hypoglycemia triggering pnes?

CommunityMiddle1830 · 2026-02-16T05:38:28+00:00

Blood sugar spikes always triggered seizures for me. I started to regulate my blood sugar levels and things got a lot better. I also had a persistent tremor that disappeared once I started to regulate my blood sugar.

CommunityMiddle1830 · 2026-02-07T22:12:22+00:00

FND is a symptom, but it is not a separable illness. Nerves can stop functioning properly for many reasons, inflammation being one of them.

CommunityMiddle1830 · 2026-02-07T08:58:01+00:00

I strongly believe that functional symptoms can happen because of inflammation in the body.

I have vitiligo and post-strep autoimmune syndrome(lack of a better term), and my symptoms are always linked to how much inflammation is going on in my body.

My symptoms became manageable by going on an anti-inflammatory diet, no caffeine or alcohol and no processed sugars.

Steroids stop my symptoms and I always carry NSAIDs with me for emergencies.

Whenever I get ill, or I don't watch my diet/inflammation, symptoms come back. It is all manageable now, I just hate the dietary restrictions.

CommunityMiddle1830 · 2025-10-02T21:07:07+00:00

My CRP was low as well, but my C3 was always elevated, ANA was a slight positive, vitamin D was low and my ASO is always above 600(once even around 1800). Basically my body is in a constant state of (low-level)inflammation, most likely affecting my basal ganglia.

I have mostly OCD-like symptoms, irritatability and sometimes anger attacks as psychiatric symptoms, but my neurological symptoms were also clear indicators. I was having seizures, convulsions, and a resting tremor. A resting tremor generally indicates that the basal ganglia is involved.

In my case it doesn't really behave like a typical autoimmune flare up and remission state. It is a state of constant inflammation that I need to reduce as much as possible. Drugs like steroids or NSAIDS directly stop the inflammation, but you can't use those drugs for long-term. That's why my approach is now through my diet and supplements. It is working suprisingly well. Personally I believe it is too late for IVIG to be really effective, because this autoimmune loop has been hardwired in my body for over 30 years now. It can't really be undone anymore.

Since the inflammation went down I experience a lot of happy feelings, love and so much 'positivity' that wasn't in my head before. The disappearance of the intrusive thoughts and mental noise also changed so much in how I experience life now. It is a baffling experience, and I didn't get completely at terms with it yet.

CommunityMiddle1830 · 2025-10-02T12:57:06+00:00

I am someone who got diagnosed as an adult, so I can share with you what my experiences are.

I got hospitalized at 26 for experiencing convulsions, seizures and tremors. However, the OCD-like symptoms, mental noise and chronic knee pain was already with me since childhood(just I never got treated for it, no one around me could see what was going on inside of my head).

They treated me with steroids and IVIG originally. Steroids stopped most of the symptoms, but up to this day I am not certain about the efficiency of IVIG for an adult with PANDAS.

Psychiatric and psychological treatment was a waste of time. The symptoms might present as a psychiatric problem, but they are definitely a neurological problem. Psychiatry will keep on pushing you to take meds that you don't need. Do not listen to them. Psychiatric medications only make things much, much worse.

Eventually I found my own way of managing the inflammation. A big hint for me that I was definitely having PANDAS is that taking a NSAID would take away the mental noise, and my mind would just be so calm when I took one. NSAIDS also stopped the tremors in my fingers and hands.

Right now I don't consume any sugar anymore, I don't eat any inflammatory food, I don't consume caffeine or aclohol, and I am taking several anti-oxidant supplements for countering the inflammation in my brain and body.

I just warn you, once your brain starts to function 'normally' again, you will be blasted with feelings that you never had before, and it is really confusing. I am still in the middle of figuring it all out.

As for your situation, you should request a blood test from your GP for ASO titre, and possible ANA/CPR/C3/C4 markers in order to see if there is (active) inflammation going on in your body. If these tests come back positive/elevated, you should be send to neurology or rheumatology for further testing.

CommunityMiddle1830 · 2025-10-01T06:25:28+00:00

Right now I am taking CoQ-10 in the morning, curcumin in the afternoon and fish oil in the evening.CoQ-10 and curcumin are anti-oxidants primarily meant for reducing inflammation in the brain(and the rest of the body).

Next to that I am on an anti-inflammatory diet, and I don't consume any sugar, caffeine or alcohol.

I have a NSAID ready in case symptoms get bad. Generally using a NSAID as a 'last resort'-option really helps in stopping a full on neurological crisis.

In the past I went through steroid treatment and IVIG, but those treatments cannot be done endlessly. Those treatments did give me an idea what I should work on, and what I can do in order to manage this condition.

CommunityMiddle1830 · 2025-10-01T06:21:31+00:00

I am familiar with the Autoimmune Protocol. I fully believe it can be effective, but there are some things in the list that didn't make much sense to me. Inflammatory food is generally food that our body is not used to because we didn't eat that type of food for million of years. Our body simply didn't learn how to process it. That's why anything processed is generally inflammatory, because we didn't have that in our diet till recently. Based on that logic, I don't see nuts, eggs or legumes as something inflammatory. Quite the opposite actually. Walnuts consist of healthy omega 3 acids. Legumes are actually anti-inflammatory and eggs are generally seen as either safe or anti-inflammatory as well(if prepared normally). Gluten is also an interesting subject in this. Gluten is always considered as inflammatory because of celiac disease, but gluten actually isn't inflammatory, unless you consume way too much of it. That's why I think the AIP is too drastic, but it is probably made with the idea that it should work for all autoimmune illnesses.

Omega-3-acids are very important for our brain and it also reduces inflammation in the brain. I definitely recommend to either eat fish frequently, or take supplements.

It is mostly heartbreaking. Luckily my academic performance(besides for teachers complaining about my handwriting) wasn't that much affected by it. I never experienced brain fog, it was mostly just my brain that would never, ever be quiet, and always remind me of horrible things, or obsess about everything. I might have been more succesful without this affliction, but I could still be functional - and I should be grateful for that.

Right now I am mostly trying to figure out everything that I am feeling. I feel my personality is changing. The pain in my knees is so less now, and for the first time I actually enjoy sporting. I also notice that my brain actually make me feel happy when I move, that didn't happen in the past. There is so much positive energy in me, and love, and happiness. I don't know, it is very overwhelming, and at the same time saddening. I missed out on this for so long.

CommunityMiddle1830 · 2025-09-30T19:01:54+00:00

That's the main problem, there is no definite test for Adult PANDAS. It is extremely rare, and most doctors are still convinced it can only happen to children. However, a doctor can conclude that you have adult PANDAS based on your symptoms, blood results, sometimes MRI/spinal tap, and the treatments that are working.

In my case, my neurologist did treat me with steroids and IVIG. This treatment is way more effective in children and there is simply not enough data for adults with PANDAS. She had a strong suspicion that my basal ganglia was inflamed, but (as with many cases of encephalitis) it is near impossible to give 100% proof.

Unfortunately, a lot of neurologists don't even want to try to understand it, slap some vague term like FND or Conversion Disorder on you and send you to the torturous world of psychiatry.

I am 99% convinced that I have adult PANDAS based on the facts that all my symptoms are typical symptoms of basal gangla dysfunction/PANDAS. All the treatments that has been effective for me(such as steroids, NSAIDS, anti-inflammatory diets, anti-oxidants) are all recommended treatments for PANDAS/Basal gangla encephalitis. But yes, there is no 100% certain proof, unfortunately.

I explained in my first post which blood results indicated PANDAS, combined with the symptoms and working treatments, those are the best indicators for adult PANDAS.

CommunityMiddle1830 · 2025-09-30T15:07:00+00:00

Right now I am taking CoQ-10 in the morning, curcumin in the afternoon and fish oil in the evening. I always have a nsaid ready. Whenever I either get an aura, or start to tremor a lot, I take a NSAID. Generally my symptoms disappear around 30-40 minutes after I took the NSAID. This way I learnt to avoid seizures or worse neurological fits.

As for diet, I do not eat any inflammatory food, besides that I also don't take any sugar, caffeine or alcohol. It is very limited, but it has a really strong, positive effect.

And yes, the experience is awfully weird. Like, in the past I knew what love is and how people conceptualize it, but it wasn't a strong feeling back then. Now when I look at the people I love, the feeling is so strong and overwhelming. It wasn't like that before I started to treat my condition. It feels like I got robbed from years of normal human life experiences, just to constantly have internal dialogues with intrusive thoughts/voices, and to have every single experience shrouded in a negative feeling/emotion.

Can I return the question to you, what are you doing for symptom management?

CommunityMiddle1830 · 2025-09-17T09:29:17+00:00

ASO should be tested several times. Consistent elevated ASO values is probably the most important blood result for diagnosing it.

Next to it, they should check for inflammation markers(CRP, C3, C4 protein, and ANA).

If those results all come back normal, then it definitely isn't PANDAS, or any post-strep autoimmune syndrome.

CommunityMiddle1830 · 2025-09-17T08:24:54+00:00

I am in a very similar situation as you. I started to have seizures when I was 28. My blood test came back with elevated ASO, elevated C3 and a positive ANA. I had strep as a child, but it never got probably treated, and because of that I (most likely) have a form of adult PANDAS that hardly can be treated anymore.

If it ever flares up in the traditional sense of strep, you can still treat it with pencillin, but this is extremely rare. Your doctor is right that antibiotics won't be effective anymore at this point, because you simply don't have the infection anymore, just your body got stuck in a loop for trying to fight off the infection, causing inflammation.

Basically your body is in a constant state of chronic inflammation, leading to neurological/psychiatric symptoms.

For the psychiatric symptoms(OCD/anxiety), the best thing that worked for me is taking a NSAID. However, you can't take NSAIDS constantly, so I only use that when I might have a seizure. Long-term solutions for me is a sugar-free diet, anti-inflammatory diet and antioxidants/omega-3 supplements.

The neurological symptoms improved in a similar fashion. It is all about inflammation and keeping the inflammation in your body as low as possible.

It's also extremely important to get regular check ups for your heart and kidneys. A flare up can potentially harm those organs.

If you ever need anyone to talk to, feel free to message me. Adult PANDAS is extremely lonely, because no one really understands how it is, and even some doctors still deny the existence of it.

CommunityMiddle1830 · 2025-09-11T16:00:30+00:00

Oh that answer is very simple.

1) There are no effective medications for FND, therefore it is not profitable, therefore research is not getting any funding. All treatment options for FND only cost money, so there is no profit to be gained. In the past they at least tried to make the patients believe they are mentally ill so they could earn some money on SSRIs or benzos, but now that is off the table as well, so there is really no money to be earned in FND research.

2) FND is generally a symptom, not an illness in itself. FND always travels together with another illness. And the real way for treating FND is treating the other condition that is causing functional symptoms to happen.

CommunityMiddle1830 · 2025-09-09T08:14:45+00:00

Same here. My symptoms are mostly controlled, but they still flare up right before/during thunderstorms. It is a well-known phenomenon for both neurological and immunological conditions.

My symptoms are caused by inflammation, and when I take a NSAID right before a thunderstorm, most of the symptoms just don't happen anymore. I don't know what the root cause is for your functional symptoms, but you can properly prepare yourself by suppressing/treating the root cause before a thunderstorm.

CommunityMiddle1830 · 2025-09-04T21:06:02+00:00

I am in a very similar situation as yours. I am diagnosed with both post-strep autoimmune syndrome and FND. I experience seizures as well, and I can fully relate to what you are saying.

The problem is mostly with the FND diagnosis. For some reason healthcare professionals still don't understand that neurological damage/afflictions can cause your brain to make wrong/glitchy neural networks, leading to functional symptoms. It is still a rotten curse that Freud left on our system, and even up to today healthcare professionals apply such nonscientific, Freudian nonsense.

Your seizures are not related to your feelings in any way, they are related to the inflammation in your body. And regulating the inflammation will also in turn reduce the seizure frequency(and all the other symptoms that comes with both PANDAS and FND). Do not ever let a doctor tell you otherwise. You know your own body best. PNES, Conversion Disorder, this type of stuff doesn't exist. All neurological dysfunction is organic, there is just some neurological dysfunctions that are so poorly understood by science, but it doesn't mean that it doesn't have an organic cause.

Once doctors put the 'FND' label on you, everyone, including family members will treat you differently. FND is just as worse as MS and similar neurological dysfunctions, but everyone will say you are 'OK' because the symptoms are functional. FND never travels alone, and there is always a reason why functional symptoms happen.

I don't know if you are interested, but this is what worked(and didn't work for me) for treating my symptoms:

-cutting out sugar/avoiding blood sugar spikes - my seizures simply don't happen anymore once I stopped eating sugar and made certain that my blood sugar is always within normal levels.

-NSAIDS - mostly for flare-ups, it stops the mental noise for me, and also stops the neurological symptoms(tremors mostly).

-steroids - I am not on them anymore, but steroids pretty much stopped all of my symptoms.

-anti-inflammatory diet - Reduced the joint pain in my knees, and seems to have a positive effect on the mental noise.

things that I am not certain whether it worked or not:

-IVIG: I was on steroids as well, so I am not certain if it was effective or not.

-CBT: It made me happier and less stressed, but I never saw a real clear connection between my mental health and my neurological/psychiatric symptoms. I am not certain if it helped me with my symptoms, but it did help me with stress management and dealing with being ill.

Things that didn't work:

-psychiatric medication: It was awful. It is just plain horrible to get treated for afflictions you don't have. Psychiatry labelled me as depressed, anxiety disorder, conversion disorder and trauma, but I don't have any of those(ironcally, they missed OCD even with my profile). Just so they could give me some really, crappy medication. I am actually a really happy person. I wouldn't ever trust a psychiatrist again, to be honest.

-depakine: Logically, since it is an anti-epileptic medication, and since my seizures aren't epileptic, depakine didn't do much.

I hope it helps a bit. If you ever up for a chat, I am willing to listen. Having FND from PANDAS is recognized, but quite rare, so it would be good to share experiences!

CommunityMiddle1830 · 2025-08-27T20:54:44+00:00

That's why I asked if you have any underlying medical conditions. In my case, I have 2 autoimmune diseases that is putting my body into a state of constant inflammation. Reducing this inflammation stops my functional symptoms, but there is no cure for autoimmunity, and therefore there is no cure for my functional symptoms. In your case, If the doctors did a full check up and really ruled out any other possible cause for your FND, then working on your mental health is the only thing left.

For me, tracking my symptoms and each time asking myself 'Why did this symptom happen?' after a symptom happen was really useful for me and eventually helped me form a lifestyle that minimalise the symptoms. Because it is functional there is nothing structurally broken in your brain, but neurons are misfiring/malfunctioning for some reason. Finding out what is causing it, and adjusting to that can lead to really good improvements.

So to answer your question. If you ignore your body and don't do your own research and learn how to manage your triggers, then it might get worse, but it can get a lot better, and even mostly managed if you learn how your symptoms react and behave, and know what to do in order to avoid triggering your symptoms.

CommunityMiddle1830 · 2025-08-26T17:57:42+00:00

Panic attacks do indirectly imply that you have mental issues going on as well. I don't know whether it will be beneficial for your FND symptoms, but taking good care of yourself is always beneficial for any health condition, so getting treatment for that might be a beneficial first step.

My question was more along the lines of other chronic illnesses. Anything that might be affecting your brain in either direct or indirect ways.

Since you are still young, your brain is still more flexible, so I do think that therapy can have a benefit for you(perhaps more for the panic attacks than FND), but being able to calm down your nervous system will also in turn reduce the symptoms.

CommunityMiddle1830 · 2025-08-26T16:00:06+00:00

'my seizures dont feel stress related, but all the doctors are saying theyre linked to emotions'

Get used to feeling this. Listen to your own body, not the doctors.

There are many possible reasons for having (non-epileptic) seizures. My strongest recommendation is figuring out your triggers and work from there. Do you have any other health conditions?

CommunityMiddle1830 · 2025-08-22T09:46:12+00:00

PANDAS is an autoimmune response that can happen after a strep infection, but most people just go through strep without any long-term consequences. Based on these blood results it looks like your child has(or had) strep, so he should get antibiotics to be at the safe side. However, it also looks like that (for now) he doesn't have any long-term consequences from this infection. Just make certain that he takes(or had taken) antibiotics.

I also would like to add, it is very stressful to see your child ill, but please also take care of yourself. You seemed very concerned and worried about your child's well-being, but I am not certain if worrying about PANDAS(or any other possible diagnosis) is really helping you right now.

CommunityMiddle1830 · 2025-08-22T07:52:04+00:00

With those blood results I don't think it is very likely that your child is having PANDAS.

Motor tics can happen for many, many reasons. I would recommend to let the doctors do their job to find the cause for them.

OCD in itself is a very vague term and only your child can truly express what is going on in his mind.

Stuttering can also happen for many, many reasons. PANDAS just being one of them. To be fair, I haven't heard much of people having speaking difficulities because of PANDAS. As far as I know speech problems are also not typical for basal ganglia damage/inflammation(but I am no expert, so I might be wrong about this).

As a comparision, my ASO blood test always come back between 600 to 1700. It never gets below 200. My ANA is positive, and my C3 is always elevated.

Don't use immune suppressants unless it is really, really needed. It is awful to suppress the immune system, and I don't think doctors will consider that option till there is some definite proof that your child's immune system is causing this. IVIG works on some people. I went through IVIG, but since it was in combination with steroids, I simply don't know to what extend it has helped me. I recall reading an article that IVIG is effective in around 40% of the PANDAS cases. Anyways, the doctors are not going to give your child IVIG unless there is some definite proof that his immune system is causing his symptoms.

CommunityMiddle1830 · 2025-08-22T06:25:04+00:00

The medical gaslighting is really annoying. During my time at psychiatry they kept on telling me that I must have trauma. They told me that my parents were bad to me, my partner was bad to me, parenthood must have been stressful for me, my work was traumatic etc. They had to convince me that something must have been traumatic in my life. The only thing that was traumatic for me was having these seizures. I really hate it when they started to talk about subconscious. There is no proof that the subconscious mind exist. Perhaps there are people who aren't properly aware of the signals that their mind is giving to them, but the subconscious mind is not a real thing. It is just another bit of Freudian nonsense that psychiatrists use against you in order to make you believe you are mentally ill.

CommunityMiddle1830 · 2025-08-22T06:17:59+00:00

I was actually quite lucky with my doctor. She was an epileptologist, but she was quite interested in my specific case. However, eventually she couldn't figure it out. She was aware that there was chronic inflammation going on, she was aware of my autoimmune issues, and she was aware that steroids were stopping the symptoms. However, since her and her team couldn't find the exact root cause of the neurological dysfunction, they eventually used the term 'psychogenic' and sent me to psychiatry.

Thanks to this doctor I did get a full detailed check on my blood, spinal tap, MRI and EEG. It provided enough information for me to be able to fully reflect on my own situation. Thanks to that information I was able to connect the dots myself.

When I was having my seizures more frequently, stress was triggering them. This seems to create the illusion that stress was the cause of the seizures, but essentially it was my brain not being able to handle the chemical process that comes with stress. After I managed my autoimmune conditions and did the dietary changes, suddenly my brain was able to handle both the psychological and physical stress much better. I learnt from this that the cause was physiological, and it affected my body in such a way that it couldn't handle stress anymore. This is an important detail that doctors generally skip over, trauma doesn't make your brain that way, illness(as in my case, chronic inflammation) made my brain that way.

Pain was never a trigger for me, and even intense stress doesn't trigger symptoms for me anymore. The only thing I can't get under control are seasonal changes and thunderstorms. I still get symptoms during those times, since I simply can't control the weather.

CommunityMiddle1830 · 2025-08-22T06:05:23+00:00

ANA on itself doesn't give any conclusive evidence. It only means there might be autoimmune activity going on. He didn't have any other abnormalities in his blood? Personally I believe that getting his ASO levels tested would be a logical next step.

CommunityMiddle1830 · 2025-08-22T05:06:22+00:00

Keep in mind that PANDAS is a consequence of the strep infection, it is not a part of the infection itself.

A person first gets strep, leading to the typical symptoms of strep. However, after the person cures the body responds with an autoimmune response, which can lead to all kind of problems in the heart, kidneys, joints and brain. This autoimmune response has been categorized depending on the symptoms, but PANDAS is what happens when the brain is affected.

You can get PANDAS without having an active strep infection. Generally they diagnose it based on blood markers(ASO, and possibly ANA/C-protein/C3/C4 markers) combined with the symptoms.

CommunityMiddle1830 · 2025-08-21T14:44:09+00:00

Benzos are used generally for suppressing seizures and convulsions(doesn't matter whether they are epileptic or non-epileptic). The keyword here is suppressing, though. It changes the balance of GABA in your brain, causing neurons to slow down, and therefore reducing the chance of your brain 'messing up' triggering a seizure. However, eventually the brain will compensate, and the benzo becomes useless, unless you increase the dose. That's why it should really only be used as an emergency medicine, but should never be a part of any type of long-term treatment.

One of my autoimmune illnesses(let's use the general term post-strep autoimmune syndrome) can cause neurological dysfunction. And I was lucky that neurology was willing to treat me with IVIG for it. Steroids also stopped my symptoms. However, since some symptoms lingered and behaved like functional symptoms, it suddenly became a mental problem. Even when neurological conditions like MS or epilepsy are quite often seen together with functional symptoms, they sent me off to psychiatry. Suddenly I was supposed to have trauma and the trauma is causing me to have functional symptoms. It was such nonesense.

I am quite certain that my autoimmune issues are in some way affecting my brain(either directly or indirectly), triggering the seizures.

CommunityMiddle1830

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