Being diagnosed with POTS was such a long and
extremely stressful, upsetting process. I had started to faint and was feeling
dizzy for around a month. I had been to my doctors and 3 different hospitals and
all I was told by medical professionals was that I was suffering from anxiety before
being placed on anti-depression tablets. While this was going on I was
suffering daily from chronic dizziness, chest pains and palpitations. Deep downI knew that while I did feel anxious, this was something more.
In May I went on a family holiday to Spain, which I was
so excited about, but it turned into a disaster. I collapsed in our hotel room after
two nights and spent the remaining time in hospital, which was a very scary
experience for me and my children. unfortunately even these doctors insisted i had anxiety.
Two days after arriving home, I had just taken
the kids to school when I collapsed at home, my sister called an ambulance and I
was taken to A&E at Chelsea and Westminster Hospital. The hospital was brilliant
and really concerned about my symptoms, keeping me in hospital to try and
figure out what was wrong with me, I finally felt that someone was taking me
and my symptoms seriously. On my second night in hospital the doctors noticed
that my heart rate went to 230 and sent me straight to a specialist heart
hospital; the royal Brompton. I was there for a week and had a lot of tests
done, one of which included the Tilt Test. My tests came back positive and I was
diagnosed with Pots I later had an EPS study and was diagnosed with AF (Atrial
Fibrillation), which is a heart arythmia.
I am still learning and adjusting to having Pots
and at times feel sad and scared on how my life and my children’s life will
change. I want to feel normal again and do normal things but until that day
comes and with the help of my brilliant pots nurses and consultant at the royal brimpton i feel that it is about adjusting to Pots and learning to maybe become a new me
Hi Tamara,
ReplyDeleteI came across your blog from the POTS recovery group on FB.
I must say your story is so familiar to mine, except I haven't fainted but have a lot of pre fainting. And the dizziness well lets just say I wish I could kick it up the backside lol.
I was DX at Royal Brompton too and the syncope nurses are lovely. I'm still pretty much housebound, but I'm positive I'll get better soon.
I wish you all the best on your journey with POTS hopefully one day we can kick it's butt! :-)
Take Care
Christine.
thankyou so much for your comment it is really nice to hear from someone who has been in the same stiuation as me with regards to being in the same hospital and having the same nurses.
ReplyDeleteI feel like i am getting worse at the moment but i am also confident that i will beat pots and get back to normal.
Can i just ask what medication you are on and if it is helping you.
Tamara
Hi Tamara,
ReplyDeleteI was diagnosed in Feb this year, and I too became worse.
First I started on salt and water and found that it wasn't really helping.
I was fatigued all the time and couldn't stand up as I felt as though I was going to faint. I also had a lot of cognitive issues and found it hard to follow a conversation as moving my head would make me dizzy.
I initially wasn't under Royal Brompton so had to wait for an appointment with my cardiologist. Who started me on 2.5mg of Ivrabradine.
I then asked to be referred back to Royal Brompton as no one really had a clue what they were doing and Dr Salukhe upped my Ivrabradine to 5mg twice a day. Although I only take it once a day a still struggle to take 5 mg as it makes me very fatigued.
My heart rate is better, but if I'm honest when I'm resting it's not really a problem.
In terms of dizziness and cognitive issues I found going on a gluten free diet really helped with the dizziness.
I have a lot of gastric issues and find they make the POTS worse.
I'm still housebound and unable to walk or stand for any length of time and have some strange symptoms.
I have good and bad days and I suppose I'm still learning to live with it.
Overall my dizziness has improved but I'm still not back to normal. I'm just trying to live with it as best I can really.
Feel free to add me on FB I'm Christine Burin. But will come up as
Christine Blessed Burin.
Take Care.
omg i can not believe how similar our experiences have been and the fact that we were both diagnosed with in a few months of each other. I am also under Dr Salukhe. I also find it really hard to follow a conversation as i feel dizzy and confused at times. I am definitely going to try going gluten free diet and see if that helps. I just looked at your blog and saw you have a son called Kai that is what my son is called. I will defiantly add you on fb
ReplyDeleteOh wow that's mad! But good choice of name lol.
ReplyDeleteCan I ask do you see Dr Salukhe regularly? I had one appointment and he then told me to keep in touch with the syncope clinic, but there was no follow up appointment.
And this illness is mad I kind of feel like I'm not under anybody's care.
well i saw him when i was in hospital and then i had a follow up appointment the following week and then i kept in touch with the nurse. But last week end i ended up in hospital and the doctors at this hospital called him and he has booked me an appointment for next Monday. I would advise to keep in touch with the nurses as they do pass all your concerns to him and they are always my first point of contact with him .
ReplyDeleteI completely understand how u feel this illness is carzy and i at times find it unbearable.
I will let you know how my appointment goes on Monday and see if they have another plan,.
Just out of interest do you suffer from aniexty as since i have been diagnosed i have become so anxious
I should keep in contact. I know it's silly but I hate to feel like I'm being a nuisance, which is stupid because Andrea and Kiki are lovely.
DeleteSorry to hear you was in hospital. This illness is mad I've been in and out of A&E like a yoyo.
Anxiety is a big factor for me. 1st of all POTS is a dysfunction of your autonomic nervous system, which regulates your fight or flight response. I find I'm very sensitive to things that sets it off. Adrenaline, stress anything. I sometimes feel like I'm having a panic attack without the panic if that makes sense. I can also be minding my own business then all of a sudden become extremely anxious for no reason.
I also get these really surreal feelings in my chest that I can't really explain.
And then secondly I think this illness makes me anxious, the symptoms are so varied and weird that it's frightening.
I don't think there is a day that goes by that I don't think I'm going to die.
Sorry for the long answer :-)
no thank you so much for the long message it really helps me to know that im not the only one feeling like this. I also feel like to i panic over having pots and when i get chest pain i panic that its not just pots put im having a heart attack. I also think about death on a daily basic which i am trying to get help through CBT.
ReplyDeleteI have an app 2moro with Doctor Sulkhe so i will let you know what happens.
I am also always in and out of A&E how do you find your experience with dealing with the doctors do you find them helpful?
I did a taking charge course, which helped me loads as it was for people who had long term health issues, and how to deal with the psychological effects of it.
ReplyDeleteAs for A&E I feel like I'm not really taken seriously, and treated as though i'm just anxious.
I also think it depends on which hospital you go to.
There are times when think I should go but don't because I know they won't help me or can't help me.
Hope your appointment went well.
And just to say I had a great day today health wise so keep persevering. Things do get better just slowly.