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Posts 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. 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.






  3. 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.20191025_044033.thumb.jpg.26b28729792e1505cf7a5435ed89f87a.jpg




  4. 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. 

  5. On 9/8/2019 at 6:31 AM, DizzyPopcorn said:

    Q - What songs are written for POTS patients?

    A - Let the bodies hit the floor (Downing pool)

    Im probably the only other person on the board who knows what song that is.

  6. 29 minutes ago, Sushi said:

    All over the counter pain remedies have some dangers. You are aware of the concerns with aspirin but Tylenol (acetaminophen) is tough on the liver and all too many have died from liver failure after taking too much or mixing it with alcohol or other liver-heavy medications.

    I know this doesn’t help much and headaches can make life very difficult—I know this from my own king experience with them. One thing recently has given me surprising relief—Mestinon. Though I started it for help with PEM (the dreadful post exertional symptoms), it has also cleared up my headaches which is a great boon! 

    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. 

  7. 3 hours ago, bombsh3ll said:

    I have a CSF leak which causes splitting orthostatic headaches along with all the other goodies. I take co-codamol (combination of codeine and paracetamol) and also ibuprofen. Also use cooling gel pads on forehead. Only lying down really helps though. 

    Aspirin at that dose is not advisable for daily use, although I can understand you being desperate for some relief. 

    Due to my own experience, I would highly recommend this. It may be high, low or normal but is definitely worth looking at for anyone with severe headaches needing to take daily medication. I raised concerns about my own intracranial pressure from the start (granted I was concerned about raised rather than low ICP) but no-one listened. 

    The person who would check this is a neurologist. 

    An optician can also check your eyes for signs of raised, but not low, ICP.

    B xxx

    I see my neuro later this month. I will bring it up to him. 

  8. 10 hours ago, Pistol said:

    @Derek1987 my eyes and forehead hurt when I have a sinus headache from allergies. Could it be that? It is that season. ... You asked if Tylenol is different than aspirin - it also is a NSAID but is metabolized by the liver and does not have stomach side effects like aspirin and ibuprofen. My husband gets really bad cluster headaches and he takes Tylenol and caffeine for them, it helps him. 

    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.

  9. 21 minutes ago, Random-Symptom Man said:

    I prefer advil. It tends to help me with swelling too. Plus, while Asperin lowers my blood pressure, advil/ibuprofen raises my blood pressure, which is what helps me.

    But I read that continual use of advil/ibuprofen is bad for the heart and kidneys, so I try to limit its use.

    Do you know what type of headache you get? Where do they hurt? Everywhere? Temples? Base of spine? Behind the nose? There are a ton of possible causes of headaches. Are they continual, or do they happen at certain times of the day?

    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. 

  10. 4 hours ago, KiminOrlando said:

    They can't fix you. That is what I was told. They can only treat the symptoms. They treat them one at a time by trial and error.

    Vandy was a great experience for me. I hope you get answers and help. Living like this is very frustrating. I too start sweating when it isn't hot. Wish it would stop.

    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. 

  11. 2 hours ago, POTSius said:

    In hyperadrenergic POTS, there is excessive sympathetic nervous system activity

    A beta blocker is only blocking the beta receptor mediated effects of excess sympathetic nervous system activity

    There are also alpha receptors which respond to adrenaline and noradrenaline and which could be mediating symptoms

    In addition, the sympathetic nervous system releases things called co-transmitters like NPY, and purines (like adenosine, ADP, ATP, this is called purinergic signalling) that can have additional effects

    So I think it makes perfect sense that a beta blocker would not block all the effects of excessive sympathetic nervous system activity

    I personally have found that even though I am on a beta blocker and it is controlling my heart rate I still have orthostatic intolerance (just not tachycardia while the beta blocker is working)

    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. 


  12. 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. 

  13. 17 minutes ago, DizzyPopcorn said:

    Refresh my memory if you don't mind, but they did rule you out for a pheo in your case right? 

    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. 

  14. 31 minutes ago, KaciCrochets said:

    @p8d I will have to remember that! I do okay right now with the hydroxyzine, but my fear is that it will stop working. It makes me feel better to know of other meds to try. I just need something to keep the surges at bay long enough for me to fall asleep. Once I fall asleep I'm good. Well, good enough.

    @Random-Symptom Man I will have to look into the headband earphones, I'm intrigued!

    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. 


  15. 1 hour ago, p8d said:

    @KaciCrochetsmitrazapine is the only med that allows me to sleep through the night.  It works differently than antidepressants and sleep meds. This is off Wikipedia, not my favorite source but it describes the pharmacology well, especially why it works for us Mirtazapine has antihistamineα2-blocker, and antiserotonergic activity.[7][72] It is specifically a potent antagonist or inverse agonist of the α2A-α2B-, and α2C-adrenergic receptors, the serotonin 5-HT2A5-HT2C, and the histamine H1 receptor.[7][72]


    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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