friend who is serveral sick.... PLEASE READ AND HELP

hey everyone i have a friend who is 3 plus years off of her benzo rapid taper..... she is really sick and her mom reached out to me and asked if i could post.......  she is on a low histamine diet 

 

Kristin asked me to reach out to see if you can ask a question on Benzo Buddies for her.

 

She has been experiencing flushing, air hunger, heart racing, and severe boatiness while trying to eat food - even low histamine foods.  She is having a lot of difficulty eating and it has become quite distressing.  She is afraid of an allergic reaction since she believes this is MCAS. 

 

Could you ask if there are others that experience this.....

if so would love to hear from other and open to all input...

Hi I  am no expert nor do I have this myself to this extent. But I will share all I know.

Yes MCAS is a possibility. There are the symptoms. Unfortunately there are other things that can cause these symptoms.

 

A comprehensive stool analysis won't hurt and my give some insight. But may not be feasible or worth the trouble at the moment.

 

I have heard this being helpful to some: mastcell360.com

 

It could be food sensitivity without MCAS.

 

I have been told by another that leaky gut can be a problem because food particles diffuse through the epithel cells in youre stomach and that triggers a immune response. Sometimes rotating food might help? I don't know much about it.

 

I am sure she is avoiding sugar or sugar substitutes as that can mess you up.

 

If she is having bloating that leads me to think there is an issue with gut bacteria. Which is why a complete stool test may help.

 

Is there anything that she can get down. That would give us insight if some foods were easier. Are all foods the same? How is she doing with water? Does it feel like it burns as it goes down her throat? When does she feel it? immediately or 5 minutes later?

 

I am guessing she has tried no sugar, no carb, no MSG, no dairy along with no histamine. Foods like that are hard to find. But how are veggies?

she has tried everything above you listed except stool test... she on a low histamine  no gluten no dairy no process foods    she has a big problem with swallowing  and get  sxs  immediately when eatting  they last for hours after a meal... as well    her breakfast is a smoothie..... lunch she has a salad with no dressing she uses all natural stuff and dinner is a sweet potato  and fresh meat .....

I agree her biggest problem is the immediate reaction. As it look like she can currently get past the swallowing.

 

I have had many of those symptoms aside from the swallowing. But i am sure you know that is a common symptom too. I would eat and wait hours for the pain to go and then it would be time to eat again. I am lucky right now. My body is giving me a break.

 

I am familiar with the symptoms. She seems to be taking all the steps I did.

 

Here is what found.

Eating/swallowing stimulates the vagus nerve which can make reactions worse. Digestion may make your CNS go into overdrive.

 

How long has this been gong on?

she had a set back right after new years from a probiotic

I developed mine in a setback as well. Adverse reaction to remeron. It took me 3-4 months for things to start to settle down. I was force fed, tears and all.

 

If she took the probiotics without a slow build up that could have been a shock to her gut. Quick changes are never good for us. Probiotics can cause quick changes in the gut and cause a die off of other bacteria quickly.

 

Everything else is just speculation.

 

But what it comes down to is to wait for for her nervous system to calm down.

 

It maybe her nervous system is over reacting to the digestive process.

 

If she is able to get her needed calories in one go I would recommend fasting. I was not able to do this myself. So I ate less. I lost much much needed weight and have not got it back yet.

 

Unfortunately this means that we have to push through until the CNS calms down.

 

I know this is painful. I would lay in bed for hours after eating. I am still food scared.

 

That is the best advice I have. I wish I could give you more.

 

Hi Jumpman! When I read your posts I'm wondering; you are still having problems, how are you doing? You have been a member since 2017, and I don't understand your signature. How low is your dose now, or have you jumped? What month? Then it's more easy to understand and discuss your symptoms. 

 

And I hope your friend is feeling better soon, you are a very good friend! 

 

 

 

 

translator 200    my signature    is easy to follow i up doesed  to 1.625mg  and i have stayed there i still have not tapered yet  .....  my signature would show if i  started my tapered  which i have not yet  i will update it though  i am doing ok  thank you for asking....

translator 200    my signature    is easy to follow i up doesed  to 1.625mg  and i have stayed there i still have not tapered yet  .....  my signature would show if i  started my tapered  which i have not yet  i will update it though  i am doing ok  thank you for asking....

 

 

Sorry. You have changed your signature, and now I understand. You have not tapered yet. English is not my native

 

language, so I thought Jumpman means you've jumped. I know, I'm an    And you had questions about cutting and a

 

scale. So I was a little confused.

 

 

But I'm glad you are doing ok. 

 

 

 

thnaks translator    how are you doing ?