For the most part, each person I know and I am sure applies to any and all people, if you have a particular ache, pain, burning sensation, or other annoying body signal for an abnormality, we'd like to be able to reach for a pill (s) either over the counter or prescribed and have that pill bring relief within a certain time period. Most times this is achieved within thirty minutes or so and the lasting effects upwards of two to three hours depending on the medication. Now picture each time you go for that medication it changes its healing ability or reverses the property or purpose it was set out to do. Pretty frustrating right? Well thats the hardest reality to deal with in regards to the Dysautonomia so far that to me exceeds some of the other annoying complications its caused my body.
I dont often get headaches, its not something that happens to me so when one happens its usually brutal and relentless so I want to grab something thats going to cure the issue ASAP. What I couldnt understand, until now. is I would take Tylenol for the headache and within a short time, it was gone. So common sense would dictate, Tylenol works on headaches, mental note. So of course when I get another headache many moons down the road, I reach for the Tylenol and I am ready for the relief. However this time that relief doesnt come. So now I think, is my neck out of alignment? So I do some adjustments to myself, (no I did not just say that Dr Moon) apparently taboo to adjust your own neck. Still this doesnt cure my issue. I head for caffiene, I am addicted to that so if I dont reach my minimum 24 ounce caffiene loaded Diet Dew, its a bad day in FL. So even though I had remembered to drink it, I go for another 24 ounce. Still, the headache is relentless. Hours pass and I head for the Motrin, 30 minutes later, headache gone, mental note, Motrin now works better than Tylenol. Well you can see the vicious cycle starting here. Turns out I never did find the combination that worked. Its random, it could be the Tylenol, Excedrin, Motrin, that crushed up crap in a package that tastes like bad chaulk whichever, whenever, whatever, nothing really worked twice in a row.
This also proves true with all of my other meds. One day I have hypertension, high blood pressure, the next day hypotension, low blood pressure. Now I am on hypertension medication so how could I have hypertension? Well thats easy, I am on amphetamines, they not only raise blood pressure but they also cause excessive heart rate. Or do they? My heart rate is too low and instead of having tachycardia, I have bradycardia. Now that actually can change by whether or not I am standing still or lying down, the whole reason I am sure that they will be testing me to see if I am a POTS (Postural Orthostatic Tachycardia Syndrome) candidate or not. Damned if you do, damned if you dont.
I am on a new medication for the Fibromyalgia symptoms I exhibit and the medication is called Savella. Oddly enough, one of the known side effects of the drug is tremors. Well, my Dysautonomia symptom prior to starting the medication which the sole purpose was to bring relief to my excruciating leg pain, I had hand tremors that I've had for quite some time. This is a manifested Parkinsons symptom that falls under the Dysautonomia as does the Fibromyalgia and Chronic Fatigue Syndrome symptoms. Its a complex combination of mimicing symptoms that cause so many different side diagnosis, its no wonder that people that finally get the full diagnosis are completely worn out from all the run around and near misses. Where I was headed with this was the fact that my hand tremors became controlled on Savella, the exact opposite property that most people experience. I had insomnia prior to taking Savella so it hasnt increased or decreased that effect as of yet so we'll see where that goes.
My amphetamines are working the opposite as well. Instead of making me high strung, alert, full mind activity, with raised blood pressure and heart rate, its actually doing the opposite. There was actually a period of time where I was also falling asleep everywhere I sat down which totally baffled the doctor. Well scratch your head no more doc, you can blame the ANS now for taking the medical properties of all my drugs and shifting them around to do whatever it feels my body wants to do with it. Very odd scenario indeed. Nothing worse then going to the hospital for a procedure that hypes you up so bad that they cant calm you down with the normal limits of the drug used on most patients so they hit you with six times the recommended dosage, still with limited effects. Once the procedure is completed, then the stress level drops and the drugs take on the necessary actions AFTER the procedure is done so I sleep for a day. I experienced most of this type of resistance with Versed, Dilaudid, Morphine and Valuim. I was given 20 mg of Valuim, along with muscle relaxers, Zanaflex 8mg, prior to an epidurel injection that they couldnt sedate me for and the doctor thought I had forgotten to take the medication. As I told him, had he written me for 40 or 80 mg of Valuim I would have taken all of it, I was so hyped up with panic over that injection that I was bouncing off the walls. The odd part, my body internally was not acting to what my external reactions and mind were indicating. As I laid there having my injections, almost having the nurse pummel my ass to the table, she kept trying to talk to me in that soothing voice like all was well. I had to remind her I was the one with the needle sticking out of my body, expletive expletive. The injections only take about a minute after he does the local injection for numbing so its a relatively quick procedure and you are done. The nurse then advised me to remain still and whatever I did, DO NOT GET UP.
Now to me, I felt nothing but total stress, anxiousness, feeling as if I wanted to climb the walls so I was feeling that sprinter feeling, getting signals that my body was in high gear ready to go. SOOO not the case. As I turned my head to look at the telemetry to see how far off the charts I had gotten things I was totally baffled by what I saw. My pulse was no higher than the low 60s and my blood pressure, lol, 86/50 I was borderline passout patient. My body was trying to shut down but forgot to send the email to my mind that was thinking I was still out running a pride of hungry lions. That always stuck in my head as the oddest situation or experience call it what you will. The nurse just called it shock, but now knowing what I know, the shot was so close to the nerve branch that essentially as a protection mechanism, my brain was trying to target a reboot so to speak. The only problem was the adrenaline from my stress of the needles prevented that from being a success so I foiled the plan causing my other bodily functions to stress out. If it couldnt shut my mind down, it was going to stall it out so to speak. The nurse not allowing me to stand up prevented that so again, plan foiled. Last but not least, the overall edge the body had over the Depomydrol was to reverse its healing capabilities. It actually made my pain levels increase and started to effect my sciatica more pronounced and even caused urine retention.
I have taken alot of "experimental" drugs that my Neurologist has tried to use in an effort to refire my brain for recall or at least maintain short term memory function. In doing so I have had some immediate reactions to certain drugs, with in twenty four hours and I have even had symptoms that were not something the doctor was aware of which always lead to the same answers, you werent on the drug long enough for that to have happened or it wasnt that drug that caused that issue. Well, sorry doc, I might not have gotten an MD added to my name but I can go on the internet and read. I can also research and make intelligent confirmation of your statements to prove that you just didnt want to go that extra mile to listen. Thats the ultimate insult for me, when I say to a doctor that this is happening, and they say "its impossible, that drug cant cause that", I really dont know what keeps me from ramming their stethoscopes clear up to their Diverticulum via their Rectum.
So the next time you reach for that cough medicine, cold medicine, headache reliever, arthritus reliever or one of your prescribed meds and you had the reverse effects of that drug happen to you, ask yourself how many other odd medical issues or unexplained medical failures have you had that might lead you to the wonderful world of ANS. Its completely changed everything about how I do everything in my life now and how I handle new medications, new procedures and upcoming repeat procedures. Even the anesthesia becomes an issue for me now. Before it was a necessary function of any procedure that required twilight or a full sleep mode, now I have to fully discuss everything with all doctors present to make sure I am going to wake up again. They could essentially put me to sleep for good without the proper information up front. Before I was lucky as were they, now I am informed so they need to be prepared as well.
In closing its safe to say that many complications will arise with any disease/syndrome etc... Its how you overcome the obsticle that sets you apart from everyone else. I have a positive attitude, I realize the severity of my syndrome, and I even joke around about the fact it could kill me any day, any time it truly wants. Taking it way too serious just causes more stress and its a syndrome that feeds completely off stress. So what do I do? The opposite that the syndrome wants me too. Thats right Dysautonomia, screw around with my medications and my involuntary body functions and I screw around with your ability to be taken seriously. Touche my friend, touche. Thank you for reading.
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