Seizure and back pack

[SunSparkle]

I had my first ever tonic cloning seizure in late June. I’ve got a referral to the first fit clinic which should be a 2 week referral but is likely to be 10 weeks. Until then I won’t know what caused the seizure but it was several minutes long.

immediately after the seizure and for two weeks after I was in a large amount of back pain - any sharp intake of breath hurt, yawning hurt, couldn’t lift my toddler, was very weak.

now coming up to 7/8 weeks later, I still have awful back pain from my shoulders the bottom of my rib cage. It’s worse at night when I lie down and I can’t sleep properly.

for anyone that has seizures, is this normal for the pain to continue for so long? Could I have done an injury to my back?

go has referred me to physio next week.

Have you had any x-rays Op?

I have epilepsy and am always sore (bit like I’ve been to the gym) for a few days after a seizure but I would say this amount of pain for so long sounds like you have injured yourself. I would go to your GP and get yourself checked you. Hope your first fit clinic appointment goes well- mine also started in adulthood and I know how scary it is.

@Fraaahnces no. I thought it would go away or I would get my first fit clinic appointment so I’ve been pushing through. Physio on Monday and hopefully they will refer me for an x ray.

@BigHeartyTruffle thank you for the best wishes. It is all a bit scary. I expected the pain in the first few days as even muscular contraction can make you feel sore but it’s been going on a long time now and I wake up in pain throughout the night. GP is sending me to the physio on Monday to see what they think.

Hi OP - my teenage son had a tonic clinic seizure in February. It was utterly terrifying, but thankfully he has been fine since.

One of the difficult things with seizures is that it’s often difficult to be categorical about the cause or future outlook if the tests come back clear. If it’s reassuring at all, doctors told me that seizures are relatively common (1 in 20 of us will have one in our lives) and often they are a ‘one off’.

When it comes to the back pain, it is very common to have pain following a seizure. My son had intense back pain following his and it turned out he had some fractures on his spine, which one consultant thought was caused by the muscular contractions of the seizure. I am not 100 percent on this for various reasons I won’t bore you with - but it’s worth having and x-ray and getting your back properly checked.

@Onthechaise glad your son is better now. I don’t think they will find an answer for the fit unfortunately.

what you describe about spinal fractures is what I’m worried has happened. I’m pretty sure this level of pain this long after the seizure isn’t normal and it takes my breath away at times. My sleep is really poor and I’m constantly knackered as well as the pain.

what treatment did you get for your sons fracture?

@SunSparkle - thank you. My son wore a back brace for a month to help with the healing (uncomfortable but he got through it) and wasn't allowed to lift any more than 2kg (easier said than done with the school bag!)

The reason I'm a bit questioning in my son's case is that he had complaining of back pain BEFORE the seizure happened (he had been playing sport the previous day and a teammate thwacked him on the back!), and it seems a bit weirdly coincidental that the seizure would have caused a fracture in exactly the same place 🤔 It's not like he fell against a hard surface when it happened either. The spinal consultant was insistent that the fracture was caused by the seizure, although another doctor disagreed! So I'm not sure...

Either way, if I were you I would go to A&E, explain the history and insist on an ex-ray so they can determine what is happening with your back. Hope you recover well xx

@Onthechaise thanks for sharing the details. Did he see/get a referral to a spinal consultant through the GP?

im going to go to the physio on Monday and hopefully they can just authorise an X-ray rather than having to sit in A and E but if they don’t I will definitely go. I know something isn’t right.

Hi again. The referral to the spinal consultant was through the hospital - my son was admitted onto the paediatric ward. I can’t remember if the x-ray was part of the standard tests they do after a seizure or if they did it because his back was hurting so much.

Either way, I remember the paediatrician saying she was actually more concerned about the fractures than she was about the seizure! We were then referred to a specialist spinal doctor at a different hospital.

it definitely sounds like you should push for further investigation. If you know something isn’t right and it’s significantly affecting your life then be an advocate for yourself. I think physios can authorise x-rays but if not go to A&E and be insistent! Good luck and I really hope things improve xx