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Everything posted by Derek1987

  1. I have always tried to describe myself as if im floating in a boat sometimes. I can feel this way in any position. I've had muscle twitches all over my body for the past couple of months. Not sure if related. But i physically saw myself swaying back and forth in the mirror. I also feel like i am losing my balance sometimes. Starting to wonder if its parkinsons disease or something or is it just a pots thing. Someone on another group mentioned MdDS. Anybody deal with these symptoms?
  2. Coreg has helped a lot but hasnt completely taken them away.
  3. I too have been having muscle twitches all over my body for maybe 4-6 weeks straight now. I told my specialist about it and they took blood to check my electrolytes. I guess they must be okay because i havent heard anything back. So i am lost just as you are.
  4. Im depressed by my limitations and people close to me who dont understand. It hurts when people close to you look down on you as weak or something. It causes tension. Yeah this illness sucks.
  5. Yes. Sometimes both though. Its been going on my whole life though.
  6. I was blessed to have this cat house donated to me brand new. I put it together and of course i had to take a break and i am still suffering from doing it. Felt faint the first night. Pushed through so the cats can have somewhere to be warm this winter. Its around the 60s so isnt terribly cold at night yet. I did order a heating pad for the inside. I plan to insulate it and put a plastic flap on the front door. I hope they use the inside. The kitten took to the upper deck the first night. My grey cat named storm(not one of the strays) of course had to go inside while i was putting it together.
  7. So my camera did not pick up the colors very well but i will explain. Last night i got in the shower and i noticed after a couple mins my left arm and hand were blood red and my right arm was completely normal in color. Then after another couple of minutes both of my arms and hands were blood red. Then in less than 2 minutes my arms went back to their normal color except for some red blotchy spots on my hands. I took a picture of it. My hands look pretty red in this picture but the camera is just crap. My hands were pale(normal) and the red blotches were more noticeable than you can see in the pictures. I see a lot of people have pots and other conditions. So far all i have been diagnosed with is hyper pots. Perhaps this is just a nornal pots thing. I just wanted to know your input. Edit. Sorry i dont know why the first picture uploaded twice.
  8. I just ordered some for my wife for sleep and pain. She will test it out tonight. Im not allowed to post the website. But for people with a disability, low income, or a veteran, you get 60 percent off. I bought her a bottle of 50mg cbd capsules. 40 in the bottle. Regular price. $90. It only cost us $36 with the discount. Free shipping and no tax. You have to upload an award letter or a doctors note or some other document options. It says on the website what documents are acceptable. The brand is lazarus naturals. They sell tinctures, pills, creams and other stuff. Edit: please pm me if you would like to know where to order this from.
  9. Im probably the only other person on the board who knows what song that is.
  10. I take mestinon. The only thing it does for me is make me have to take it lol. My next appointment with my specialist im just gonna be like this isnt working peeps. Hmm. Ill just try and avoid taking any meds for headaches if possible.
  11. I see my neuro later this month. I will bring it up to him.
  12. Its been going on for months. Could be stress/tension headaches. I might try tylenol as ive gone through a bottle of 500 aspirin way too quickly. Sadly my body does not even tolerate caffeine anymore. A can coke will send me into extreme anxiety with sweaty hands and even feet at times. I used to live on 5 hour energy and energy drinks from my early 20s. But i suspect that was this disease with extreme fatigue but hadnt progressed to where it has me now.
  13. They are random. Sometimes i wake up with them. Or they just come from nowhere. My eyes and forehead and temples hurt. I woke up with one today. Its been there since i woke up. Have not taken any aspirin. If i did, it would go away.
  14. I did not know tylenol was any different than aspirin, advil etc. Are there long term side effects when taking that? And no i have not. What kind of doctor checks that? Never heard of this before.
  15. I have headaches 7 days a week now. Aspirin actually works 99 percent of the time. Is there an alternative that doesnt have internal bleeding as a side effect? I cant keep taking 1000mg of aspirin everyday.
  16. She told me the same thing. There is no cure but symptoms can be managed. Well so far after a year, they have not been managed. After a year they have only tried me on 2 medications. Just waiting on vandy or a healing.
  17. Thanks for the response although i did not understand most of it lol. I wonder how come you dont experience tachycardia with a beta blocker and i always experience it regardless. All the beta blocker has done was made my laying down HR drop from 70s/lows 80s to low 60s/50s. i stand up and can still get a 110 plus reading. Before the beta blocker, laying down i would be around the 70s/80s like i said and could jump to 130s 40s 50s upon standing. All the medicine is doing is lowering the HR but its not fixing my broken nervous system at all. Im basically still in the same boat. Hopefully what i said makes sense. I feel bad today. When she filled out some long term disability(not ssdi) paperwork for me, she wrote that i had fair health. I dont believe being stuck in a bed for a year is fair. I still got approved thanks to another doctor. An actual doctor.
  18. I see an autonomic dysfunction specialist. She is a NP but specializes in autonomic dysfunction. Yes they did figure out i have hyper pots. And i agree with them on that. My BP rises upon being upright along with my HR. I have elevated adrenaline in my body upon being upright. So when im sitting or standing, my body is being overloaded with adrenaline causing panic. Its an anxiety i cant explain. (Sitting in a lobby waiting for the doctor to call me is torture) They have me on carvedilol and mestinon. I understand their goal is to reduce my adrenaline and HR. Here is the problem. It is not working. Yes my HR is reduced. But it still climbs 30,40,50 plus BPM upon standing. All its doing is making my HR lying down slower and when i get up its still a huge jump and still in the hundreds. This is just after 5 mins of standing. I dont know how high it would go after that as i dont make it much longer than that. I dont understand the logic in what they are doing. Just because my HR is slower does not mean my nervous system is corrected. Lets say it completely eliminated my anxiety. If my nervous system is still broken, how is that going to make me function? If my body is still having trouble pumping blood to my brain, all that would do is cause more fainting/near fainting incidents. Right? I think they are in over their heads. My specialist thinks i can be functional at some point because " you are still so young". Even if it eliminated all of my anxiety and my HR numbers are more normal looking, its not fixing the issue. A couple days ago it was in the 60s outside at night. I wanted to try and enjoy it. I sat in the chair on the porch. The air was cool to my skin yet i started to get hot and flushed very quickly. My body knows the air is cool yet im starting to burn up in the face. I didnt make it 3 minutes. I had to go lay down. I am waiting on an appointment to go to vanderbilt in nashville. I guess this was kind of a vent.
  19. I live in west TN. Oct 1st the high is predicted to be 98 degrees. We are breaking records where i live. I am very heat intolerant and looking for some relief but its nowhere in sight.
  20. I bet. Yall have free healthcare correct? I have thousands of dollars of debt between my wife and i of medical bills. Need to move to canada lol. The cold would be too bad on her bones though.
  21. No. Our healthcare system is trash too. You have to check with a doctor if they accept your insurance.
  22. Yeah it was ruled out. I was supposed to see an adrenal gland specialist anyway. Missed 2 appointments because i was having a really hard days. It was so hard to reschedule with them. Finally got ahold of them this week and they dont accept my new insurance lol. So i told my primary care doctor to find me another who accepts my insurance. I dont know what they can even do. My cardiologist said the beta blocker is really the only thing that can be done about it. Idk.
  23. Before i had xanax, they gave me hydroxyzine after a hospital trip. It did 0 for me. Even took extra and felt nothing. It was still a dose that could be taken. Still felt nothing. Glad it works for you.
  24. Is this similar to benadryl? Seems like i cant tolerate benadryl anymore. My body goes haywire when i take benadryl now. Wake up to hot flashes, and adrenaline i guess. Benadryl helps me sleep well if i dont take it every day. Wish i could take it sometimes. Benadryl is actually more potent than my xanax unless i take benadryl everyday like i used to.
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