Wednesday, August 31, 2016

What will come...

One of the things that I would never have guessed about living with chronic illness is that medications you depend on can be discontinued.  I have experienced this three times now.  SIGH.

Tomorrow, I will be starting a new brand of hormones.  Given that I have had negative results with previous changes, I am rather worried about that change.  I mean, when the hormones are not doing their job balancing me ... and I slip back into that insensible darkness ... I am not aware of what is happening.  That is particularly frightening for me.

If I had known that I would no longer be able to get the medication I was taking, I would not have embarked on trying to change the brand of theanine.  My plan was to take the cheaper version for two weeks and then switch back to the Thorne Research for two weeks to see what I notice.  Again, though, with that, I might not be able to fully recognize the effectiveness of a drug change.  SIGH.

Certainly there are drugs that are available for years.  But where the marketplace affects the bottom line, manufacturers can cease production for financial reasons, not patient reactions.  The first hormone I was one was Loestrin.  That was pulled after it went generic.  Larin is one of those generics. I have been unable to discover why it was pulled.

The thing about medications that some folk (even doctors) do not understand is that the inactive ingredients can affect the body as well.  That is why, for example, Larin worked well for me, but Junel did not.  The same with Minestrin, the brand replacement for Loestrin (the formula was changed to dissolvable).

On the dysautonomia forums, one of the most frequent posts is the category of medications.  Basically, the one posting has either been prescribed a medication and wants to know about side effects or is in search of a medication to help a certain symptom.  The problem with this is that medications will affect folk differently.  Take ibuprofen.  That makes my mother's stomach terribly upset, but I have no problems with it at all.

The other problem is that much of the treatment of dysauotomia, like many chronic illnesses, is done through off-lable drug use.  That is to say, medications are prescribed specifically for their side effects rather than for the intended purpose of the drug.  Take theophylline.  That is an old school asthma drug.  I took it because it artificially raises heart rate, especially in high doses.  I was taking it to treat the bradycardia.  Now, I have a pacemaker.

Then there is the issue of interactions.  When you are taking so many medications and supplements, all those drugs have to play nice with each other.  Take Topamax.  It had a conflict with theophylline so severe that I ended up in the hospital with tachycardia.  The neurologist who prescribed it had a list of my medications and knew I was taking theophylline and prescribed it anyway.  Theophylline, being old school, was not well-known.

It might seem so logical, to consider interactions, but it is easier to count on others to catch them rather than to constantly check how well what you are taking plays with others.  It is also common sense to consider that how you are affected by a drug will differ from others because you are different, but it is easier to focus on common benefits.  To cling to the stories of help posted by others taking the same medication.

The thing about dysautonomia is that, although there are common symptoms, not everyone will have those symptoms.  In truth, the commonality is that they have to do with autonomic function in your body.  But what side effect I desire might be very different from the side effect another with dysautonomia needs, even another with NCS.  It can be rather maddening.

Maybe a carousal is not the best metaphor.  Back when I went to Six Flags as a child, there was this ride that had individual pieces that spun in a circle even as the entire base of the ride tilted and spun.  So, you were spinning in two different ways and going up and down, as well.  Sickening madness.

What will come of this change?
Will I be aware?
Will I stay safe?

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