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Abe

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Everything posted by Abe

  1. Anyone used Clonazepam? Did it help? I am trying to work my way into getting off Benzos generally, even though that has been the only medication that worked for me in the last 7-8 years. My doctor prescribed a long lasting one to replace Lorazepam and advised me to try it out first during the weekend. Yesterday was my first time and I did not get a single hour of sleep all night.
  2. Hi Everyone. Please, is anyone familiar with Clonidine? Was it helpful for you or not? Do the positives outweigh the side effects? This is the second time I have been prescribed the medication. First was the tablet and now, the patch. I never took the tablet because I was too afraid of the side effect. I have just experienced a lot of bad side effects in the last 8 years that I now treat every medication like a death door knock. My blood pressure has been extremely high the last few months and I can't keep going like that. Thanks.
  3. So sorry @MaineDoug. Same experience for me too but not as long as you have. I don't even know where to begin anymore but just keep living one day at a time. I am finding it very difficult to encourage others because I am barely holding it together myself. It's like I'm watching life drain out of me. I pray it gets better for you.
  4. @Sarah Tee I made vegetable soup. 😃
  5. You all are amazing. You made me feel so much better today. I usually take it pretty hard when I can't do much of anything but just lay in bed all day. I was able to stand in kitchen cooking for like 2 hours, two days ago. Thank you for teaching me that these smaller achievements are marks of progress.
  6. Thanks so much @Pistol. It's been a long time.
  7. Is this just anxiety or am I really losing my mind? I get the torture of the countless numbers of symptoms that come with POTS. I get the extremely high blood pressures. I am used to it. I get the digestive issues. I get the fatigue that feels like life is leaving my body. I understand the constant bodily pain. I haven't had a break in the last 5 or more years. The one I can't and won't accept is the thought of losing my mind. I was sitting in front of another doctor today (thanks to my Primary Care doctor who advised me to seek the help of a naturopathic doctor) and even though all I was saying makes sense, my brain felt so scrambled. My vision was so bad, it felt like I was seeing triple. It just felt like I died and left my body. It seemed like I am in another plain. The one thing I enjoy, programming, has become so difficult to do. I just sit there and look at my laptop for hours without lifting a hand. I have accepted that this might be my life but not even a day's break? I am trying to get off of Lorazepam but it's the only thing that works for me and that maybe pushing it. I can't use beta blocker (Metoprolol) anymore because I get very sick every time I take it. What do you all do when you've reached your limit? Thanks.
  8. @Misty4280This happens to me all the time. I still haven't learnt my lesson yet. I just got through two weeks of very stressful work situation and now the last six to seven days, I haven't been able to do anything. I can't even think straight at the height of it when my body get so stimulated due to the stress. Mg whole body just shuts down. If you are able to setup a schedule and pattern that your body can familiarize with, it might be helpful hoping you are not in a situation where work requests change randomly. I tried doing that but due to the nature of my work, things change constantly for me.
  9. @Pistol, @Sushi, @MikeO@DysautonmiaMatt, Thank you all so much. Honestly, I just wanted to try something else to see if it will help. I feel sorry sometimes for the pain my body goes through daily and the share amount of symptoms that I deal with even though I know all of us go through it. It's just that when I get overwhelmed (as this year has being for the most part), I am blinded to everything else going on around me. It's amazing what we all deal with. I am grateful though for this place. This forum has been my little safe place things get overhead. I am scared of starting a new medication. My body over-reacts to everything. I am even scared to take Tylenol and regular vitamins. I tried duloxetine few months back and although it helped a little for few weeks with body pain, everything else got worse so I had to stop. I was prescribed 0.1mg of Clonidine. Still not sure if I will take it but we'll see.
  10. It's being a while since I have been here mainly because this year has been the worst since I got diagnosed with POTS. I haven't had a day I call normal this year and things just keeps getting worse. After another round of tests, which by the way, all came back normal, I was prescribed Clonidine. I have heard from many POTS patients that it helped them with the adrenaline dumps which I battle with daily. I just want to know if anyone here have tried it and what was/is your experience? I am scared to start another medication as I am trying to get off Lorazepam. It has been the only thing that has helped me be able to work as little as I can over the last six years. Thanks.
  11. @MikeOI haven't been able to go see my doctor and honestly, I am too frustrated to even pursue anything anymore. Just have been struggling so much lately. I haven't had a single symptom free day this year and everything just seemed to be getting worse. I can barely work anymore. The one thing that has kept me going through this nightmare, has gotten too difficult to do. I tried an SNRI again and had to stop after just a week. Not sure how many medications I have to try before I get a semblance of normalcy again. I'm interested in what others are doing to snap out of this insane, never-ending circle of misery.
  12. Thank you so much @PistolSometimes, I just totally forget all I've learned over the years or maybe it was the fact that I was out of home that added to my confusion. I could tell that something was going to happen from the first day I left and I can tell from how the muscle tensions built up and got worse over days but I'm glad to be back home even though I need this kind of exposure.
  13. @MikeOThank you so much. Everything is just beginning to sink in. Thanks so much for your prayers. Its amazing what our bodies can endure.
  14. The last couple of hours have been a nightmare. Not sure if I'm having a panic attack or something more serious. My oxygen level fluctuated between 88 and 99. That scared me to death. Its my second time in six years that I would leave my house and a first time that I spent few days with a family. I just got tired of being stuck at home with no change in fortune. I initially thought this might be covid but I don't have any symptoms. Maybe I just didn't noticed. Would have tried testing using the Home Covid testing kit but I am not at home. All I remember was this started after I ate. Could a panic attack make my oxygen level fluctuate this much? It has settled down to between 95 and 99 but my breathing still seem mechanical. Thanks.
  15. Praying for you @MikeOthat all will be well. This too shall pass.
  16. Thanks @Knellie I'm not sure. Never tried to find out but the general symptoms of EDS doesn't seem to be something I have experienced either. Maybe I just don't know. I know I have Hyper POTS based on my daily symptoms but honestly, I am tired of chasing shadows.
  17. I second that @LostPrincess12. She's always been amazing helping others navigate this nightmare of a life and giving us hope and courage to continue. Thanks @Pistol
  18. Thanks @MikeO I wish I can say I'm okay. Surviving will be the right word. I got up to go get something to eat in the kitchen yesterday and I almost fell over. Everything seemed to have gotten worse than ever. I can barely do anything. Today I tried cleaning a little but standing up is just so painful. Every part of my body aches. My neck doesn't seem to be able to hold my head upright anymore. Just rough all around. Thanks @WatermelonSaltI noticed when I take the benzo I was prescribed, it helps a little. Just temporarily. No medication has been able to calm my nervous system. I am bad at supplementing too but I do try Vitamin D few times a week (4000 IU). The last time I had a vitamin D test, it was just barely at the minimum.
  19. Anyone experiencing severe blurry visions? I don't even know how to describe it anymore. Everything feels shaky, Can't focus that much. Very sensitive to light. Tightness and heaviness all around both eye sockets. Not sure what to do. It makes the little work I do very difficult. Not sure if I am in a flare again but the last few weeks have been too rough. Has anyone done anything to relief these ty symptoms? If so, what is it? I am dying for a relief. Thanks.
  20. Abe

    Help

    Thanks @little_blue_jayStill struggling but surviving. Most days are miserable but God has been good to me. I am still able to work a little bit. My oxygen level seemed good except when my anxiety/panic is pretty bad. The bodily pain and muscle spasms are worse but living with it, None of my medications seemed to be helping but hoping this flair too, pass soon. My friends are pushing me to go down to Mayo Clinic but I'm just tired of the hospital setting and not sure how much they can help me. Also it seemed to cost a lot to go there for a consult.
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