This mom needs a little support if you have any to spare

[[ca...]]

On 06/10/2024 at 02:58, [[S...] said:

My wife can have a similiar episode care to share the video of one in private?

She would faint and drop to the floor. Other times she could go into a sort of panic attack with tremors over her body. Pseudo epilepsi they called which from what I understood is a way of saying we dont know its not really epilepsi but looks like it and yes its also panic attack.

What she did have was IBS and a shortage of B12. She didnt have such an episode for 2 years now i think. which in her case is big deal as one can imagen.

sounds awful and familiar. im so glad she hasn't had one in years. It's unsettling to say the least.  I'm not sure my daughter would want me sharing the videos, she's very private and hates when she shares even with the doctors lol she's young!  haven't had blood work for her in a while, maybe we will revisit just to make sure. My daughters IBS symptoms starting immediately after adding an AD which she tapered off fairly quickly but her IBS is still awful after 9 most of being off. playing around with getting colonospy/endoscopy. Just tired of tests and hoping it will reside as everyone says most things do after time and healing. such a long terrible journey. thank you for sharing, you have know idea how much it helps to know some others have gone through same experiences.  I hope you wife has healed or is close to being over this for good.  

 

[[ca...]]

On 06/10/2024 at 03:09, [[A...] said:

Again, that makes sense as B12 is one of the nutrients which psychiatric drugs cause deficiencies of.

And then supplements can make things worse. Just such an awful journey!

 

[[Si...]]

On 07/10/2024 at 14:36, [[c...] said:

sounds awful and familiar. im so glad she hasn't had one in years. It's unsettling to say the least.  I'm not sure my daughter would want me sharing the videos, she's very private and hates when she shares even with the doctors lol she's young!  haven't had blood work for her in a while, maybe we will revisit just to make sure. My daughters IBS symptoms starting immediately after adding an AD which she tapered off fairly quickly but her IBS is still awful after 9 most of being off. playing around with getting colonospy/endoscopy. Just tired of tests and hoping it will reside as everyone says most things do after time and healing. such a long terrible journey. thank you for sharing, you have know idea how much it helps to know some others have gone through same experiences.  I hope you wife has healed or is close to being over this for good.  

Respectable decision and imo good practise not to share such private material. Just wanted to make sure we where talking about the same or very similiar thing.

Hmm i think youve mentioned it before but did th3se attacks start after her IBS started occuring? Or did she have these prior? 

As for ADs they can also cause shortage of certain vitamins and minerals. I would have to look it up which ones are typical for ADs.

Now if she is withdrawaling from benzo keep away from magnesium or try at low dosage and see what happens. Magnesium makes the gabaA receptors sensitive and during w/d roughly estimated around 50% of us dont react well to it.

In general see what foods contain certain vitamines and minerals that are typically low with ADs and indeed first step would be to take blood test. Taking supplements should imo be carefully approached during w/d our bodies live in a 2nd normal. Lastly magnesium cant be propperly blood tested because only 1% of bodies total magnesium resided in the blood serum, if a shortage would occur the body takes the magnesium it needs from bone or body organ materials. Vit. D supplementation also depletes magnesium. And with IBS some foods may irritate the bowls causing diarhea flussing some good (not all) nutrients out. There are like whole grain sacks or whats it called that help calm IBS down so your daughter would absorb better.

 

If you insist on trying magnesium anyway try a magnesium varient that doesnt cause diahrea. If you cant find it i can look it up. 

Edited October 10, 2024 by [Si...]

[[ca...]]

On 05/10/2024 at 23:26, [[B...] said:

Hi @[ca...],

I just saw this thread and thought I'd add my experience here as it sounds similar to what your daughter is dealing with. 

Many years ago, when I was about your daughter's age I began having these "episodes" where I would start to feel very strange, with dizziness, some vague pressure in the left side of my head, blurry vision, and feeling very faint as if I would pass out.  I never did faint, as I could feel it coming and would sit down.  It would progress to some loss of muscle function mostly in my left side and I would have trouble thinking and speaking and have some visual disturbances.  It would last anywhere from a few minutes to several hours and would repeat over the course of a day, sometimes several days.  I wasn't particularly anxious before they happened, but they sure made me anxious when they did, as they are hard to describe and rather terrifying at first.

I know this isn't exactly the same, but when you said she feels "weird" when it's coming and that she has to pee badly afterward, those two things struck me as I had those too.  And if I read your post correctly, these symptoms pre-dated her benzos use?  It pre-dated mine too and was one of the reasons I was put on Clonazepam to begin with.  

Eventually, after seeing many, many doctors and having a million tests done that all came back normal, I found a neurologist who diagnosed me with "complex migraine with a seizure component".  (To be clear, I don't have seizures, but It does look a bit like one.  I don't have the convulsing, but I do shake a bit.  And my head never hurt, as you would normally see with a migraine, I just had that vague pressure. )  That doctor said that the condition had the potential to progress into seizures someday.  Thankfully that has not happened. 

Eventually the clonazepam started to make it worse over the years and it has flared up again during my taper and subsequent withdrawal.  I am assuming that it will calm back down as I work my way through withdrawal.

Anyway, it just sounded so familiar, I thought I'd throw my story out there.  I thought perhaps it might be something for you to look into as an explanation for the original problem, after the withdrawal subsides.

Im sorry I am just seeing this post today. Im not sure how I missed your response. Thank you for sharing this. Yes! This sounds very similar to my daughter. I too am hoping as time passes it will get less severe and to the level it was before she was put on Benzos. The Pre syncope and anxiety(sometimes panic attacks)  came before benzos. the actual fainting  and muscle tightening, shaking and "seizure" like activity came after being on the meds. (along with other symptoms described by many on here. ) And with that her anxiety skyrocketed to a whole new level. She fights this beast daily. Her neurologist was not much help, maybe we should look into finding another one. She is 10 months off all meds today. She is  in a horrible wave that has last weeks right now. We are hoping this is the last storm before the calm, but as you know, who the heck knows??? Are you completely off yet? I hope you see improvement very soon. This is awful!

 

Edited November 9, 2024 by [ca...]

[[ca...]]

On 14/09/2024 at 16:50, [[P...] said:

Hello @[ca...], I'm so sorry for your daughter and for you, I can see this has taken a toll on you both.  Thank you for giving such a thorough history of your daughters situation but I don't understand what originally caused your daughters fainting spells, did you ever get a diagnosis?  

Hi Pamster! I love that there is a caregiver section, I really do and it is needed! However I feel this post is more about finding similar symptoms from others going through this more than myself needing emotional support as a caregiver. Wont moving this limit who responds if i'm looking for answers to withdrawal symptom questions? thoughts? Hope your day is going well and again thank you for your constant support!

[[Pa...]]

1 hour ago, [[c...] said:

Hi Pamster! I love that there is a caregiver section, I really do and it is needed! However I feel this post is more about finding similar symptoms from others going through this more than myself needing emotional support as a caregiver. Wont moving this limit who responds if i'm looking for answers to withdrawal symptom questions? thoughts? Hope your day is going well and again thank you for your constant support!

You bring up a good point, let me take this to the team.  

[[Bu...]]

11 hours ago, [[c...] said:

Im sorry I am just seeing this post today. Im not sure how I missed your response. Thank you for sharing this. Yes! This sounds very similar to my daughter. I too am hoping as time passes it will get less severe and to the level it was before she was put on Benzos. The Pre syncope and anxiety(sometimes panic attacks)  came before benzos. the actual fainting  and muscle tightening, shaking and "seizure" like activity came after being on the meds. (along with other symptoms described by many on here. ) And with that her anxiety skyrocketed to a whole new level. She fights this beast daily. Her neurologist was not much help, maybe we should look into finding another one. She is 10 months off all meds today. She is  in a horrible wave that has last weeks right now. We are hoping this is the last storm before the calm, but as you know, who the heck knows??? Are you completely off yet? I hope you see improvement very soon. This is awful!

I'm sorry to hear about the wave.  Often when I went through a long wave I would have a better baseline after it. 

I have been off about 14 and 1/2 months, thanks for asking.  I've had many improvements, particularly in the last couple of months.  A lot of people talk about having some significant improvements around the 1 year mark. I had a huge jump forward with my sleep about 3 weeks after my year.  Hopefully this will be the case for your daughter, too.

[[ca...]]

12 hours ago, [[B...] said:

I'm sorry to hear about the wave.  Often when I went through a long wave I would have a better baseline after it. 

I have been off about 14 and 1/2 months, thanks for asking.  I've had many improvements, particularly in the last couple of months.  A lot of people talk about having some significant improvements around the 1 year mark. I had a huge jump forward with my sleep about 3 weeks after my year.  Hopefully this will be the case for your daughter, too.

This is so promising to hear. thank you for sharing!

 

[[An...]]

On 14/09/2024 at 17:50, [[P...] said:

Hello @[ca...], I'm so sorry for your daughter and for you, I can see this has taken a toll on you both.  Thank you for giving such a thorough history of your daughters situation but I don't understand what originally caused your daughters fainting spells, did you ever get a diagnosis?  

The fainting concerns me here also. Moreover, looking at the benzo timeline she posted, the daughter has not been taking the Ativan for very long or very much on a long-term, consistent basis. Also, JMO, it appears your daughter also suffers from an anxiety disorder and not just sometimes anxiety that all humans have from time to time.

After all physical causes have been ruled out, severe anxiety can cause fainting, but I think it is rare. I have had some pretty horrible anxiety and panic episodes in my life, but I have never fainted.

Edited November 22, 2024 by [An...]
addition

[[Ar...]]

1 hour ago, [[A...] said:

The fainting concerns me here also. Moreover, looking at the benzo timeline she posted, the daughter has not been taking the Ativan for very long or very much on a long-term, consistent basis. Also, JMO, it appears your daughter also suffers from an anxiety disorder and not just sometimes anxiety that all humans have from time to time.

After all physical causes have been ruled out, severe anxiety can cause fainting, but I think it is rare. I have had some pretty horrible anxiety and panic episodes in my life, but I have never fainted.

I only received Ativan for three weeks, while being treated as an inpatient, yet it was enough to trigger the commencement of my own symptoms of benzodiazepine induced neurological dysfunction. During the early years of that I was experiencing regular collapses which I now know to have been consistent with the waking falls occurring in Meniere's disease, which have the appearance of fainting. https://pmc.ncbi.nlm.nih.gov/articles/PMC6483450/   Although I now believe that most of my symptoms were consistent with porphyria the issues involved in Meniere's disease would certainly explain a lot. https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910

The first time that I was given Ativan I spent around an hour or so laughing uncontrollably. As I'm now aware this is symptomatic of having experienced a stroke, the restriction of blood to the brain. While that was the only time that this occurred it did appear to have a long term effect on my mind and behaviour and restriction of blood supply, ischaemia, is believed to be the cause of Meniere's disease. https://www.sciencedirect.com/science/article/pii/S0013935123017760   Perhaps caregiver should be asking her daughter whether she experienced either uncontrollable laughing or crying when she was first given the Ativan.

[[ca...]]

On 22/11/2024 at 12:01, [[A...] said:

I only received Ativan for three weeks, while being treated as an inpatient, yet it was enough to trigger the commencement of my own symptoms of benzodiazepine induced neurological dysfunction. During the early years of that I was experiencing regular collapses which I now know to have been consistent with the waking falls occurring in Meniere's disease, which have the appearance of fainting. https://pmc.ncbi.nlm.nih.gov/articles/PMC6483450/   Although I now believe that most of my symptoms were consistent with porphyria the issues involved in Meniere's disease would certainly explain a lot. https://www.mayoclinic.org/diseases-conditions/menieres-disease/symptoms-causes/syc-20374910

The first time that I was given Ativan I spent around an hour or so laughing uncontrollably. As I'm now aware this is symptomatic of having experienced a stroke, the restriction of blood to the brain. While that was the only time that this occurred it did appear to have a long term effect on my mind and behaviour and restriction of blood supply, ischaemia, is believed to be the cause of Meniere's disease. https://www.sciencedirect.com/science/article/pii/S0013935123017760   Perhaps caregiver should be asking her daughter whether she experienced either uncontrollable laughing or crying when she was first given the Ativan.

thank you for the info. She did not experience uncontrollable laughing or crying after taking it.  But one time after one specific "fainting spell" she came to out of it and did have weird fits of laughter. this was a one time thing and a long time ago. I cant remember if it was during what we now think would be interdose or if it was after she completely stopped. Id have to look at her journal. Regardless I will research Menieres disease,

[[Ar...]]

30 minutes ago, [[c...] said:

thank you for the info. She did not experience uncontrollable laughing or crying after taking it.  But one time after one specific "fainting spell" she came to out of it and did have weird fits of laughter. this was a one time thing and a long time ago. I cant remember if it was during what we now think would be interdose or if it was after she completely stopped. Id have to look at her journal. Regardless I will research Menieres disease,

The uncontrollable laughter/crying, etc is what they call the pseudobulbar affect. https://www.mayoclinic.org/diseases-conditions/pseudobulbar-affect/symptoms-causes/syc-20353737 It's interesting that this can be part of a larger condition called pseudobulbar palsy and that the symptoms of that fit with some of our own symptoms. https://my.clevelandclinic.org/health/diseases/pseudobulbar-palsy I was able to find a research article indicating that high levels of porphyrins have been found in half of the people experiencing pseudobulbar affect, seemingly indicating a role of porphyria in the condition. The article isn't publicly available so it's not worth including a link.