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Neurotoxicity-physician follow up


[Fi...]

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Can somone explain it?    What can be done about it?  Went to see integrative doctor who said that I have severe neurotoxicity and that’s permanent damage it can’t be reversed.  WTW?  I don’t understand.  I truly had no idea what she was talking about.  I started hyperventilating. 

 

My sons coming to visit and she’s got me feeling like I need hospice or something.

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Do NOT believe this, FM. This doctor undoubtedly has NO experience specifically with benzo WD. "Severe Neurotoxicity" is a catch all phrase, one that tells me this MD was "just fishin'." Of course you started hyperventilating! Who wouldnt?

NO ONE should tell this stuff is PERMANENT. They just do not KNOW. Saying that to a patient was, IMO, very unprofessional.

 

IF your problems are because of benzo WD, it will NOT be permanent damage. NO WAY! And dont let this person affect you so much!

 

I think you need to get back to basics now. Learn to distract yourself. Learn how to keep your mind busy on things OTHER than WD. Make some friends here on BB. Be a "true buddy" to several other people. Learn how to fake it. Learn coping skills.

 

Hospice? Give me a freaking break!!! What utter nonsense! Hospice is for people DYING and you most surely are NOT.

 

If neuro toxicity was permanent, I would be totally cuckoo right now....downright insane and probably on a locked psych ward. But I am not. Here I am, 6 years later, mentally healthy and physically a lot healthier than I was on benzos.

 

FM: I stopped trusting doctors very early on. I quickly realized that none of them have any CLUE about benzo withdrawal You can consult a physician, but YOU must decide what you believe or not believe!!! ONLY you are the captain of your ship (your health).

 

Brain damage from benzos is almost ALWAYS temporary. The only studies I know of showed that a few MALES who abused benzos (NOT legally prescribed-) plus drank a lot and used street drugs  - showed some permanent brain damage. This obviously is NOT like you, sweetheart! You are an ordinary citizen who took a drug for a good reason and are now paying a price for that. Like all of us!

 

You have to get back on track here and stop panicking. This doctor, in MY mind, knows nothing about benzo WD, and that definitly colored her "diagnosis."

Get back on a more hopeful track, sweetheart. You are going to beat this monster.

east :smitten:

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I WASN’T there regarding Benzos.  She brought it up.  Which freaked me completely out.  I was caught off guard by her remarks.  It was the furthest thing from my mind.   

 

You are correct East.  I’m staying away from doctors

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The Intergrative doctor called me.  She called me to offer me B12 and Lyrica., NOT AN APOLOGY.  And, to add insult to injury, that according to my gene test I have MTHFR and C something, and that I can’t make neurotransmitters or gaba.  UNBELIEVABLE.  I didn’t say a word.  I hung up on her. 
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LOL!!!! You GO, girl. Good for you.

 

The B12 wouldnt hurt. You can take it sublingually. (And I cannot spell that word today!) I am so glad you wont take Lyrica. Another garbage drug that frequently just hurts people.

 

To my limited knowledge, if you could not make neurotransmitters or GaBa, you would be dead now. I could be wrong. Try doing some research on this, and let me know what you discover.

east :thumbsup:

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I am used to hear that.

Its simple. Patients are left alone from normal doctors / hospitals and turn to naturopaths and other alternatives.

And then you can meet the same idiots in this area, too. Those who tell you that shit you heard. When it comes to integrative doctors the best selling idea used to be "you are poisoned we need to detox" and for now its the "neurotoxicity thing".

They tell that everyone. Of course a patient looks exhausted and sick - and can easily be "informed" about that "neurotoxicity thing".

And its such a nice "thing" because you can make so many treatments - and become rich.

Her suggestions what to take are just ridiculous - she has absolutely no knowledge about anything - come on, B Vitamins? Lyrica?

I would lough if you weren't hurt so much by that person.

 

 

You NEED to understand why she gives such advice - just to earn more money.

She doesn't seem to know anything about cellular processes, or the chemical base of fatigue or whatever - she is just an idiot.

Just an example: Under Lyrica you would LOSE B Vitamins. So WTF.

 

Shame on her. Pimples on her.

 

And now - move on.

She is a liar and you will not believe her.

 

You will find a better support.

 

Love,

Marigold

 

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Why do people have to be so cruel?  When you’re falling apart?    Her logic was B12 helps make neurotransmitters and the Lyrica will give you gaba for those neurotransmitters.  WTF?  She said that’s why I have all the head symptoms because I don’t have the ability to make neurotransmitters.  And, like you said Marigold and East.  She happens to sell B12!    I just have no words.  You know it’s hard enough and then you have this kind of crap. 
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What nonsense. You can buy B12 in any old drugstore. And its quite cheap. QUACK!!!!!

Dont let this stop you. You are still in BWD, FM, and that comes with a load of awful symptoms. You just have to deal with them, learn to cope and wait this out.

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Exactly!!!!  Telling me the stuff I feel in my head is brain damage.    Talk about gaslighting!  I’d be afraid to actually have seen her regarding Benzo WD. 
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Ahhh... how do I say this?

 

FM, in all truth, you DO have  brain damage, but it will only be temporary!!!! She sort of got it right but because like most doctors, she doesnt know much about benzo WD, she led you down wrong paths.

 

It took me a long time to accept that I had temporary brain damage. Being a nurse is why it was hard for me to get this. To me, brain damage is ALWAYS permanent. Now I know better. Benzos do damage the brain, but this damage goes away when you stop taking them. Many (perhaps most-) of your current symptoms are a result of this damage. But your brain started the process of repairing the damage the day you stopped taking benzos!  Your brain is a complicated thing, and much of its work is run by various chemicals it produces. All those chemicals have to get back in working order for you to start feeling better. And for some reason, some people just heal slower than others.  That does not mean you wont heal. But it may take you longer than someone else. Dont let this worry you - it does not mean a thing.

 

Just keep on going, and perhaps you have learned a lesson here. Dont blindly put your trust in physicians. They may mean well, but they cannot know everything.

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Hi Fighting4me, I'm fighting too. I needed to address your statement that you have MTHFR. I do too. It's a genetic mutation that many people have. It does effect the production of neurotransmitters, but you don't need to panic. I believe, like benzo withdrawal, people experience it differently. Once I learned I had it I found that I had also experienced many of the bad drug reactions others with the condition experienced. I happen to take Deplin, which gives me an active form of folate to assist neurotransmitter development. Does it work? I honestly don't know. What I know is that I have been able to wean off all my medications, that even though I am still suffering withdrawal symptoms I have windows of clarity where I can remember who I was before all this. Research MTHFR. Maybe this doctor is not the one to help you, but understanding MTHFR might help your recovery process. All the best to you, you are very strong!
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Hi Fighting4me, I'm fighting too. I needed to address your statement that you have MTHFR. I do too. It's a genetic mutation that many people have. It does effect the production of neurotransmitters, but you don't need to panic. I believe, like benzo withdrawal, people experience it differently. Once I learned I had it I found that I had also experienced many of the bad drug reactions others with the condition experienced. I happen to take Deplin, which gives me an active form of folate to assist neurotransmitter development. Does it work? I honestly don't know. What I know is that I have been able to wean off all my medications, that even though I am still suffering withdrawal symptoms I have windows of clarity where I can remember who I was before all this. Research MTHFR. Maybe this doctor is not the one to help you, but understanding MTHFR might help your recovery process. All the best to you, you are very strong!

 

Hi Kimmer,

 

You are very strong, too.  Congratulations on being off all medications!!!    What symptoms are you still experiencing?

 

I will do some research into the gene.  I’m especially concerned since the majority of my symptoms are in my head. 

 

Wishing You Speedy Healing,

FM

 

 

 

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Fighting, yesterday I punched myself in the head several times and screamed. It was a first and it was horrible. I felt so hopeless and many other things described here. That no-one understands, that I'm losing my kids etc. I yelled at my husband. I told him that when I was yelling at him (and I yelled this) that I was in pain, and just like a person with a broken leg (or a wife in labor  ;)) I didn't need rational talk (this is in your head), I needed kind words, (you're going to be okay, I'm here for you, It will get better). Today my mental anguish is much better.

 

These are the symptoms I have experienced since mid August. My last dose was 9/27/2018. Tinnitus, low to high pitched. Left eye vision disturbance. Weird Ear pressure my ears feel hot and stretched. Feet are cold and they get numb and nervy throughout the day. My right hand is numb. My mouth tastes metallic. Insomnia on and off.  Severe heart palpitations, I startle very easily. (happen to be seeing a cardiologist today about this) and yes, ANXIETY! I know there are a couple more but, this is enough :).

 

Kim

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Fighting, yesterday I punched myself in the head several times and screamed. It was a first and it was horrible. I felt so hopeless and many other things described here. That no-one understands, that I'm losing my kids etc. I yelled at my husband. I told him that when I was yelling at him (and I yelled this) that I was in pain, and just like a person with a broken leg (or a wife in labor  ;)) I didn't need rational talk (this is in your head), I needed kind words, (you're going to be okay, I'm here for you, It will get better). Today my mental anguish is much better.

 

These are the symptoms I have experienced since mid August. My last dose was 9/27/2018. Tinnitus, low to high pitched. Left eye vision disturbance. Weird Ear pressure my ears feel hot and stretched. Feet are cold and they get numb and nervy throughout the day. My right hand is numb. My mouth tastes metallic. Insomnia on and off.  Severe heart palpitations, I startle very easily. (happen to be seeing a cardiologist today about this) and yes, ANXIETY! I know there are a couple more but, this is enough :).

 

Kim

 

Kim,

 

Sounds very familiar.  I’ve been there a few times.  I have some of those symptoms mostly mental and head stuff.  All the support you can get in the journey is very much needed.  I have kids too.    Somehow this will all get better. My Anxiety is on another level, too.  I hope your Cardiologist can be of help.  Are you able to drive?

 

Theresa

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Theresa,

 

I do drive, and sometimes wonder if I should. I don't expect much from the cardiologist because I don't think my heart is racing for any reason other than the Klonopin withdrawal. I'm just following my GPs orders. She thinks I have an Anxiety Disorder that she will need to medicate. She doesn't believe that withdrawal symptoms can last 6 weeks. She means well and I know she will listen to me once I jump through all these hoops. Also, it's nice to know that my eyes are fine, I don't have lyme disease, my B12 is normal, and hopefully I'll find out my heart is healthy so I won't get so upset when it feels like it will jump right out of my chest.

 

One of the hard parts is not being able to talk to people and not having doctors who understand. I will have to educate my doctor if my symptoms haven't lessened by the time we are investigating everything else. I would feel so much better if a doctor would say to me "This is perfectly normal, good job getting off the Klonopin, hang in there."

 

Thankfully my husband read the Ashton Manual and understands. He agrees with me and that is a big help. I hope you have support at home too!

 

Kim

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Kim,

 

I can’t say that I have support at home.    It is what it is.  You sound like you are doing well for being off 6 weeks. 

 

My ability to drive is rather unpredictable.  Depends on the day and my symptoms.

 

You’ll be fine. 

 

Theresa

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Kim,

 

I can’t say that I have support at home.    It is what it is.  You sound like you are doing well for being off 6 weeks. 

 

My ability to drive is rather unpredictable.  Depends on the day and my symptoms.

 

You’ll be fine. 

 

Theresa

 

Theresa,

 

I'm sorry you don't have the support at home. I know that as time passes and symptoms persist our loved ones lose patience. But, we won't lose patience with each other. I will do my best to be here and support you. One day you will tell us how much better you feel and I will rejoice. Hang in there please. I know it's hard but we have to be strong.

 

Take care,

 

Kim

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Kim,

 

I can’t say that I have support at home.    It is what it is.  You sound like you are doing well for being off 6 weeks. 

 

My ability to drive is rather unpredictable.  Depends on the day and my symptoms.

 

You’ll be fine. 

 

Theresa

 

Theresa,

 

I'm sorry you don't have the support at home. I know that as time passes and symptoms persist our loved ones lose patience. But, we won't lose patience with each other. I will do my best to be here and support you. One day you will tell us how much better you feel and I will rejoice. Hang in there please. I know it's hard but we have to be strong.

 

Take care,

 

Kim

 

Kim,

 

Thank you,  such a sweetheart. 

 

You are right we have to be strong.

 

Take care,

Theresa

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  • 2 weeks later...

I would also second that you should not ignore the impact of having MTHFR gene - and probably the "C" was COMT-  i have both these gene mutations and they play a significant role in benzo WD.    in my success story and follow up success story i talk about the importance of understanding your genetics.  you can't just take any old B-12 when you have MTHFR gene - cyanocobalamin which is what is in almost all cheap vitamins is useless- that is the key to the gene - you can't convert it into anything active.    on the other hand methyl-B12 can be pretty shocking to the system - so - in my posts i recommend hydroxy-adeno B-12 - you can get it on amazon.  there are a whole host of vitamins that are important for this gene to make up for the deficits.  people will say - well - i didnt need anything before this - that's right - it often takes a severe set of circumstances to trigger a dormant defective gene and the horrors of benzo WD are likely to trigger many silent gene issues.

 

COMT is even tougher than MTHFR - it controls the ability to break down adrenaline..... if you can't break it down - it accumulates - leaving you with panic attacks - severe anxiety - restlessness - cardiac issues, etc., 

 

the tough part is the majority of protocols to treat these gene defects involve using GABA acting supplements such as ashwagandha, holy basil, passionflower, etc., which must be avoided.    but there are options out there - start researching how to treat both these gene defects - there is a lot of information out there.  i had to teach myself genetics for the most part - i have a strong science background which made it easier - and also followed doctors such as Amy Yasko who are pioneers in this space

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