On All Occurances Of Spontaneous Human Throat Swelling, Larengeal swellings leading to death.
Definitively in the airway it could conceivably be the body’s auto-response to pain. Thank you to the Late Robin Williams who I do NOT wear a face of disgust for. He killed himself. Via asphyxia.
To seek asphyxia is the opposite THING of what us tough HAE patients would do. That is one way 33% of us are dying.
Pain control is an absolute MUST. Protocol for HAE patients NEEDS TO BE changes as, I believe- pain can cause death.
So give marijuana to HAE patients? Honestly- I could get “baked” on THC up well and still feel 80% of my pain. I have had exotic “cake” hash oil at a guitar party. Opiates are crappy. For a patient with HAE, no pain killer works consistantly without side effects that is dispensed.
The key words are “that is dispensed”
The medicine is already around.
Well since 1998 I have used for nerve pain and in 2011 I started taking a drug and OFTEN for my HAE pain (sets off the register prompt. DM is a “protected” medicine. You must be 18 to buy.
So I take a bit and attack reduction. I don’t want to say what it is, but there are few side effects for little ME.
The amount of DM I take is 1mg/ 1lb of my body weight.
So 250mg. Out of a DM box all the other ingredients in the pills are fluff to me.
13 pills seems like a lot. The number 13 also seems bad. It isn’t. Its 12’s next-door neighbor.
So my HAE + fibromyalgia + bipolar etcetera make for a morbid diagnosis. I believe that GOD HIMSELF has overseen my trialing of DM dextromethorphan as a possible drug for HAE. HAE is a disease that kills, yes, but during a lifetime affects the nervous system in agonizing UNNECESSARY PAIN.
Well some are calling pain their friend. Like my sensei taught in Tae Kwon Do. Yes, I am a martial artist. Strange training. Really strange training from amazing people.
I wanted to be martial since I was 10 when Karate Kid came out.
Another time I’ll talk about it but for now I want to say that as a christian, I have taken Eastern medicine and Miyomoto Musashi the samurai and held pain at bay.
It doesn’t matter who the person is with C1-DEFICIENCY IS but they DO MATTER.
This has been the theme of every HAE Facebook group is that we all matter. I made some T-shirts for that. A bit unique because I was in PAIN when I designed the T-shirts and I made 20 of them, so its a little rough. I was just excited about life. Put myself in $200 with all these shirts that say “everybody matters”.
Its no loss to me. Each empty shirt reminds me I love people and try. I am VERY financially troubled. I do not know why. What did I ever do to me? I did not give myself HAE. I want to make a return!
Seriously, I would like to return and say I am human and I AM HAE and I have IT by the throat. But I cannot say THAT… partly because its a bit insensitive to talk about the violent reaction with HAE.
I believe that the larengyal swell is an auto-asphyxiating proramming in the brain. The brain is not understood. My MD dad put a needle to my eye once, so lets call me qualified for a second- I refuse to be seen as unintelligent. I have in me, like anyone a storehouse for future being called CNS. My brain, my feelings.
The medicine I take- it is
a mystery drug. It increases my standard of living experience of pain and macabre thought all at once. Because it is a serotonin reuptake inhibitor.
I want to share that my wife and I are penniless. We are on foodstamps. I just learned my hero Robin Williams died and that another rare disease guy Lorenzo.. and mom.. and dad.. are all past and away.
I drew strength from Lorenzo’s parents. My parents did not know what I had entirely or how to help me. I have been a self-supported rare disease patient since 1992. That means no family help. Minimal. It is complex.
I hacked HAE alone without meds. I mean… it pretty much was hacking me. I met a woman who I married. And I like that.
Life is hard. I do not know what would be normal because I basicly have cough tablets with my morning noon and evening coffee. That is far from normal. But if it were declared normal, to use DM like the Pakistanis do for HAE as I do, it would feel better.
What do you do when you find a good thing that you have to be very careful with? Well… if it works for you, you have to
be careful in suggesting it. Or not. Especially if you find that one drug that is psycho-active for some and neurological for others. And an OTC. I hate it when that happens!
Shoot, well I guess you have to keep approaching the medical cultist divinators of “data”. Just kidding. Do all doctors secretly wish they could be on the Starship Enterprise? Just kidding. They should!
Who knows what excites a doctor into research?
No, really what gets doctors interested is when they can take pride in a medical endevour. So what I am saying is a message, please research DM for applications. Who? UCLA.
I hope this is useful.
Now is a good place to start.
For my peeps
( to find ease now )
| A | Andrew Harrison 2014
Its a choice, isn’t it?
| A |