Sea otter

1 hour ago, MikeO said:

@Sea otterI tried using a wedge pillow and for me it was very problematic to use and lost plenty of sleep using (two of them side by side).

I kept working my way off the wedge pillows and had to kept adjusting my way back on them. i ended up buying a body pillow to help keep myself positioned up on the wedges. over time my lower back started hurting. i have to assume i was putting pressure on the spine as it is the point where it was bending for the elevation..

 

 

Thanks for response. 

I know this is individual but I was wondering on what kind of pillow are you sleeping? I had thin anatomic pillow for a long time but since POTS I feel like my body is longing for something higher. I have tried a lot of pillows but didn't find anything yet. I just kinda put thin pillow on my anatomic one and form it like wedge pillow and feel better sleeping on that but my neck is not satisfied. 😊 I was thinking to try wedge pillow. 

@MaineDoug I feel your frustration. Sometimes it's rough, both physical and emotional. 

Unfortunately a lot of people think if you will eat and live healthy, you are supposed to be healthy. But there is no rule. Healthy people don't understand that they are healthy because of God's mercy. 

Hope today is a little better day for you. 

1 hour ago, DanteMccoy said:

I hear you, and I'm really sorry to hear about your struggles with POTS. It's incredibly tough dealing with the constant challenges, treatments, and setbacks. Just know that you're not alone in this journey, and there are others who understand what you're going through.

Thanks for reaching out and support.

@Pistol thank you. I also take at first a dose much less than the lowest dose available. 

Well, for now, according to my doctors, I don't have nothing more to try. My country is unfortunately limited with some medications so I am trying to find ways to get medications from other countries.

I don't react good to meds. I was wondering for how long do you guys try new medication? I have read that some people notice difference immediately after taking some medication or in few days. Is it worth to try some medication for few weeks, even when you feel worser than before and don't feel improvement at all?

On 2/12/2024 at 12:58 AM, Jyoti said:

I have been diagnosed with ME/CFS as well.  Sometimes I wonder if that is accurate, if perhaps I simply have POTS. 

Glad you mention this. Because I see so many people telling POTS is not as bad itself. I am aware that combination of POTS and ME must be brutal. But those 2 conditions separated can be brutal too. I was diagnosed with POTS and before that one dr thought I have ME. But symptoms are so similar so I think this is simple POTS, like you also said. It is definitely confusion between POTS and ME. 

@Jyoti just few minutes ago I saw you have different scale in US. So mine are negative according to US scale, I have checked. Thank you so much for reaching out and clarify. 

I was tested also for n-ACHR which came back (slightly) positive, but noone knows why they are positive. 😊 MG was excluded. 

@Jyoti I have test results and want to ask you something about it. Can you please check your result, if it says negative? I will send you private message with my test results so you can see. Thank you. 

@Pistol I am so sorry. That's extremely frustrating. What's wrong - pretty much everything. When I was in flare lately one family member told me some of my symptoms must be in my head and even thinks that doctors made a mistake and I don't have this condition. Typical gaslighting, in the middle of flare. Also people think you can cure everything these days, like someone has mentioned, especially with positive thinking. It's sad we have to hide how we really feel or don't know what to say - because there is SO MUCH to say. 

@Sarah Tee yes, US health care is expensive, from what I heard. My country has (kinda) free health care, we have to pay some additonal monthly fee, it's not a lot. But a lot of times you are forced to visit doctor or do exames at your own cost or else you will wait months or years for it. 

@MaineDoug all that you wrote is so true. Thanks for encouragement!

@MaineDoug thanks for support. I feel so vulnarable at doctor's office. My brain is not what it used to be, brain fog plus all the other symptoms. I can't say a lot of times what I meant even I have written, sometimes I sustain to say what I meant when I see how dr thinks, or I say too much. What a mess. 😊 

15 hours ago, Caterpilly said:

@Sarah Tee

yea I was really surprised my Dr was so dismissive of Dr. Novak's findings/conditions.  I don't know why my Dr doesn't think cerebral blood flow is what's causing issues in some people. It makes so much sense to me, and if Dr. Novak has the ultrasound etc readings to show it, it's like, how can that be denied?! Super weird. But... encouraging to hear about the other researchers identifying a similar thing. I hope it becomes common knowledge soon. It's bad enough when Drs dismiss patients, but then if some smart Drs finally start figuring things out that lead to new conditions and info, and other Drs just dismiss their findings, even when they seem valid, ugh... not good!  You see it happening sadly with Long Covid too... some believe and research is already showing things.. and some are out there just dismissing it. Or even with POTS, there's someone at I think NYU's Dysautonomia Clinic or something that doesn't believe in POTS and apparently not too long ago was trying to claim POTS is psychological and based on a fear of standing! Are you kidding me?!  That was crazy to see with all the documented POTS research/findings out there, and that was coming out of a supposed top university hospital. Scary and sad. Here's to hoping the Drs/researchers who really get this stuff will prevail! 

Sometimes I wish doctors that make claims how POTS is psychological could experience our symptoms for a while and see how it goes. 

@Pistol Thanks for your response. Doctor who believed me and suspected POTS was great, because of him my diagnosis was confirmed. But he said that he doesn't want to interfere about treatments and sent me to another doctor. And that doctor was not interested much in helping me. I have visited and contacted a lot of doctors. I don't know where elso to go in my country, noone from doctors is not interested much in POTS or they sadly think the "cure" is to drink plenty of water, eat more salt and exercise. I have tried some POTS tratments that didn't unfortunately worked. I will do some additional tests on my own and see if something else come up. When I got diagnosis I was so happy, I thought ok it's finally over, but then new problems arose, it's neverending story. 

I just feel so defeated. Have you ever shared your POTS symptoms to doctor (you finally found dr that knows something about POTS and hoped he will try to help you) and he thought some of symptoms are "in your head"? I think doctors are psychoanalyzing patients too much and blaming everything on them, especially if they are "sensitive" nature. No wonder why so many people suffer in silence and rather say they are fine (are hiding symptoms from doctors and families).

@Derek1987 I have this, but on the left side of my face. It started along with POTS symptoms. Usually appears when I am in flare, in hot environments, eating something that warms up body or just like that - for example when I wake up in the morning... Done a lot of tests and everything was fine. Then I found out a lot of POTS patients experience one side facial flushing. 

What's the worst/funny advice you've been given? 

Mine... to reduce water and salt and see what happens, just push through/what can get wrong, eat more/change diet, go outside/in the sun.

12 hours ago, BaPon said:

Not arguing with your perspective but wanted to share mine. 
 

I didn’t want to go to ER last week. But if I hadn’t I might not be here. I ended up is critical low phosphorus. We don’t know why yet (perhaps Vit D levels, perhaps low C02) but be careful of avoiding ER and assuming everything is okay. This article is helping with the differential diagnosis for my type of PoTS and the low C02 and Low phosphorus. 

J Am Heart Assoc. 2018 Jul 3; 7(13): e008854. 

Published online 2018 Jun 30. doi: 10.1161/JAHA.118.008854

Again, not trying to start any argument. Just be careful. My husband finally insisted I go in to ER. It took 3 days to get me stabilized. 

Don't worry. I understand what you are trying to say. 

@Water Lover similar. Mine was low before diagnosis, I was using once a week huge amount of D vitamin for some time, don't remember exactly what amount. Didn't checked levels after that. But I was not feeling good every time when I used it. Same with other vitamins. Also my neurologist didn't seemed concerned and he said this is not related to my symptoms. 

I know some people that were using it, and their calcium got high because of it and doctors told them to stop using it. So all this with vitamin D is very tricky. 

6 minutes ago, Amyschi said:

So glad you are tolerating it so far.  Can I ask what side effects, as I am super-sensitive too.  Also, your dosage and how long it was prescribed for?  Thanks so much for response.

I don't have side effects with this medication so far. I meant I had side effects with all the medications for POTS until now. I am taking 20 mg once a day. For how long, don't know, we'll see what will doctor say. 

@Amyschi I am on pantoprazole, from last week. I am also sensitive to medications and have side effects but for now everything is ok and it helps with acid reflux. I hope you will find something that will ease your acid reflux. 

@MaineDoug This is tragicomic. 🤭

According to doctors we should go to ED very often, with all symptoms we are experiencing. 

May I ask you are you on prednisone because of POTS? I know some doctors are treating POTS with it. 

@MaineDoug I am so sorry to hear that and for the all you went through. I understand your frustration. It's really sad and shameful. Thanks for reply. 

 @Sarah Tee  I am glad I made you giggle. 😊