Could This be Seizures?

[[Da...]]

I don't get to see my doctor for almost 2 months - I am a little worried.  Not sure if I am taking seizures or if it is something else.  During the past 2 months, I have been having recurring episodes some for about 15-1hr, but 3 that lasted over 3 hours - when waking up - I have an excruciating headache, gasping for breath and my heart going crazy.  Too weak to lift any of my body, I just lay there holding my hands over my eyes...flashing lights even with my eyes closed.  The last time this happened just over a week over, I did manage to check my oxygen..it was 78...I said on the bed like that for over 3 hours until I could stand and walk.  I have had other episode that lasted as long, I feel it coming and I go lay down.  Often, the episodes are shorter.  But they are frequent.  I just never thought to check my oxygen levels when it was really bad.  My oxygen often goes down to mid 80s.  Wondering if anyone experienced the same?  I don't want to be a hypochondriac and go to doctor if this is part of the withdrawl game.  Thanks

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

[[Th...]]

Where are you in your recovery? Still tapering or off all together? 

 

I have never had a seizure so I can't be sure you aren't having one or close to it. It sounds like you may be having panic attacks though, I have had these and they sound just as you describe, out of breath, dizzy, can't breathe, gasping for air. When I finished my taper and was completely off Benzos, I saw a lot of flashing lights, solid colors on the walls and ceilings, like my brain was misfiring. I am 4 months off benzos now, I still get the occasional flashing lights, but these are slowly tapering off. You might get into your DR pretty soon if possible, just for the reassurance you are ok.

[[re...]]

I have read some of your posts and it seems you have been extremely erratic in all your CT's and dosing and poly drugging  throughout so your brain to me is just very sensitive and super dysregulated and not seizures. It looks like you had troubles absorbing vitamins and minerals. I think the PPI that you were on was not helping this. To me your best bet would be to eat a super clean "Whals Protocol" diet. Look it up. It is miraculous.

I can tell you this though You won't even know if you go into status epilepticus gran mal. You will just wake up and be way out of it, tired and possibly with a bitten tongue, but hopefully not. BUT you should go and get an EEG at the hospital ASAP to at least  see what is going on. I do think many of us enter a somewhat  mild focal temporal lobe seizure state in all of this withdrawal. If you taper super slow though and it is a long acting benzo. You certainly  won't have a life threatening seizure. Not even the mild kind.

This is the one thing that frightens me as well as I had multiple seizures and went into a long status epilepticus in the ER from a medical error in judgement because I had hyponatremia (extreme low blood salt from working in the heat all day) and they farted around with me. And I ended up having lots of nervous system issues when I got out from the nuclear bomb of medicine they put right in my vein. (Ativan, Keppra, Haldol, Precedex 3 Antibiotics, Antiviral, Anti nausea and the list goes on) and lost the ability to sleep and started having jerky movements numbness and saw neuros and all that crap.

I think doctors are useless in all this, and you think BENZOS are bad. You should see some of the heavy hitters they will give you if you are epileptic. They make benzos look like candy. 

I mean when things start to crap out in your brain. What can a doctor really do except turn you into a drug subscriber for life? I don't want to sound insensitive or hopeless. Not to discourage you or give you advice, just be aware all they can do is give you a cocktail of brain medicine that is WAY worse than benzos could ever be. just look up KEPPRAGE!!!!!! It is very real believe me.

But of course work with a doctor if you are concerned. But it is known fact they won't HEAL a damn thing. That is up to you Which you are MADE to heal. 

 I was on the epilepsy forums on reddit for awhile since I had seizures and many many never get their seizures under full control with medicine long term and are always upping and taking other meds away and adding others and they are still seizing. The people on there that go strict KETO. I don't mean doing this yourself. But KETO with a nutritionist and doctor to monitor your vitals and blood work seem to have the best outcomes. 

Medicine is good short term, but I think major lifestyle change is the key LONG TERM!!!!!!!!!!!!!!

I have to believe this even if it means lying to myself cause I just can't take meds anymore after what medical people did to me and it scares the crap out of me. 

I am just soooooo ultra sensitive to anything synthetic it seems now. Food so far has helped me it seems. And a bit of supplements. But not too many.  

[[Da...]]

Thank you for your response - medical system here is a joke!  I know Benzos is the main culprit of the majority of my symptoms....but my white and red blood count is NEVER normal...and my doctor is here for only a week a month..and he forgets all about looking at bloodwork.  I found this out only by getting my records.  I am 52 and I know benzo withdrawl is not going to be the only thing to contend with.  I am by no means a hypochondriac and rarely go to hospital.  I should have gone with oxygen levels at 77 as that is a medical emergency.  Oh Well, can't turn back to clock.  I have different neurological symptoms than from the withdrawals...because it has impacted my ability to even care for myself.  You right though, regardless I will not be taking any more medication...just need to know what is going on.  Thank you so much

 

[[Da...]]

2 hours ago, [[T...] said:

Where are you in your recovery? Still tapering or off all together? 

I have never had a seizure so I can't be sure you aren't having one or close to it. It sounds like you may be having panic attacks though, I have had these and they sound just as you describe, out of breath, dizzy, can't breathe, gasping for air. When I finished my taper and was completely off Benzos, I saw a lot of flashing lights, solid colors on the walls and ceilings, like my brain was misfiring. I am 4 months off benzos now, I still get the occasional flashing lights, but these are slowly tapering off. You might get into your DR pretty soon if possible, just for the reassurance you are ok.

I have .25 left.....a panic attack would not cause oxygen levels to drop that low....that's what I was thinking and wasn't alarmed until I talked to family member who is a nurse and she told me I have to go if oxygen level drop that low.

[[or...]]

4 hours ago, [[D...] said:

Thank you for your response - medical system here is a joke!  I know Benzos is the main culprit of the majority of my symptoms....but my white and red blood count is NEVER normal...and my doctor is here for only a week a month..and he forgets all about looking at bloodwork.  I found this out only by getting my records.  I am 52 and I know benzo withdrawl is not going to be the only thing to contend with.  I am by no means a hypochondriac and rarely go to hospital.  I should have gone with oxygen levels at 77 as that is a medical emergency.  Oh Well, can't turn back to clock.  I have different neurological symptoms than from the withdrawals...because it has impacted my ability to even care for myself.  You right though, regardless I will not be taking any more medication...just need to know what is going on.  Thank you so much

I found a thread here on BB about Red and White blood cell counts being effected by benzos if you are interested.  I couldn't be sure you meant you'd always had those issues or maybe post-benzo scripts so thought I'd go ahead just in case it might help you Darlene.  There really doesn't seem to be a lot of my issues at age 71, that weren't probably caused by benzo:

I also agree with not taking a drug ever again unless I've explored and failed at especially nutrition, and exercise for an alternative.  If our bodies are fueled as they should be, they have the ways and means to fight a lot of diseases, as well as a lot of health issues.  It's hard not to totally rely on conventional medicine.  For example, instead of having to eat foods with lots of Vit. C, why not just pop a pill, or why cure a headache by taking a walk, why not take a pill.

I know I even get tired of hearing myself say this, but I have to do my homework as best I can, and it's so been worth it to me.  I've confounded a few doctors in the last 3-4 years by successfully reversing my type 2 diabetes with nutrition mostly, and secondly my exercise play a big part as well.  Nice to lose some ugly fat to without starving myself, and without losing lean, muscle mass

[[re...]]

I try to call what these pills do "Dysregulation" and not damage as the damage moniker could cause you lots of trouble in healing I think. I mean we have to be honest with ourselves, but I have to believe there is something better for us on the other side of all this. Regardless of the reason we got here.  

Our mitochondria and right down to the last cell has been altered from these dangerous pills and I just constantly pray I..... as well as all of you here can at least get somewhat healthy again. This experience will change you for life and although you may not get back who you used to be (or maybe you do). The new you can actually be MORE powerful and other things take over and you are actually better than you were before.

 

It is such a balancing act of acceptance and fighting everyday for your life and health. And I just don't know if doctors (and especially the modern practitioner) can do much with this. They can be very "cold and souless" so to speak and just so clinical. And I don't know if this really helps with someone going forward in their healing journey. Just that alone and the way they seem to protect pharmaceutical reaction problems. 

Once again I can't tell someone NOT to take this or that or not see a doctor as they can have a very crucial place. And they really CAN be miracle workers if you get in a car wreck, fall out of a tree and get punctured lungs broken ribs (I have done this Lol), cut a finger bad and need some stitches, etc. But with illness and ESPECIALLY drug adverse reactions/dysregulation.............. OH BOY BE CAREFUL!!!!!!!!!!!! They can make you MUCH worse if you don't have discernment and just get all compulsive cause you want this merry go round from hell to stop. 

[[or...]]

sorry, didn't post reply.

Edited April 10 by [or...]
mistake, was going to post ran out of time ;)

[[...]]

On 09/04/2024 at 12:19, [[r...] said:

I have read some of your posts and it seems you have been extremely erratic in all your CT's and dosing and poly drugging  throughout so your brain to me is just very sensitive and super dysregulated and not seizures. It looks like you had troubles absorbing vitamins and minerals. I think the PPI that you were on was not helping this. To me your best bet would be to eat a super clean "Whals Protocol" diet. Look it up. It is miraculous.

I can tell you this though You won't even know if you go into status epilepticus gran mal. You will just wake up and be way out of it, tired and possibly with a bitten tongue, but hopefully not. BUT you should go and get an EEG at the hospital ASAP to at least  see what is going on. I do think many of us enter a somewhat  mild focal temporal lobe seizure state in all of this withdrawal. If you taper super slow though and it is a long acting benzo. You certainly  won't have a life threatening seizure. Not even the mild kind.

This is the one thing that frightens me as well as I had multiple seizures and went into a long status epilepticus in the ER from a medical error in judgement because I had hyponatremia (extreme low blood salt from working in the heat all day) and they farted around with me. And I ended up having lots of nervous system issues when I got out from the nuclear bomb of medicine they put right in my vein. (Ativan, Keppra, Haldol, Precedex 3 Antibiotics, Antiviral, Anti nausea and the list goes on) and lost the ability to sleep and started having jerky movements numbness and saw neuros and all that crap.

I think doctors are useless in all this, and you think BENZOS are bad. You should see some of the heavy hitters they will give you if you are epileptic. They make benzos look like candy. 

I mean when things start to crap out in your brain. What can a doctor really do except turn you into a drug subscriber for life? I don't want to sound insensitive or hopeless. Not to discourage you or give you advice, just be aware all they can do is give you a cocktail of brain medicine that is WAY worse than benzos could ever be. just look up KEPPRAGE!!!!!! It is very real believe me.

But of course work with a doctor if you are concerned. But it is known fact they won't HEAL a damn thing. That is up to you Which you are MADE to heal. 

 I was on the epilepsy forums on reddit for awhile since I had seizures and many many never get their seizures under full control with medicine long term and are always upping and taking other meds away and adding others and they are still seizing. The people on there that go strict KETO. I don't mean doing this yourself. But KETO with a nutritionist and doctor to monitor your vitals and blood work seem to have the best outcomes. 

Medicine is good short term, but I think major lifestyle change is the key LONG TERM!!!!!!!!!!!!!!

I have to believe this even if it means lying to myself cause I just can't take meds anymore after what medical people did to me and it scares the crap out of me. 

I am just soooooo ultra sensitive to anything synthetic it seems now. Food so far has helped me it seems. And a bit of supplements. But not too many.  

@[re...] what would be a temporal lobe seizure state? I've observed my son has episodes that begin when he gets very angry (either at himself or others), this emotion increases and at one point his whole body becomes stiff until he is unable to move. At other times he passes out and  starts trembling (less than a minute) or enters a semi-conscious state, like sonambulism (he's had sonambulism occasionally before benzos). A few minutes later it's like he just snaps out of it and doesn't remember much of it, if at all. Oxygen levels and heart rate are normal when this happens.

These episodes started at around one year out (he's at 15 months now) and used to be longer and more frequent in the beginning. I've wondered if he's developed epilepsy or if he should have some treatment to avoid seizures but then I'm aware of the dangers of medicating, even for people who do have epilepsy.

It is very striking that this always happens in relation to some intense emotional state, mostly anger, and I haven't seen much comments about something similar on this forum. But then if someone doesn't notice or remember these episodes after they happen it would explain why they are not mentioned.

I'm not sure but I think working out sometimes increases this anger and begins this process, but not always.

Sadness never gives him these episodes, crying seems to relax his body.

 

[[re...]]

Hey there Bmom thank you for the inquiry.

I can't give you a diagnosis of course. To put your mind at rest maybe he could get an eeg. Thing is those are very primitive from a typical neurologist and will most likely try to induce seizures with flashing lights and hyperventilation in a possible sleep deprived state which really doesn't always show much. An epileptologist is much better for someone trying to find out about their condition. 

Yes there are some studies that correlate an ABRUPT benzo withdrawal with a seizure state

state.https://pubmed.ncbi.nlm.nih.gov/21815323/

 

Even for short term users less than 15 days. But more so for long term/ high dose users,  As well as erratic benzo use.   Now I don't wanna scare anyone as even this is very rare for the cold turkies on here. Hate to burst anyone's bubble and  I am sorry, but seizures don't always present as you flopping around like a fish on the floor. They come in many forms.

 

But yes that is definitely a sign of temporal lobe seizures. And it could be panic attacks as well. They share a very similar situation and course of action

. There is an amazing girl on You Tube called Angelique busko that has a site called "{my journey to be seizure free" and she talks about the symptoms of her seizure. She has the typical Gran Mals. But sometimes the other symptoms of focals and temporal lobe stuff too. 

 

Here is another article on the formation of epilepsy and benzo use. They need more data though on this and aren't completely convinced that only benzo use is the main cause of epilepsy. But interesting nonetheless. But what I can't find in the article is what kind of taper they did or if it was all abrupt discontinuation that put them in this epileptic state.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635822/

 

I have been over on the Epilepsy reddit forums many times and WOW you should just SEE the quick pace at how even neurologists are weaning their patients off of hardcore AED's. They will take say a whole QUARTER off of freaking Keppra/Lamictal (nasty nasty aed) and wait for a measly 2-8 weeks and then do it again. INSANE!!!!!!!!!!!! And these are long term users of these meds.

It so sad and of course they all "relapse" and then their docs tell them it is their epilepsy coming back and need to stay on for LIFE.

COME ON you gotta wean those meds even more slowly than benzos to me if it is an epileptic patient. 

 

Try and be honest with me if possible. There is no judgement here.  Did your son do a sensible taper? Or was he abruptly taken off?  How is his diet? Does he get outside and do any movement/activity? Stress management?  And this is a big one........... How much screen time/video games, etc does he get?  I really feel the brain was not meant for all this constant barrage of big tech and it is changing the brainwaves of our citizens. And puts us into a constant stress state.  The blue light argument doesn't hold up well to me and it protects the technology companies from blame. I think too much computer use say after the sun goes down is very dangerous blue light or no blue light, for the pineal gland. And even too much daytime use. I mean these phones have become like attached to people's consciousness (That is why i have an old school 4g flip phone still LOL!!!!!!) and they are so dangerous on brain health especially the youth. The constant info overload alone is enough to cause dysregulation, but i am talking the actual screens and the artificial light they emit and the constant staring has to be at least questioned in our mental health epidemic of the youth. All the dry eye syndromes I keep hearing about MUST be at least a bit correlated with screen time. 

  I think in time this will be discovered. 

 

 

Edited April 10 by [re...]
spelling error

[[Da...]]

[[Da...]]

On 10/04/2024 at 15:30, [[r...] said:

Hey there Bmom thank you for the inquiry.

I can't give you a diagnosis of course. To put your mind at rest maybe he could get an eeg. Thing is those are very primitive from a typical neurologist and will most likely try to induce seizures with flashing lights and hyperventilation in a possible sleep deprived state which really doesn't always show much. An epileptologist is much better for someone trying to find out about their condition. 

Yes there are some studies that correlate an ABRUPT benzo withdrawal with a seizure state

state.https://pubmed.ncbi.nlm.nih.gov/21815323/

Even for short term users less than 15 days. But more so for long term/ high dose users,  As well as erratic benzo use.   Now I don't wanna scare anyone as even this is very rare for the cold turkies on here. Hate to burst anyone's bubble and  I am sorry, but seizures don't always present as you flopping around like a fish on the floor. They come in many forms.

But yes that is definitely a sign of temporal lobe seizures. And it could be panic attacks as well. They share a very similar situation and course of action

. There is an amazing girl on You Tube called Angelique busko that has a site called "{my journey to be seizure free" and she talks about the symptoms of her seizure. She has the typical Gran Mals. But sometimes the other symptoms of focals and temporal lobe stuff too. 

Here is another article on the formation of epilepsy and benzo use. They need more data though on this and aren't completely convinced that only benzo use is the main cause of epilepsy. But interesting nonetheless. But what I can't find in the article is what kind of taper they did or if it was all abrupt discontinuation that put them in this epileptic state.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4635822/

I have been over on the Epilepsy reddit forums many times and WOW you should just SEE the quick pace at how even neurologists are weaning their patients off of hardcore AED's. They will take say a whole QUARTER off of freaking Keppra/Lamictal (nasty nasty aed) and wait for a measly 2-8 weeks and then do it again. INSANE!!!!!!!!!!!! And these are long term users of these meds.

It so sad and of course they all "relapse" and then their docs tell them it is their epilepsy coming back and need to stay on for LIFE.

COME ON you gotta wean those meds even more slowly than benzos to me if it is an epileptic patient. 

Try and be honest with me if possible. There is no judgement here.  Did your son do a sensible taper? Or was he abruptly taken off?  How is his diet? Does he get outside and do any movement/activity? Stress management?  And this is a big one........... How much screen time/video games, etc does he get?  I really feel the brain was not meant for all this constant barrage of big tech and it is changing the brainwaves of our citizens. And puts us into a constant stress state.  The blue light argument doesn't hold up well to me and it protects the technology companies from blame. I think too much computer use say after the sun goes down is very dangerous blue light or no blue light, for the pineal gland. And even too much daytime use. I mean these phones have become like attached to people's consciousness (That is why i have an old school 4g flip phone still LOL!!!!!!) and they are so dangerous on brain health especially the youth. The constant info overload alone is enough to cause dysregulation, but i am talking the actual screens and the artificial light they emit and the constant staring has to be at least questioned in our mental health epidemic of the youth. All the dry eye syndromes I keep hearing about MUST be at least a bit correlated with screen time. 

  I think in time this will be discovered. 

With me, there is no doubt that there was lack of oxygen, it wasn't panic attacks....my oxygen levels were at 77%-85%....frequently over a couple of months...it lasted for hours not minutes.  Why I never call 911 I have no clue, I guess I thought it was just anxiety.  But Oxygen that low over periods of times is not good for the brain.  Oh Well, I can't do anything but hope it doesn't continue to happen.  I do not think it was due to withdrawals though...I feel better when I don't take a benzo - so the withdrawl symptoms for me are more physical.  I don't crave them, I don't wait to take it..often I forget and have to remind myself I am tapering and to follow the timings.

[[re...]]

Hey there Darlene that is such a freaky thing that you are having those lower oxygen levels. Are you in a city? What is the area like where you live? Is it more desert or high plains? Deep south with humidity. I wonder if you could get some of those portable oxygen things when that happens. 

Something Like this:

https://www.cvs.com/shop/boost-oxygen-medium-natural-5-l-prodid-2330023

 

[[Da...]]

I am in a small coastal town