Nin

Are you in the US or UK?

I just can't chance getting the booster as any vaccination's seem to make me worse. The flu jab November just gone was the worst. 

On 5/31/2022 at 5:12 PM, Den said:

Hello everyone - just wanted to reach out to you all as there seemed to be so much kindness on here when I was trying to find answers.

As of yesterday I have been diagnosed with POTS. I was almost certain I had this condition but having it put in black and white by a specialist has left me reeling a little.

On the one hand I am celebrating having answers after so long...something to fight....somewhere to start. On the other hand I am a little overwhelmed and scared. I go from some kind of euphoria to tears and then back again every few hours. On a major plus note I have found the most wonderful compassionate doctor and I feel so very grateful for that.

I am not really asking any questions....just reaching out to a community of people who I know will understand at a time I feel in need of understanding. 

And perhaps you can share your experience of how it was for you when you were newly diagnosed.

Thank you for listening.

I felt that way as well. I still do 2 yrs after go through all different emotions 

5 hours ago, Pistol said:

@MikeO - in the past when I got extremely unstable after a few days I would have a seizure and that would reset the ANS. Not sure why. I could see how electricity COULD influence our nervous systems, but theoretically it could also be the scare you might have gotten when it happened ... ?

Funny you say that pistol how after a seizure it seems to reset the ans as I feel like that sometimes. 

I have been diagnosed with pots for over 2 yrs now and recently antiphospholipid syndrome. I was tested for lupus (which was negative) but positive for antiphospholipid syndrome. I couldn't believe when I looked into it the connection with pots syndrome. One doctor said everyone with pots should be tested for this also. It causes a lot of neurological symptoms which I get. Im just wondering if anyone else has the both and did the meds for antiphospholipid syndrome help with pots symptoms?

This condition seems to be very misunderstood just like pots. So another rough ride of finding a doctor who understands what to do

Hi

I have pots and been having seizures for over 2 years now. I still can't find anything to stop them. I wear compression socks, drink lots of water etc. I've tried sodium tablets didn't work, Fludrocortisone didn't work and now currently on midodrine but on a low dose and not working. Before I have these seizures I have these weird movements, body twisting, shoulders shrugging, hand and face movements. Then I know a seizure is coming. My BP is low and I just can't get it up (temporarily with a coffee) but when a seizure is coming my BP shoots up. 

One thing I have tested positive for recently is antiphospholipid syndrome and I was amazed with pots connection and antiphospholipid syndrome. With this condition the blood is too sticky. So yeah makes sense with the blood not able to flow to the brain. They only usually test people for this if they have lupus (i was negative for lupus) lots of neurological symptoms with this so hoping i may finally gets the right help and live a more normal life!

1 hour ago, Pistol said:

@RecipeForDisaster @MikeO @Nin - I am very sorry that you all feel you need to hide your illness. Please know that at least here you are welcome to say what is on your mind and heart. I - for one - totally get you, and I am proud of you surviving every day. ❤️

Thank you pistol!! 

8 hours ago, MikeO said:

What i have found that works for me (remember that's me) is not to bring up any of my limitations outside of my kids and a couple of care providers. If the subject does come up outside of my circle i just politely don't answer and change the subject (usually works). 

Well I've decided this is what I'm going to do as no one needs to know my business really. I think I only tell people  because when people stop to talk I need to give them the heads up in case I need to go quick because I can longer stand 

11 hours ago, Pistol said:

I am so sorry @Nin, I too have experienced rude comments like that. Once I had to fly and can only do that with wheel chair assistance. When I came to the security check point I stood up so they could check me easier and the checker said:" here's another one using the wheelchair service as taxi - if you can stand you can walk".  I was taken aback but answered if he would like to be responsible for me passing out halfway to the gate and then not being allowed on the plane. He just rolled his eyes ... 

Thankfully after 10 years of this my community, family and friends are aware of my limitations and no longer question me about it. But it took a long time because - like you - I appear totally healthy on the outside and could fool many people on a good day, but on bad days I hide in the house, so not many people see me when I am at my worst. 

Please do not take these comments to heart. There are many rude people in the world and if we let them get to us we could really get depressed. Remember - you did not ask for this, you do not deserve it and you are struggling every day to function. But people cannot see that, so it is a struggle only known to yourself and others in your shoes. Next time someone says " there's always something wrong with you" hold your head up and say: "Yes, there is, and I am proud that i am able to stand here and talk to you!" 

Yeah I can relate to the airport scenario, everyone was looking at me

Like you said when you're bad you are home and no one see's you like that.

Wish I would have thought quick enough to say something back. 

One thing I know having pots will make me a tougher person in the end! 

They said my seizures were down to a conversion disorder. That was before I was diagnosed with pots. I don't think that is the case as so many people with pots have seizures. What triggers yours?

Sorry I'm no help with regards to doctors as I'm in the UK. Just wanted to say I take my hat off to you holding down a job with all your struggles. I understand the depression side with this illness because everyday is a struggle. I hope you find a good doctor!

I'm pretty upset today because I was in the shop and seen someone i knew and in conversation I said I haven't been out really anywhere as I struggle with walking. They then turned round to me and said "there's always something wrong with you". I said well its the same thing/problem (pots) its not like I'm saying i got a new set of problems. They have no idea of my struggles, how its changed my life. It just hurt that it was someone I know and made me feel like I moaning for nothing. Because they don't know how terrible I feel just be upright and I've got a firework of symptoms going off as I'm speaking to you but trying to keep everything together. Pots really is a hidden illness!

Sorry to rant. But please someone give me some good advice on how to be more head strong and not to care what other people think!

Just makes me wonder if there is more to it like chronic fatigue syndrome as well as pots. I know with cfs you got to be very careful how far you push yourself otherwise you make yourself really ill. It does seem to coexist with pots

On 1/18/2022 at 1:28 AM, Sushi said:

Yes, that sounds like post exertional malaise, commonly known as PEM. It is typical for many. So the trick is to learn your body’s signals as to when you are crossing your line. It took me a long time, but now I recognize my signals, though they are subtle—a feeling in my chest is one of them, sort of a hollowness, but it is probably quite individual. I also did cardiac rehab and was able to double my exercise capacity over three months. They had me exercise on equipment for 3 - 5 minutes, then rest for 5 minutes. after each segment they measured my vitals. They increased the time and level VERY slowly, and I think that is key.

If it is PEM that is making you feel so terrible from exercise is it safe to keep going? Or will it cause more harm. I get so exhausted from walking and now have a mobility scooter for long distances. Im just worried I've given up on myself and have a big problem with what other people think of me. Like they might think does she really need a scooter and then I'm back to questioning myself again. I'm just thinking what if pushing myself is making me worse.

3 hours ago, MikeO said:

My mum used one. It did help with her aches and pains. Not sure if this is contradicted for pots but may be worth a try. 

Yeah worth a try can't see it being harmful. 

Looking to try the revitive circulation machine (the one you put your feet on) are these ok to use if you have pots? Do they even help?

13 hours ago, MikeO said:

I know the episodes are linked to a drop in blood pressure and eating can do that to me (had an episode eating lunch yesterday) This morning my bp was low again (87/69) went to blow my nose in the bathroom and had an event it did feel like my heart was going to explode it was beating so hard and my legs started to give out. I did get off my feet right away (glad the toilet seat was down) and avoided the episode getting out of hand. 

Yeah I'm wondering the same thing for me if its a drop a blood pressure is causing my worst events. I wish I could catch it at the time these things happen. Do you get really bad dizziness most days? It pretty much stands at around 106/61 most days don't know if that's normal or not, don't know whether to even mention it to the doctor.

17 hours ago, MikeO said:

Hey @NinI doubt it is what i am eating. Yes i do get really hot before an episode.

Yeah with me lots of other things cause these episodes its just food was just another trigger for me as well

48 minutes ago, MikeO said:

well still having issues. One more near event. All i can say is i ate an hour before got off the recliner and it felt like my heart was going to jump out of my chest was dizzy and lightheaded. I did make it to the kitchen chair and recovered. Also uploaded the ILR data again. i am starting to have no faith in this thing.

Do you think it may be to do with what you're eating? When this happens do you get really hot?? Just wondering as some things I eat i react to can range from 10-60 mins after. Usually my heart starts thumping 1st, I just feel really weird like I'm going to faint and then I start getting hot.

On 12/15/2021 at 12:08 AM, MikeO said:

@NinThank You for the response. My feet do get really cold as well. Just like the rest of my body. I am suspecting it is BP related. I am sure the whooshing is related to pooling of blood in the legs.

Yeah definitely bp problem (must be when on the low side). The whooshing is the blood pooling, proves it as I said when my compression socks are off it happens more.

Mike0 my blood pressure is practically the same readings as yours. Im just up and down and I'm still trying to figure it out. My feet are constantly like blocks of ice I just can't warm them up. Funny you said about the whooshing as I get that when I stand I always thought it was a problem with my ears. The funny thing is it hardly happens with my compression socks on and now I've taken them off and the whooshing is back. 

6 minutes ago, MikeO said:

@NinThe half-life of a drug is an estimate of the period of time that it takes for the concentration or amount in the body of that drug to be reduced by exactly one half (50%).

I have included a link that explains it.

https://www.drugs.com/article/drug-half-life.html

 

Thanks for that Mike0

18 minutes ago, MikeO said:

@NinDrug half life does come into play. I would know it if i missed my metoprolol and lisinopril my heart would be off to the races. Since i changed meds Carvedilol and Amlodipine if i am slow or mis a dose i am ok. The Amlodipine has a half life of 30 to 50 hrs.

What does drug half life mean? My heart is actually racing now when I get up so its shot up now. Maybe it has worn off.

Just read that bisoporol can stay in the system for 1-2 days after you stop taking. So it must still be in my system I suppose 🤔 

13 minutes ago, cmep37 said:

Are you on other meds for POTS as well as the BBs?  If so could they be enough on their own to control your HR?  Or maybe there was enough BB still in your system to stop big HR rises - do you take extended release BBs?  How did you feel - still POTSy or normal?  What about your BP - how was it?

Im not on any other meds. I'm not sure if its extended release, I'm on bisoporol. No I don't feel normal still felt rubbish standing etc. My blood pressure was normal. Maybe like you said it may stay in your system.