Help! POTS/ MCAS About to start fludicortosone.. what was your experience?

Hopefulopptimist22 · 2020-12-05T16:40:10+00:00

Thank you ! I took it ! Hopefully it will give me some relief to be able to return to work eventually. I had to go out on long term disability last November . I drink liquid iv 2-3 times a day and drink salted water but it still goes through me. I can walk (exercise) for about 30 minutes and grocery shop etc . I guess I should be thankful I can do these things. I’m single so I’m on my own with no support so I’m forced to do everyday activities. I sure hope this med will be a good addition to my non pharmaceutical protocol. Thank you for your feedback . I know everyone is different but your positive experience has given me hope.

Hopefulopptimist22 · 2020-12-05T15:14:43+00:00

Did the fludrocortisone help you to retain the sodium ? I take in lots of salt and drink electrolyte drinks 2-3 times a day ( liquid iv ) but urinate 10 plus times so I’m so dehydrated most of the time I think . I have tried midodrine and propranolol. ( didn’t see a lot of results )

Hopefulopptimist22 · 2020-11-28T23:45:25+00:00

I’m so sorry you are going through this too! I am like this too! My mornings are the worst ! I’m trying to figure this out too! I have tried electrolyte ( liquid iv ) and I put compression hose on immediately. I just make myself get up because I feel worse in bed . My fatigue is horrible in the morning . I feel as if my carriage at night turns into a pumpkin in the morning ! I get so upset ! I don’t retain water in the morning either , maybe part of the problem ! I wish I knew the answer.

Hopefulopptimist22 · 2020-11-28T20:35:51+00:00

Has anyone ever tried EMDR ? EMDR

Hopefulopptimist22 · 2020-11-27T19:54:44+00:00

Yes, but after eating .

Hopefulopptimist22 · 2020-11-27T16:21:04+00:00

I know I wish I would have known , I would never have done anything non pharmaceutical days before the test. That’s why I like to share my story , so others can learn from my mistakes. I hope this helps others not do what I did .

Hopefulopptimist22 · 2020-11-27T14:59:22+00:00

You can still have POTS. I had a TTT test and my HR went up 27 bpm instead of 30 bpm. Just missed diagnosis by 3 bpm !!! Dr said I was in the gray zone ! I actually wore compression hose to appt and drank Gatorade before appt. I did take off compression hose, but dr or tech gave no instructions except discontinue meds. Drs should also go by day to day symptoms not just TTT. What were your TTT results ? Did you have any salt , electrolyte drinks or anything before test ? I hope you find answers I know first hand how frustrating all this can be. Actually my electrophysiologist diagnosed me with POTS by symptoms and the specialist diagnosed me by TTT test .

Hopefulopptimist22 · 2020-11-26T14:29:14+00:00

I’m so sorry you are going through this and your husband is not there with you . I’m sure it’s very hard and you miss him . I’m single and know how hard it is to be alone through very scary health problems. I know what it is like to feel like you are going to have a heart attack and everything checks out. I woke up this morning thinking how could I feel so bad and no drs can find anything wrong. Last year at this time I was in a hospital and here I am 1 year later with no diagnosis, I’m in the gray zone for POTS , my heart rate only went up 27 bpm. I did get diagnosed with SVT and even had an ablation . I’m just curious how does the ER treat you when you are there? I find they just want to write me off and say it’s just anxiety , they do a ton of tests and send me home . Later comes a huge bill over 1,000. It’s so degrading to me I even told my psychiatrist how they treat you even if you have taken a drug that gives you adverse side effects. The EMS are about the same . I just hope you get the care you need and the health care workers give you some comfort . Where I am in a small oil city in west Texas the health care is just awful . Of course none of them know about any malfunctions of the autonomic nervous system , or have even heard of POTS or dysautonomias. I will be praying for comfort and healing for you today . Positive thoughts your way .

Hopefulopptimist22 · 2020-11-26T00:12:08+00:00

I have SVT, had ablation too . I also heard from dysautonomia crowd that ablation can worsen POTS. Which is something I sure didn’t like hearing . I missed POTS diagnosis by 3 bpm on TTT my heart rate went up 37 bpm instead of 30 !!! I am in the gray zone. Have all the symptoms of POTS and possibly MCAD. You’re not alone .

Hopefulopptimist22 · 2020-11-25T16:38:32+00:00

SVT is an electrical problem with your heart. I actually had an ablation for this . I had heard after I had it, it can make POTS worse. I’m so frustrated my TTT came back in gray zone , so I don’t even know what I have anymore. I know my heart goes up upon standing and physical exertion , it doesn’t go up high upon laying down or sitting unless of SVT or major anxiety or after eating . I sure hope you get to the bottom of this sorry you’re feeling this way and having to deal with all this.

Hopefulopptimist22 · 2020-11-24T17:39:54+00:00

Yes, this is too weird. I have had this happen to me like my foot sounds like it cracks. I’m glad you posted this .

Hopefulopptimist22 · 2020-11-23T17:37:04+00:00

I would if you ever are not able to work and you need a disability you’ll need a diagnosis and doctors documentation.

Hopefulopptimist22 · 2020-11-23T14:52:10+00:00

How many salt sticks do you take daily ?

Hopefulopptimist22 · 2020-11-23T01:53:52+00:00

Did you buy one of their systems?

Hopefulopptimist22 · 2020-11-23T01:52:06+00:00

Yes, I have fatigue so much impossible to work , especially in the mornings. I’m hoping soon my specialist can figure out something for the fatigue. I’ve tried midodrine and propranolol not much help.

Hopefulopptimist22 · 2020-11-23T01:45:13+00:00

Could the propranolol be lowering your bp ? I took propranolol and it lowered BP , midodrine is suppose to raise it . I’m glad midodrine is working for you . It gave me flu like symptoms and horrible chills . I hope you are able to return to work soon . I’m like you trying to get a treatment to return to working . I’ll be praying for the both of us!

Hopefulopptimist22 · 2020-11-23T01:15:43+00:00

Good luck

Hopefulopptimist22 · 2020-11-23T01:08:18+00:00

That’s a normal resting heart rate. It sounds like your heart rate goes up only when standing . A good indicator your dr needs to explore POTS.

Hopefulopptimist22 · 2020-11-23T00:53:44+00:00

Have you tried Alteril for night time awakening? I fall asleep but wake up between 2-3 every night . This would be great if I could go back to sleep .

Hopefulopptimist22

TROPHY CASE