View Full Version : complicated diagnoses and med issues


kaliska
04-16-17, 08:36 AM
I have been talking on a fb group but messages are short and the people tend to have too many attention problems within the limited media to truly discuss complex issues. So I know this will be long, a lot to keep track of, and I'm not sure what all I started to cover in my intro before I kind of wandered off from the forum. NOTE and excuse the use of generally unacceptable caps but for all those reasons I understand exist to make these long posts difficult I marked the paragraphs of more specific groups of questions that are near the bottom. Go now if you want while I can't avoid tacking explanations of myself on to this opening paragraph. I simply tried to organize rather than the whole thing being too much. I am falling apart again and needed to type most of it in one location instead of scattered fb posts that many didn't follow even if some gets ignored completely.

Also, I do not know the acceptability of level of discussion and medical advice on here but I know they are not trained medical opinions and personal experience only. I know I should try to seek trained medical help as soon as possible but due to limitations I am looking for first hand experiences across the internet along with other research. Skip forward if you don't want some random personal background stuff.

I am 32 years old now and not officially diagnosed with ADHD but attentive ADD makes the most sense of anything ever. I have been looking for a real match since I was a teenager and hanging out with groups online to find similarities but never something that solidly made sense for my personal problems in life. I keep getting autism diagnoses and while maybe a level can exist in me along with other things I can also explain a lot of the details that cause that assumption or result in testing as other things.

I have built a complex layer of problems starting as a little child. I always was slow to sleep but would sleep past everyone else which has turned into complex sleep issues, had social problems going from preschool to kindergarten, and started having school problems showing up in 3rd grade as not doing and actually fully forgetting even alternative assignments meant to try to get me more interested despite reminders. I remember moments where my mom's reaction (not so much verbal) of me not getting to things or how oddly I answered things left a weird, concerning impression from her I knew meant something even when very young.

I always viewed things a little different and was always only motivated to explore and learn about the world which showed as a narrow interest in animals taken as an autism symptom but really my interests were quite broad across science and have expanded while ecosystems and new species research remains a favorite to waste time on. I don't make eye contact. I am not entirely sure why but I know it's like the ultimate red flag people get hung up on for autism and I think the meaning is misinterpreted yet again. I had some reasons at various times but they all seemed to appear secondary after I was already failing to do it. It goes back so far it probably can't be solved but it is by no means something I can't do as a now more confident adult. If I am really lost what someone is thinking, I want to get across something really important, or I feel a need to meet a threat I make steady eye contact fine and I've made increasing short amounts of eye contact naturally over time as I've had more positive interactions in my life but social interactions remain limited after my past. It could simply be that I think so internally and visual stimulation is the most distracting to the point, often when allowed to, much of my own thought has always been done with my eyes closed and whenever I want to concentrate or really experience something I tend to close my eyes or desire to when trying to explain a complex problem.

I also, while I hate everyone getting so stuck trying to treat anxiety only, have to admit anxiety issues that were centered around social skills but it was such a crippling worry of criticism that my brain would refuse to respond. It kind of decided the safest course of action is shut down and wait the person out which looks autistc even when I am fully processing it. My sister shared the feelings so maybe a little genetic with a bunch of environmental that wasn't just me but she reacted by trying to perfectly meet all demands instead. It expanded to cause difficulty writing papers, completing especially english classes with some enjoyed but limited art expression because I didn't want anyone to judge anything I did that wasn't logical facts like science and math, and I would freeze when uncertain what answer someone was looking for even if it was a simple question. I like to learn people, their views, triggers, and reactions before planning my answers but often am not given the time. Again it's throwing off test results to look like autistic failure to process and respond instead of the answer is in my head and my brain doesn't want to risk saying it in this situation due to lack of experience. Standardized academic testing and neutral assessment which did not trigger these responses always showed the highest percentile of knowledge, understanding, reading comprehension.... despite missed school, finding ways to pretend to be paying attention but never hearing a word being said in class while I basically self taught until I lost the motivation, and failing to do assignments even if I got near perfect on tests.

With increased demands, a rather "aggressive" and abusive class manifesting as teenagers, the loss of my grandma who was really the only person in touch with emotions in my family and supportive in any capacity, and the addition of my critical, insecure stepdad to the point of being called verbally abusive by one psychiatrist I think it expanded into a form of ptsd starting to be recognized by some psychiatrists but I can't get it across well enough to any I've sought treatment. Life kind of lost anything truly good and any purpose at 12, I quit sleeping, and I so hated having to go to school all day. I wanted ANYTHING but school and I spent all day wanting a break from the assaults. I threw so much self control on there and buried it all so much to not get in trouble as a child even though it sometimes backfired I was eventually, as a teenager, kind of walking around blank and I think it's created a psychiatric mess making the original issue impossible to diagnose. My relief was night living on a farm away from people with darkness and everyone living there sleeping so I would get energetic and often go run the fields with the dogs when I felt like getting ready to sleep. Whether this was a result of existing improper response to sleep or something I created it has been a huge issue leading to massive amounts of mind numbing medications to counter.

I know what's in my head though even if no one listens to me and I long ago gave up telling anyone my thoughts or trying to explain myself. It always got written off or I've been flat out told I am feeling something other than I say I am and don't understand my emotions.

I separated this paragraph here because new meds really showed me some of what goes on in my head as a new level. I have responded practically backward to every med. I have been treated with sedatives forever, absolutely cannot handle anything that increases serotonin-it either shuts me down or gives me horrid anxiety, and I can't tell you the last time before the past few weeks my brain wasn't being drugged with massive doses of central nervous system depressants to try to be quiet and sleep. Well I got given lithium which is like everything you should not do to my brain now that I have the capacity to research things again and increases serotonin in 3 ways. I was so shut down I felt nothing which did lead to no negative feelings, no mess of thoughts, and sleep but while the appearance was good it was not in a healthy way. The world wasn't just dull anymore. It was blacked out of existence. What bit of things got me close to feeling what I now know is actual happiness was gone. The tiniest dose wiped me out so my psychiatrist did what he said he never would and gave me something to try to regulate sleep cycle by encouraging wakefulness during the day. Not an exact stimulant but the similar "wakefulness agent" provigil. It cut through the lithium seeing as it does somewhat the opposite to neurotransmitters and similar to adhd stimulants but it was far too weak and left me in between again so I did not keep taking it.

I quit the lithium and after the emotional explosion and crash I found myself for the first time in an improved enough life having separated myself from everyone negative and critical and living in my own house with my husband that I had practically no anxiety or depression and being off most of the sedatives while using lithium for a month just a basic benzo got me fully rested in a couple days. The same as used to happen when night came instead of sleep my energy went off the charts and my mind just kept dragging up the smell of the night air in the country that doesn't exist here. I wanted to run when with med side effects, particularly weight gain over all these years, I probably can't do much at all from the miles I used to jog engaging my mind in the outdoors.

A few detail unimportant tests with otc stimulating items like caffeine at those energy moments caused me to take that chance I finally had with provigil to test a theory that always bothered me. I took a quarter of a standard 200mg pill during the day. The first thing I did was say to the fb group "my brain is quiet". It was like someone took away the background noise and turned down the volume on the world. At first I worried because my brain is only ever that quiet when it's reached the point it's crashing but nothing negative happened and then I worried it was like lithium. I tested emotions and I found I was depressed a young snake had escaped and is probably lost forever but rather than adding to an already existing vague deep sinking pain of misery it was a clear emotion with it's individual cause, I felt more positive emotions than ever before when I looked at my existing reptile setups and my dogs, and so on.... I tested concentration and problem solving to find it was fine. It expanded from there. I started out just enjoying it and might have raised the dose too fast plus caffeine to kind of fry my system but a day of only relaxing and suddenly things were so different. I could see how to solve the mess in my house that I had mostly given up on for depression, I could see how to get to the hobby tasks that motivate me but had too many barriers, and I saw my relationship with my husband differently. I have been feeling like I lived with a roommate that shared a bed and I can't remember not feeling alone even around people.

Just as I found how to motivate to do things with 1 small task getting completed and better attention to basic care of my animals, I got sick. I also felt so different to my husband and while sex did not increase I felt not alone even when he is gone or sleeping for the first time ever. I tried to start more personal conversations and I called him out when he reacted to me in ways that were unnecessary and damaged my mental health. I saw things a bit more from his and others' point of view of my needs. To me they are just things I know I need that may be beyond what others need to get through life but I just accepted it as me. Now I can see life shouldn't be that way even if it doesn't change how it is. I shouldn't have to ask some things of my husband and I guess just showing I understood that and could communicate that the extra need was uncontrollably still there he seemed to be less frustrated, more understanding and we were getting closer. I guess I knew but didn't realize the level and reason for misunderstanding many of my necessary actions as something negative like selfishness.

My thoughts are also linear as the best explanation. I am not taking pieces and impressions and turning them into a solid thought/concept that could be expressed in a normal language. It just flowed evenly from point to point. When I switched thoughts while randomly thinking as a passenger in the car I realized I expected to be slammed with all the info I had ever gained and experienced about the new thought topic and have to sort through to continue but I got nothing. Yet, the new topic could be cleanly followed to cover much the same points in a calmer way.

I kind of think of it now as I have been running my system with no control panel and I built a crude replacement that fails a lot and leads to crying a lot with crashes in my life requiring picking things back up and repairing the damage to the system and my surroundings. Suddenly I didn't need my messed up system. I had a working control system. Ugh that illness though. I thought at first my meds were failing. I was thrown into depression as I was so crushed at losing all the things I had found. I was devastated and crying with a bottle of nuvigil held in my hand. I managed to get the upgrade from provigil from my psychiatrist but he was not listening last appointment so he knows none of this except provigil made me happier and I was still sleeping so he blew me off and gave me nuvigil. It's a bit out of character for him so I plan to explore it but it has left me dealing with a new class of meds and kind of remaking my central nervous system alone. My husband argued through my crying for the safety of an increased dose and common use prescribed beyond original FDA standard but I cried for a long time with that bottle of pills about a line I made for safety since I do not have a medical degree despite my research often teaching my doctors and tweaking my own meds alot. I will change things on my own but I work within the guidelines set. It feels like crossing that line and making a med decision that should not be mine with no medical degree is also a break in trust with my doctors despite never stating that limit on myself to them. I eventually took an extra piece of provigil as a minimum option and the loneliness, fogginess, and stress was gone for clear thinking logic and sleep without crying. I remained depressed the meds might fail but in the middle of it my husband made the remote into the bed while laying out the sheets and blankets and after pointing it out to him in an amusing way I laughed. It went somewhere deeper good emotions have never gone while connecting to my husband more than far more complex interaction ever has. That was new and a little extreme for my normal dull world.

That is what started. That is a long explanation of my life of misery and few weeks of seeing a world that has good things and maybe a future instead of feeling like I am on borrowed time that some day will end when I run out of meds in the sedative classes that force things quiet enough to deal with life and sleep. When those fail it would basically mean life over because I couldn't function to get any enjoyment and so I have lived waiting for that and trying to put it off within the treatment plan my doctors thought I should follow despite knowing it wasn't a correct long term option, and may have been doing permanent damage to my brain, but now I had this. My intelligence was coming back, my head was clear, my nerves and thoughts were calm, a bit of philosophy actual entered my mind when I always found it overly tedious before, and all I can sum it up as is the world was painted a different color. It's been steadily crashing. My husband was sick for 2 days so it seemed rather than med failure it was an illness which was temporarily encouraging as only a blip in my new future but it has been complication after complication and I have no one to ask opinion of what to do that understands the meds.

IMPORTANT HEALTH INFO POSSIBLY HERE:
Complication to chasing adhd treatment is my sensitive heart rate which was bouncing up to 140bpm with exercise when I started provigil and a little wellbutrin but stabilized a bit and even got to the 70s resting at one point when I haven't seen it below 100bpm since I was a teenager. My heart was checked for structural problems because it was staying high but that was several years ago. I had weird feelings in my chest I had assumed was tachycardia but a pulse oxy meter said my pulse was fine so what was it? This cough would not go away. I kept sleeping and sleeping and sleeping which I finally accepted I was sick, needed to delay my plans, and I can figure it out later. Although now I'm a bit better and not really sleeping which is bad for tachycardia too. I kind of lack a reason to go to sleep and night still does not feel like sleep time. Early morning does so I do something like this all night (it's almost 5 30am). then turn all the lights on for the animals, check they are fine for awhile, take 100mg provigil, drink a mountain dew, and go to sleep for the morning hours. That I can accept as I can work around a sleep schedule that keeps me rested even if odd and maybe improve it when illness does not restrict me from outdoor activity. Still somewhat encouraging it will work out but simple is never my life.

The complications continued to the point I don't know if I should take anything. I thought it was a variety of things I tried taking to reduce my seeming cold without impacting things that would confuse the med effects but it failed. Basic flonase to reduce nasal drainage irritation caused a horrible coughing fit, I thought ibuprofen for reducing throat swelling instead of cold meds was triggering asthma but it seems clearer now it's stomach problems. I guess all that crap above where I had side effects comes down to stomach problems probably. I think it explains my chest pressure when not having a high heart rate, it might be making the cough linger, swelling my throat and even a rapid event I thought would lead to the ER but I think I can explain it as the stomach acid problem got into my vocal cords which apparently can cause a distressing but non medical emergency of more rapid throat swelling with possibly purposely closing off the airway some for temporary protection but it resolves so fast it doesn't actually risk health and with sitting up, taking an antihistamine, and for some reason I found applying the heat to my throat and upper chest instead of directly drinking the hot liquid helps the swelling incidents more. My stomach horribly cramps with food though, is constantly feeling hungry, I think I am constantly having stomach acid issues causing all the confusing symptoms. I have changed my eating style to more low impact/bland, small, frequent meals and took pepcid for stomach acid. I see now some generally more long term meds for acid reflex is contraindicted due to provigil and nuvigil increasing how much stays in the blood so good I chose the slightly faster but not totally acid killing pepcid. I have tums too but I know excessively low stomach acid will only interfere with digestion. I quit NSAIDS, no coffee but some mountain dew, I have a dopamine supplement I quit taking, and I've reduced provigil and nuvigil down to the point I am barely medicated at all with a headache, some fog which is making this ramble, and feeling alone and dull again.

I'm not sure the safety of continuing, I'm not sure I can survive without some of the meds, and I can't talk to my psychiatrist for a couple more weeks. Even then what do I try if not provigil and nuvigil with my tachycardia and preferring to impact dopamine rather than just norepinephrine? Risk a stimulant and see what my heart does? It might need checked again since even on a lot of stimulants causing a feeling of a ton of energy my heart rate is still a stable 90bpm or lower if I remain mostly still but yet it spikes with any exercise. Although, it's stopping at 120bpm which it did frequently before and I was told it was acceptable instead of the 140bpm I originally got. Except for the evening after that throat swelling incident but you try not to panic even when you've got a thing on your finger saying your blood oxygen is fine. The company directions say to stop the meds and contact your doctor with stomach pain but no reason is given or found online. If it's just acid from changes in digestion and I've had past acid and respiratory problems with post nasal drip and throat irritation including having an upper endoscopy that repaired a stricture from the acid irritation but symptoms reduced and I haven't kept up on treating for stomach acid problems.

IMMEDIATE QUESTIONS HERE:


Have you taken these meds (provigil and nuvigil) or even on similar meds like actual stimulants and had stomach problems?
Were they something to continue to try to solve with what is an otherwise life changing treatment or is there a health reason it's important to stop without a doctor checkup?


If my pulse comes back down, resting pulse is low, spikes remain within reason, I have no actual pain or palpitations, and my heart was checked for structural problems in the past is it fine to carefully continue a level of medication to get to an appointment? Is the cough lingering cold (if previous info missed my husband was also sick so there was an illness here) or provigil also warns of increasing odds of chest infections and coughs?

Keep in mind I'm quite sure I've actually been sick with a normal cold this whole time and now my sleep has been spotty which increases bad symptoms and I'm continuing to come off a few sedatives like a benzo and I have gabapentin left. I could cut the pills and dose smaller amounts at a time to keep a level with less odds of problems while trying to manage stomach acid and meals? I confirmed cutting is fine. Nuvigil causes less symptoms and longer effect but slightly over 1 pill is the approved standard dose and 1 pill is the prescribed dose to me so more than that is that line I do not want to cross because again I know I don't have a medical degree. I have no knowledgeable medical resources at hand to consult. I repeat that I know people are not doctors but I'm looking for reports of similar symptoms and their possible seriousness or manageability.

MED CHANGE QUESTION:


If I survive to an appointment with my heart rate having a low resting pulse and not entirely abnormal for me (at least not new and not checked out already) but possibly slightly exercising restricting spikes should I ask to try an actual stimulant and maybe get rid of the questionable stomach side effects leading to questionable complications and questionable lingering cough while possibly improving my thinking and mood even more?


I can get reduced cost vyvanse for awhile which seems to have the least chance of side effects I tend to have to test before deciding about a cheaper generic stimulant or maybe trying to find the money required out of pocket since vyvanse is put under a "specialty" med by insurance and they require a high set copay for all specialty meds before covering the rest.

Wow this has got to be long. I don't know if anyone will get there and maybe I'll regret it later but I'm mostly unmedicated, unorganized, stimulated by "night" time (sun is coming up) and I'm just trying to cover it all somewhere.

I will add more notes to the top and try to make it easier to skip to parts for more basic med opinions. I'm out of steam even if there's something missing still, my head hurts, and there can't be an amount worth noting of any med left in my system. I know I need to force some food since I last ate soup before sleeping for awhile around midnight so I'm just going to go start there and as I start to feel like breaking into crying from trying to put control and logic back on things without assistance I will debate cutting a piece of nuvigil or provigil to at least level out.

aur462
04-17-17, 02:22 AM
Hey there. You're post is in desperate need of "white space" as it's extremely hard to read. Structuring paragraphs (which are few) with bolded titles may also help.