Help?

Hi all, I hope you are well!

I'm a 22 year old woman and I've been suffering from some odd symptoms for a while, but they've become very frequent since June.

I began getting dizzy, and experiencing weird sensations. I would have episodes of going weak, and losing sense of my surroundings. Things would appear tilted and I'd lose sense of distance. Cars would feel like they were about to hit me and the ground moved. Then it would fade away.

I developed eye floaters. I then began getting aura, seeing lights, halos, outlines of objects and pinpricks of light. These lights are now constant, rarely do I have a headache.

I've always been prone to nausea, so this continued. I'd get bad episodes of shaking and vomiting, accompanying the aura.

I have episodes where I just stare off into space, almost as if my surroundings are being muted out. I completely cut off from reality then abruptly return, to the confusion of people with me. I come back and sometimes say nonsense things. The other day at dinner with friends this happened, I was pulled back into reality when I loudly declared "Netflix!" much to the confusion of everyone around me...

I've began developing pins and needles (painless) and numbness, starting in my fingers and travelling up my arms and into my legs and feet. I've had tingling along my skull and the left side of my face has developed a large twitch.

My body temp drops very low (33.1 Celsius) and my vision blurs. I get very confused and feel drunk and afterwards I feel spaced out and drained.

Last week I awoke suddenly and dragged myself out of bed. My limbs felt incredibly heavy and I fainted twice, with ears ringing incredibly loud. I found myself vomiting in the bathroom and unable to communicate or speak to my boyfriend. It was as if my body couldn't respond to my brain, I felt trapped in. Then utterly exhausted I passed out. I had aura and lights the following day, for hours.

I get de ja vu and find myself staring off into space, stuck in a memory, whispering to myself. I occasionally get a strong sense of smell, or smell things that aren't there.

I have aura most days, but I have never had a big seizure that is often associated with epilepsy, but I am now wondering if this is a possibility for me?

I am seeing a neurologist in May and have been told I have migraine aura, but I am unable to find a doctor that can understand my constant aura and these weird physical episodes.

Any advice greatly, appreciated! Thank you very much

K x

20 Replies

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  • Hi kalmillar,

    The symptoms are very similar to mine when I was diagnosed with complex partial (focal) epilepsy of the temporal lobe (left medial).

    Initially I was told it was probably a chronic migranous episode but later change to epilepsy due to finding a definite cause.

    Have you spoken to your GP about this recently? If not it would pay to see him and see if he feels that it would be beneficial for your neurologist appointment to be brought forward.

    If you have already been diagnosed with epilepsy and have an epilepsy nurse they may be able to advise you better (I'm not medically qualified) as it may be that your medications may need adjusting, changing or that something else is interfering with them. I had a bad reaction to a change in blood pressure medication which interfered with the AED's triggering 2 seizure and a black out within four hours of the first dose. It was a rare reaction, not to the drug itself but the salts used to deliver it in the tablet.

    It's always worth checking with the pharmacist when given or buying ANY extra meds. Even over the counter and natural remedies can cause serious problems with AED's.

    As I say it would be best to see a doctor or specialist nurse, especially as you say the symptoms have been increasing in occurance and strength. It might be best if you were to make a note of any thing that might trigger them i.e. stress, tiredness, time after taking any meds. Also write down a list of them all and the questions that you want answered, it save forgetting the important ones when flustered in front of doc.

    Not much reassurance there I'm afraid but a GP, consultant or specialist nurse should be able to put your mind at rest.

    Take care

    Sporan

  • Hi Sporan, thank you so much for your incredibly helpful and detailed response.

    I am not on any epilepsy medication, my doctor was tempted to try me on some for the 'migraines' but then decided on Attenolol. This medication has been increased after my blacking out episode, but its done nothing to curb the aura or the strange episodes.

    Thanks for your advice regarding AED, should I be put on this medication I will be sure to check everything carefully. I have had bad reactions to medication in the past and I find doctors rarely offer guidance on taking medications.

    Thank you again! Take care

    K x

  • These sound like serious symptoms, so if they are something you have not spoken to a doctor about before I think you definitely should. Like sporan suggested, either bring forward your neurology appt or contact a GP or nurse in the interim. I think if it were me, May would definitely be too long to wait...

    I hope everything turms out OK xx

  • Hi Amy, thanks very much for your input! I have spoken to countless doctors about these symptoms and have just been told repeatedly 'its all very weird' & not been given much guidance beyond this.

    I think you are right, May is too long as I am having these blank attacks multiple times a day, constantly seeing lights and having more severe physical sensations a few times a week! But its hard to get a GP interested. I'm guessing GP's dont know much about epilepsy?

    Thanks again for your advice, take care! K xx

  • Most GPs won't know much about epilepsy. They often have a couple of illnesses which are their "special interests". When I used to live in Sheffield, I saw a GP who had a special interest in epilepsy. She usually did my annual medication reviews and if I wanted to make an appointment which I thught might be epilepsy-related I would try to get to see her rather than one of the other doctors. If you don't have someone like this, try to get in touch with a neurologist or epilepsy nurse to talk about it.

  • This sounds like seizure activity for sure. It sounds like you may be having several different kinds of seizures. Absence seizures affect the entire brain, and staring into space and being cut off from reality sounds exactly like the symptoms of absence seizures. Many people with epilepsy experience auras that happen in conjunction with their seizures.

    In the US, there are neurologists who specialize in epilepsy, and from reading this site, it sounds like the UK has medical specialists with similar expertise. If your neurologist is not such a specialist you might ask him/her for a referral to one.

    Seizures are usually not life-threatening, and many can be controlled with medication. However, not all medications work the same for everyone, if at all. It can be a frustrating experience to find something that controls the seizures (it took me 7 years), but with perseverance, you'll learn a lot about epilepsy and medication, etc. I would recommend learning all you can about whatever medication is prescribed for you, and especially how medications interact with each other if more than one is prescribed.

    Good luck!

  • Hi Beki, how did you manage to get your epilepsy controlled in end? My niece is being constantly changed from drug to drug but hers is still not controlled. Any advice would be helful. Where do we go from here? she is 15 and was diagnosed at 13

  • I was also given drug after drug (some with horrendous side effects) until, finally (after 7 years of grand mal seizures), someone recommended a new neurologist who decided to try a drug released earlier that year--Lamictal (or Lamotrigine.) Originally designed as an antidepressant, they started prescribing it for epilepsy, Some people (like me) say it works great. It doesn't work so well for others, and it doesn't work at all for some.

    I believe strongly that my epilepsy is hormonally-related. I started acting weird shortly after puberty, and no one knew what was going on--for years. I now believe I was having complex partial seizures which generalized into tonic clonic seizures when I was around 40. (I usually had a grand mal seizure one day after my period started, in the middle of the night.)

    My last neurologist told me the seizures would either get really bad when I went through menopause, or would go away. I am now post-menopausal and have been decreasing my medication gradually (without doctor approval) ever since. I'm now taking less than half of the prescribed dosage, and experiencing no seizures and fewer side effects from the drug.

    My accumulated experiences have made me pretty cynical about the medical profession. Our brains are so complex that I don't think anyone has a handle on what causes epilepsy, the side effects of various drugs are, or how various drugs interact with each other. Doctors seem to believe the only way to handle a problem is to prescribe drugs to eliminate the symptoms (rather than looking for the cause.) And most prescribe other drugs to eliminate the symptoms caused by the drugs they prescribed earlier. (I've talked to people who have experienced horrible side effects from the cumulative effects of several prescribed drugs.)

    I recommend that you check with several neurologists, listen to your daughter, take detailed note of her symptoms (to help determine what, exactly is going on), follow your instincts, and do a lot of research on your own. I always ask every single doctor how any drug they prescribe for me will interact with Lamictal, double check with the pharmacist, and research it on my own.

    I'd also look into the ketogenic diet if I were you, which has helped many people (again, it hasn't worked for everyone, but I believe it's worth a try.)

  • I also think my epilepsy (and probably JME - juvenile myoclonic epilepsy - in general) is hormone related. For me, my first seizure arrived within a week of my first period. What more proof do you need??!! Well, it also goes away for a lot of people after puberty. Not me, unfortunately, but my sister-in-law also had JME as a teenager and now has been off her meds for over a year with no activity at all.

    I work in the pharmaceutical industry and I can tell you that medical people really do care, but epilepsy (and all neurological diseases) are just incredibly difficult to treat, and although some of the mechinisms that trigger a seizure are known, it is very difficult and costly to develop new drugs which target them.

    I would recommend having a look at this special issue of Nature: nature.com/nature/outlook/e...

    Some of the articles are scientific, but some are more accessible. In particular, look at these very clear graphs from one of the articles (the Epidemiology one):

    nature.com/nature/journal/v...

    These give lots of useful infomation on the different drugs (epilim is a form of sodium valproate, keppra is levetiracetam) but the most interesting is the one at the bottom. This shows that most neurological diseases recieve reasonably proportional funding (in the US) to how prevalent they are in the population - except epilepsy!!! Our condition is WAY underfunded! Just something to think about...

  • Hi BekiP, thanks for your reply. I'm weirdly glad to hear that you think this sounds like seizure activity! Never thought I'd ever think that...these episodes have been constant since June and it's causing havoc with my life. I've not been able to get a doctor to say anything other then 'I don't know!' or 'this isn't my area'. Being told these blacking out spells and intense light shows I'm seeing is related to chronic fatigue is incredibly frustrating.

    I will make sure my neuro is a specialist in epilepsy, from the hospital website I believe they will be. Thats great advice, so thank you for sharing your wisdom!

    Best wishes & take care

    K x

  • Hi Kalmillar,

    I see you mention 'chronic fatigue' being used as a reason for your problems when in fact it could be the other way around.

    Pretty much everyone here will tell you that after any seizure activity there usually follows a period of chronic fatigue during the recovery phase and it is important that you pace yourself because tiredness can trigger a seizure.

    It's really difficult to be specific because epilepsy is such an individual thing. There will be many similarities, for sure, but each will have varied different symptoms or effects.

    The stress of the unknown and anxiety can also trigger seizure so at times it can be a vicious circle. With the right diagnoses and treatment, even though it can be a long time in finding the right drug and dosage, there is light at the end of the tunnel.

    I hope that your neurology appointment can be moved forward and answers found for you so that you are able to understand what is happening and then gain control of it, even if it is only in part. I used to get multiple daily absence seizures and now with the drug regime they've been reduced to 2 or 3 times a week. Don't be disapointed when I say that, many people gain full control, mine is difficult because of the underlying issue causing the epilepsy.

    Please keep use up to speed on your progress.

    Kind wishes

    Sporan

  • Hi Sporan, I think you are right. I come out of these episodes feeling hung over and exhausted, but then the spell breaks and my head feels clear! Like a storm has passed, such a strange experience but very far from any description of Chronic Fatigue that I've read.

    I'll be sure to keep everyone posted, thanks so much for your advice & support. Best wishes & take care.

  • My pleasure. Good luck!

  • I also thought some of that sounded like absense seizures which I used to get a lot. I would be so ebarrassed to find myself in the middle of a conversation with someone having no idea what we had been talking about...

  • I agree with what everyone has posted above. It definitely sounds like you are having some forms of seizure activity. Keep a note of when they happen and keep at your gp. This way its possible your neuro app can be brought forward. Maybe your gp could perscribe you an anti-seizure med in the time being until your seen. My Gp gave me Epilum until I had my first ever neuro app a few years back. Take care. Hope all works out

  • Hi RR25, thanks very much. I'm going to push for an earlier appointment and see what my GP can do medication wise until then. I've also began keeping a diary of these weird episodes. So thanks very much for your advice, incredibly helpful! Take care, K xx

  • This sounds like seizure activity! Please speak to the Neurologist in May and bring up all the symptoms... Don't leave it... Migraine is connected with epilepsy, and everyone is different... Remember, we all have different forms of epilepsy! Perhaps see the Neurologist earlier if you can!

  • Hi Lesmal, thanks for your input, its really helpful. I'm quickly learning how complex and vast epilepsy really is. Seeing the GP soon and hoping to get my neuro appointment sooner, as these 'episodes' have been fast and frequent lately, one while cooking, making me burn myself!

    Thanks again for your advice, take care x

  • Hi kalmillar,

    Am pleased to hear you are seeing the GP soon and then going to your Neurologist appointment sooner... It is essential some sort of control is made. Many years' ago, I had episodes also of burning myself with cups of coffee, hot water and more... Please keep us updated on your progress! Good luck with the visits!

  • Hi Kalmillar,

    Your symptoms of absence are sounding very similar to mine, and your heightened senses seemed to be with your nasal. Not being able work out certain styles of smells, after it sending nerve activity to the afflicted area of your brain. Then causing a nerve reaction the same as you trapping!! your finger in a door.

    The problem I had for a number of years, was the medication over stimulating my nerves that were already being over stimulated by my epilepsy. And being taken down this constant road of mental health? Your nerves are your senses not your thought, and it is a very cardio respiratory medical condition. If you were born with it genetically, and didn't realise that you had it until you got to a certain age. Then it's good to see it in a fitness sense? it hit me when I was 21 and I'm lucky to still be here. But over all the years of extreme side effects, and incredible seizures I've realised that monotonous sound is a hard thing to deal with. but with my fitness at the level it's at now, I can receive a wave of heightened nerve energy that doesn't frighten me. And quite easily control it if I'm feeling a bit fatigued, or emotional by breathing in through my nose and out through my mouth. Breath in yours nose and out of your mouth sends oxygen in the top of your lungs, and out through the bottom sending fully oxygenated blood through your body, and into your brain weakening your nerve activity. That is why the gym is a KEY!! to controlling and understanding your epilepsy. But you need to know how to breath correctly through exercise, to gain the strengths in your body. And not over stress your blood pressure or heart, your natural highs Endorphin!! are needed for epilepsy.

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