DizzyPopcorn
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Posts posted by DizzyPopcorn
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31 minutes ago, Wufflebear said:
Sorry for the delay in responding. I had a port placed on Thursday, and they nicked my lungs, so I suffered pneumothorax (collapsed lung) and was in the hospital. Luckily it stopped collapsing at 15% so they did not need to do another surgery. My doc is Dr. Feldman in Bend, Oregon. He is great! I believe they did 20cc and injected it right in the middle of my spine. Just one injection. It was all done under MRI and followed by contrast to make sure it was in there.
Wow im so sorry to hear that. Glad you're still around. How the h*** did they nick your lungs???
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2 hours ago, bombsh3ll said:
It is a symptom, not a disease. Something is always causing it, & a condition is only ever idiopathic when all known causes have been looked for.
B xxx
Nicely said
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3 hours ago, MomtoGiuliana said:
I get symptoms lying down as well. I don't think this is unusual in POTS. I also had tachycardia at night that would wake me up when I was early in my diagnosis. I still get it at times, and my hr can often remain high even when I am asleep (eg in the 80s bpm). I did not realize this until I started wearing a fitbit regularly to bed. My hr during the day when seated is typically in the 60s. For me lying down or standing seems to trigger symptoms (standing moreso--obviously, I guess).
Did your symptoms come back @MomtoGiuliana? I thought the b12 did the trick for your last flare
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5 hours ago, KaciCrochets said:
Truer words were never spoken, my friend.
Wish i was wrong
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57 minutes ago, Pistol said:
i recently had to see a Rheumatologist to get checked for autoimmune issues. I asked him about POTS being an autoimmune related condition, especially about these antibodies. he smirked and said it is just another theory. I had the distinct suspicion that he simply did not want to consider this possibility because he did not know anything about POTS and did not want to have to be responsible for it. ... I talked to a FNP who was writing a paper on POTS and had done a lot of research on dysautonomia. she told me that the autoimmune theory is becoming more and more studied and they find more and more evidence about it. However - as with anything POTS they have to have hard evidence to convince the medical community or else they get eye rolls. That might be a reason why there is talk about it and studies being done but as of yet there still is no hard proof of it. They are looking though.
And they wonder why people turn to alternative medecine and lose faith in doctors.
Not all of them are like that of course. Many really try to seek their patient's wellness, but im telling you, they're just a bunch of money maker in suits.
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7 minutes ago, KaciCrochets said:
I waited seven months to see my dysautonomia doc. Thanks to insurance changes I can no longer see her so I got a referral to neurology a month ago and they are still triaging so I don't even have an appointment yet. They don't have any doctors that treat POTS so I'm afraid they won't make an appointment for me at all, even though I am having new symptoms that could be anything from neuropathy to a brain tumor, not necessarily POTS. I am about to schedule with a therapist to talk about how I have these unbearable symptoms and nobody will help me. At least I know I will be able to get an appointment with psychiatry.
Seriously, what the h*** is wrong with life on earth. It shouldn't be so fricking hard being alive.
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38 minutes ago, Pistol said:
@Random-Symptom Man - I used to get hyperadrenergic flares at work and would lock myself in the bathroom, lights out, lying on the floor with my feet up on the wall. Yeah - darkness, quiet, hiding .... it all works. Anything to stop stimulation.
What is the physiological reason for those to happen? I know its due to the dysfunctional autonomic system, but like, physically speaking : What makes the body release adrenaline versus X stimulus?
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10 minutes ago, Random-Symptom Man said:
I totally agree that living by exact numbers is a bad trap.
Yet, I am a data person - or at least I was before cronic brain fog set in. I have found some rough numbers that help me keep from getting destroyed by dysautonomia. It's usually not a specific number, but a change in numbers that I look for.
Because I often feel like ****, it can be difficult to tell when my body will react even worse and when it wont based just on feeling. I am working on this, but it's slow going.
I spent most of my life ignoring things like pain, fainting and gut problems. No surprise that 1) it caught up to me, and 2) I am rubbish at recognizing early warning signs on how my body feels.
I know that if my HR is variable, it's best not to try to sit up. If my HR doesn't drop most of the way to my supine resting HR after a workout, I shouldn't stand up. If I don't drink at least 20 oz of fluid to get up in the morning, I'm in trouble that day.
In this case, I wasn't as interested in the exact numbers. I was interested that either closing my eyes or sitting in the dark could be used to help bring my heart rate down. Every bit helps when things are bad, or when I can't lie down.
Deep beathing can also help me (5-12 bpm). I use that often to feel better. Ice on my wrists sometimes helps (0-20 bpm on a hot day). Now I'm going to add closing my eyes to my coping routine (rather than distracting myself with this light-generating screen in my hands). I'll see if it actually helps...
Were you perhaps a programmer or big data analyst before this happened? Your way of thinking is the same as mine. Im a software developer and worked on heavy databases in the past - data was something i loved, be ause you could predict trends with it.
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Unfortunately, ive been doing this for the past 2 years. I had to convince my doctors that something was wrong with me. But at least before it was manageable. Right now im not feeling too well.
My poor mans tilts are close to those of pots. It depends on the day. Sometimes its 20, sometimes its 40.
1 hour ago, yogini said:get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia.
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59 minutes ago, Pistol said:
@Random-Symptom Man - every person’s HRVaries greatly by stimulation, light or noise is one of them. We are not robots, HR and BP are just numbers to show how we react to our environment. As long as Vitalsigns are within normal limits it is OK to have fluctuations. Even brief episodes of high or low are acceptable. Do not fall into the trap of comparing numbers - it is way more helpful and productive to go by how you feel. Believe me, I have learned this lesson early on.
This is true. Weirdly enough, sometimes my heart is 105 (which is high for me) and i feel great. Other times its 90 and i feel awful.
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Unfortunately im not from the us, so thats not an option for me. Im not rich enough to see anything on the us side. Im supposed to have a specialist see me in Montreal that knows about pots within the next tree months. Ive been waiting 2 already.
It should be free as well.
If this doesnt work or the doctor decide he doesnt like my face im pretty much dead. There will be no one else on my side to check my symptoms out. We dont have many autonomic specialists here.
Ive already been to 3 different ER for my problems that got worse and all i got from them was :
Its anxiety, it will pass with x pills
Its viral, it will pass soon
Go back to your primary care giver
I even had one guy straight tell me "stop wasting my time and come back only if you feel you are anout to die. Before then, stop wasting our ressources"
Wow thanks a lot doc.
**** them all.
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Some people just dont deserve their jobs. Your story is a prine example of it.
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Title says it all... So tired of having symptoms and waiting for a specialist. Im still not sure if i have pots or something else and im feeling like crap. Waiting feels like an eternity.
How long did you guys have to wait for a specialist?
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What a ******* rude person. I'm sorry you had to experience that. Had i been there, i would've given her h*** even if my next 3 days would've been flared.
Do NOT make this your fault. You didn't choose your illness or this situation, and nobody should discard you for what you are and what you feel. Some people just hate their jobs, and some people are downright evil. Usually i give them my thoughts, because they deserve it.
You might want to consider adding security cameras in your home. Next time she wants to start an argument on your condition, you can report her for misconduct. No way this is the way you're meant to be treated.
I'm again sorry that you had to go through this.
Hope you have a good evening regardless -
I also understand where you're coming from, but to me it's still a great discovery that they can replicate dysautonomia and revert it. Thats impressive.
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While its true that the forum is 16 years old (and pots has only really been around since 1993 officially) i don't understand your last point. Are you suggesting that this study isn't new at all and they knew about it years ago?
Treatments options are the same because the knowledge about the disease was still the same. Thats why treatment has stagnated.
I still remain positive about it.
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7 minutes ago, FileTrekker said:
Looks promising. We might have a cure for some of us in about 50 years then.
Why 50 years? It is possible to have a new drug release under 10.
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Hi all. Following the study from dr. Grubb that i posted a week ago (pots has an autoimmun in 89% of the cases), another one on the same subject was published. This time though, it is much, much more interesting.
They successfully caused dysautonomia (pots) in 8 rabbits (confirmed by TTT) AND reverted the process entirely (blood pressure and heart rate).
Please read more here : https://www.ahajournals.org/doi/10.1161/JAHA.119.013006
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Side story here, but about thinking of something wonderful, i had a bad night and for some reason thought of past summers where i was working on my car with the stereo blasting some good music and a sunny temperature. Those were the good times. It cheered me up because i think i can get back to that once i receive appropriate care
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1 hour ago, lieze said:
Just checked it middle of night. I am 96/53. I am not trying to fixate on my blood pressure I am more interested in what the ranges are so I can tell the doctor to determine if any treatment would be appropriate or contraindicated based on how low I dip naturally.
Thats totally ok lieze. I do that as well sometimes when im trying to find a pattern. What's important is to not get carried too much by the number.
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32 minutes ago, Wufflebear said:
I would look into it. https://spinalcsfleak.org/pots-spinalcsfleak-or-both/
Im not diagnosed for pots either atm, but i suspect it.
I do not have a headache standing, but bending accentuate head pressure
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Np lieze, in fact im sorry if i came a bit cold in my response. Its just, i know where you're coming from. I've done exactly what you did (up to calling an ambulance!) and nothing ever happened to me.
I know its hard. Really hard. Try to ask for a xanax or ativan prescription from your doctor. That always help me in a pinch if i have a panic attack
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Ok but i mean, i dont have EDS. Not that i know of. A csf leak doesnt just "happens" like that i guess?
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Pardon me but, what does "biofeedback" means? Is it kind of like meditating?
Bupropion and high blood pressure
in Dysautonomia Discussion
Posted
Bupropion is an antidepressant that stimulates. Ine of its primary side effect is anxiety and increased alertness, from what I understand. Both those can increase your blood pressure. What was your bp before starting the med?