for 5 mins just to refer me to neurology
 
aokorn said:
When I was in the psychiatric hospital, there was someone with the same symptoms. When he told the group about it, I thought he was faking it. I found his difficulties completely incomprehensible... so different from all the other ‘illnesses’ that cropped up there.

Later we became friends and I saw that he was ‘normal’. At least, what I understand by that.

But that part of him was different. Different in the sense that I didn't understand it.

From then on, I believed that he was suffering a lot.
Click to expand...
This is what makes the condition even more difficult is when people dont understand or believe us I really wish i could say it was anxiety and take a pill and it was all better but its not anxiety its literally a systemic effect.
In the 8 years of having it and reading into it trying to find answers where NHS (British healthcare system) is useless, i did see a correlation between people on the spectrum and things like Air Fresheners. What i have noted is that all of my triggers are Neurotoxic and i have a lot less triggers than other people who cannot tolerate things like Garlic, Onions , Chilli and Weed where as im able to tolerate and enjoy all of those


I did honestly consider it was anxiety before but you see there are instances where ive confirmed its absolutely not. Example: In my property the council send workers to cut the grass and bushes etc and they use petrol strimmers mowers and leaf blowers and a few mornings they have done it now , i have still been asleep and woke up a 7/10 in symptoms which lasted 2-3 days where my vision was fucked and the brain fog and drunk/hungover feeling felt so heavy and like it wouldnt fuck off
Im not the earliest of risers i sleep between 1-9am but only actually sleep around 4 hours of that on average. But when ive been awake and seen them coming and closed all my windows and turn extractor fan on in kitchen then im fine

Also anxiety wouldnt cause someone to have violent flashing lights in their vision in the darkness or when they close their eyes for 1-3 days (This happens when i have a big exposure)
 
Darksidesam said:
hey , thanks for the kind words
Im trying my best to meet people and do things (outside, summer in britain now) trouble is im now getting more issues like i cannot tolerate street lights at night, or car lights also my gaming time has gone down from 80-100 hours per 2 weeks (Its how i cope with the loneliness as i dont have that many people i can see around) to a mere 9-10 hours , also im now unable to look at anything flickering or flashing it makes me feel very sick i cant even look at the sun going through a fan. Also my smell sensitivity has gotten even worse in the last few months
Literally had to argue with my dr for 5 mins just to refer me to neurology
Click to expand...
That sounds difficult man, doctors are kind of a bear getting them to do their jobs sometimes. It sounds like, yeah you just may need to see a neurologist and get the proper help and then things will begin to get better for you.

My stepfather has epilepsy, so I've seen a lot of his struggles, and I know that neurological issues can be very hard to manage.

I've been pretty in the dumps with my own issues lately, so I know that just giving up, can be a very seductive notion, but try to keep hope alive and don't let it draw you in.
 
Pissed_and_messed said:
I

anyway, I had this constant thirst that got worse in evenings.
Click to expand...

I've been having this like a mother fucker. I think it's panic/stress related. I'm not opioid or benzodiazepines dependent but either one of those would immediately eliminate it for 2 days.

also when my stress situation resolved itself a bit the thirst went away. its crazy because it really feels like its more than something in your head causing it... and I still can't even believe its just due to stress...I keep thinking something else is wrong with me.
 
LucidSDreamr said:
can you summarize what happened to her? I don't have one hour to wait for her to get to how vaping destroyed her health.
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Understandable😂 was a while since I saw it but if I remember correctly she bought a vape juice with way to much chemicals/additives(probably wrong in the factory), which gave her some sort of hyper sensitivity to all chemicals, food colouring, sweetener etc. I think her symptoms where the same with headaches and stuff. She practically stopped going out altogether since the sensitivities to chemicals were that bad and people vape, use perfume etc. I think it started to diminish a bit with time though. Might be wrong.

There's so much chemicals and shit in all the stuff now nowadays so this thing might get more and more commons. I think the body just gets fed up with too many chemicals which causes some kind of aversion to it idk just guessing here 🤷‍♀️
 
aesthetic.addict said:
The youtuber Of Herbs and Altars might have something similar? She talks about it in this video
Click to expand...

It does sound like something to do with my nervous system as well im not sure tho i just wish i could get answers but in the UK, the british healthcare system isnt very good and if you have a certain issue they dont seem to have any answers or anything for example multiple chemical sensitivity isnt even recognised as an illness in the UK

Also they are not very broad with testing they havent tested my hormones and they havent tested my adrenal functions etc i think the issue is that im in good shape physically so they take one look at me and think ye he is fine

Im able to tolerate peoples e cigs around me but not cigarettes or tobacco
Ive not really used E cigs/ecig liquid ive been a weed purist from the beginning
 
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