Symptoms Changing...so Disillusioned!

[s-pot]

I havent posted on here in quite a while as I was doing sort of okay!

My specialist started me on Florinef last May and it was a wonder drug for me. I responded so well to it that they thought It would be possible for me to reduce my dosage to .05mg in Nov and try to come off it by this May. (Apparently they dont like women of my age (27) being on it for more than 1-2 yrs??

It didnt go too well anyway! I tapered down to .05 over a couple of weeks in Nov and went from bad to worse...symptoms all came back with a vengance. It was horrible.....so up I went again to Floinef 0.1mg before Xmas and Bam...felt great!

The end of January out of the blue the severe dizziness started. My POT's presyncope symptoms have always bin mainly nausea, vomiting/severe wretching, some lightheadedness, sudden extreme fatigue...that usually all resolve as I have my head hanging over the toilet! Never really syncope'd!

Now the nausea/vomiting type symptoms have become less and I am v near fainting much more. Standing still on my feet today I came very close to it 3 times.....it happens quickly....I feel like the blood is draining from my head...everything starts to get fuzzy ...black dots. Luckily ive had enough time to manage to sit pretty quickly and drop my head which resolves it.

I had a tilt table test last week (my 3rd) that was HORRIBLE! Ive never fainted on it before...but did this time. BP crashed from 129/84 HR 69 to 70/52 HR160 within 8 mins.

I seem to be much worse since the tilt table...has anyone else found this?

Also can anyone tell me have they experienced such a drastic change in symptoms suddenly.. for the worse?

I am so disillusioned at this point. This change in symptoms since January means I cannot continue with my work. I am a Midwife and love my job. Where previously I could manage my POTS symptoms and never fainted or felt like I was going to I cannot say now that I wont faint and the risk is too high in the job.

The doctors I am dealing with keep telling me that this thing usually resolves over a couple of years and my body will learn how to keep blood volume up without the florinef....im not so enthusiastic!! Im over 3 years diagnosed and its showing absolutely no signs of improvement.

I dont know nor have ever bin successful in trying to get the doctors to figure out what is the underlying problem causing POT's .... they dont seem to 'work' that way....its more of a treat the symptoms and hope for the best scenario it seems.

I dont know a huge amount about Mast Cell activation syndrome but from what I have read I am suspicious that it may apply to me! Just dont know who would I go to about investigating? Or what type of tests are done to rule this in/out?

Sorry folks about the big long ranty type post!! Just very fed up of POT's at the mo and in one of those 'hating chronic illness' phases that im sure lots of ye can identify with!! Its a struggle to always keep the sunny side out....esp when most people havent got any understanding about the illness at all!

[Rachel Cox]

Hey s pot.
I am sorry to hear about your frustrating turn of events. I have had swings many times into worse territory, then better, then worse; it seems to be the MO of POTS. The swings are slow and frustrating and often meds don't cut it. The upswings seem shorter and less 'up' than I would like! Ultimately it comes down to the fact that POTS is not an easy thing to treat. You are so strong to cope as you do. Hang in there, stay positive and I hope you will see some improvements soon. I am sorry to hear about your work... mine has gone by the wayside lately (I teach) and I feel so sad about that. I just hold on to the hope that one day someone will figure something out and I'll get back to it. There is so much more research being done now than when I was first diagnosed that I feel really hopeful. I don't know anything about MCAS but plenty on here, do. I'm sure you'll find new avenues to research in your quest. Gawd, your stats on the TTT are awful, you poor poppet!
Just wanted to say hi and send you some empathy.
-Rach

[Kay107]

Sorry to hear your symptoms have gotten so much worse. The same thing has been happening to me. I have had POTS for 21 years now (I'm 30), was finally diagnosed 7 years ago. I have always experienced an ebb and flow of symptoms, but a little over a year ago I got much worse and it has not abated, getting even worse in the last month. I suspect mine will be lifelong since I've had it since childhood but it supposedly does resolve itself in people who develop the condition as teens or young adults, so hopefully that happens for you!

[looneymom]

Hang in there s-pot. Just when you think you have seen it all, another symptom appears. Our cardioloist has used all the first line of meds for POTS with my son. However, they don't seem to be keeping his symptoms under control. So we are in the process of weaning off meds. to try new ones. Also having other blood test ran to check for autoimmune problems. If you suspect something is causing your POTS, the best thing you can do is find the articles to support your theory and take them to a doctor who is interesting in looking at other causes of your POTS.