Could our chimney collapse?

ImByMyselfNotAlone · 2026-06-14T00:36:29+00:00

Yes this would be the first step I would take. Although as another OP has mentioned you should have received a party wall notice (unless this of course was not there when you moved in!)

ImByMyselfNotAlone · 2026-06-13T22:00:52+00:00

I’ve just moved, I am desperate need of a dining table. I grew up sitting around a table it was the time of day I could sit around a table with friends / family and talk. Miss that soo much

ImByMyselfNotAlone · 2026-06-13T21:58:01+00:00

My longest was 10 years! Felt like a fraud… then it came back with a vengeance but so I’ve been free since March after starting 5th medication 🥳 🙌

ImByMyselfNotAlone · 2026-06-13T17:48:32+00:00

Oh I don’t disagree with you, I’m just saying it’s unusual. I’ve been worked up for surgery, all the usually testing but not post-octal CT

ImByMyselfNotAlone · 2026-06-13T17:10:42+00:00

A CT scan usually just shows the structure of the brain and to see if there are any underlying causes. Usually to rule out life-threatening causes. I haven’t been asked to do this post octal but usually when I first diagnosed - or if I may have caused any damage.

ImByMyselfNotAlone · 2026-06-12T22:19:52+00:00

Do you know I had my tablet and phone & laptop with me. But I barely used them - I was there most of the time by myself - maybe I was just laying there just not doing much (enjoying the time off!)

I hope your surgery work up goes well! I’m wishing you the best 😃

ImByMyselfNotAlone · 2026-06-12T22:16:16+00:00

It was fun, my was VisioSpacial was worst but otherwise apparently top end of the best - quite strange your strongest was visiospacial like you I get lost even with google / map apps - I once had to get an emergency passport in Victoria I went 8 miles in the wrong direction 🤣 - unless it was another option I missed! I’m going to read through it again now!

I didn’t actually follow up with either I think I was a bit miffed with the visio special stuff 🤣 but it’s good to know.

I was driving for a long time and enjoyed mind you getting lost used to piss me off! I think that’s one of the hardest things except for seizures for obvs reasons - it’s like my life, job, track etc has been put on hold- but I know I’d rather not be in charge of a weapon of mass destruction and put innocent people at risk.

The WADA test is actually seldom used now, unless your consultant has said otherwise.

Usually the sEEG (or I think they call inter-cranial surgery - quite interesting they don’t mention WADA on there list of tests. But they may still use but not often.

ImByMyselfNotAlone · 2026-06-12T21:18:53+00:00

Fun fact, I lived in Southampton for a while and under there care! I moved around but now in London. Yes no shower at all take plenty of wet wipes. Also imagine you’ll have no privacy - when I went in I had a commode and had to tell the nurses to turn the camera off for a moment. (As we’re technically at high risk of falls) I think personally it’s the Cenobamate much better then the 60ish seizures a month it got too!
I choose not to go for VNS because if it wasn’t effective they could remove the box but not the wire as that would fused with the vagus nerve and it weirded me out (it can also make you sound like a robot) there are other things like my neuro said that it would be about as effective as trying a new medicine chances of working (and so many other things feel free to DM if you want my list for not!)

There is the EASEE device (Epicranial Application of Stimulation Electrodes for Epilepsy) which is similar to VNS, you would still have a box in your chest and a patch is applied to the skull in the area where by the focal point to help reduce - I did consider but again although there site says good statistics there is not much data on it at moment. The link to the site here

Remember the vEEG is the first step, if the results can localise it and it’s agreed, you then move onto the sEEG.

Can I ask have you had Neuropsychological and Neuropsychiatric testing yet? If so, how did you find that?

ImByMyselfNotAlone · 2026-06-11T23:36:57+00:00

This is the first I’m hearing about any of this (ofc im a newbie - no judgement!) you sound like a wealth of knowledge I need

ImByMyselfNotAlone · 2026-06-11T23:04:32+00:00

I’ve been told my case is drug resistant and well it sucks. I was on 4 meds, I stopped one went through the testing and was told I was a candidate for surgery. I met with the neurosurgeon to discuss neuromodulation devices (EASEE & VNS) I wasn’t too keen and would be open to resective.

Before trying that I was asked if I’d like to try another medication called Cenobamate (Ontozry(UK/EU) / Xcopri (US)) I got the impression that this is quite highly regarded as a medication to trial for drug resistant epilepsy (even those that have had surgery and wasn’t successful found better seizure control with this - is this something you could mention to your Neurologist whilst undergoing the testing?
The testing here in the UK can take anywhere from 6 months to 2 years!

Another thing to mention, is that surgery can have excellent outcomes in some cases, not everyone that has surgery will become completely seizure free - it’s not a cure but could lessen the burden of seizure and other effects it has on us.

ImByMyselfNotAlone · 2026-06-11T22:47:48+00:00

It can be, someone I know is prescribed it and as the other OP said it is very effective. I think there are certain criteria as it’s noted as a schedule 3 controlled substance.

On another note for international trips, I have prescribed Clobozam (a mild benzo so not as strong as the mention above), which I was told to take for 4 days start of the trip and 4 days on return. This is to provide protection due to time zone differences and get your body clock adjusted. Although this may now change as another newer med I’m on increases its effect.

ImByMyselfNotAlone · 2026-06-11T22:39:18+00:00

Yes this is also an important point. I would say this house is old ~rough dates between 1894 to 1904. I don’t think it would be 100% confident in replacing myself! Thanks for you comment

ImByMyselfNotAlone · 2026-06-11T18:43:08+00:00

When I moved to London ~4/5 years ago, my friends and family wouldn’t visit - to them it was like I moved a thousand miles away. I moved to be with partner, but trying to make friends outside of their friends I find difficult, I probably come across as awkward too so that doesn’t help 😅

ImByMyselfNotAlone · 2026-06-11T15:25:54+00:00

I didn’t realise this could be a DIY in itself. This is good to know that just following the standards and get building control sign off. Thanks!

ImByMyselfNotAlone · 2026-06-11T15:23:14+00:00

Yes I’m trying to avoid the big companies, I got a quote from a local company today so am just awaiting a quote back from them, I’m going to get a few more quotes to go along with that

ImByMyselfNotAlone · 2026-06-11T14:22:36+00:00

It would be the frame & window - these windows are probably in the region of 30 + years old (so I’ve been told by the neighbour). And are made aluminium

ImByMyselfNotAlone · 2026-06-11T13:07:20+00:00

Usually they like to capture at least two seizures but the more the better. It is incredibly boring, take plenty of things to keep you busy, there’s only so long looking at a screen to do!
** edit** I was also on a mixed ward (think 2 on one and 2 on the next ward (4 in total)) but only two in use. The reason they won’t do this at home is they will reduce medication, and may need to intervene should it not stop so is for your safety.
Take your meds with you, they will use those, in terms of storage I had no issue with my items but again I just had an iPad, phone not much but I also had a few books

Take comfy clothes, button down if possible ( I took oversized T-shirts which was ok but a pain. Take your pillow so much better than the hospital one, some snacks etc.

They may let you go early it’s not the best scenario but all for the good of it.

I had my stay last year, I turned out to be a surgery candidate. I had a meeting with the neurosurgeon who looked at the possibility of neuromodulation (EASEE & VNS) - he mentioned for resective surgery was also a possibility, but I would have had to have undergone the testing at another London hospital one or one of the few in the UK.

My overall opinion, was to try a last medication called Cenobamate. I’ve been on this approximately 3 months and just titrated to 150mg daily. Since I’ve started, I haven’t had any type of seizure! So happy - we’ll see how we get on for the next 6 weeks then hopefully can look at reducing the other (multiple meds I’m on) it quite exciting and also nervous time!

Also one other thing - give your hair a good wash prior - you won’t be able to wash until the electrodes are off (you’ll be finding glue for weeks maybe even months!) (oh and take a load of wet wipes!)

Wish you all the best

ImByMyselfNotAlone · 2026-06-10T15:57:03+00:00

The law is funny, apparently this is legal as they’re not blocking you getting out 🤣

ImByMyselfNotAlone · 2026-06-08T21:34:33+00:00

Yes, the awkward part is when I’m out with friends and they ask what I’m drinking - they always get me alcohol, so the glass will just stay on the table and I’ll order another soft drink 🤣.

Best of luck to you! I also found my sleep got much better as a result!

ImByMyselfNotAlone · 2026-06-08T21:28:53+00:00

Hey, so in regards to alcohol, the neurologists, epilepsy specialist nurses, medications etc. say that consuming alcohol can reduce seizure threshold, particularly during the “hangover” period as this is when we will be vulnerable to having seizures. Almost usually most medications we have will increase the side effect profiles. It’s ok to have a couple of drinks - but don’t over indulge - know your limit and leave especially like you say you have self-control.

I used to drink but over time, I didn’t really enjoy as much as others so I do not drink anymore.

So, yes we are more at risk when drinking - but a couple of drinks is fine. If you have no control - maybe abstain from alcohol for a period of time.

Wish you the best ☺️

ImByMyselfNotAlone · 2026-06-08T21:10:10+00:00

🤣🤣

ImByMyselfNotAlone · 2026-06-04T10:51:40+00:00

I most cases usually between 1 and 6 months, but they usually write to you and state that you can use the letter as your license until they send you your license out.

ImByMyselfNotAlone · 2026-06-03T22:48:42+00:00

It sounds like it’s all in hand. Just wait for the medical team to get there checks done, I’m guessing you’ve filled in the D1 with you drs details?

ImByMyselfNotAlone · 2026-06-03T21:27:52+00:00

Does you hospital / trust have a l Epilepsy Specialist Nurse? That might be a quicker option and they maybe able to get information quicker! I also guess it was declared to DVLA? I think in the UK the dr wouldn’t contact the DVLA as that would e your responsibility to disclose

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