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Derek1987

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Posts posted by Derek1987

  1. 3 hours ago, Delta said:

    Found it; thanks for posting the item # or whatever number it is - I am definitely going to try this!  It will beat looking for a magazine or something to fan myself when it gets too warm.  I can't believe how tiny it looks in that person's hand!! 

    Yeah it's awesome and really helps me. I wore sunglasses in the lobby(attorney's office) on Monday with the fan blowing on me. Probably looked crazy but the combination really helped me. Especially the fan though. When they called me back I just turned the fan off and folded it up and put it in my pocket. 

  2. 2 hours ago, Delta said:

    How about sitting in a warm exam room with the door closed and no windows while waiting for the doc?  Not even any air movement; ugh!  I have wicked heat intolerance as well so thanks for the tip.  I  can't believe I used to be able to be active for hours in the sun.

    Yeah. I tried to support my wife by going to one of her appointments. When I was sitting in the room like that. I had a major episode. Thought I was going to have to go to the hospital. I layed back in my chair the best I could. Eventually I felt better. Or enough not to have to go to the hospital. 

     

     

  3. I have really bad heat intolerance. Sitting in a lobby at the doctor is already tough. And then it's noisy and crowded and usually hot. When I get hot, my body wants to act crazy and go into faint/adrenaline mode. So I bought this fan off of Amazon. It is a dual head fan that folds up and is compact and fits in your pocket. It puts out a great amount of air even on the low setting.  It has low and high.

    I did a test and it lasted 2 hours on high speed. It was still going but I couldn't stay up any longer and see how long it would really last. 

    Just thought I would share. It's helped me.

     

    Edit: to find the fan I am talking about, type this in Google and it will pop up. 

    B07NS7Z9G5

  4. 6 hours ago, Delta said:

    This sometimes happens to me when I have to sit still for a while and yes, I do believe it is from sitting still for too long.  It happened last week when I sat for maybe a couple of hours straight, getting caught up on newspapers and mail.  A couple of things have helped me with this - first, moving about in *whatever manner is possible at the moment* if I can't get up and start walking.  The OP mentioned getting haircuts and sitting in a car but even sitting in a car isn't bad (unless I'm the driver and am at a standstill in traffic) because if I'm a passenger, I can still move my legs around and shift positions, move the seat back, and, if I'm the driver, I can still be in control if I need to pull over.  Stuck in traffic and driving myself, no place to pull over, different story.  Then I crank up the A/C full force and blow it on my face, no matter how cold it is outside, and take a swig or two of ice water I keep on hand in a tumbler.  And take deep, slow breaths and try to distract my mind and not think about it, because that makes it worse.  Sing to myself or something. 

    I think one reason haircuts are tricky is that you're "expected" to sit still when someone's working on your hair so you might not be so comfortable to start "fidgeting".  I was on jury duty yesterday and you know how that goes, sit, sit, sit . . .  I started to feel a little bit woozy after a while so I started moving my legs back and forth as I sat, you know, bending them at the knees as if I were walking.  Drank a bit of Carnation breakfast drink I had in my purse, as a distraction.  It helped, but I was kind of wiped out by the time I got home a couple of hours later.  DH wisely advised me to hit the bed!

     

     

    Sat for 20 mins at an attorney's office today to get her attached to my case. Plus the car ride. Feel like I've worked a 16 hour shift. Had to take a nap like an 80 year old man.

  5. On 3/26/2012 at 6:05 PM, Alaska said:

    Like many of you I spent 2 years of trying to figure out what the heck was going on with me. Biggest issue was feeling dizzy and times feeling like I was going to have a stoke or seizure or something. Then I had days of just feeling awful and felt out of it. I got overstimulated easily, especially in loud environments. Throw in fluorescent lights, tall ceilings (like Walmart) and the room being too warm and it brings out the perfect storm in me. The Doc I went to at the time stated "why don't you just stop thinking about it for a month or two and call me back then." I thought about saying "why don't you put your hand in boiling water and you don't think about that and call me back." I actually thought of something else, but I probably shouldn't say. I fired him and found a Doc that listened me. The new Doc took 3 hours with me during the intake, and I was looking at my clock during the meeting because I had to go. That was a first. Well eventually a tilt table test was ordered and I passed out in less than 10 minutes after being put in the standing position. So that was my intro to what is my current diagnosis of Neurally Mediated Hypotension. That Tilt Table Test was a fun ride... in no way at all. They should pay me for it. Luckily I had never fainted before and still haven't without the TTT, but have a lot of pre-fainting episodes where I feel very close to fainting.

    So, to the haircut. The last few years I've noticed I worry about getting my haircut because I seem to feel worse while I get one. Today was no different. As the haircut continued I started feeling worse and worse, to the point my forehead is sweating and I'm thinking to myself "do I need to get down on the floor before I pass out." She asked "are you ok". I must have looked bad. I pulled through and made it. But then I realized sitting still on that chair to get my haircut is basically the same as not being able to move on the Tilt Table. I do feel bad standing in lines, but at least you can move around.

    Anyone else triggered by haircuts, or having to sit still like in a car?

    Yes I hate getting haircuts now. I am triggered. I had one instance where I knew something was wrong. And this was before I was diagnosed or saw a specialist. My forehead started to sweat and my anxiety was off the charts. I tried to play it off. She probably thought I was crazy. I believe I was squirming a little bit. I now only get haircuts during the weekday where nobody else is there getting a haircut. It has helped. But it's a battle I deal with now. 

  6. 17 hours ago, Pistol said:

    @Heartbroken - yes, you can print them out, everything on this site is public. That is a good idea and it is exactly what it is supposed to do - educate ANYONE about dysautonomia, not only patients. Also - there is a very helpful book called the dysautonomia project, you can get it on the website https://thedysautonomiaproject.org/  or on amazon. It is written by physicians for physicians and patients both. It is meant to be sheared with your physician. I have one and gave a copy to my PCP, another patient had already given one to my cardiologist. --- Good luck with your appointment!!!!!!

    I actually printed out your article on hyperpots and gave it to my PCP. With one of my other doctors writing up a letter of what's going on with me and that article, I think my PCP is taking me more serious. I think they thought I was faking to get disability. I'll probably print that out and give to my other doctors as well. 

  7. If anybody knows. Since the near fainting/spinning outta control/no balance episode, I take quick showers. Ever since I took one today, I've been suffering for hours and hours. No let up. I believe it's adrenaline. Sweaty palms, extreme anxiety. This isn't the only time it's done it to me. Today has been torture. The only thing I can think of to do is lower the temp of the water. I just wonder why it would go on and on and on. I can't sleep because of it. 

  8. 7 hours ago, Pistol said:

    Oh boy @Derek1987 - that is not OK!!! No wonder you are in bed all day!!!! What does your doc say about these readings? My sister and I both have high BP like that but we are much better since on Carvelidol and diltiazem. I know you are taking Carvelidol as well but if your BP is that high you should try another med in addition to the BB. Just increasing the Dosage was not enough in my case but adding the calcium channel blocker was key. Before this combo my sister was on 3 BP meds and none of them helped.   

    The crazy thing is sometimes my BP is too low. At least according to the internet. Like 104/68 area. I think it's the increase in carvedilol. But then again sometimes it's still mostly high. Still talking about lying down readings. I do have Lisinopril as well. I was taking half a pill when I was on the lower dose of carvedilol.now i When my BP was creeping low, and I stood up my BP would be in the standard good range but my heart rate still increases to 130s/40s if I stand longer than 5-10 mins. As if I'm not taking carvedilol at all. I messaged my specialist on the portal. She really didn't comment on it but she wants me to see a specialist who deals with the adrenal glands I think. An endocrinologist. My body just doesn't want to work right.

  9. 20 hours ago, Pistol said:

    @Derek1987 - many people with hyperPOTS have diastolic hypertension, meaning the lower number is high ( above 80 ). In my case both numbers go up when I am active - for example 156/100. If the BP is 150/80 it is still hypertension but the increase in the LOWER number is more serious. It means the heart is working really hard without relaxing in between beats ( just as @jklass44 explained ).  This has a greater risk of heart attack and stroke. 

    The lower number is always in a good range when I'm laying down. My upper number can still be high. But when I stand up, both numbers go up. If I'm up for a few minutes, my bottom number will raise over 100. 100-110 usually and then I lay back down. 

  10. 6 minutes ago, Pistol said:

    HyperPOTS runs in my family and we all have high BP upon standing or with activity. Other symptoms that I have found typical for hyperadrenergic POTS ( in addition to the typical POTS related symptoms )  are: headaches, chest pains when BP is up, cold hands and feet,  tremors, feeling like having a fever, old sweats, … there is more but I can't list them all. I have found some relief from a combination of BB and calcium channel blockers ( fine-tuned over 2 years - no quick fix ) and IV fluids. 

     

    I understand all of that. My blood pressure always shoots up when I stand up. But my question really is why is my lower number normal and my upper number so high in comparison. That was a reading laying down. Now if I stand up my lower number will rise to the high blood pressure range as well. I was just curious why my upper number is bad but my lower number is good while lying down. It's always the case when laying down. 

  11. On 5/19/2019 at 8:17 AM, katcanny said:

    Myself and my partner love Ip Man the whole trilogy is amazing and ronin 47 was great for a western movie too! We have watched all the Bruce Lee films and crouching tiger hidden dragon and can I say I’m partial to Kung fu Panda 

    IP Man 4 is on the way. Teaser trailer. Yes it is real.

     

  12. On 5/16/2019 at 11:43 PM, blizzard2014 said:

    I have trouble getting all of my pills down every day. I tried Marijuana again for pain, just smoked a piece of it about the size of a pea. I was burping to the point of vomiting/gagging for a few hours, almost like my throat was going to close up and I was going to choke to death from hiccups. I think my throat is messed up from this condition too. I almost dialed 911 but somehow survived. If I skip my 40 mgs of Pepcid for even 3 hours, I start burping up food and stomach acid. I did it one day and then realized I had not had my nightly meds. It's like everything in the upper digestive area is going wild. Sometimes I choke on a drink of water and also on my own saliva. One night a few years back I had a pill go down the wrong way and I was hacking violently for several minutes and then a bloody pill came forcefully flying out of my lung. Other times it feels like someone is wringing my esophagus and it spasms and my neck too, but this could be left over from my 3'd bout with facial paralysis. I hope you're feeling better. 

    Sorry to hear about all the struggles. I'm still having problems toi. I have to drink water and swallow food at the same time so I don't choke. Sigh.

  13. These are by far my favorite movies to watch. I'm not too big into super hero movies. I prefer real talent. 

    Top 2 martial art movies of all time for me. 

    1. Legend of drunken master(1994) - Jackie Chan

    2. IP Man(2008) - Donnie Yen. I love the whole franchise but the first one is a masterpiece.

     

     

  14. 8 hours ago, outofadream said:

    Thank you @Pistol for the advice on the holter, I hope it tells them something about all this. Yeah, they told me that the tilt table showed vasovagal syncope as well as POTS too. I hear you on the usual suggestions never helping much...in the past I think I got some benefit from the beta blocker and compression, but during this relapse, nothing so far seems to be making much of a difference. The very wishes to you too, I definitely hope you get more relief from all of this!

    What is your blood pressure when you are feeling normal and what is it when you are feeling faint? I take midodrine to boost my BP. This weekend my BP was really low for my standards. 104/68. Usually it's running high. Might be because I just increased my carvedilol dosage. Not sure. But I freaked out a bit and took midodrine to bring it up. My BP is all over the place so I have to keep an eye on it. Such a pain.

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