Seizures and celiac

[healthysquirrel]

On 12/12/2018 at 1:13 AM, Posterboy said:

healthysquirrel,

If it (seizure) is of an unknown cause it is idiopathic.  .... usually happening with no known trigger.

don't discount the flu.  .. especially if you had a high temperature.

It usually seen in children called a "febrile seizure".

Here is an article on it.

https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Febrile-Seizures-Fact-Sheet

But it can happen in adults with flu's.

I had a friend who's mother had a similar episode that went away after she recovered from the flu.

But it it should be noted . ... it was a common symptom' of that flu type and had been seen by other patient's in the same outbreak (in a limited geographic area)

She has not since had a seizure so it is assumed the flu triggered it.

If the seizures continue to happen . .. it is not idiopathic.

there is trigger it . .. .just hasn't been isolated/discovered yet then you should look into your Manganese and Magnesium levels some more.

 It is soo/too easy to supplement with Magnesium in the Magnesium Glycinate form or with Epsom Salts to see if it helps you.  Too not try it  . .. in my opinion.

Any fatigue issues usually greatly improve while taking Magnesium and as I noted earlier my Charlie Horses (Cramps) have never came back.

Again, I hope this is helpful as always but it is not medical advice. 

As always “Consider what I say; and the Lord give thee understanding in all things” this included. 

2 Timothy 2: 7 

Good luck and God speed on your continued journey.

Posterboy by the grace of God,

Thanks so much Posterboy!!! I bought magnesium salts to soak in when i get home from work. A naturopath here told me it absorbs faster through the skin. https://www.ncbi.nlm.nih.gov/pubmed/27624531 

I am open to the idea that my seizure might not be related to a glutening. I just wish I knew what triggered it, so I could avoid it. 

It sounds strange seeing as I was just in the hospital and have been in quite a lot of pain for the past year and a half, but I feel better. I guess I am starting to heal? My physiotherapy (super painful shockwave therapy for plantar fasciitis) is working.

I can walk for even up to one hour without much pain. I was walking from the tram yesterday and had a strange almost caffeinated feeling. I had no idea what it was, it felt like a feeling I have never had and then I realised, I feel better. I guess my GI was right, I have likely had Celiac my entire life, so feeling well is a new foreign feeling that I am happy to discover. (I know there will be ups and downs though). 

 

[Posterboy]

3 hours ago, healthysquirrel said:

Thanks so much Posterboy!!! I bought magnesium salts to soak in when i get home from work. A naturopath here told me it absorbs faster through the skin. https://www.ncbi.nlm.nih.gov/pubmed/27624531 

I am open to the idea that my seizure might not be related to a glutening. I just wish I knew what triggered it, so I could avoid it. 

It sounds strange seeing as I was just in the hospital and have been in quite a lot of pain for the past year and a half, but I feel better. I guess I am starting to heal? My physiotherapy (super painful shockwave therapy for plantar fasciitis) is working.

I can walk for even up to one hour without much pain. I was walking from the tram yesterday and had a strange almost caffeinated feeling. I had no idea what it was, it felt like a feeling I have never had and then I realised, I feel better. I guess my GI was right, I have likely had Celiac my entire life, so feeling well is a new foreign feeling that I am happy to discover. (I know there will be ups and downs though). 

 

Healthysquirrel,

Thanks for your kind words.

When you don't know what it is . ... it is always good to go back and reset (retrace) your path/steps.

What have you don't differently lately?

Are you taking a lot of medicines.  Are you on any thing for depression some depression medicines can cause tremors.

I was taking Wellbutrin and was fine until they switched me too the XL version and finally the generic version caused tremors (or was  causing a bad drug reaction) where I felt like my skin was crawling almost to the point I felt out of control of my face a precursor to convulsions/seizures.

I stopped the "new generic" wellbutrin and symptom's subsided.

https://www.drugs.com/pro/wellbutrin.html

quoting

"The risk of seizure can be reduced if the dose of Wellbutrin does not exceed 450 mg per day, given as 150 mg 3 times daily, and the titration rate is gradual."

so check your meds you might be surprised you might be having what they term a "rare" side effect to a medicine unless it happens to you then it a serious side effect.

I swore off antidepressants at that time (because I do not tolerate medicine well) and I found out the power of a B-complex, Vitamin D, and Magnesium to help depression and I no longer have depression weeks/month etc.

Who doesn't have a bad day every now and then but the rain clouds are now gone for good!

They are just now learning how B-Vitamins can help us.  They have known about Magnesium for a while. ... but people rarely test low for it.

Because we have sub-clinical levels until muscle cramps, CFS and other general wasting symptom's occur.

Supplementation changes that and usually quickly.

see this simarion research about how when low in Magnesium cell in our bodies can be invaded by the EBV virus.

http://simmaronresearch.com/2015/08/epstein-barr-virus-the-magnesium-connection/

and EBV has now been linked to 7 different diseases up to and including Celiac disease.

https://medicalxpress.com/news/2018-04-epstein-barr-virus-linked-diseases.html

estimated to effect up to 8 million Americans.

quoting

"A far-reaching study conducted by scientists at Cincinnati Children's reports that the Epstein-Barr virus (EBV)—best known for causing mononucleosis—also increases the risks for some people of developing seven other major diseases.

Those diseases are: systemic lupus erythematosus (SLE), multiple sclerosis (MS), rheumatoid arthritis (RA), juvenile idiopathic arthritis (JIA), inflammatory bowel disease (IBD), celiac disease, and type 1 diabetes. Combined, these seven diseases affect nearly 8 million people in the U.S."

If you have any one of these diseases EBV may have taken up residence in your bodies cells.

And taking Magnesium can help drive the EBV out of your cells by binding to the same receptor cite in yours cells that Magnesium naturally binds too and when we are too low in Magnesium then  EBV can take over this receptor site in your cells' and cause inflammation and sickness linked to 7 different diseases including Celiac disease.

And way back in 2001 (now forgotten) EBV was tied to UC.

see this research entitled "Evidence of Epstein-Barr virus infection in ulcerative colitis."

https://www.ncbi.nlm.nih.gov/pubmed/11816543/

so taking Magnesium might help you in many way(s) and if the latest findings on Magnesium as reported by the simarion research group is true then using Magnesium could help many of the CFS/ME you might be having.

and seizures can/do occur in MS often.

See this research about their common pathways entitled "Epileptic Seizures in Multiple Sclerosis May Suggest Shared Pathology"

https://www.neurologyadvisor.com/multiple-sclerosis/epilepsy-seizures-in-multiple-sclerosis-shared-pathology/article/633375/

You should also have your B-12 levels checked.  Your homocysteine levels might be elevated if B-12 is a problem for you.

B-12 is easily taken sublingually.  the methyl form is the best way to consume/take B-12.

I hope this is helpful but it is not medical advice.

Let us know how you do with epsom salts I think you will be surprised and happy with your results.

As always “Consider what I say; and the Lord give thee understanding in all things” this included. 

2 Timothy 2: 7 

Good luck and God speed on your continued journey.

Posterboy by the grace of God,

[healthysquirrel]

Hello Posterboy, 

Thanks for your information. I did have mononucleosis when I was about 15 and it lasted 6 months. I am taking sublingual b12 and it turns out I am on 400mg of Magnesium per day (I switched my calcium supplements and they now contain magnesium and zinc), but I had forgotten the switch because I use a pillbox and i'm foggy. I am also going to use the salts, maybe I am not absorbing the magnesium as easily by way of my digestive system. I am only taking supplements for vitamins that are low or in normal range, but low.

I have thought of MS, I had a brain scan after the seizure and it was normal. No lesions on the brain and my legs are getting better. However they didn't do a spinal chord scan nor a spinal tap, so I don't know for sure. I am still waiting to see what happens with the diet as some cases of celiac disease mimic ms and I have none of the general symptoms https://www.ncbi.nlm.nih.gov/pubmed/?term=celiac+symptoms+mimic+ms 

Great catch about mono, i am adding all this information to an info sheet to discuss with a specialist. I was supposed to see him this week, but he rescheduled.

I really really can't wait to be heard by a DR who is knowledgable about all of this! I try not to judge the DRs who have been useless to me because I know how little nutrition is in the medical curriculum and they need to know so much about everything. I took an anatomy and physiology class last year and it was really a huge challenge, they can't know everything. BUT I just they would take 3 seconds and look things up on pubmed to check out what I am saying rather than look at me with that "its all in your head" look. ?

BTW your research has helped a mom in my building who's child had a seizure a week after me. 
 

[Posterboy]

Healthysquirrel,

I don't know if you was able to read my other post on the "best" magnesium form to take in response to ch88 or not in my response on the sleep apnea thread but most Magnesium Complex's have Oxides or even Calcium/Magnesium/Zinc complexes in them only have Magnesium Oxides and are are not well absorbed by the body.

Find a Citrate (with meals) or find a glycinate and your body will thank you for it. ... dreams usually follow (if you especially can't remember them) when you dream. ... you will begin remember you vivid dreams probably first the first time in awhile.

Epsom salt will/should work for now.

That is probably what your naturopath is noticing about how most/many Magnesium forms are not well absorbed by the body.

Here is the research on how Epsom salts works.  share with your naturopath if they have not seen the research.

http://www.mgwater.com/transdermal.shtml

As to what you said about your intestines . .. you hunch might be right.

On 12/15/2018 at 4:17 AM, healthysquirrel said:

maybe I am not absorbing the magnesium as easily by way of my digestive system.

Magnesium Glycinate is the recommend form for those having had a GI resection because it is absorbed differently than other forms of Magnesium.

 See this research entitled "Bioavailability of Magnesium Diglycinate vs Magnesium Oxide in Patients with Ileal Resection".

https://onlinelibrary.wiley.com/doi/abs/10.1177/0148607194018005430

but Magnesium Glycinate/Citrate forms is a much higher Bioavailable form.

this was posted in the other thread but you can quickly seee with all the forms of Magnesium's available why it can be hard to pick a "good" one.

https://www.dietvsdisease.org/best-magnesium-supplement/

quoting from the diet vs. disease website on best magnesium forms to take for proper supplementation.

Magnesium Glycinate

"Magnesium glycinate (or diglycinate) is much more effective than magnesium oxide, and absorbed in different areas of the gut compared to traditional magnesium supplementation (14)."

and the dietitian in the diet vs. disease article notes the "cheaper" supplements trying to cut cost include the less bioavailable form of Oxide in them..... essentially robbing them of their effectiveness.

as for the EBV or other viruses triggering your Celiac disease know it is possible.

See this Dr.Oz online article that explains well EBV can hide out in the body causing (long after you initial 'Mono' infection causing systemic disease later. . . up to and including MS.

https://www.doctoroz.com/article/secret-life-epstein-barr-virus

some of the viruses that make us sick initially for  a brief time develop antibodies that gluten shares a A-glidian amino acid sequence that latter when someone ingests gluten triggers an auto-immune reaction in those who care the genes for celiac.

Here is a celiac.com article on it.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/could-changing-gut-bacteria-prevent-celiac-disease-r3546/

quoting

"So far, researchers have been unable to explain why 30 per cent of people have genes that can cause celiac disease, but only 2 to 5 per cent actually develop it. Also a mystery is why the disease develops at any age. Higher rates of celiac disease are being driven not just be better testing and awareness, but also by external triggers.

According to Dr. Decker Butzner, a Calgary-based pediatric gastroenterologist, there are another triggering factor which we've never understood…[t]here is an environmental trigger."

It is me again and this older research explains how this (link posted below) show's how certain virus amino acid A-gliadin sequence can trigger our body to attack Villi long after the initial virus outbreak like "Mono' etc.

Here is the original research entitled "Evidence for the role of a human intestinal adenovirus in the pathogenesis of coeliac disease."

https://www.ncbi.nlm.nih.gov/pubmed/2822550

quoting their abstract.

"We previously noted a region of amino acid sequence homology between A-gliadin, a major alpha-gliadin component known to activate coeliac disease, and the early region E1b protein of human adenovirus serotype 12 (Ad12), an adenovirus isolated from the human intestinal tract. .... and their conclusion . ... Taken together, these data are compatible with the hypothesis that a viral protein may play a role in the pathogenesis of coeliac disease, perhaps by virtue of immunological cross reactivity between antigenic determinants shared by the viral protein and alpha-gliadins."

this shared connection means gluten can be reactivating your immune system to attack your body.

I was surprised to find the research..... not that this was/had actually been studied but that in the new research on EBV being linked to Celiac disease.... it was not mentioned in the new findings on EBV linked to 7 different diseases.

But I was not surprised to find it was 30+ years old. ..... I see older research a generation has forgotten. ... far too often.

It takes the current generation to educate the next one.

All good studies first do or should do a "literature" search to see what has been studied about their topic of study and this should of come up in the newer EBV link/association with Celiac disease but apparently it did not (that I know of).

I must stop for now but I hope some of this was helpful . .... keep playing that hunch, and following your gut feeling....it will ultimately help you!

And find you a good, highly bioavailable form of Magnesium and I think you will be very happy with it/now that you have found first the Espom salts and later Magnesium Glycinate!

If you want to read/study more about the best way to take magnesium ..... search celiac.com for Ennis_tx and the posterboy both have a lot of threads about this topic.

As always  this is not medical advice just one of the many things that helped me and I hope it helps you too!

“Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7

Posterboy by the grace of God,

[healthysquirrel]

On 12/17/2018 at 1:40 AM, Posterboy said:

Healthysquirrel,

I don't know if you was able to read my other post on the "best" magnesium form to take in response to ch88 or not in my response on the sleep apnea thread but most Magnesium Complex's have Oxides or even Calcium/Magnesium/Zinc complexes in them only have Magnesium Oxides and are are not well absorbed by the body.

Find a Citrate (with meals) or find a glycinate and your body will thank you for it. ... dreams usually follow (if you especially can't remember them) when you dream. ... you will begin remember you vivid dreams probably first the first time in awhile.

Epsom salt will/should work for now.

That is probably what your naturopath is noticing about how most/many Magnesium forms are not well absorbed by the body.

Here is the research on how Epsom salts works.  share with your naturopath if they have not seen the research.

http://www.mgwater.com/transdermal.shtml

As to what you said about your intestines . .. you hunch might be right.

Magnesium Glycinate is the recommend form for those having had a GI resection because it is absorbed differently than other forms of Magnesium.

 See this research entitled "Bioavailability of Magnesium Diglycinate vs Magnesium Oxide in Patients with Ileal Resection".

https://onlinelibrary.wiley.com/doi/abs/10.1177/0148607194018005430

but Magnesium Glycinate/Citrate forms is a much higher Bioavailable form.

this was posted in the other thread but you can quickly seee with all the forms of Magnesium's available why it can be hard to pick a "good" one.

https://www.dietvsdisease.org/best-magnesium-supplement/

quoting from the diet vs. disease website on best magnesium forms to take for proper supplementation.

Magnesium Glycinate

"Magnesium glycinate (or diglycinate) is much more effective than magnesium oxide, and absorbed in different areas of the gut compared to traditional magnesium supplementation (14)."

and the dietitian in the diet vs. disease article notes the "cheaper" supplements trying to cut cost include the less bioavailable form of Oxide in them..... essentially robbing them of their effectiveness.

as for the EBV or other viruses triggering your Celiac disease know it is possible.

See this Dr.Oz online article that explains well EBV can hide out in the body causing (long after you initial 'Mono' infection causing systemic disease later. . . up to and including MS.

https://www.doctoroz.com/article/secret-life-epstein-barr-virus

some of the viruses that make us sick initially for  a brief time develop antibodies that gluten shares a A-glidian amino acid sequence that latter when someone ingests gluten triggers an auto-immune reaction in those who care the genes for celiac.

Here is a celiac.com article on it.

https://www.celiac.com/celiac-disease/celiac-disease-gluten-intolerance-research/could-changing-gut-bacteria-prevent-celiac-disease-r3546/

quoting

"So far, researchers have been unable to explain why 30 per cent of people have genes that can cause celiac disease, but only 2 to 5 per cent actually develop it. Also a mystery is why the disease develops at any age. Higher rates of celiac disease are being driven not just be better testing and awareness, but also by external triggers.

According to Dr. Decker Butzner, a Calgary-based pediatric gastroenterologist, there are another triggering factor which we've never understood…[t]here is an environmental trigger."

It is me again and this older research explains how this (link posted below) show's how certain virus amino acid A-gliadin sequence can trigger our body to attack Villi long after the initial virus outbreak like "Mono' etc.

Here is the original research entitled "Evidence for the role of a human intestinal adenovirus in the pathogenesis of coeliac disease."

https://www.ncbi.nlm.nih.gov/pubmed/2822550

quoting their abstract.

"We previously noted a region of amino acid sequence homology between A-gliadin, a major alpha-gliadin component known to activate coeliac disease, and the early region E1b protein of human adenovirus serotype 12 (Ad12), an adenovirus isolated from the human intestinal tract. .... and their conclusion . ... Taken together, these data are compatible with the hypothesis that a viral protein may play a role in the pathogenesis of coeliac disease, perhaps by virtue of immunological cross reactivity between antigenic determinants shared by the viral protein and alpha-gliadins."

this shared connection means gluten can be reactivating your immune system to attack your body.

I was surprised to find the research..... not that this was/had actually been studied but that in the new research on EBV being linked to Celiac disease.... it was not mentioned in the new findings on EBV linked to 7 different diseases.

But I was not surprised to find it was 30+ years old. ..... I see older research a generation has forgotten. ... far too often.

It takes the current generation to educate the next one.

All good studies first do or should do a "literature" search to see what has been studied about their topic of study and this should of come up in the newer EBV link/association with Celiac disease but apparently it did not (that I know of).

I must stop for now but I hope some of this was helpful . .... keep playing that hunch, and following your gut feeling....it will ultimately help you!

And find you a good, highly bioavailable form of Magnesium and I think you will be very happy with it/now that you have found first the Espom salts and later Magnesium Glycinate!

If you want to read/study more about the best way to take magnesium ..... search celiac.com for Ennis_tx and the posterboy both have a lot of threads about this topic.

As always  this is not medical advice just one of the many things that helped me and I hope it helps you too!

“Consider what I say; and the Lord give thee understanding in all things” this included.

2 Timothy 2: 7

Posterboy by the grace of God,

thanks a million for this information posterboy! I will see how my new magnesium reacts in a bit of time and report back.  

Looking forward to seeing a new doc/specialist in a week and a half. I am falling asleep everywhere at the moment, had another attack last week. Either something is not right or I just need more time to heal. I honestly felt much better before going gluten-free, either my body preferred constant attacks or I have something else. I must keep looking. Maybe my immune system has found a new enemy out of boredom. hahaha

[Presenttime14]

I grew up having seizures at the age of 10.  I was dx with a seizure disorder.  The doctors didn't want to label me at the time.  It was in the early 70's. The auras, seizures that could not be controlled by meds. Hence, I was overdosed three times in high school.  I had a wonderful GP that gave me the freedom and tools to explore.  (If one had more than three seizures, the doctors will call it epilepsy because they do not know what is causing it). My GP at the time gave me a huge gift! He sent me on my own healing journey while having the support of the medical information.  I tracked my seizures in relationship to foods, moods, how I felt physically, mentally and spiritually. I found my triggers and eliminated them, and my seizures were nonexistent for decades. When the triggers were present, my body told me. When the triggers aren't present, I do not have them. 

In October of 2018, I was dx with celiac. My GI doc said to stay away from Gluten/ I started researching and found an article on one of the Celiac websites.  The article was in the Journal of Neurology.  I sentence stood out and I could have been knocked over by a feather. I will paraphrase it.  Some with celiac disease and don't have any damage to the gut/colon and seizures are present. The celiac disease is affecting the brain not the gut.  They seem to believe some patients dx with epilepsy actually celiac disease and it has affected the brain. It is a small percentage.  I am trying to find the article again.  After what I have survived and will thrive from my experience, I firmly believe that everyone with seizures and no known cause should at least get their DNA done to see if they have the markers for celiac disease.  Then go on to more testing if needed. Am I a doctor, No, I am just speaking from my own experience. I would have never been tested for celiac disease if I hadn’t had the markers for it in my DNA. Just because they have the markers for it doesn't mean they have celiac disease but if they don't have the markers, they can't have celiac disease.  

For me, I am convinced my seizures are connected to celiac disease. It was a dx 46 years in the making.    

The human brain is a complex thing and what causes seizures in the brain can be a mine field.  No one really knows unless there is concrete evidence to support the seizures.  Specialists, doctors and researcher are still learning about the complexities of the Brain. For me, at the time my medical team did the best they could with what they knew about the brain. For me, my intuition has always told me there was more going on under the surface, so I kept digging searching but not letting it consume me.  I allowed my intuition be my guide. When the medical field didn't know a cause of something, I knew is was more in the energetics of things and my intuition became my guide.

I also found an article that stated in the 1930's they stopped doing research as to the cause of seizures since the anti-convulsant drugs were developed.  Who would have thought the food supply would be the culprit for some.  I do not have any facts on this next statement by Monsanto was started in I believe the 30's and started experimenting in the 70's with the food supply. Round up, GMO's etc.  Recently, Bayer had bought Monsanto out and now owns the company.

In reading the Medical Medium, the book correlates celiac disease with Shingles. Is the statement based in scientific fact? No, it is not. So please do not send or respond to the statement in a negative or disparaging way.  It is only meant as information that hasn't been proven or disproven by science. Our medical field and research hasn't gotten there yet. 

 

 

 

[healthysquirrel]

dear @Presenttime14, I honestly thought I had answered you months ago.? Thanks for your message. I definitely have Celiac disease, I am not sure that was clear in my initial post. I agree that it is good to do your own research and try to find triggers. I've been trying since December and can't find an answer. I just got out of the emergency room after having had another seizure on a flight. After the seizure I had such severe anxiety that I could not breathe and vomited whenever I moved. They took me out of the plane in an ambulance. I'm so tired of this. The emergency room checked for a blood clot because I had pain in my leg right before the seizure. It only ate at 100% gluten free bakeries (1 brownie and one scone) and the rest of the time i made my own food with a ton of care. I doubt I was glutened. I have however had a ton of depression and anxiety clearly getting worse since my diagnosis.I often feel as though I have an elephant on my chest. I was very down on holiday although I loved my rental and I loved where I was and was reading about the present moment and was taking super good care of myself, nice weather etc. The emergency room told me to see a cardiologist, to get a new neurologist (they were unconvinced that I had no neuro issues) and to see a proper eye doctor and an ORL. I did have a ton of vertigo a few weeks ago. I am going to see my DR/micro-nutritionist tomorrow. I am really tired of all this, but just calling and making appointments without thinking. I'm tired of not knowing the triggers. All vitamin levels are fine except iron which is low, but not the lowest it has ever been. I am not on antidepressants or anti anxiety, but I am definitely thinking about it. 

hope everyone out there is doing well! 

[Presenttime14]

Hi HealthySquirrel,

 I  am so sorry for all you are going through.  I understand the feeling of being at the end of your rope. For many years my GP recommended tracking my foods and behaviors, stress emotions, any hormonal cycles, in relationship to the seizures. Each day, I tracked everything.  I know it can be time consuming and a pain to track but what I found over time, was a pattern had emerged. It also gave very clear information for the doctors.  It gave me a sense of power to do something, even if at first, I couldn't see the light at the end of the tunnel. Believe me there is a light that shines bright. Perseverance and patience are some tools that come in handy. He also recommended Meditation and biofeedback. 

Look into some research on what part of the brain is effected by the seizures and what abilities that part of the brain controls. Even if it is for curiosity sake.  You may or may not find pieces to the puzzle.

I did some allergy testing and I was allergic to corn as well. From what you have said, you were gluten-free but you were eating baked goods. that were processed. ie. flours and sugars. They can have a huge impact on the brain. Sugar is more addictive then crack cocaine and sugar effect then same part of the brain. Some have found great success with the Keto diet but To do it properly, medical supervision is recommended. Checking in with your doctor is a good idea.  If you are looking for an neurologist, see if you can find an integrative neurologist. Look for docs that practice functional and or integrative medicine. The deal with the patient as a whole not just the different parts.  It took me a while to figure out my triggers. Also, with the seizures, there can be some PTSD, I would highly recommend finding a good, qualified and competent therapist that you feel safe with and can help you with the emotional side of things that go along with having seizures and PTSD. My neurologist recommended a book called The Challenge of Epilepsy Complementary and Alternative Solutions. By Sally Fletcher. In the first edition he wrote the forward.  He retired sometime ago.

You can also add in to your treatment plan Acupuncture.  I work for a community clinic that uses a sliding scale $20-40 per treatment and for a NP there is a 1 time $15 fee added for the first visit and covers the paper work and consult.  POCACOOP.net is a place to look.  They are all over the world. Check the credential and their licenses. 

Meditation is great, HeartMath is a form of Biofeedback and it is less than going to have biofeedback done. The app can be added to a phone or iPod for free or purchase the program for your computer. If using the app, there is a sensor that needs to be purchased. If you need support, there are people who are trained to teach the HeartMath method. I have taught meditation for years and I have recorded some meditations on my iPod. That I use for myself. I also use the heartmath method. When doing a meditation once you are grounded and centered. Hugging a tree, will give you a feeling of groundedness if you don't know that it feels like to be grounded.  Grounding is a very important tool.

Triggers are different for everyone. The challenge is finding yours.  I can' recommend enough keeping a journal tracking your seizures in relationship to the foods, stress, emotions, sleep, processed foods, alcohol, sugars Baked goods (include gluten-free baked goods due to flour and sugars) and caffeine.  I ended up having to ditch the Teflon pans.

I also keep a dream journal as well.  Write down question before you go to bed and when you wake up in the morning write down the dream. If you don't remember anything, write down you don't remember.  It will trigger your subconscious that you are listening and your recall will get stronger and more detailed. If I wake up in the middle of the night, I wait until I get up in the morning to log the dream Get a couple of good dream dictionaries make sure one is based in psychology. 

I could go on and on.... With everything I have mentioned, keep in touch with your doctors.  I know it is exhausting.  I can assure you there is a light at the end of the tunnel. There is still a great deal unknown about the brain.  It is a journey. There will be pieces of your puzzle that will come together on your journey that light your way. Best wishes on your journey.  

Thank you for responding. I am reminded that I need to write a book. 

 

May peace be with you,

Presenttime14

[Posterboy]

On 4/23/2019 at 7:06 AM, healthysquirrel said:

dear @Presenttime14, I honestly thought I had answered you months ago.? Thanks for your message. I definitely have Celiac disease, I am not sure that was clear in my initial post. I agree that it is good to do your own research and try to find triggers. I've been trying since December and can't find an answer. I just got out of the emergency room after having had another seizure on a flight. After the seizure I had such severe anxiety that I could not breathe and vomited whenever I moved. They took me out of the plane in an ambulance. I'm so tired of this. The emergency room checked for a blood clot because I had pain in my leg right before the seizure. It only ate at 100% gluten free bakeries (1 brownie and one scone) and the rest of the time i made my own food with a ton of care. I doubt I was glutened. I have however had a ton of depression and anxiety clearly getting worse since my diagnosis.I often feel as though I have an elephant on my chest. I was very down on holiday although I loved my rental and I loved where I was and was reading about the present moment and was taking super good care of myself, nice weather etc. The emergency room told me to see a cardiologist, to get a new neurologist (they were unconvinced that I had no neuro issues) and to see a proper eye doctor and an ORL. I did have a ton of vertigo a few weeks ago. I am going to see my DR/micro-nutritionist tomorrow. I am really tired of all this, but just calling and making appointments without thinking. I'm tired of not knowing the triggers. All vitamin levels are fine except iron which is low, but not the lowest it has ever been. I am not on antidepressants or anti anxiety, but I am definitely thinking about it. 

hope everyone out there is doing well! 

HealthySquirrel,

I am so sorry to hear you are not doing/feeling well.

I had ran across some research a few years ago that might help you.

Manganese levels are important in Seizure patients.

https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(04)15558-X/fulltext

Also see this research on the Kynurenine Pathway in Tryptophan degeneration and other metabolites in the Kynurenine pathway that they are now learning can be important in seizure patients and other neurodegenerative states.

https://www.researchgate.net/publication/302471641_Role_of_the_Kynurenine_Pathway_in_Epilepsy

https://www.sciencedirect.com/science/article/pii/S0028390816302246

https://www.medicalnewsbulletin.com/tryptophan-metabolites-linked-neurodegenerative-diseases-april-27-2016/

I don't have more time tonight but this will point in you the direction of the latest research on the topic.

Your primary physician might not know about this K/T (Kynurenine/Tryphtophan) connection but your epileptic specialist should.

Here is a good research article explaining all the disease states it has been studied in including epilepsy for over 30 years.   While this knowledge of this connection has been around for a while ...I just discovered it in my own research in the last couple years.

this research (link below) is very up to date listing current diseases it has been studied in/with a good summary of current studies compiled only 10 years ago.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3195227/

And there are many  more studies but I don't have time to discuss/explain them in more detail at this moment ...but these are the main one's I know of on epilepsy ... a lot of the current research is featuring other neurodegenerative states other than epilepsy like Parkinson's disease and Alzheimers etc. . site again below for easy reference.

https://www.medicalnewsbulletin.com/tryptophan-metabolites-linked-neurodegenerative-diseases-april-27-2016/

I hope this is  helpful but it is not medical advice.

Posterboy,

[healthysquirrel]

Hey posterboy and presenttime14!

Thanks for your answers. I went to get a second opinion from a neurologist and he said I don't have epilepsy. The ORL I saw about possible inner ear issues because of vertigo refused to allow me to drink water when i was feeling dizzy and i ended up almost passing out and on the floor and he suggested I go to the waiting room so he could see the next client.  We are not allowed to swear on this forum, so I won't tell you what I said to him as I took a swig of water from my thermos from the floor before leaving without continuing the test. I called the DR who suggested I go see him and told her what happened, she will no longer work with him. I will make another appointment with someone else that comes highly recommended.

I have had no seizures for almost a month (exept almost passing out at the ORLs)

I took note of your suggestions and am looking in to the connections with maganese, b6, K/T, sugar and PTSD and seizures etc. I have taken the time to write everything in my journal and spoke to my micronutritionist/DR about it all and he did another full blood panel and stool test and we are waiting for the results. He says I am the perfect candidate for seizures due to celiac, leaky gut, candida, low blood pressure etc. He said that since my EEG was clean and so was my MRI I likely don't have epilepsy. I already drink about 2 litres of water a day, but I think I need to drink way more. i am often feeling dehydrated. 

I do meditate, I do sophrology, yoga and I have a really kind therapist and I regularly walk through the forest. I was a positive person, but yeah I admit, I am pretty down and tired and so frustrated. CBD oil is helping. 

I feel a ton better than when I last wrote thanks, in large part, to your immediate encouragement. 

THANK YOU so much and have a lovely Sunday.

[Posterboy]

Healthysquirrel,

Thank you for letting us know  you are doing better.

If you think it is Meniere's  be sure to have them check your Vitamin D levels.

Also try and do the Epley maneuver's at home.

Here is some article's about this topic and how they can help either BBPV ( differential diagnosis of vertigo) and/or Meniere's due to inner ear problems.

https://www.webmd.com/brain/home-remedies-vertigo#1

https://www.menieres-disease.ca/benign-paroxysmal-positional-vertigo/

and here is one on low Vitamin D in ENT patients.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3585572/

I hope this is helpful but it is not medical advice and hopefully some of these ideas will help you.

Posterboy,

[Posterboy]

Healthysquirrel,

I can't remember what you said about your B-12 levels but I saw this article from the dailymail  and thought this might be helpful.... and found other research that  (though rare) indicates a B-12 deficiency might have caused your seizures. ...

I saw this article a month ago but never got around to it ....do to some farm work and other issues that keep coming up...so better late than never....

Another thing to look into.

Here is the article and related research.

https://www.dailymail.co.uk/health/article-7031243/Widow-61-wandered-streets-naked-B12-deficiency.html

A case report entitled "Psychotic disorder, hypertension and seizures associated with vitamin B12 deficiency: a case report."

https://www.ncbi.nlm.nih.gov/pubmed/22027500

And this one with seizures was a predominant feature of a B-12 deficiency

entitled "[Encephalomyelopathy due to vitamin B12 deficiency with seizures as a predominant symptom]."

https://www.ncbi.nlm.nih.gov/pubmed/19462816

I hope this is helpful but it is not medical advise and that you are doing well!

Posterboy,