Miscellaneous ramblings of NarcKiddo

[dollyvee]

Hey NK,

I'm happy you have found the potential root of your lung issue and sorry that the solutions are less than ideal.

If it's any use, I'm on monteleukast at the moment, a mast cell inhibitor, that also comes with a black box warning. I didn't have any effects for about a year, and then noticed when I came off of it for a few days, I had some severe irritability that was difficult to suppress. So, could be good, bad, or good for a while. I need to go back to the FMP and see what is causing the still elevated mast cell issue and if anything can be done about it.

Sending you support,
dolly

[NarcKiddo]

If it's any use, I'm on monteleukast at the moment, a mast cell inhibitor, that also comes with a black box warning.

That is the drug we are considering. Thanks, Dolly.

[sanmagic7]

NK, while i'mn glad the docs have found the reason for your problems, i'm sick in my heart at what they found, and especially since the effects of the possible meds can be so dire.  i just hope they work for you and you feel better, more yourself.  fingers crossed and prayers flyin'!

i know some people have a note in their medical charts that mentions 'medical trauma', and i don't know that there's any particulars attached to that, but several have noted that it makes a difference.  so, maybe that's an option.

in the meantime, i hope it turns out for the best for you.  love and hugs, my dear

[HannahOne]

NarcKiddo, I was so bummed to read that the medication that could possibly help has mental health effects. That's such a difficult decision, weighing risks and benefits. I'm glad you could have an open conversation with your T about it. The concern about sharing about CPTSD with the medics is valid, and the concern that they need to know is also valid.

FWIW the med I'm on can cause mental health side effects and personally I err on the side of not sharing with doctors, since I am under care of a T who is alert for signs of trouble. Not saying that's the best thing to do, it's just what I have done so far. I do have a note in my chart that says I have medical trauma, so they know at least that some things can go wonky, without sharing my mental health diagnosis. The vast majority of my trauma is not medical at all LOL... but it's a flag for them. Maybe there's another way, like what Hope67 suggested, of alerting them without sharing something you don't feel comfortable to share.
 

You will find your way through this.

[NarcKiddo]

In the end I just put on my 'big girl pants' and emailed the consultant to say I have mental health concerns, to tell him I am prepared to trial the drug but not right now due to upcoming stressors, and to ask for his advice. I got a somewhat unhelpful reply via his secretary simply saying it's OK not to take it. However in my upcoming appointment with the professor I can ask more about the medical pros and cons of this drug and can then make a more informed choice of whether it is worth the risk.

The lung consultant has now written the referral letter to the professor. It has given me the opportunity to write to the professor pointing out my view of how I want to proceed with this. The consultant was mentioning all sorts of possible diagnostics that seem pointless given we cannot do anything about what they might reveal. He has also misunderstood my exercise history and needs (which I suspected and is no surprise as he is not an exercise man and I am unusually rigorous in my approach) so I have had the opportunity to put that right for the professor in advance of our appointment. I very much do not want the professor starting to plan routes I am not keen on before I have spoken to him. That's not to say I would dismiss anything, but if people start off down paths they tend to get quite attached to them. I want the appointment to be productive and for me not to have to spend half of it correcting misunderstandings. Every dealing I have had with this professor thus far has felt positive and I think I can get what I need from him.

The lung consultant is a lovely man and we have a good rapport. I think he is doing his best to help me and having seen his letter to the professor I get the feeling that the consultant is hoping he does not have to be the one to tell me to my face there is nothing much to be done. However, 'nothing much' is not the same as 'nothing'. I am making peace with the likelihood that I will not get particularly good results from any of this, but for me the most important thing is knowing what my boundaries are. My coach and I are quite creative and I am hoping to find something I can do that will feel reasonably satisfying. Right now it all feels more like an obligation and I am only grateful that I have enough exercise history behind me to have an ingrained habit and an understanding of the benefits even if it does not feel good at the time.

[HannahOne]

"the most important thing is knowing where my boundaries are." That resonates for me. Knowing where you stand allows you to more clearly communicate what you're willing and not willing to try.

It sounds like you're finding collaborative ways to work with the medical professionals, aware of the limits of their abilities, and with the best in mind for you. 

[dollyvee]

That is the drug we are considering. Thanks, Dolly.

Hmmm...interesting. For me, I started drinking wine again before this reaction and perhaps the potential increase in histamine affected the drugs functioning because I had lapsed prescriptions for a couple of days in the past with no noticable side effects.

I think Hannah was also onto something with mitochondrial dysfunction and the potential for oxadative stress in the cells. Some people have really helped their MCAS with antioxidant support. Another thing might be hidden anemia, which can happen even if the lab results look normal.

I hope you find a way forward with this.

Sending you support,
dolly