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SnowFoxFairy

296d

vent post honestly. I was diagnosed with narcolepsy in April, when they first put me on medication it was incredible, a whole new world honestly. I didn't realize how other people just... felt. all the time. not exausted, not like the smallest task might be the one to make your body or soul crumble. just, like a person. but because my new neurologist didn't really understand my medical history, he decided I didn't need to be on as many antidepressants as I was, one of the medications he put me on was a mild one. I was on the largest Possible dose of Lexapro and we were already kind of like, okay it's more supporting the amitriptyline through the end of the day more then actually helping. So it was the one to go. I gave it time, I know coming off can be awful so I buckled down and pushed through it. The Canadian fires had been messing with my lungs but I was wearing a KN95 when I could, going outside was inescapable but I was doing my darndest. I fainted at work. I work with children and horses, children ON horses. I have an hour drive too and from work. I can't be like this. I got switched to a different neurologist on his staff, we established that my cataplexy and anxiety were interacting in a bad way causing a constant feedback loop of awful, makes sense considering every time I almost fainted behind the wheel, I'd get shot up so high with adrenaline that I had to pull over and cry. she upped my cataplexy meds and was like we'll see how this goes. I waited it out, days later went back to work, still not allowed to drive myself. I fully collapsed twice, the second time resulting in me vomiting where I'd collapsed. during the ride home all of my limbs went completely numb, up to the upper thighs and biceps. my tongue was numb, my speech was slurred. my neurologists office was closed for the holiday. so moving back some, my cardiologist, darling man, is horrid at communicating. he doubled my beta blockers to twice a day, cause my bpm was still hanging out between 120 and 160 at work and that's "too high" okay fine. but he never updated the prescription. I've been trying to call him for WEEKS. I am now currently fully out. this will be important later. so I do the only thing I can think to do, I call my primary, they said come on in. I don't get either of my normal NPs but a guy who is very obviously a student. all would be fine but the more I tried to explain to him the issue. the more distressed he got. he went to get another NP, one I'd never seen before. A guy 🙄. this man looks me in the eye, says he doesn't know what cataplexy is. claims my narcolepsy medication dosage is too high (I'm still having sleep attacks.) claimed I must just be dehydrated. (the man in the er five days before begged me to drink LESS water but all my tests came back perfect) asked if I had tests lately and when I said the week before at the er he got pissy that they weren't with THEM. All and all sent me away treating me like I was some drug seeking whiney bitch. The only thing he at all agreed to help with was my medication refills, my migraine meds were out and I don't use them often enough to notice the script needed renewed(because i was otherwise medicated enough NOT to get daily migraines, not the experience of this last week). Those got fulfilled, my beta blockers are now completely out. My resting heart rate has been over 100 for days now. I didn't realize how physically miserable it really was before cause I was exausted in every direction instead of just the one. Got back into the neurologist, she's trying a pots medication to try and counteract the fainting spells. She said I can come back in every week until we figure this out, she really is lovely but this isn't a thing I have TIME to figure out. I need to be able to work and drive. I had to take off two weeks unpaid and was hit with a $1400 mechanic bill, my dog needs surgery within the next year. We were trying to save for a house but surprise costs got way head of me last month. All that and my resting heart rate is above 100. I'm not looking forward to tomorrow at all. I'm just praying I don't even GRAZE my bpm record or I'm going to have a very bad time. Anyway yeah miserable on my end like I WAS doing so well but here we are 🙃🫠

    • SnowFoxFairy

      296d

      Also I'm just so so so tired of hearing "well you need to go to the er" just to spend a stressed out and cold and miserable eight hours to find out that it's not a heart attack it's pots symptoms or it's not heat stroke it's narcolepsy go see your actual doctors. I'm just so tired man like the American medical system really is working to show that they would prefer if I just locked myself in a box and stopped being a burden on the system. Friends keep (well meaningly) suggesting things like going outside (air is actually poison I'm not supposed to) get some exercise (I am one of the most active people I know, and I've had doctors tell me to relax more no unnecessary strain) look into disability (none of my diagnosis' qualify, despite having a strong ongoing negative effect on my life, besides the fact that disability makes you pay in your soul fighting to get it just to give you quarters and dimes to somehow live off of, it would barely pay for the general MEDICAL necessities I have) I feel like I'm hitting a wall and it's effecting me real bad emotionally.

☝ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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