Nin

I haven't had the burning for ages. Realised I was getting this when my body was reacting to something which was toothpaste with sls in it. It wasn't just the burning, it felt like my body was attacking itself. They got no answer for this. It could be something you're coming into contact with

19 hours ago, Sarah Tee said:

@Nin, I've been taking a small dose for a fortnight now. I did have mild side effects in the first week: nausea and a metallic taste in my mouth. I also felt non-specifically "stirred up" physically, in the way that you often do when starting a medication.

In the second week, all this disappeared.

To be honest, I struggled with the side effects the first week. Even though I would classify them as mild, coming on top of everything else, I found it hard, especially with chugging down extra fluids. (I have semi-failed bowel surgery that already makes me bloated.)

I actually stopped taking it for two days – I know this is bad – and had to give myself a pep talk and get a few hugs from family to get back on track. When I did restart, the side effects were less and then dwindled to nothing.

My endocrinologist started me on half a tablet (50 micrograms). She was concerned it might raise my blood pressure. It did not. (I don't have BP or heart rate abnormalities but my blood pressure is borderline high.)

I am to have a blood test on Monday to check potassium levels etc. If all looks good, she will increase the dose. If my potassium is down, I will start a supplement and she will look at raising the fludro in another couple of weeks.

Just my experience but I hope it is helpful for you.

Sarah (in Australia)

How do you find it helps? Is walking easier? I struggle to walk far, I get so exhausted. 

It really is ridiculous that they are making you feel this way. I know I said that saying "thee who feels it knows it" but a doctor should believe you, they shouldn't have to feel it. Another thing is when you've tried everything and it don't work they think you're the problem. Problem is nothing works for some people. They still don't understand pots completely or mcas to this day. You know most docs just think u only feel crap when u stand up and then when you're back down everything is all good. Pots comes with so many symptoms. Your body is just not functioning properly....got sod all about your mental health causing it. Any mental health problems is off the back of pots and sick of feeling like death all the time. Nothing worse than feeling people don't believe you and feeling you have to prove yourself as its impossible. They don't call it the hidden disease for nothing!

Been a lot of news articles lately about people developing pots because of covid. Maybe if its a more known disorder docs make takes us more serious 

On 6/9/2021 at 4:05 AM, Jane Sardelle said:

I've had pots for years with on/off flares. I'm going through a flare now and for about 3 weeks Ibhave whooshing heartbeats in both ears when I stand up and walk, also sometimes in bed when I turn over. It's concerning.

I get this. When I stand up its like a head rush and whooshing in my ears. Happen more when I haven't got my compression socks on. Also when I turn on my left said in bed it don't stop whooshing 

Don't he know passing out is to do with pots. He should know this at the very least. 

On 6/8/2021 at 10:09 AM, merkat30 said:

I have got email back with form to print of to complain I have. He was such horrid man . What women wouldnt be sad after a miscarriage u have be inhuman or just numb that why they wrote anxiety. I think he thought I was hypo women no idea what I suffered since 2012 at all . Like u said who use  wheelchair if  didnt need lot easier walk  somewhere than get pushed be a burden. 

I also had a miscarriage around that time. I took it really bad and had ocd after that. Wonder what they've put on my file. Not fair to bring any of your past up. 

I'm so mad he spoke to you like this (not surprised) its just too common 😒 I get what your saying with things on your file, its like they love to see this as they must think this will make my life easy ill blame mental health. You can't even get people to begin to understand how all this effects you. Its like that saying "Thee who knows it feels it" you have to feel what I'm going through to truly understand. Problem is they know a little about a lot, so pots probably only know 2 of the MANY symptoms, mcas 2 of the MANY symptoms. I remember on the phone I said to the neurologist I've had to get around in a wheelchair (not in one now but certainly feel like I need to sometimes) and she went quiet. I know she was thinking I don't need to be in one. Who in their right mind would want to willingly be in a wheelchair age 37 yrs old if they didn't need to!

You have to complain. He needs to understand what he said is so wrong. 

Doctor said to up the salt tablets to 2 tablets 3 x a day. If this don't work then try fludrocortisone. I find taking just 2 salt tablets dries my lips out and my face. Don't know how I will feel taking all those 

1 hour ago, RobinB said:

@WinnieBlue I just recently learned of a condition which can cause these issues we have with balance and things feeling like they are moving etc. 

It’s called Superior Canal Dehiscence. I was recently diagnosed with eagle syndrome for which I just had a surgery in a desperate attempt to cure my POTS and in my research I also discovered SCD. It’s worth looking into.

I have had major problems with my eyes and balance. They now think its something to do with the semicircular canal. Which wouldn't be a surprise as I've already had surgery  in that area. I think I must still have a hole or something there.

Wow 15 yrs! Well thats reassuring. I can only try and give it a go.

I was thinking of trying fludrocortisone/florinef but reading about the side effects it sounds brutal. Also it says do not have any vaccine whilst taking fludrocortisone as it can effect brain and spinal cord. Common side effect heart failure! Its just seems to have a lot of very bad side effects which will make me worse off 😕 

My problem is I can't lose weight. I've been trying to lose weight for 5 weeks. I've dropped my calories and exercising (only 10 mins a day). Im a size 12 so not a lot to lose but can't even shift a few pounds

24 minutes ago, KiminOrlando said:

@NinThere was no test other than what you had. Mine was negative. He made a clinical diagnosis which means he decided I have it without any positive tests based on my symptoms and my response to the meds used to treat MCAS. I'm hoping the PFT results will give his diagnosis some kind of scientific credibility instead of being an educated guess.

Yeah I'm expecting mine to be negative. Because my lips don't swell, get hives etc I don't think he thinks I could possibly have mcas. Its really weird with me because eating nuts causes me to have seizures and he was kinda scratching his head as why this would happen. Glad you're going in the right direction now. 

On 5/6/2021 at 8:34 PM, KiminOrlando said:

Just wanted to give an update... my Immunologist has tentatively made a clinical diagnosis of Mast Cell Activation Syndrome for me. The meds made my interstitial cystitis better, my migraines, my rashes, my lip swelling, and my breathing is better. I had an 18% increase in airflow on my last PFT. I'll be following up with him in 2 weeks with the PFT data so he has something that isn't subjective to back up his diagnosis. 

Thank you for the help.

What test did the immunologist do? Just seen one recently and had tryptase tested. Still waiting for results 7 weeks later! Wasn't reacting at the time so don't know if he's just gonna go off that 

I think you're a really strong person as you've been through so much. Just keep riding the storm...better days soon will come. Looks like you get sun, here it rains and rains and rains. Love the lizard pic, I love lizards (I have 3 different types)

So sad that trip done you in like that. So frustrating. But well done for going! That beach looks lovely....shame my beach don't look like that 😕 

Its weird but coffee helps me. I feel a mess in the morning and have 2 coffee's and seem to be more functional 

I find the slurred speech is when I've worn myself out being on my feet too long and it definitely feels like i haven't got enough blood going to my brain. Im always off balance (I have got probs with my ears mind) 

5 hours ago, POTSie78 said:

I have slurred speech and trouble finding my words that comes and goes. Actually how I finally ended up with a POTS diagnosis after years of unexplained symptoms was started when I went to the ER with signs of having had a stroke.  The first time I went to the ER for this I was diagnosed with psuedo seizures.

Thats what they diagnosed me with pseudosiezures. They got this wrong in my opinion. Do you still get seizures?

8 hours ago, Ashc said:

Have you had this checked?

My ears have been a problem for me. I've had 2 major operations on both ears, but wouldn't have thought my eyes are a problem because of my ears. I had a benign tumour in my ear and it ate through the bone that separates the brain and the ear. Im sure I still have a hole or something there as I'm still off balance and I had it repaired 1 yr ago now.

My eyes are just a nightmare for me. I already feel trapped and because of my eyes I can't read, sew or look on my phone. Seen a eye doctor and they think its my ears causing it. If I strain them too much they get really sore under my eyelids. I can't focus, can't look up, can't look down or turn them to the side without getting dizzy.

To be honest I've bought one off ebay for £6! Let's see how it goes. Can't see me tolerating it around my stomach 

Anyone find abdominal compression binders any good? I wear knee high stockings at the moment and can't be without them. I just thinking ahead to the summer so I can wear a dress. I personally can't see how it would help as the blood pools to the lower body 😕 

1 hour ago, Jyoti said:

I just got back from taking my 17 year old for her vaccine.  She has really severe asthma, so we have all been worried about Covid in her case.  She had to get her shot at a healthcare provider instead of a mass vaccination event because of her age.  For the same reason I had to be there--to give consent.  I was too sick to drive so we had to have someone else to drive us.  If it had been anything else, I would have cancelled.

The place was empty but the wait was endless.  We sat/paced for an hour and eventually I just had to lie down.  On the floor.  My heart rate was through the roof.  No other choice.  It was sort of funny to see the nurse's aide come into the exam room to give my daughter a shot and find me lying on the floor.  "No, no, I am fine....just a touch of orthostatic hypotension, sweetie...."

Oh yeah I totally get it when out in public then you got to get on the floor! That was me the other day in the supermarket & trying to phone my dad to come and save me. I tell you what the lights in these places don't help. I also have seizures (still don't know why exactly) so can't drive anymore, really miss my freedom.

Are you in the UK or US? 

I got mine done on 03/18. I suppose we were dammed if we don't and dammed if we do to get the vaccine

13 hours ago, CallieAndToby22 said:

Yea it's really hard to do but a lot of my friends have to take cool showers. Ugh.. One of my friends got into a hot spring one time and his heart was racing and he got really sick. 

Omg if I went in a hot spring I'd be on the floor!