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

[[ca...]]

 

First of all, thank you to everyone who bravely tells their stories on here. I am  not going through this myself but am a caregiver and support to my now 22 year old daughter who is suffering with this hell. Your words have given me hope, tools and guidance through all of this. I’ve been quietly reading up until now  but I guess now am looking for/need some validation that we are right in thinking this is what my daughter is going through. Like everyone one here, we’ve gone through moments of “but what if we aren’t on the right track?” I'll try to make her story short.(fat chance!)  My daughter has always had general anxiety, a little more crippling at times than most, but doing very well with it. In feb 2021 she had a Breast reduction surgery that was very hard to recover from. (I say this because I know surgery and long periods of bedrest due to surgery can be associated with developing pots symptoms)  So not sure if relevant or not.  Anyway, between recovering from that and April 2022 she would have  sporadic near fainting/dizzy episodes that would cause anxiety and sometime panic attacks but she always worked through them. It did however make her health anxiety spiral out of control because of course she assumed something was wrong with her heart. In April of 2022 we took my then 20 year old to the ER because she did get dizzy and pass out(quickly, seconds) and we wanted her to know she was ok. They ran ekg,blood work etc in ER which all came back fine.  She was shaking and panicking a bit though, they called it a panic attack and  they gave her a dose of lorazepam which of course made her feel better and they also sent her home with a prescription. She had never taken benzos or anything like this  before this. She is very sensitive to medicines which in hindsight we should have thought about. Her prescription was .5 as needed every eight hours. She NEVER took it that often . She would half it and take .25 every time she felt panic come on or felt dizzy/off. Literally once every one or two weeks sometimes even three weeks at bedtime mostly which helped with sleep. Such a small dose, right? After the prescription, She started getting alarming symptoms that would come and go, heart racing, chest pains, breathing issues,  blurry vision balance issues, itchy skins, numbness, tingling  and more I'm not listing to be honest.  Concerned with these symptoms and thinking it's much more than anxiety, In February of 2023 she went to a new GP with the list of symptoms. It NEVER occurred to us to connect the symptoms with her taking these. Her PC of course did basic tests, blood work that all came out fine and stated anxiety,  and said to keep taking the benzo that it was a great solution. So she continued. In May she began fainting many times a day  and bedridden. Also, her symptoms were getting more severer and also more of them(so many to list) From there, like most on this forum, we saw every specialist and had had every test you can name. Thousands of dollars later,  all came back fine so GP chalked it up to POTS even though cardiologist said the way she was presenting didn’t match pots. we were also running out of specialists lol. Sometime after all of this a lightbulb went off and I started researching more about benzos. It's scared me and I actually found her prescription and threw away her last pill that was in there. I mentioned this to her doctor who actually made me feel extremely stupid and her and my daughter(who still just loved how the benzos made her feel right after taking them) talked me out of thinking that could be why this was happening. Her Doctor INSISTED there was no way such a low dose could cause this. She continued to have her meds filled. Well,  more severe and the same horrible symptoms followed., (she can related to basically every single symptom that is listed by practically everyone on here that we have read about so far I kid you not) To make things worse her dr  had her try an ssri against my better judgment. THe doctor swore it helped pots patients. Well we never thought her symptoms could get worse but they did and then GI  symptoms were added to top in all off (the one she had sort of avoided was severe IBS like discomfort) she was on those from sept 2023 to jan 2024. During witch her symptoms reached a new level including pretty scary seizure  like activity. (Which lead to more specialists and more extensive testing which ALL came back fine. seizures were ruled out even though they presented as such)

I will stop with health details now as I know these all sound familiar to everyone here. At this time my daughter started agreeing with me about these meds being bad news. She did taper off the SSRI(PRO)  but just stopped taking the benzo (ATI)  (off both in jan 2024). She has had some good days but very few. She should have graduated college in May 2023 but is down to online summer or one class a semester. Her teachers are so understanding. Thank goodness. She has. Been able to work part time on and off but always ends up quitting due  to fainting at work. She could get through the ZIllion uncomfortable symptoms and “fake it” through work and school if it wasn’t for the fainting and her foot/leg muscles locking and causing her to be bedridden. Shes at 8 months rn completely off everything. She  did CT off this seemingly sporadic small dose. Here is the timeline of benzo refills:

4/7/22 10 pills

2/6/23 10 pills(tossed 1)

7/21/23 10 pills

12/9/23 10pills(tossed 5)

Took last one mid January 2023 again the script was .5 she would half that most of the time maybe took a full on 3 times towards the last refill.

Again EVERY thing as been ruled out by much invasive and extensive testing with all the specialists. Non of them entertain the benzo theory however her neuro said absolutely the prozac could have these effects. Not sure why one but not the other but…

 

So that is actually the short version. Not sure what I'm looking for but my heart is broken for her. I think I need validation that we are thinking correctly and that yes keep trusting the success stories and that time will heal. It's so hard when doctors are of no help. She keeps going back to asking or more tests and I keep having to remind her what we probably KNOW this is! I visit here often to keep my spirits up so I can keep her spirits up. She does not like to come on here herself as it tends to make her perseverate on the bad stuff too much. No 22 year old should have to be this dependent on her mom! It just kills me for her. She's got a great attitude but of course has days when she just wants to give up. She’s in a horrible wave right now. Can’t work, is worried about having to withdraw from her one class and is using the wheelchair way too much.  Im hoping this is the last storm I've been reading so much as it's more severe like the earlier days. But trying not to hold my breath. Thank you to everyone who lasted this long reading her story. BB is full of brave and amazing humans. Your words help this mom more than you could ever know!

 

Edited September 15 by [ca...]

[[Pa...]]

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?  

[[ca...]]

she had a few near faints dizzy etc and only fainted very quickly once that lead to that  first  early trip to ER.  they chalked it up as panic attacks and that is when she started taking benzos. I always wonder if she was maybe starting to exhibit pots symptoms that weren't very severe but got VERY severe after starting benzos. Since she did have some general anxiety we assumed their saying it was panic attacks was believable.

Edited September 14 by [ca...]

[[Ch...]]

Am I understanding correctly that your daughter started having actual seizures that have never been investigated, diagnosed, and treated by the doctors?

Interestingly, Ativan is often used to treat seizures.

[[Pa...]]

It feels like her medical team is missing some vital information, her fainting and seizures seem like important clues, I know anxiety and panic can produce severe reactions but I've not heard any members talk about fainting as one of them.  And seizures as @[Ch...] pointed out are typically controlled by benzodiazepines.

Everything else you describe sounds like withdrawal symptoms but I wish we could know what is behind the other symptoms.  I don't know anything about POTS but if her cardiologist isn't sure, I'd question that diagnosis. 

I have no doubt that your daughter will recover from her Ativan use, it was comparatively brief but I wish we knew what else was going on.

 

[[ca...]]

38 minutes ago, [[C...] said:

Am I understanding correctly that your daughter started having actual seizures that have never been investigated, diagnosed, and treated by the doctors?

Interestingly, Ativan is often used to treat seizures.

 

 

Yes! Ativan is used for seizures. All apologies I think my post is more confusing than it should be. I thought I did an ok job saying she's had every test under the sun and nothing was found, lol I obvi did not! I would never have left something like seizures go without getting it looked into. she's been to more doctors than any human at her age should. She has fainted and presented with these symptoms at her doctors office.  I should edit it and say seizure like activity. I did video my daughter at her worst and showed all the specialists, docs etc. which lead to all the numerous and elaborate testing because they were also in agreement that the video and our details mimicked seizures. however nothing came back indicating seizures, even when she presented as such wearing the EEG. So yes to say seizure  exactly is technically false even though she presented very much the same. im sorry for confusion. her seizure like activity which was alarming and scary to say the least has subsided since going off both meds. It was severe during the period she was on both meds.  now, she still faints and her muscles convulse, spasm  and lock but the seizure like activity has subsided. I will edit my post to reflect this. 

 

 

[[ca...]]

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

 

 

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

i

 

Edited September 15 by [ca...]

[[ca...]]

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

It feels like her medical team is missing some vital information, her fainting and seizures seem like important clues, I know anxiety and panic can produce severe reactions but I've not heard any members talk about fainting as one of them.  And seizures as @[Ch...] pointed out are typically controlled by benzodiazepines.

Everything else you describe sounds like withdrawal symptoms but I wish we could know what is behind the other symptoms.  I don't know anything about POTS but if her cardiologist isn't sure, I'd question that diagnosis. 

I have no doubt that your daughter will recover from her Ativan use, it was comparatively brief but I wish we knew what else was going on.

Yes! Ativan is used for seizures. All apologies I think my post is more confusing than it should be. I thought I did an ok job saying she's had every test under the sun and nothing was found, lol I obvi did not! I would never have left something like seizures go without getting it looked into. she's been to more doctors than any human at her age should. She has fainted and presented with these symptoms at her doctors office.  I should edit it and say seizure like activity. I did video my daughter at her worst and showed all the specialists, docs etc. which lead to all the numerous and elaborate testing because they were also in agreement that the video and our details mimicked seizures. however nothing came back indicating seizures, even when she presented as such wearing the EEG. So yes to say seizure  exactly is technically false even though she presented very much the same. im sorry for confusion. her seizure like activity which was alarming and scary to say the least has subsided since going off both meds. It was severe during the period she was on both meds.  now, she still faints and her muscles convulse, spasm  and lock but the seizure like activity has subsided. I will edit my post to reflect this. 

[[Pa...]]

I'm sorry you have to keep going over your story @[ca...], but thank you for being patient with us as we try to understand.  I appreciate you clarifying that she had seizure like activity, still really scary but this gives me hope these episodes didn't cause any lasting damage.

And thank you for letting us know she's not had the seizure like episodes since she's been medication free, that feels significant.  I'm still questioning the fainting, I've not seen that here, but I've learned not to be shocked at the myriad of symptoms this nightmare heaps on us.  Would you be willing to describe them in more detail?  Have you been able to determine what might bring them on, what she feels beforehand and how long they last?  Anything we can recognize as them being a symptom of withdrawal?

[[ca...]]

9 hours ago, [[P...] said:

I'm sorry you have to keep going over your story @[ca...], but thank you for being patient with us as we try to understand.  I appreciate you clarifying that she had seizure like activity, still really scary but this gives me hope these episodes didn't cause any lasting damage.

And thank you for letting us know she's not had the seizure like episodes since she's been medication free, that feels significant.  I'm still questioning the fainting, I've not seen that here, but I've learned not to be shocked at the myriad of symptoms this nightmare heaps on us.  Would you be willing to describe them in more detail?  Have you been able to determine what might bring them on, what she feels beforehand and how long they last?  Anything we can recognize as them being a symptom of withdrawal?

Oh gosh you are the patient ones. thank you for your time! when she feels as if fainting may come she does say generic terms like I feel very weird,  but she is definitely super dizzy and has brain fog weak body.  she usually feels it coming and can sit or lay before hand or give warning. It is unusual that she blacks out with no warning. her body usually jerks/twitches and her muscles tighten all over beforehand and while she is out. sometimes super quick sometimes minutes she is out. an annoying thing that is a constant since about dec of 2023 is she will wake up from one with her left foot completely turned in and stuck. It will stay like this for hours sometimes over a day. she is very sore all over as well after as im assuming her muscles are crazy contracting all over. sometimes her legs just stop working and shes got to get them going slowly after fainting. She always has to pee badly after. Never loses control of that though! in the beginning of this getting out of control she would lose her hearing, her sight, she would talk gibberish during a fainting spell that has all gone away since stopping the meds. Like I said alongside the fainting she was experiencing daily horrible symptoms matching  a lot of people in here. quite a few a them have gone away since stopping the meds and I have to keep reminding her how far she has come.  The fainting isn't alway a constant either, it comes and goes and right now shes in a pretty yucky wave and it's daily. 

[[...]]

Hi @[ca...], I'm in the same boat as you with my 23 year old son. I recognize the symptoms you are trying to describe of seizure like activity, it's like his body or part of his body tenses up when something stresses him out, and when movement returns it comes with trembling first and then he snaps out of it like nothing happened. He does seem to faint during these episodes but not always, and at his worst, many months ago, he sometimes said he didn't hear or see well. I've noticed clear improvement in that this seemed to happen randomly before and very often, while now (he's 21 months off everything) it mostly happens when something triggers him or during exercize (he's quite fanatical about weight lifting, which I know can stress his system but he insists it makes him feel better).

I've had the same doubts you're having, and we've followed the same route with confusing diagnoses and drs denying that benzos cause any harm. This is a very lonely road, also for caregivers, and I've found the most support for myself in a facebook group called Families affected by benzos.

Things aren't over yet for us but they are improving, while my son was bedridden for months last year, he is now able to go to university again and follow his courses. Nobody would suspect he's not well, he looks and acts normal although he still suffers from anxiety and emotional problems.

[[Pa...]]

Oh my goodness @[...], I'm so grateful you joined the conversation, I'm so far out of my depth, thank you!  I had no idea benzodiazepines could cause what you're both describing, I hope you'll continue to converse because it helps me learn so I can help the next person.  And thank you for offering another resource for @[ca...].

[[ca...]]

Edited September 16 by [ca...]

[[ca...]]

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

Oh my goodness @[...], I'm so grateful you joined the conversation, I'm so far out of my depth, thank you!  I had no idea benzodiazepines could cause what you're both describing, I hope you'll continue to converse because it helps me learn so I can help the next person.  And thank you for offering another resource for @[ca...].

I too, am so grateful for her response. But thank YOU again, for the way you try to reach and help everyone. You are an extraordinary human! 

[[Ar...]]

Because doctors never acknowledged my benzo withdrawal, with the treating psychiatrist trying to cover up his mistakes after causing the death of another patient, I had to do all of my own research to learn the cause of my symptoms. It took me ages to learn that the benzodiazepine receptors (nicotinic/acetylcholine) are involved in seizures, explaining why I suddenly found myself sitting on the ground while I was walking. It's similar to how nicotine can trigger seizures through the same receptors. https://www.sciencedirect.com/science/article/abs/pii/S0028390804001352   Excess acetylcholine signaling seems to cause them. Seizures can appear like syncope (fainting). I only ever experienced a single actual physical seizure, due to psychiatrists trying to treat my benzo withdrawal with the antipsychotic seroquel, but experienced many occasions when I suddenly 'woke up' wondering what had just happened. Each time this occurred to me I experienced the feeling that something was wrong. During walking I would stop, trying to understand what was happening, and the next thing I knew I was on the ground. Sitting in a chair I would be focusing on something and then be wondering what had happened as I knew that I hadn't been falling asleep. From what I have been able to learn all of our symptoms result from these receptors.

[[...]]

5 hours ago, [[A...] said:

Because doctors never acknowledged my benzo withdrawal, with the treating psychiatrist trying to cover up his mistakes after causing the death of another patient, I had to do all of my own research to learn the cause of my symptoms. It took me ages to learn that the benzodiazepine receptors (nicotinic/acetylcholine) are involved in seizures, explaining why I suddenly found myself sitting on the ground while I was walking. It's similar to how nicotine can trigger seizures through the same receptors. https://www.sciencedirect.com/science/article/abs/pii/S0028390804001352   Excess acetylcholine signaling seems to cause them. Seizures can appear like syncope (fainting). I only ever experienced a single actual physical seizure, due to psychiatrists trying to treat my benzo withdrawal with the antipsychotic seroquel, but experienced many occasions when I suddenly 'woke up' wondering what had just happened. Each time this occurred to me I experienced the feeling that something was wrong. During walking I would stop, trying to understand what was happening, and the next thing I knew I was on the ground. Sitting in a chair I would be focusing on something and then be wondering what had happened as I knew that I hadn't been falling asleep. From what I have been able to learn all of our symptoms result from these receptors.

Did this ease up for you? Are you still on Seroquel? 

I've noticed my son had this symptom returning this week, together with others he hadn't had for a while, probably another wave.

[[Ar...]]

Because my condition wasn't diagnosed, and I had all of the resulting issues with immune depression and infection and many more health issues than its worth going into, there were lots of ups and downs in my recovery. I haven't been on any psychiatric medications for nearly ten years now, my physical response to all of them was so negative that even the psychiatrists recognised the pointlessness of continuing to try them and I had always been an unwilling mental health patient. Antibiotics definitely helped my recovery since the resulting infection had a big impact at the time. A lot of the negative responses to various psych meds take around five years before they ease and that was the case for me though I still have a lot of the physical ill health issues over ten years after withdrawal symptoms started. I haven't experienced things like seizures/fainting for years but I'm unable to walk very far so don't know whether its likely that it might happen if I tried to push myself to walk beyond my capacity. I notice that a lot of people here have increased blood clotting issues (APS; antiphospholipid syndrome) like myself, as a result of the withdrawal, and my heart rate enters dangerous levels if I either walk too far or don't have a rest every few steps. I didn't know that the withdrawal worked in waves back then but can recognise that it was very likely that I experienced the same highs and lows in symptoms which fit that pattern but I was so ill then that the changes were often very subtle.

[[jo...]]

8 hours ago, [[A...] said:

nicotine can trigger seizures through the same receptors

I didn't know this. I have smoked/vaped all the way through this so thats a bit worrying. Do you think nicotine affects healing generally? I've often wondered.

[[Ar...]]

Just now, [[j...] said:

I didn't know this. I have smoked/vaped all the way through this so thats a bit worrying. Do you think nicotine affects healing generally? I've often wondered.

Absolutely, I have read a lot about how nicotine both blocks the nicotinic/acetylcholine receptors and, temporarily, overactivates them even though I've never been a smoker. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10572882/ Blocking the receptors could well have a beneficial effect on the withdrawal, with researchers investigating the use of nicotine to try to treat a number of health issues through this mechanism, however the initial nicotine response would likely aggravate the withdrawal. Potentially this could exacerbate the waves but it's likely hard to predict. The body relies upon nicotinic acid (a specific type of vitamin B3) for the receptors to function in a healthy way, and this has anecdotally been shown to increase the rate of healing from benzo withdrawal however nicotine seems to block this benefit. So it could reduce cholinergic signaling when you're not actually getting the high from smoking but I would think it likely that it would increase that signaling when you are getting that high. This is just as complex as how nicotine induces the various diseases associated with smoking as the same receptors are involved in them too.