Reflex anoxic seizures HELP!

[ZebrainFoxarmour]

Hi I was wondering if anyone could offer me some advice? I'm currently in hospital having some form of seizures that after a lot of research seem to sound a lot like RAS. I have had them for years but months apart in clusters. I was diagnosed at 13 as having right temporal lobe epilepsy by an EEG. I'm now 32 and have since been diagnosed with Ehlers danlos, POTS and autonomic Neuropathy. The seizures themselves have severe oxygen drops and I have has respiratory resuscitation 3 times so far on a previous admission. Currently I'm being treated with lorazepam IV and the doctors are unsure what is causing it and each consultant has a different opinion. I have yet to suggest RAS to them as they don't come now until Monday. My blood gasses are all over the place and I need oxygen. I was just hoping someone could give some details perhaps of what they usually experience during their own seizures so I can see if it is a possible cause. Thank you in advance x

[Mbun]

Hi my 5 year old daughter suffers from ras. We just een recently diagnosed from a peidrican yet shes had these since birth along with 2 convulsions when having high temp virus. We find her are months apart then she had 2 within a week so I'm new to this also. I find I'm understanding it alot more then when researching it on the internet. I'm hoping she will outgrown it soon but not too sure. I have to strictly supervise her now as she fell down the stair at home (just one step) and instantly went floppy with no warning or crying. X

[ZebrainFoxarmour in reply to Mbun]

That's awful for you both I'm so sorry to hear this. The thing that keeps coming up is that there's no support from the consultants... It's like they no very little about it themselves so everyone is left to their own devices to get information online. It just creates anxiety and stress. It's good that there are at least forums available but not good enough that questions can't be answered fully enough by doctors. The only persistent thing that has been happening during my own seizures in my oxygen dropping and beyond a certain amount of time me needing assistance breathing. But they are quite certain its not epilepsy. My BP initially rises then takes a huge drop before the seizures occur.

[Mbun in reply to ZebrainFoxarmour]

Thank you for understanding. Hope u find answers too. I guess it's a thing people arnt aware of. I told my daughters school and it seemed they never heard of it either. My help is the peidrican and online info. Luckily the peidrican has explained things in detail but been told it's scary to see and deal with but not worrying. It can happen at anytime thats my worry. Maybe she wouldnt have another ras for a few months just need to monitor it x

[YellowSocks]

(Sorry I ended up writing a whole essay in the end! I personally found that fully understanding it takes a lot of discussion and explanation)

It is a tricky condition as it is poorly known by the medical profession - I’ve had to tell paramedics to google it before!

I will explain my own experience and understanding of the condition to see if you relate at all and to help you understand the condition more, but please bear in mind everyone’s experience is different!

My grandma, mother, both my sisters and myself all have it, with my elder sister and I not first having a seizure until late teens/early 20s (it surfaced in the others much younger). We are lucky ours is quite mild, only having a seizure once or twice a year on average, so I can’t speak on behalf of people who have it much more regularly. None of us have the problem of needing resuscitating from too big a drop in oxygen, but there is definitely a drop in oxygen from the heart stopping and we are incredibly weak and pale after, not able to stand until we’ve stabilised and often needing to sleep for a good while.

In terms of understanding the condition more, I’ve heard it explained well as a form of ‘dysautonomia’ where our automatic nervous system is dysfunctional and overreacts to a variety of forms of shock (we’ve found all of our triggers vary but all are some form of shock to the system, ours include sudden pain, illness, intoxication, emotional shock, eating a lot on a very empty stomach and once just a hard swallow...!). The overreaction comes from an over active vagus nerve that causes the heart to stop, then causing a lack of oxygen to the brain. You black out and drop to the ground - sometimes very stiffly, or you’ve already laid down and black out from your there. The lack of oxygen to the brain then stops the signals that make the heart stop and so the heart restarts (as this is its default state - to pump). This is why it’s important to be lying down (though usually inevitable from the seizure anyway) as you need blood in your heart when it restarts. During the seizure from an onlookers perspective often your eyes will roll over and your back will arch, sometimes wetting yourself and choking on your tongue. Lasts roughly 30 seconds (so we tend not to worry about the choking as it’s not for long enough to suffocate), but for an onlooker it feels like ages while witnessing the seizure. Afterwards your consciousness slowly creeps back, initially like a rollercoaster of dreams, then realising you are somewhere, and you feel like a computer rebooting slowly trying to remember all the tabs that were open, very fuzzy sound in your ears like static, and once you gain some more awareness of who you are where you are and what happened you tend to let out an involuntary cry as a result of the trauma that just happened. Feel very vulnerable and weak after. Best advice to give people is to leave you lying down and let you stabilise. We’ve found medical attention can’t do anything for us, that just staying lying down for as long as we need seems sufficient for recovering, and just feel pretty weak for a day or few days. Ambulances are pointless for us (though sounds like are necessary for you with needing an oxygen resuscitation) but people tend to call them for us anyway in the panic of seeing the seizure (hence the previously mentioned paramedic situation)

Part of the ‘package deal’ of the condition is having low blood pressure which can fluctuate in quite how low it is. Normally it’s fairly mild and just has small effects such as occasional momentary loss of vision from standing up suddenly etc. However some days are worse and we find it very hard to function normal, feeling very deflated and quite vulnerable, wanting to stay put and sitting/lying down as much as possible. We feel more vulnerable to seizures on these days. Other occasions when we’re more vulnerable tend to be times when we’re very sleepy, low adrenaline, hungry, ill, cold, etc. And feel least vulnerable at times when we’re in more high adrenaline situations.

We also have what we’ve termed ‘near misses’ in our family, where we come close to having a seizure but don’t actually have one. Usually from a weaker version of our usual triggers. An example would be suddenly hurting ourselves and feeling a sudden drop in our blood pressure, laying down and sometimes a loss of vision and a fuzzy ringing noise in our ears, but not actually losing consciousness. Tend to need to stay laying down for a while and can sometimes feel like you’re ‘clinging’ at consciousness by a thread, feeling like a small change could push you over the edge and feel sensitive to even just touch, change in temp, noise etc. Very surreal experience and it tends to really confuse people around you as they can’t tell the state you are in internally, just see you appearing to feel faint but in a really ‘dramatic’ way.

We have experienced times when, due to a lack of understanding, people have been very dismissive and intolerant of the condition. Most usually come to terms with it more once witnessing a seizure, though I’ve even had someone yell at me to stop it and accusing me of faking, simply because they hadn’t heard of the condition. Understandably people can react in a variety of ways to things they don’t understand, so I somewhat forgive them reacting badly, but it can be hard to be on the receiving end of when you’re feeling so vulnerable and need to rest and recover, so watch out for people who are like this and best steer clear of them. Most importantly if you have a partner they really need to take the condition seriously!

Okay I think I’ve managed to splurge everything I can think of about the condition....! Have a biscuit if you read this far. Hopefully it will help you and anyone else with their understanding.

Big love and wishing you all the best with getting an accurate diagnosis of what’s happening to you! X

[YellowSocks in reply to YellowSocks]

An added note: I’ve heard of people who get them far more regularly getting a pacemaker to help prevent the seizures.

[ZebrainFoxarmour in reply to YellowSocks]

Yeah this has been a previous suggestion from my cardiologist because I don't tolerate beta blockers very well for my arrythmias too. Its so helpful to have this site thank you so much guys xx

[ZebrainFoxarmour in reply to YellowSocks]

Wowsa that hit a lot of familiar notes,I did chuckle when you wrote 'even a small change could push you over the edge' the amount of times I have bit at people for gently comforting me with a touch because it makes me feel horrendous lol. Totally inexplicable to explain to most people, thank my hubby for tolerating me. The only thing I'm unsure of though is the length of time... every single thing sounds the same but mine can last as long as 20 minutes plus as far as I'm aware my heart doesn't stop just my blood pressure takes a huge dramatic drop however I have been told that telemetry last admission showed possible AF or VT but they have only just picked this up after I ordered my notes... so I have had huge issues but this is half the problem. My local hospital is one place but my specialist because I have a rare condition is in another and the two can't communicate let alone with me.

[YellowSocks in reply to ZebrainFoxarmour]

Sounds like it could maybe be a similar kind of condition, but not the exact same? Like a ‘cousin/sister’ condition. Similar general symptoms etc day to day, but the actual ‘episodes’ differ, being far longer and not involving the heart actually stopping... possibly could be having very intense ‘near misses’?? Hard to tell, and it must be such a pain that the medics are struggling to figure it out - hoping they eventually do! Hope this has at least let you feel more related to and that others understand your experience in general

[ZebrainFoxarmour in reply to YellowSocks]

Thanks hoping they figure it out soon, they are putting me on telemetry today so hopefully get some more answers xx

[YellowSocks in reply to ZebrainFoxarmour]

Telemetry is tricky as the AF and VT don’t always crop up during the monitoring, might be worth asking to have a monitor for a couple days so that it’s got a higher chance of catching it when it’s happening. We’ve found when monitored briefly and nothing shows they then announce that we don’t have it at all, when actually we do just at random unpredictable times! X

[Iva93 in reply to YellowSocks]

Thank you for this. Really great explanation