View Full Version : Newbie question


Alyssasmimi
06-09-16, 10:33 AM
I'm 53 and just being diagnosed, sort of...when I was in college in my mid 30s I was diagnosed when they did a workshop for nontraditional students. Since my grades were ok, they said I didn't need treatment. I was a math major and my husband, at the time, had a master's in math and was a college professor, so I had a 24/7 built-in tutor. HUGE advantage! I'd never have survived or graduated. I taught high school until I eventually had to go on disability for a autoimmune arthritis called Ankylosing Spondylitis. It was a constant struggle. At the time I had been misdiagnosed for decades and my husband left/ had an affair. I was so unorganized, so not self motivated, so overwhelmed, etc...fast forward 10 years. I sell my house and move back to my hometown where my family is and later decide to go to therapy for anxiety. I hate benzos, because I already suffer sever fatigue because of autoimmune. Once you have one, others piggyback on...so I have Sjogren's Syndrome, Raynaud's Syndrome, and "probable" lupus. I also have type 2 diabetes, but I've lost tons of weight and it's easier to control now. So, ince i got into therapy the therapist asked her supervisor (she's a student intern at a local private college) to check me for ADD. He says I have moderate to sever ADD. When he started explaining the things I thought were character flaws were ADD I nearly cried. He told me he can't treat me chronic fatigue, but can treat my ADD! 2 birds 1 stone! wow! That's a lot, but that's the background so now maybe my questions will be easier to answer. I'm so new to this and other than dealing with kids with adhd in the classroom I know NOTHING. So thanks in advance for any help you may be.

OK...here we go lol before Vyvanse I would stay home days at a time and my house looked like hoarders light. It wasn't filthy, just cluttered. I actually have too much stuff and need to get rid of tons of stuff to goodwill or something like that, but with fatigue and feeling too overwhelmed to even know where to start I just didn't. Then my cousin needed some major help because he'd become a massive alcoholic and was living with his mom, but aunt and she is 70 and he was just drinking to get drunk as fast as he could. Tip a bottle of vodka and not stopping until it was gone, sort of thing. Three days after starting vyvance I found out how bad it was getting. His dad was "working" on getting him help for the last 2 years. It was a mess. I stepped in, stepped on toes and found a rehab that didn't take court ordered patients that took his insurance and fought everyone to get him in rehab 200 miles away. Now his mom has major dementia type symptoms. I've been taking her to doctor appointments ever since. Her son, by the way has been arrested 4 times for shoplifting, etc...was facing jail time if caught and still his dad thought he could just stop on his own, but he wasn't living with him! THEN during all of this my best friend since high school has a son with puberty onset paranoid schizophrenia. He was living in a town about 25 miles away and seemed to be doing well. He was workingand was finally on meds. He was probably 25 before he got a proper diagnosis. During all of the above, I get a call from her telling me she's taking Josh to an ER in Oklahoma (he has an Indian card) and would I go? I'm the only one he'd allow her to take. I started getting ready and she called and said he says he's dying and can not go that far were stopping at the er in my town . I met them there. He was in bad shape. He had been off all meds and was self medicating with beer and energy drinks and caffeine pills. He had just been arrested because he was walking all over town, pacing a town of about 50,000 people, drunk and bumming cigarettes. Some of the merchants called the police. So they did typical drug test and he tested clean. We knew he would. The kid is honest lol anyway, he took his socks off and his feet were AWFUL!!! they were all bruised looking and skin peeling, etc .. once they came back with blood with they told use he had acute hepatitis from all the alcohol, BUT he really probably did feel like he was dying because he had broken down muscle tissue in his feet from so much pacing the entire city!!! He had rhabdo, and we caught it in time. They put him in ICU. They flushed his kidneys and liver and released him. I'd get up, take my vyvance and go! I'd nevet be able to go that before.
Now all I've got to do are some follow up appointments for my aunt. We've done all the tests and we will probably have to see the doctor for the results at some point and then in September we see a geriatric neurologist for a full work up at a memory clinic. WRONG!
I have many half siblings. There is one that's a daughter to me. May sound weird, but who cares lol
I'm 27 years older than her and her bio mom is mentally ill. She's been in and out of her live for years. She will show up, stay with her for a while, disappear for years. So, I've never had children she'd never had a real mom other than me, so we're in the process of adult adoption. I have no heirs and 9 half siblings. I don't want them crawling out of the woodwork for all my stuff when I die! I'm her mama, I'm her daughter's Mimi anyway, we're just making it official. So, here's there's the next thing... she goes to pick her up, because she can't let her just be dumped! She was abandoned by my youngest half sister, by the way, her ssi debit card was empty!! when her found her she had a huge growth like thing on her neck and chest!!! She'd seem her about six months ago and it wasn't there! When she talked it was real raspy, as if her air was being blocked off. She took her straight to the ER. It's a small town ER. They did a scan and told her they weren't sure if it was lung or breast cancer, but it's spread (of course). She has Oklahoma medicaide and this was an Arkansas ER, so they made her an appointment with a pcp in Oklahoma and she's seen him twice while waiting to see an oncologist. Her bio mom won't let me do much, we already know that. We've not mentioned it to her. She is in a horrible relationship and she's been working on getting out. He's not worked in a year and she's working 60+ hours a week to just make ends meet. He lies if he makes money on the side and spends it on tools, etc instead of utilities and such. I'm stuck on SSDI and am no help other than moral support and loving her. Dang it!! sorry, I'm rambling again. I'm so overwhelmed and all the people in my small world are mentioned in this post lol mostly it's just my family and my best friend and my dogs.

Here's my questions FINALLY
I've had issues with edema in my feet and ankles and also staying hydrated. I think because of the hydration part I've had issues of feeling wobbly and dizzy upon standing, but it's not always immediately, it's sometimes 4 or 5 seconds later. I've gone to see my pcp 2 times. First time I told her I was feeling weak and my legs wobbled when I'd be up walking around. Once I stood and I had this sensation of dark circle closing in and I dropped to my knees. I didn't faint, but I felt like I could have. I Shake It Off and once I felt more stable I got in the car and drove to my friend's house. The weird thing was, my vision was totorally off!! I was driving down the main highway and couldn't read any of the signs! Even fast food signs were blurry enough if you didn't know what they were you wouldn't be able to read them. It resolved within an hour or less. I don't know if it's vyvance related or blood sugar. My pcp was OFF that day. She was short and didn't treat me at all. She said it's allergies when i told her i felt dehydrated she said do you have spit? I said yes... you're not dehydrated! And walked out the door. Later I found out she had a migraine and had to go home early. $30 wasted. So...then my blood work came back and I'd let my diabetes get out of control over the holidays, so when my blood work came back I'd droppee my A1C from 9.8 to 6.4 in just 3 months. I tried to ask if that could have been the problem with my feeling so weak and lightheaded, etc...the nurse just said she didn't know. No offer to ask doctor or anything!
So...one month later...still not feeling hydrated well enough, I'm not sure if it's it in my head. She seems to acts as if it is. She says with my Sjogren's and other things I have should have me drinking all the time. It does!!! I sip all the time! Sip!
Trip to PCP #2 all of the sudden my feet and ankles are starting to swell!! Terrible pitting edema. I haven't had this in years!!! When I sleep I can't move my legs without horrible cramps!!! I've had some kidney pain also for about 5 days (in have a history of chronic kidney stones and infections). She told me to drink some tonic water and make sure I elevate my feet! That's it!!! She'd done a cbc not long ago, but there needs to be some reason for this sudden onset of edema. I do have bouts of insomnia and don't lie down when I can't sleep. I know that doesn't help.

So, other than maybe edema caused by vyvance?
I'm on 40mg. Started on 20mg. It was amazing for about 5 days and then nothing. Then upper to 40 for 3 months now and all is well. Scared me that I'd build a tolerance because 20mg didn't do much after the first week.

Also, anyone around my age, if edema an issue from vyvance what did you do? Worried me about heart failure. My BP is ok. It's checked no less than every 28 days when I go to pain management.
I'm healthier (heart, I hope), I've gone from 320 pounds to 169 and still losing. Actually vyvance has made me eat better. I wasn't eating at all on some days.
Finally done lol if you made it here, you're a saint! If your understood all my rambling and auto correct mistakes your brilliant!!!

sarahsweets
06-10-16, 06:28 AM
Holy sh*t you have alot on your plate!
Re: vyvanse and edema..I would say as an educated guess that its not from the vyvanse only because stimulants, especially amphetamines can be vasocontrictors which means you are less likely to have swelling and more likely to experience cold feet and hands. Have you ever had a diabetes screen?

Tetrahedra
06-12-16, 10:32 PM
So a couple of things:

Firstly, welcome! I really hope that you find all the ADHD resources you need so you can figure out how to get it fully under control.

Secondly, unfortunately we're pretty limited in what we can say regarding your edema. Obviously people can give you opinions, but your best bet is to see a professional about it. You have so much going on health-wise that what might not be a side effect to most people might be a side effect for you, or it might be a side effect of combinations of medications, etc. If you aren't comfortable with your first doctor, I suggest you find another doctor to ask this question to.

Alyssasmimi
07-20-16, 10:52 AM
It was the vyvance...I've switched to Adderall ir and as long as I sleep or lie down 6+ hours a night my feet do not swell or rhe swelling reduces quickly. It wouldn't reduce well on vyvance. The real issue is, he changed me, and went in a 3 week vacation. He didn't give me nearly a high enough dose to be equivalent to what I was taking!!! I went from 50 mg of vyvance to 2 15 mg of adderall per day. Once morning I got up, took my pain meds and Adderall and laid back down. That's my usually routine. My disease makes pain so much worse upon waking. I fell back asleep and didn't wake for 4 hours!!!! I'd never do that on vyvance!!! I may sleep an hour and it would be light the last 30 mins. Percocet doesn't make me sleepy. I took only a half anyway. I probably needed the sleep, but... I knew I wasn't feeling the same and was feeling in made a mistake. I didn't know I was on such a low dose. I know nothing about dosing on adderall.

Pilgrim
07-20-16, 12:09 PM
They'll start you on a low dose to see how you react on that medication. Then start to titrate you up slowly.