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Everything posted by Shimoda

  1. I truly understand the feeling. Getting through college was a nightmare. I'm very lucky I had great professors who were so accommodating and understanding. As to the relationship aspect, I lost my longtime girlfriend, who I still miss very much, due to similar issues. It can be very hard for someone to adapt to you when you feel so terrible. I don't know what else to say but that I hope that situation goes better for you than it did for me. That's one of the hardest things about this **** thing. All your old dreams and aspirations essentially get stomped on, to a certain degree. It's not fair, and it's exceedingly difficult. I wish you all the luck in the world. And if you ever need to vent, shoot me a message.
  2. Don't know if this still helps, but I'm thinking of you. I'm sorry to hear about your son and about the anti-phosipilid syndrome. Hopefully your son is doing much better. All the good vibes I can summon are headed your way. - Shim
  3. So good to know you're back home. I'm sorry to hear about everything. You shouldn't have to deal with this. Definitely get a hold of your doc regarding the symptoms from the coudamin. You're a tough one, you are. I really, really don't think I could deal with all of that. Unreal. Best wishes. - Shim -
  4. Thanks guys for all the support. It's nice in a way to know I'm not by myself in this. I've been trying to open up a little more, and manage my schedule better. I think it helped a little yesterday, I'm going to keep that up. Maybe I just need to relax and do what I can. I push myself too hard I think. Thanks again for all the help. You guys are life-savers. -Shim
  5. Thank you so much for posting. Seriously, it's nice to know someone has some ideas and cares. I'm in my second semester at college, which I think makes it that much worse. I breeze through a lot of school work for some reason, though it isn't quite as easy as it once was. I don't think my IQ has been affected too much, its more like it's there, but its hard to access it most of the time. A lot of it is reaction time and just overall clarity in my thoughts. Relationships DO suck right now, girls or just simply hanging out with people. It's something that has been really hard to adjust to, as social life is huge in college. How does Concerta help with Cognitive Dysfunction? Does your son take it? If so, has it helped? Any other ideas? Thanks so much, I really appreciate the feedback. -Shim
  6. Brain fog has effectively destroyed my personality. I can't think or speak in anywhere close to real-time. I find it very hard to tune in on an emotion for more than a split second on occasion - I'm becoming depersonalized. I'm so numb in every way. I was literally the happiest, most upbeat person you could imagine. It's gotten so bad that I can't even hold a face to face conversation. I've completely lost everything that made me, "me". Why is this so bad? I can't speak to people anymore, it's entirely humiliating. It's depressing as one could imagine...I'm 18 and want to be able to talk with someone. You can't become intimate with someone, when during a conversation you lose track of where you are and what you are doing, let alone being able to quickly respond to what someone else is saying. My life as I knew before POTS it is effectively over. Not only have I 'lost' my body, I feel like I've now 'lost' my soul. What do I do? I'm all alone in this, and I'm sorry that this was so depressing. I just can't take this, it's tearing me apart.
  7. All the good vibes I can summon are being sent your way. Get well, Rene.
  8. My only advice would be to make the trip if possible. Getting a diagnosis is important, and long trips to specialists is unfortunately a norm for this type of rare disorder. I'm so sorry for what your daughter and you are going through. Hopefully this sorts itself out soon, and she will be able to live fully happy and healthy. From what you've said, I'm practically certain what your daughter is is dysautonomia in some form. Don't take no for an answer, ever. Stay strong; you're both in my thoughts. - Shim
  9. I'll bump it again. You've dealt with a lot of crap for very real and very painful spinal problems. I go to a chiro on Saturday myself, beginning for myself what very well could be a similarly agitating path. I thank you for setting me in the direction with this spine thing. People don't really seem to care. I've mentioned this to numerous doctors and no ones done 3Ds or taken it seriously at all. I feel like the clock's ticking and they don't give a crap. I'm so sorry. You have terrible pain which no one should be forced to deal with, and the emotional toll just plain exhausting. Regarding the time off, things should (hopefully) work themselves out. If worst comes to worst, maybe your husband could appeal to his bosses' sense of human decency? Feel better. You're in my thoughts. - Shim
  10. Let us know how you're doing then. Best, Shim
  11. Also, I don't drive. Not sure its the safest thing for the other drivers. So the DD thing is out, and I am not going to a frat house. Ever. Like ever, ever. So, yeah...
  12. So, it's St. Patrick's Day. I live at a heavy-drinking college, and literally no one is not drinking. Except me. I have tried on a few different occasions to stomach liquor...but the last time was the final straw. I simply can't drink alcohol with POTS without feeling like I'm at death's door 6 hours later. The pressure here to drink is immense; I'm literally a social hermit now in large part due to the fact that drinking (and smoking cigarettes) are literally the only forms in which people socialize. Literally every night it's the same deal and tonight is the worst. Today is very depressing, especially following Valentine's Day last month. It's real nice outside and I was pumped for today, but once it got to nighttime I've gotten pretty down. I just want to be able to do something. Well anyway, just wondering if anyone else feels something similar today?
  13. I would use a parasol, they look sweeeet....Pretty sure the other boys would pick on me... LOL Thanks for the reminder though, I do need to go get a hat. Also, the heat and humidity is the badthing. I love having an open window to let the sun in and having the air blasting too. The sun might bother some people though, POTS is pretty person-specific.
  14. I had general anesthesia just 9 days ago. I felt so bad that from Sunday-Tuesday morning I honestly couldn't move. I felt like I was going to die. Wake up this morning, and I feel great. Amazing, even. The effects of the anesthesia should go away, try not to get too worried about it.
  15. I'm 18, its been around 3 years and it's miserable. I'm terribly sorry for you and your daughter. I wouldn't wish this on my worst enemy. As stated earlier, keep up hope. It very well could go away considering her age. Try not to get too discouraged, I know that's very hard to do. You're in my thoughts.
  16. I'm so sorry. I get this a lot. It really does go in spells, here's hoping it's already better for you. Try not to think so much lol. Feel well.
  17. Any chance your doctor is Goodkin? Also, yes. I feel like the underlying cause needs to be adressed, or the meds will have minimal effect. With the exception of the betas, I feel much better without the drugs in my system I think. Even with the betas, I'll feel much better when I'm on it. But for instance, often when I wake up before the morning dose, my HR will go through the roof and I feel worse than I ever felt before I got on the betas. For me, the meds are nearly useless with regards to POTS. I've practically tried everything twice, and almost all did more harm than good. Also, the cranial manipulation...do you really think it helps? It's incredibly expensive, and I wasn't sure if it was working or not. Just wondering.
  18. Thanks all, that's encouraging. Does anyone know if the recovery rate worse if it isn't post-viral, because mine was post-trauma? I've been on the betas, and they've been a blessing. I guess I feel like I'm "functioning" because I'm forced to do things and go to classes. But I think it might be just be because I'm young. I'm worried that as time goes by, my body won't be able to take this as well. Maxine, if you don't mind, specifically what was your underlying spinal problem? Also, how did you get it diagnosed? I'm almost certain that my underlying issue is a problem with my top vertabrae, but my doctors didn't try too hard to figure it out.
  19. On the Mayo website it states that in adolescents there is a 80% full recovery rate from POTS. Did they just pull this number out of nowhere, or is it actually based on science in some way? Over two and a half years after acquisition of POTS, no improvement. Am I just unlucky or are they just trying to make me feel better? Also, I'm now 18, so has that ship passed? Is there no hope now that it will just "go away"? Just wondering, thanks.
  20. I think this is one of the worst things about POTS. Shoot me in the leg, and I'll be fine. I can deal with pain. It's the social and psychological toll that catches up to me. As a guy, when I get aggressive, its violent. Ive lost SO many friends because of stupid **** Ive done when Im having a POTS day. Even on the good days the anger at myself and others is often too much to bare. I was pretty docile before all this, it deteriorates each month. It gets worse, not better. I know thats not very encouraging, but its been my experience.
  21. Is there any way that extreme and sudden lack of emotion is attributable to the lack of blood flow?
  22. Yes!!! Cranial osteopathy for me in a week for this. You know it reminds me of? Night at the Roxbury! WHAT IS LOVE - BABY DONT HURT ME - NO MORE. (head bob)
  23. Thank you everyone. Im still a 17 yr old so my schedule is too constantly changing to write down in advance. The big stuff however, i should start writing down. However, its more the lack of awareness - I seem so out of it that I seem entirely detached from myself at times - like im just a bystander besides myself. Thats how heavy its been getting lately. Its hard to explain...I seem entirely unfocused and dazed and its unbearable. I wish I could go in the dark but the visual static disturbances are so heavy in the dark I could majorly syncopy and even more ill. And theres always too much noise and stress, which just amplifies the symptoms. Oh well. Thanks again for the advice guys. BTW, Alcohol could be an option, for some reason I did feel a lot better on it. Havent done it much tho cause of constant medication overload.
  24. Normal adult male CBF is 50 to 54 millilitres of blood per 100 grams of brain tissue per minute. HAHAHAHA so much for normal
  25. IM SO HAPPYY FoR yoU!!!! AWESOME!!!!!! You deserve every penny and more for the crap that comes with this. Same question?
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