Neuro Dr said I won’t heal

[[hl...]]

Is this all some big joke? Im no better than I was a year ago! I just started thinking about Christmas Eve dinner 2022 and how difficult it was for me.

Im just as agoraphobic as I was then, still cannot drive myself anywhere. Still can’t go anywhere comfortably. It’s become increasing clear to me that I’m probably not going to heal.

Since I can’t leave my home, I spend a lot of time reading almost everything I can in this forum and I’ve concluded that most people see great improvement around the same timeframe that I’m at.

 

it’s been 1 year for me and I’m no better than I was in acute. Most people defeat agoraphobia in a few months and can atleast resume part of their normal lives but unfortunately I cannot do that.

 

my brain is too overstimulated all the time to do anything. I get “stuck” in some sort of overwhelming sensation and my mind starts racing and I start freaking out.

 

I saw a neurologist and she said “I just have a sensitive brain” and said it probably won’t get better and I should just take some bs neuro meds and more benzos. **** her. I’m just so upset.

 

has anyone here in this forum actually RECOVERED from agoraphobia, overstimulation, ect…? I can’t stand living like this anymore 

[[Je...]]

Thousands of people have recovered.  I’m sorry you are going through this and we know that most doctors don’t know shit about benzos.  
 

the brain will heal in time.  You just may need to do more things that help speed go the healing process.  And the more you focus on the symptoms, the more they will grow.  I know it’s hard not to, but if you believe you are healing, your brain will start believing it too.  
 

It’s like If said you put poison in your friends drink and let him know you did after he drank (even though you didn’t) your friend would start throwing up.  Because he believed he was sick.  
 

Try to convince yourself you are healing.  Because you are. You just don’t know when 🙂

Edited July 25, 2023 by [Je...]

[[Ha...]]

I suggest you look for another neurologist. It doesn't seem like she has much of a clue what's going on. I was speaking with someone recently that's in recovery. She'd spoken to the head of the neurological department in her local hospital. Said the worst thing you can do when the brain is trying to heal is add more drugs. So the fact that your neurologists 1st answer to your problems is to recommend more drugs would be a red flag to me. 

I know you must be discouraged, it's hard not to be when looking at other people. But we all heal in our own way. I've never had windows as such, just cycle symptoms, didn't see any major progress until 18months maybe? It's all a bit of a blur. But things have improved.

It's easy to focus on what hasn't improved, and the symptoms you've mentioned I'm guessing are your main ones? I've never had a break from head symptoms for example, so I fixate on them. But other symptoms have come and gone. Has anything at all improved? 

 

 

[[Ma...]]

I’m so sorry you’re going through this. Maybe get a 2nd opinion from a different Neuro?

 

Having A Mare: what were you’re head symptoms?

[[jo...]]

If there is one thing I've learned through this experience is the vast majority of medical professionals are just guessing when it comes to benzos, at best.  At worst they are grossly misinformed.

[[...]]

Yeah. Your neurologist has no idea what they are talking about. Most recover it may take a while, but most recover.

[[fe...]]

Adding to everyone else's sentiment a quote from my husband "Some doctors think that their postnomials are GOD, not MD".

I'd like to see that neurologist's crystal ball. @[hl...], doctors can often give voice to your worst fears.. try to temper that with the experience that your buddies share here. Hang in there!

 

[[Ha...]]

25 minutes ago, [[M...] said:

I’m so sorry you’re going through this. Maybe get a 2nd opinion from a different Neuro?

Having A Mare: what were you’re head symptoms?

It's difficult to explain, but....

Everything moving around, pressure, pain, clicking, crunching, whooshing noises, vibrating, buzzing, shooting pains, dizziness and vomiting.

I've developed alopecia areata now, which has to be connected IMO, not that the doctor will agree

 

[[Tr...]]

I've had 2 psychiatrists since I discovered the benzo nightmare via an explosion of akathisia symptoms last May 28. 

Psychiatrist A: Her knowledge matches what we've read about GABA and benzos. In her personal experience she says she saw people heal 2 years max. Suggested Lyrica to "probably" lessen symptoms. She was very clear that it is not a cure. She said there is no cure. Only time. She doesn't believe in antidepressant long term withdrawal tho.  

Psychiatrist B: high-ranking member in my country's psychiatrist society. Told me to do basic lab test coz the akathisia "might be from something else." He believes that benzos are ok to be taken long-term and even forever. When I asked him if he has witnessed people being ok once they got off the benzos he replied "I don't understand the question." And then told me to make a list of all the brain drugs I took so "we can see what else we can try." 

I have a consult with a neurotoxicologist this Saturday and I have been suffering from extreme anxiety coz these doctors are so traumatic to deal with. God help us all.

[[Ha...]]

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

I've had 2 psychiatrists since I discovered the benzo nightmare via an explosion of akathisia symptoms last May 28. 

Psychiatrist A: Her knowledge matches what we've read about GABA and benzos. In her personal experience she says she saw people heal 2 years max. Suggested Lyrica to "probably" lessen symptoms. She was very clear that it is not a cure. She said there is no cure. Only time. She doesn't believe in antidepressant long term withdrawal tho.  

Psychiatrist B: high-ranking member in my country's psychiatrist society. Told me to do basic lab test coz the akathisia "might be from something else." He believes that benzos are ok to be taken long-term and even forever. When I asked him if he has witnessed people being ok once they got off the benzos he replied "I don't understand the question." And then told me to make a list of all the brain drugs I took so "we can see what else we can try." 

I have a consult with a neurotoxicologist this Saturday and I have been suffering from extreme anxiety coz these doctors are so traumatic to deal with. God help us all.

Psych B sounds like an idiot. Akathisia can only happen with drug use. There's something seriously wrong with the profession IMHO, they refuse to take any responsibility, and point blank gaslight you. In the UK now there's more and more people shouting about antidepressant WD and PSSD. Yet psychiatrists are still denying it exists and cling to the claim that AD's help people and apart from a few minor side effects which resolve after you stop the medication, they are perfectly safe.

 

I feel there's a big storm coming 

[[hl...]]

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

I suggest you look for another neurologist. It doesn't seem like she has much of a clue what's going on. I was speaking with someone recently that's in recovery. She'd spoken to the head of the neurological department in her local hospital. Said the worst thing you can do when the brain is trying to heal is add more drugs. So the fact that your neurologists 1st answer to your problems is to recommend more drugs would be a red flag to me. 

I know you must be discouraged, it's hard not to be when looking at other people. But we all heal in our own way. I've never had windows as such, just cycle symptoms, didn't see any major progress until 18months maybe? It's all a bit of a blur. But things have improved.

It's easy to focus on what hasn't improved, and the symptoms you've mentioned I'm guessing are your main ones? I've never had a break from head symptoms for example, so I fixate on them. But other symptoms have come and gone. Has anything at all improved? 

I had pvc’s all the time early on and that ended up going away. I was also horribly dizzy and that improved, however my agoraphobia and overstimulation being outside of the house hasn’t improved at all in 7 months. I’m no better off than I was at Christmas 

[[Ha...]]

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

I had pvc’s all the time early on and that ended up going away. I was also horribly dizzy and that improved, however my agoraphobia and overstimulation being outside of the house hasn’t improved at all in 7 months. I’m no better off than I was at Christmas 

It's the main symptoms that hang around unfortunately. But the fact that other symptoms have passed means you're healing. It's just a painfully slow process. Things will improve, just try to focus on the things that have improved, not the things that haven't. You'll be ok 

[[gr...]]

thank you for this reply - I am still struggling with sleep and weird vision issues after a year - but I feel much better after pure hell the first few months. One foot in front of the other!

[[Ho...]]

At 4.5 years off I still struggle with this. The sensitivity to sounds, sights and movement are still very acute. I become over stimulated to the point that the heart palpitations (PAC and PVC’s) get much worse and it feels like my head is being crushed. Like I’m pulling a bunch of negative G’s in an aircraft and I’m about to pass out. I have just accepted that this is my permanent disabled life now. As I write this, the tinnitus is raging at a maddening level. Some folks do heal, some of us do not. ☹️

 

I hope you get some relief soon! Best wishes! 

[[PE...]]

Omg 4.5 years! My tinnitus was really bad for a couple of months. High pitch mostly on my right air. Now it's almost gone.