How many of you have taken the journey for underlying causes via blood tests and hormones and nutrition?
We refuse to live with medicating the seizures as the only solution and are looking for people who have taken this journey and what they have discovered. We are considering a Functional MD and Nutritionist.
16 yr old female
Diagnosis: Generalized Juvenile Myoclonic
First onset seizure: 7 mos ago
Type of seizures: tonic-clonic
Frequency: 1 per day for two days which led to diagnosis. Has had 6 tonic-clonics over 7mos period
Treatment: Keppra 3500mg/day
Present Day: Went 2.5 mos without a seizure. Then, last weekend had tonic-clonic on back to back days as she started to ovulate. Lack of sleep not an issue. Concluding that the seizures may return with regularity or that the Keppra was no longer effective, we spoke to the doctor. He gave us a choice between Lamictal and Zonisamide. We chose Lamictal.
Again, anyone taken the journey to step outside of the matrix?
Thank you in advance.
Rick
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apache31
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This is long⬇️ but I’ve tried to answer your post as fully as I can
On the night of my first emergency admission last summer ,bloods were done, a CT was done, apparently the FAST (looking for evidence of a stroke ) was done. During that weekend, a lumbar puncture was done, EEG’s were done , one MRI was attempted (but I had a tonic clonic in the mri scanner 🫠) followed by another MRI. Nothing abnormal was found. They thought I’d had an aneurysm or a stroke since it wasn’t a typical presentation for first seizures. My first admission was on a Saturday evening and I was given the diagnosis on the Monday morning. My only (?) question to the consultant who told me was “why?” . There are no answers in my case. I don’t know what triggers my seizures-neither does anyone else involved in my treatment , my medication definitely has helped in reducing the frequency of seizures but they are still frequent.
I looked at diet and quickly ruled out the idea of the ketogenic diet that’s offered to some epilepsy patients at my local hospital (have been vegan for decades ). I’ve already had to go against my long held beliefs because of epilepsy treatment. Insomnia has been the norm for me for most of my life so I don’t believe it has any effect on seizures. Same with stress. I had early menopause 6 years ago, have never taken HRT or the contraceptive pill before it. So I don’t feel it’s linked to hormones. I still want to know the answer to but why ? and still want to know but when? Will it be controlled? There are no answers to those questions yet and perhaps never will be so it’s a case of sticking to the medication regime and it being adjusted by medics as/when necessary.
So if there’s a matrix, I’ve stepped way out of it. I hope you find answers needed (is it your child you’re writing this about ?), and any other things that help in managing the seizures and that you are able to give updates on what’s being tried /what effects it’s having. I do know that suddenly stopping anti epileptic drugs is a huge no-no (please don’t, it needs to be done under medical supervision).
I really appreciate you taking the time to write. Thank you. The initial blood tests they do at onset are general, bodily function in nature and to test for the presence of street drugs. I do accept that, in this life, we may never get the answers to many of life's questions. I've also come to realize that there are varying degrees of treatments and outcomes. However, I also believe that greater understanding in any endeavor only ends when we cease searching. I believe we can accept the circumstances in our lives yet still seek solutions. I am not convinced western medicine agrees with that statement and so we will push on. There seems to be a lack of info by patients and medical professionals who have earnestly stepped outside the bounds of tradition.
I know that on that first admission, in a&e they checked my bloods for street drugs ,etc (which were clear since I’ve never used any). I have regular full blood tests done (every 6/8 weeks) for other reasons at my gp practice (has gone on for years). Thankfully within the NHS that data is shared so all clinicians can see it whenever needed .
I completely agree; people need to be curious, use critical thought, ask questions and to learn (including from history ). We also need to be educated . It’s such a shame that neurology in general is very poorly funded in terms of medical research & public awareness. That’s something I’ve found increasingly shocking & will be doing all I’m able to if /when I’m can to push for that to change.
I really hope that the 16 year old has a good understanding of their epilepsy, and how they would like it to be managed. Epilepsy definitely teaches patience since every change made could potentially impact on it & has to be risk managed to a huge extent. It’s so good to have trusted people around who can help such a young person to manage those risks well as managing being 16 in itself :).
in reply to
And-
I’m prescribed [and taking ]400mg Lamotrigine daily -no side effects
I am also taking 100mg Briverictam daily. I may be having side effects (in terms of mood..).
Good Luck apache31👍 I am aged 67, retired had Juvenile Myoclonic Epilepsy since the age of 14, had over 400 seizures grande mal in that time, been through every sort of tests, medications etc, even my epilepsy neurologist has shook my hand, nothing more can be done for me, I am terminal. since Jan 2018, double seizure, broken skull, and "untreatable" rib cage structure, a "survivor" been very lucky, years of practice, have 'Auras" before the onset, since been officially confirmed in July 2021 MRI "the next seizure will probably be your last" my last one seizure was April 2023 in bed!😵🤗
I have found over the years many epilepsy drugs have proved worse than the actual seizures, definitely life changing, if I was given the choice at least four I would NEVER have taken them in the first place, long term effects of some other ones still affect me today, the main trouble is that the brain is the most complex organ of the body, thus probably the hardest to treat. If you have a complicated/colourful medical history, which I CERTAINLY do have, other medical conditions have to be taken into consideration, my GP calls me a "one off!"
NEVER try to take medical or non-medical alternatives off your own bat, epilepsy is too complicated a medical condition, unfortunately you have to respect that, too dangerous otherwise!
I really appreciate you taking the time to write as well Adlon. Thank you. We'll always err on the side of caution for certain. However, I believe there is someone doing work outside of the bounds of traditional medicine as we are not the first to experience this condition. Nor the first to desire a breakthrough. I believe it will come.
I certainly hope so, after 50 years with the bl#### condition and so many promises of miracle breakthroughs, I doubt if it will come through in my lifetime!👍
Hi Rick, (if Imay) I have to agree with Stef. Although our circumstances might be different. The common factor is Epilepsy. I was diagnosed nearly 50 years ago. Before leaving hospital (nearly 50 years ago) the Dr said to me; Mark, take this medication and there's a very good chance you won't have another seizure. Don't and there's a very good chance you will. I'm taking medication. I do not want another seizure..!
If this is not you, but a 16 year old. By all means pursue what there is other than medication. However, if YOU have never had a seizure . Believe me, you don't want one..!
There appears to be lots of information out there regarding diets. You'll probably find someone saying; this worked for me.
Do not take things in to your own hands and play with medication. I've had epilepsy for 50 years and tried 9 medications in the last 7 years. I still have seizures. Lamictal can cause weight gain, irritability, anger, headaches and chronic insomnia. It also causes hair thinning and loss.
My son 16 at the time was put on Keppra first unfortunately it didn’t stop his seizures but since Lamictal was added over a year ago now he has been seizure free. The frequency of his seizures also TC seemed to be every 4-6 weeks prior to Lamictal being added. He had 5 seizures in total also generalised he doesn’t get a warning. Hopefully things settle soon for your daughter. Lamictal seems to suit my son just fine he was tired at the start but has adjusted well with no side effects.
good to know. my daughter is on 3500mg keppra and just started lamictal 12.5 mg at night only for two weeks. slow ramp up to avoid possible rash. they do the slow lamictal dosage with your son as well? Just curious, are you in the US or?
No in Ireland. Yes the lamictal was started at 25 mg and slowly titrated over a number of weeks. He was tired and had flu like symptoms at each increase but once he was on his stable dose these soon settled.
Just thought I would comment on working outside the ‘matrix’. I’ve had epilepsy for nearly 50 years. Started off with seizures at around the age of 5 every day mostly tonic clonic but after the age of 15 the frequency dropped away significantly when they moved me away from high dose epilim to tegretol. I’m now on a very low dose and touch wood with management which mainly is avoiding flickering lights I’m relatively trouble free. I know I still have epilepsy though since I also get near miss auras. This experience though has left with with a skeptical view of neurologists (and teachers but that is another story). I think there is far too much bluster and nonsense spouted by neuroscientists to cover up what they don’t know. This is despite them making me ‘better’ with aed’ s. At the time there was no known cause of my epilepsy as is the case for most people I believe. My cousin later developed epilepsy and now so has my nephew so it’s looking like it may be genetic. It would be good if a genetic study or two could be carried out but I rather think it’s easier to ignore funding for us due to stigma in the medical profession and society generally.
Sorry needed a line break because that was longer than I thought.
Anyway regarding the matrix. I think current inadequate western medicine is the best we have got unfortunately. Alternative medicine has the same biases/stigma but rather than ignoring us they see us as a dour fe of income . I work in nutrition for my job and I’m increasingly shocked by the amount of unregulated and unscientific woo that’s peddled from unqualified (and sometimes qualified) nutritionists who like the neurologists peddle pet theories. My general advice to anyone is to view anything you see on the internet about diet and nutrition as having a high likelihood of being wrong or misleading (around 90% of it). If you look for the warning signs (advertising links, suggestions for consulting fees or book sales) and remove these you may get down to a 50:50 chance that it’s got some validity but even then you are down a rabbit hole. I can’t comment about anything else but that’s my experience…be very wary of nutrition based remedies. Sorry if that’s a bit of a downer …. Sometimes there is no answer available in our lifetime.
I think we should have far more funding into research given how disproportionately we are funded vs other less common conditions (that are less stigmatised). Only then can things change.
Wouldn't be "afraid"of stepping outside of the matrix. Being an intelligent, educated, could even say, mildly science based background, I've found the NHS/medical profession to be a joke. After 5.5 yr's of seizures, have hardly had an individual speak to me yet, the NHS/medical professional background, demonstrating an absolute failure to have any involvement in the management of my seizures (Nb. I.e. My diagnosis? Done via an ad hoc phone call to an A & E Unit, by some Dr who's still never met or spoken to me. Absolutely missing critical issues which had led to an initial seizure. The approach throughout, has simply been to try and dump medications on me, whilst routinely demonstrating an absolute absence of knowledge, in relation to my seizures. Found it necessary to thrash the NHS in court, 2021, it was a joke. I've found it best to collate data relating to my seizures, effectiveness or otherwise of anti seizure medications and manage my seizures on a fact based basis (Nb.I can imagine the same NHS professionals, opting to amputate somebodies leg, with a diagnosis over the phone, the explanation being that cutting a leg off, will solve the grazed knee issue.)
"many epilepsy drugs have proved worse than the actual seizures, definitely life changing"
+1, in relation to a post made above. I trialled 36 months refusing medication and given the precise periodic basis on which I experience seizures & their relatively mild nature, found it an effective approach. Simply found it was worth avoiding"hi risk activities" during a seizure period. Moved onto medication 32 months ago at my instigation, in an attempt to move forward. 1st two medications have proved highly counter productive, the negative side effects of medications, outweighing their benefits by perhaps 50/1, am still suffering the negative side effects. At my instigation have insisted on moving onto another medication recently, am trialling it (Nb. Dr's locally, as normal, simply wanted to dump higher quantities of the AED onto me - was only last week I tried to explain to a relevant Dr, that the dose I'm on has proved effective & would appear to be a bit absurd to increase the dose by 50%, just because that can be done). I much prefer collating data as to the actual dose I'm finding effective and will take an evidence based approach
Hi, both my brother and I have Juvenile epilepsy and were diagnosed at 17 years old. He was given medication and fought against it, did all the things he should not, would not sleep for a couple of nights, drink to excess and had more seizures than me. He also worked shifts and seemed much worse than me, he finally gained control with the right medication and looking after himself better, no alcohol, change of job, better sleep. I managed without medication initially, tried to be careful but every now and then would relax and end up with a tonic clonic. I now also know I was having absence seizures as well. I trained as a nurse and the seizures increased, juvenile epilepsy gets worse with early morning starts. When my daughter became unwell it was suggested I started medication as I became her carer, I had already changed my job to try and reduce the seizures, rarely drank alcohol and was doing what I should to keep them to a minimum but it was not enough. 24 hour EEG showed I was having multiple seizures per day, which were the absence and myoclonic seizures that I had told them about but they were not listening at the time, so I am now on 2 types of medication, epilim and ethosuximide and feel so much better. The consequences of it taking so long for them to treat me has been that I have had a seizure and fallen on 1 of my daughters, the anxiety it has created in my daughters as they have watched me have seizures, 1 daughter has resuscitated me when I stopped breathing and they were too scared to leave home until I have stopped having seizures. It was not my choice to not be treated and I wish they had treated it sooner so our family would not have gone through all of this. In the end we have both needed medication and had to follow the epilepsy lifestyle guidance to gain better control it's just he was given medication at the beginning and I was not which was strange but we got there eventually. Good luck and take care!
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