MAST CELL ACTIVATION SYNDROME

Does anyone have experience with klonopin causing Mast Cell Activation Syndrome.  Thoughts and insights are very much appreciated. 

Does anyone have experience with klonopin causing Mast Cell Activation Syndrome.  Thoughts and insights are very much appreciated. 

Does anyone have experience with klonopin causing Mast Cell Activation Syndrome, and if so what can be done about it?  Thoughts and insights are very much appreciated. 

This is generally considered to be one of many rare diseases from my understanding.

 

I have one myself; it’s called idiopathic subglottic stenosis. There is a study of mine being conducted right now by all the major research universities in the US, Europe, and New Zealand.

 

GARD (genetic and rare diseases) is part of the US dept of health and human services, and the funding for research on these problems comes from the NIH (national institutes of health).

 

GARD’s phone number is 1-888-205-2311. The website is rarediseases.info.gov.

 

It’s very possible that they can give the information you’re looking for.

Benzo's are actually mast cell stabilizers.  Go figure.

 

I don't know if I have this condition or not however I'm a member of one the the FB groups.

One of the top docs who knows what little there is to know of this horrid condition actually prescribes benzos for this. 

Indeed, benzodiazepines are usually helpful in MCAS. I have MCAS and it got worse now that i'm off benzo's.

OH Nick

I'm so sorry to hear this. 

What do you do for it? 

Low histamine diet

Fexofenadine

Ceterizine

Ketotifen

zantac

Boswellia serrata as leukotriene inhibitor

Low histamine diet helps along with Quercetin

to stop over activation of mast cells I found.

 

Helps me as I adjust to being of benzos

 

some info here for others maybe from this site to read. 

 

https://www.judytsafrirmd.com/histamine-intolerance-another-great-pretender/

 

Prominent psychiatric symptoms can be the presenting complaint of a patient suffering from Histamine Intolerance,

with anxiety, panic and insomnia.

Unfortunately food sensitivities are still not part of the vocabulary of most psychiatrists.

It is still the very unusual psychiatrist who asks a patient about diet,

when trying to make sense of the current symptoms and history.

The most common treatment modality offered by psychiatrists to the anxious patient who is not sleeping is medications.

 

It is interesting to note that some anti-depressants and anti-psychotics have prominent anti-histaminic side effects,

such as blurring of vision, dry mouth, sedation, headache, dizziness, increased appetite and weight gain, to name a few.

 

When a patient tries to discontinue the drug, symptoms of histamine intolerance can manifest,

such as profound insomnia and anxiety,

and it can be difficult to come off the medications.

Monica in her blog Beyond Meds writes in detail about her experience of the terrible aftermath

of psychiatric polypharmacy in a valuable post entitled Multiple Drug Sensitivities.

 

 

http://alisonvickery.com.au/histamine-nervous-system/

 

Just another piece in the withdrawal puzzle that might help someone...

 

 

Low histamine diet

Fexofenadine

Ceterizine

Ketotifen

zantac

Boswellia serrata as leukotriene inhibitor

 

Did your tests come back normal?  I read where so many do but yet they still have it.  What kind of doctor dx you?

 

How are you feeling?

Low histamine diet helps along with Quercetin

to stop over activation of mast cells I found.

 

Helps me as I adjust to being of benzos

 

some info here for others maybe from this site to read. 

 

https://www.judytsafrirmd.com/histamine-intolerance-another-great-pretender/

 

Prominent psychiatric symptoms can be the presenting complaint of a patient suffering from Histamine Intolerance,

with anxiety, panic and insomnia.

Unfortunately food sensitivities are still not part of the vocabulary of most psychiatrists.

It is still the very unusual psychiatrist who asks a patient about diet,

when trying to make sense of the current symptoms and history.

The most common treatment modality offered by psychiatrists to the anxious patient who is not sleeping is medications.

 

It is interesting to note that some anti-depressants and anti-psychotics have prominent anti-histaminic side effects,

such as blurring of vision, dry mouth, sedation, headache, dizziness, increased appetite and weight gain, to name a few.

 

When a patient tries to discontinue the drug, symptoms of histamine intolerance can manifest,

such as profound insomnia and anxiety,

and it can be difficult to come off the medications.

Monica in her blog Beyond Meds writes in detail about her experience of the terrible aftermath

of psychiatric polypharmacy in a valuable post entitled Multiple Drug Sensitivities.

 

 

http://alisonvickery.com.au/histamine-nervous-system/

 

Just another piece in the withdrawal puzzle that might help someone...

 

 

thank you!

Low histamine diet

Fexofenadine

Ceterizine

Ketotifen

zantac

Boswellia serrata as leukotriene inhibitor

 

Did your tests come back normal?  I read where so many do but yet they still have it.  What kind of doctor dx you?

 

How are you feeling?

 

Yes, tryptase and spinal fluid test tested negative for mastocytosis but that's usually the case with MCAS.

I will be tested again soon.

 

An allergist diagnosed me.

Nick,

how did the allergist dx you with those tests coming back negative?  How are you feeling?

Clinical diagnosis and empiric treatment with h1 + h2 inhibitors and a mast cell stabilizer.

The meds help with some of the symptoms but also cause complications like extra dryness and an increase in asthma. It's all very complicated but the docs pretty much agree i have multiple underlying autoimmune conditions. IVIG would be the best treatment for now, but unfortunately that will not be given to me because MCAS is pretty much unrecognized in my country.

I'd have to travel to the US or China for treatment but it's a very expensive medication that requires ongoing dosing, so yeah that's pretty much out of the question at the moment.

WOW.  Heartily sorry you or anyone is going through this.  I have the symptoms as well and hopefully will be put on something to see if it helps.  I'm sure I will react as I react to everything. 

Such a horrible thing.

WOW.  Heartily sorry you or anyone is going through this.  I have the symptoms as well and hopefully will be put on something to see if it helps.  I'm sure I will react as I react to everything. 

Such a horrible thing.

 

Ceterizine and zantac are OTC drugs so maybe you could give that a try?