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Hutch

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Everything posted by Hutch

  1. I tryed it, it did help with blood pressure. Also helped my tachycardia some. But didn’t help make me feel any better. I started getting bad headaches after 4 days on it, i stayed on it for two weeks the headaches were to much. i stoped taking it by slowly lowered my dosages over a week, the headaches went away after stopping think god.
  2. Let me get your opinion on this. If everyone with pots came off their medications and got a job. that involved standing all day and everytime they felt bad or passed out get right back up. just keep ignoring all the symptoms are body gives us that screams at us lay your *** down, ignore the tachycardia and not rest when the bad chest pain comes on. Do everything a healthy person does daily, get home from full time job clean the house do yard work. How long do you think the heart could handle that? Or other organs for that matter, How many people with severe pots would volunteer for a study like that? I sure wouldn’t cause if learn the hard way from trying just that how fast you get worse, and also started my chest pain.
  3. I had a great friend who I miss more than anything in this world. That I had meet threw a girlfriend at the time, he was a friend of her father. One day I happen to be at her house. When Eddie my soon to be bestfriend, had stopped in to say hey to my girlfriends father, long story short do to a vehicle he was driving and I. Being a car guy went out and was checking his car out, and there on the back was a bumper sticker about Dysautonomia. I like to crap my self I couldn’t believe it, as this was 12 years ago and I never met anyone that knew about it not even a doctor, other then my nero. But having chronic fatigue and pots, I knew to well about Dysautonomia, me and Eddie got to talking and we couldn’t believe how we had all the same symptoms, witch both started after mono, we became best friends was into all the same stuff, he was a healthy 50 Other then Bad Chronic fatigue, 6 years after becoming friends he finally gets some good health insurance, he’s d*** and determine, to get answers about he’s crohnic fatigue. He’s family doctor gets him into the Cleveland Clinic in Ohio, I went with him, they ran every heart test there was, echo nuclear stress test chest X-rays ecg, and did blood work, doctor said one thing we know for sure it’s not your heart it’s as healthy as can be. They also were going run blood work for lots of other stuff, and would follow up with he’s family doctor. We came back home, well something crazy happened two months after being back home, he wakes up can’t breath pressure on Chest, goes to the local hospital. They did a chest X-ray boom a badly enlarged heart. He asked how is that possible explaining what he was just told two months ago, well they must have missed it the cardiologist said. I ran to his house get the X-rays that Cleveland took came back to e.r even I could tell a difference it was unreal, the next day cardiologist comes in, he looks at both X-rays, again I ask how this is possible, he then goes to sAy your hearts usely healthy or it’s not it’s hard to catch it in between. I said so what’s all those test about just to make money if not to find a issue early. Long story short he never showed any different signs or the way he felt then he did the whole 6 years I knew him, and we were close told each other anything about how we were feeling, he ended up with a pump assist in he’s heart, and was taking it pretty good, he was in line for a heart transplant, he asked me if he should do it or live out he’s life, with the assist pump, we had many conversations in past about how we thought. Chronic fatigue was immune system fighting its self. I brought that up saying if that’s the case I bet it going hate having a heart that isn’t its own. We’ll transplant doctor talks him into it had him convinced he would be normal again that it was probably he’s heart the whole time he had chronic fatigue witch I knew was bull. What came next was the roughest thing I’ve ever been threw. watching his body reject the heart, the suffering he was in was hard to watch, he ended up passing 6 months after the transplant, so it’s in my opinion when it comes to the heart they only know when there enough damage to be picked up, I personally no longer go to the er over my chest pain and shortness of breath it’s happened enough times and I’m still here, That I just set threw it, death is nothing to fear we all will one day. There no way around it, once u can cope with that it helps. I don’t respond to beta blockers so I’m always in tachycardia when I’m up right every single day, 130 to 150 on I good day 120 I do believe that’s we’re my chest pain comes from and push my self to far. So In my opinion if it feels the same as it did last time, no reason to go.
  4. Have they checked your b12 ? Being a regular drinker, Alcohol Can make your stomach not absorb the b12 in foods. Along with other vitamins. If it is low you need injection as taking pill form will do no good.
  5. My b12 was really low so my Nero had me on b12 injection once a weak. I noticed i had depersonalization bad three to four days after a injection. Then I’d start to clear up a little then it would be time far another injection and it would start the same Cycle Again. He had me on once a week for 4 weeks and then wanted me to go to once a month. Witch is this month, I haven’t did it yet because I’ve been so much clearer minded. Maybe it’s because my b12 is up we’re it should be now idk but I do know the b12 shot makes me weak as kitten the next day, and depersonalization when I got up and about. but I’m also the type that has a bad reactions to all meds. I give up gluten and go all day with out eating intell the evening, mainly do to stomach not wanting to act right, but my symptoms are in high gear if I eat. all I know is depersonalization is not fun. It’s truly something Nobody that hasn’t experienced it, could ever wrap there head around.
  6. My depersonalization is gotten way better. After stopping B12 injections mine has gotten so much better. It makes life suck. I never had panic attacts with it, you have to take a breath and remember it ain’t killed me yet and won’t, but still sucks. I also stopped eating anything until the end of the day, do to stomach acting crazy, eating makes everything worse for me. Are you on any meds?
  7. I understand we’re your coming from. What are you doing to help yourself feel better? I do a lot of what you list. But I feel like h*** doing it. I wish all us pots suffers could move to a planet with really low gravity lol that way we could walk around and feel the same as when we’re laying down. I know your suffering and how you feel I’ve had it since a teen. Also had a alcoholic father that didn’t believe it said doctor was a Quack. Lol I remember a friend came over and I went outside sitting on the pouch laughing. about something he was telling me, I hadn’t been to school in weeks. It took all my strength to put on a fake smile and get out of bed for my friend not to see me weak. My dad came home from work. Said get in the house if you’re to sick for school you’re to sick for friends. Not only was I suffering from being sick I was also punished for being sick. My point is life can be pretty d*** unfair, and we can spend a lot of time hating it’s this way for us. But in the end it’s up to areself to do all we can, to feel better. All medications make me feel worse than better, but threw diet and pushing hard, I feel better then I did. I’m 27 been riding this up and down rolacoster since 13 teen had my worse I’ve ever been hit 8 mouths ago. But I thought I’ve been this bad before and got enough better that life was enjoyable. I’m going give it one last push, 8 mouths latter I’m still really for from well, but enough better that I can see change, i really think for you to feel any better you need to be sure your doing all you can for yourself remember the only way you will feel better is to do more. Small things like sweeping the floors to doing laundry small task can be steps to feel better will take mouths to start to see any small change. I hope my words help in some small way.
  8. Interesting topic as I’ve recently read about p.o.s.i From googling feeling sick after orgasm. Since getting pots orgasm makes my symptoms bad. Also get lots of other crazy symptoms can make me feel terrible for a week. Before getting pots I always noticed feeling bad after sex but thought it was normal and as a young horny man didn’t care. But now I wonder if all my years of bad chronic fatigue since age 15 I wonder if it was from all the sex I was having,
  9. I’m same as you, even when heart rate and bp is normal still all the same symptoms. Hope Florinef helps you. Gave me the worse head aches I’ve ever had. It help with heart rate some. But nothing else.
  10. What’s your symptoms that are worse now then before the shot ?
  11. I’m on no medication and still feel this way.
  12. I have pots male 27, and I can relate to what you’re feeling. I have no anxiety or depression. So I know it’s related to pots and Dysautonomia some how, I would describe mine as my eyes see faster then my mind can process. something I see out the corner of my eye. may cAuse me to put my complete attion on. just to understand what it is. Simple things my mind use to simple be able to tell me fast without stopping my other thoughts kind like a reflex thought it took no investigation on my part.my mind instantly knew what was going on. My body respond was instantly to a thought if required with no effort from me, it’s like if my mind was a machine, you set inside and operated like a car its like it use to only use one lever that took input from me to operate it. the rest automatically took care of its self. But when it hits me it’s like I now have 30 levers to control to try to get the same process accomplished, only it’s just not possible so I end up slower and more confused. no matter how hard I try to shake it, i have no control. thoughts start to be confusing, I feel like I’m watching a dream like everything is fake but I know that’s not true but still I feel it. In this state my emotions are almost gone, it’s the weirdest feeling I’ve ever felt my whole life, no words could do it justice. I hits me everytime I get up trying do something pushing my self once it hits me laying down doesn’t make it leave slightly better but not gone. The feeling is the worst part of my symptoms. It makes life unenjoyable.
  13. i'd suggest apologizing to him, asking him to let you stAy intel you get ssi and offer him the back pay when it kicks in. Hope you figure something out best of luck. ( how did my reply get edited?)
  14. Try to get stomach lined out first. as acid reflux can cause all your symptoms. Yes even fast heart rate
  15. I pushed my body so hard trying have a life. In fact I never told anyone around about Dysautonomia. Because it seems no one who doesn’t have it. Can’t seem to be able to wrap there head around it. My girlfriend of 7 years just learned about 8 months ago. I’m so bad now I do believe my days on earth are numbered. All the pushing threw it, working with a heart beating crazy fast all the time. Being so exhausted everyday couldn’t stay awake if I set down and just keep pushing threw. I’d be willing to bet I pushed my self harder than most anyone with Dysautonomia. The worse I felt the harder I pushed. I’n turns out my body seems to have said enough is enough, my body crashed. I’m now worse then I’ve ever been, my heart playing a big row in that, have a heart monitor on right now, going see a specialist 5 next month but I’m having so many other crazy symptoms that I feel it’s all Dysautonomia related. But he feels heart could cause a lot of them. The worst new symptom I have is the feeling like I’m smothering for some d*** reason. I just ignore it but boy is it a crapy feeling,
  16. About me male 27 years old, diagnosed at the age of 15 with dysautonomia right before becoming ill. I worked out daily rode bicycle couple miles after school each day, I was 6ft tall 165 pounds ripped body never no drugs ate healthy. I had spent my whole child hood sick on and off I would catch stuff so easy as a child had mono at the age of 12 half it was super bad for me, after that when I became set on being healthy. It wasn't intell I was 14 that I felt great looked great witch was short lived. One morning I got on the school bus next thing I know someone is waking me up saying hey man were at school. I got off the bus thinking that's weird im never tired in the mornings. Chalk off being tired for pushing my self to hard, and id go to bed early tonight. by the time I got home I recall being so exhausted, I went straight to bed fell asleep didn't get up Intel it was time for school. I work up as tired as before id went to sleep, again I get on the bus I try to stay awake, but again someone wakes me up saying hey were at school. Its at this point its starts to go down hill fast. Im falling asleep in class no matter how hard I try to keep my eyes open I stand up to change classes I feel my heart racing as I only walk to class, weird I thought. With each new day symptoms increase to the point im very flu like sick feeling when I walked it was like one leg was now longer then the other off balance sensation turning my head quickly made dizzy and head aches heat intolerance super sensitive to smell stomach acting crazy witch all happened with in a week. finally I feel so bad I cant stand it I ask to go to the nurses office. walking down the hall I feel off balance heart racing I get there, she checks for fever no fever. I asked can you check my pulse she trys but says its to fast to count. She asked what drugs are you on I said nothing. I end up leaving in a ambulance, get to the hospital explain all symptoms they do blood work other the a high resting heart rate, doctor says there nothing wrong, your healthy. then goes on to say depression and anxiety can make you feel weird. I blew up. I told him will that be great if I was depressed or had anxiety but like I told your nurse, Im not depressed and don't have anxiety, I explained to him im 15 look 20 tall tan good looking and with a built body im freshman in high school, and hot girls literally were throwing the self at me. as a 15 year old male what more could you want. I explained how I was loving life intel all this started. will long story short. I go home feeling terrible I end up following up with a family doctor again more blood work adll comes make normal she says your healthy as can be. I Said then why do I feel so d*** terrible. She ask you sure its not depression or anxiety, again explain the only thing I have to be depressed about is feeling sick and having to explain to doctors im not depressed is the only thing depressing in my life. I go home and at this point am always so exhausted and just felt so sick, I didn't get out of the bed I just keep feeling worse and worse after three weeks of this, I was to the point I was so weak my mom was helping me walk to the bathroom I lost around 20 pound. one day mom helps me back to the bed. I told mom we need to talk. I went on to say at this point I believe what ever is going on with me is going to be the death of me, and that I wanted her to know that I accept that. to know I wasn't scare to die. at this point shes crying begging me to go to the hospital, I said we have been there done that and the only thing worse then feeling this bad, is doctors not believing or looking deeper. she does some research and we end up in a children hospital were I was emitted. Here is were I met doctor Puri a children neurology specialist. He had five students he was teaching at the time, He comes into the room and had already went over my chart. I remember him asking me to stand and follow him to the hallway of course this was a hard task at this point with as bad as I was feeling, as I get in the hallway he stands there be side me, asked how I felt, I replied I don't no what words to say to explain how bad I feel and how much worse it is standing. he then looks at his students and says if you cant look at this young man and see he's sick and needs help. YOU have no business being a doctor. He than points out how blue my lips are while standing. Then helps be back to the bed and notes how color returns to my lips while lying. For the next three weeks it was like being on the tv show house, I had every test you could think of done, his students would come say I think you have this or that would like more test to rule it out. one of them was sure it was a rare tumor but test ruled it out. long story short after all things were checked. Doctor Puri diagnosed with dysautonomia witch he explains I have server orthostatic intolerance when standing. along with all my other symptoms he suspected it from day one but he explain before he would diagnose some one with this the proper thing is to eliminate everything else it could be. He also said he sees it a lot in young, adults who suffered a bad virius such as mono, witch believes that what caused this. From here over the course of the next week, Doctor Puri try's me on a couple of different medication's all of witch I had server reactions to. One was such a server reaction witch had doctors running around screaming at one another to get a doctor Puri on the phone it was liquid Dilantin that caused the scare. He notes that im highly sensitive to meds and have all side effects that may happened with a giving medicine. He told me with this being the case. There's no medical treatment help, and with exercise and time I would see improvement or even a chance I could make a full recovery. only time could answer this and he wanted me to follow up with him every 6 months at his personal office for he could track my progress. I was discharged and sent home. There is another 12 years worth of this story of my life with dysautonomia. I wish I knew then what i know now. ( Im a terrible speller and this is probably a nightmare to read. with poor punctuation so im going stop here). If people want to hear the rest of my life story. Ill make a video on YouTube. as iv had to leave so much out of what little iv told so far. i think a video i could better tell my story of my fight for a life. if you want a video leave a comment let me know
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