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Video of the MPN Voice patients’ in-person forum Galway, Sat 24 June 2023
Trials
– an overview - Dr Janusz Krawczyk, Consultant Haematologist, University Hospital, Galway • MF an overview - Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin • Patient talk – My ET Journey - Sinead Dolan • What causes MPNs - Prof Mary Frances McMullin, Consultant
Trials
– an overview - Dr Janusz Krawczyk, Consultant Haematologist, University Hospital, Galway • MF an overview - Dr Claire Andrews, Consultant Haematologist, St Vincent’s Hospital, Dublin • Patient talk – My ET Journey - Sinead Dolan • What causes MPNs - Prof Mary Frances McMullin, Consultant
Mazcd
MPNVoice
in
MPN Voice
1 year ago
How to Feel OK When Your Medication Isn't Right
Since the beginning on September I've been through some big med changes (some by choice and others not so much, stupid insurance companies) and well I'm just very much not ok. But I need to feel marginally ok for my sake, my bfs sake, and for my jobs sake. I thought these new side effects were going
Since the beginning on September I've been through some big med changes (some by choice and others not so much, stupid insurance companies) and well I'm just very much not ok. But I need to feel marginally ok for my sake, my bfs sake, and for my jobs sake. I thought these new side effects were going
GhostKitty
in
Anxiety and Depression Support
1 year ago
18 Month Update
Always looking at the what ifs and next therapy or
clinical
trials
. Thoughts of things to continue to keep an eye out for in
clinical
trials
. Thank you all for your posts and sharing your journey.
Always looking at the what ifs and next therapy or
clinical
trials
. Thoughts of things to continue to keep an eye out for in
clinical
trials
. Thank you all for your posts and sharing your journey.
TylexGP
in
Advanced Prostate Cancer
2 years ago
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I just want it all to stop
I just want everything to stop. The sadness. The self loathing. The anger. The overstimulation (that only started recently and might be a side effect of medication but I can't get ahold of my stupid psychiatrist from an appointment sooner than Tuesday). The mental breakdowns. The crying. The loneliness
I just want everything to stop. The sadness. The self loathing. The anger. The overstimulation (that only started recently and might be a side effect of medication but I can't get ahold of my stupid psychiatrist from an appointment sooner than Tuesday). The mental breakdowns. The crying. The loneliness
GhostKitty
in
Anxiety and Depression Support
1 year ago
longest bout of AF , am I doing the right thing?
Hi everybody, Before I begin , I wish everybody a merry Xmas and a happy healthy new year!! My Xmas present has come early this year with my longest bout of AF ever! 40 hours and still going . I have an ablation booked for 18th January at St Bart’s , it will be my 3rd. A brief outline is I have had
Hi everybody, Before I begin , I wish everybody a merry Xmas and a happy healthy new year!! My Xmas present has come early this year with my longest bout of AF ever! 40 hours and still going . I have an ablation booked for 18th January at St Bart’s , it will be my 3rd. A brief outline is I have had
Kjsp
in
Atrial Fibrillation Support
9 months ago
Low heart rate while resting
Hey guys. I'm kinda worried about my resting heart rate. If I'm sitting or laying it can go as low as 48bpm, even in sitting. My range is mostly between 48 and 56/57. As soon as I get up my heart rate also jumps quickly and sometimes I get a bit dizzy for few seconds like you would normally get when
Hey guys. I'm kinda worried about my resting heart rate. If I'm sitting or laying it can go as low as 48bpm, even in sitting. My range is mostly between 48 and 56/57. As soon as I get up my heart rate also jumps quickly and sometimes I get a bit dizzy for few seconds like you would normally get when
NewOne2023
in
Atrial Fibrillation Support
9 months ago
Post cardioversion
1 week post cardioversion and am in NSR, and no palpitations any more. However I am still feeling exhausted and steps and hills are a real problem ........anyone else had the same experience ?
1 week post cardioversion and am in NSR, and no palpitations any more. However I am still feeling exhausted and steps and hills are a real problem ........anyone else had the same experience ?
OldTown
in
AF Association
9 months ago
Is Sertraline worth a try
Have been on venlafaxine for a long time together with pregabalin with little success. Am now off pregabalin and reducing venlafaxine with the hope of substituting to another drug. Dr has suggested sertraline with a diazepam emergency back up. Anyone tried this. My mood is unstable and I have highs
Have been on venlafaxine for a long time together with pregabalin with little success. Am now off pregabalin and reducing venlafaxine with the hope of substituting to another drug. Dr has suggested sertraline with a diazepam emergency back up. Anyone tried this. My mood is unstable and I have highs
Springvale23
in
Anxiety and Depression Support
1 year ago
Major Depression
I am very depressed and need some encouragement from people who understand. I am resistent to all antidepressents.I am hoping to try Trans Magnetic Therapy as a last resort. I am barely hanging in here. I am so drained by my depressions. I am 78 and have had them since I have been 21. Meds worked for
I am very depressed and need some encouragement from people who understand. I am resistent to all antidepressents.I am hoping to try Trans Magnetic Therapy as a last resort. I am barely hanging in here. I am so drained by my depressions. I am 78 and have had them since I have been 21. Meds worked for
mauv
in
Anxiety and Depression Support
1 year ago
Blip but back on track
As some of your are aware, I’ve been a bit unwell,unfortunately I contracted Pneumonia, instead of resting I decided I knew best and continued with my plans granted more slowly but continued none the less. By Saturday I was feeling much better, then wham irregular heart beat, got home about 3 hrs later
As some of your are aware, I’ve been a bit unwell,unfortunately I contracted Pneumonia, instead of resting I decided I knew best and continued with my plans granted more slowly but continued none the less. By Saturday I was feeling much better, then wham irregular heart beat, got home about 3 hrs later
4chickens
in
Atrial Fibrillation Support
9 months ago
Almost there
Festive greetings to all and thank you for making time to reply. Bit of an early start this end, just back from dropping my daughter to the bakery!! Anyway, almost there with the final surge of activity trying to co-ordinate between the GP and Consultant. Just to share the correct information so that
Festive greetings to all and thank you for making time to reply. Bit of an early start this end, just back from dropping my daughter to the bakery!! Anyway, almost there with the final surge of activity trying to co-ordinate between the GP and Consultant. Just to share the correct information so that
Pumukkale
in
PMRGCAuk
9 months ago
Update on my first EP visit & recomendation
Hi guys. Just wanted to give you an update on my first visit to EP. In short, after she carefully looked at my complete documentation (afib diagnose 2 months ago) she advised me to proceed with ablation. Her main arguments are following -I'm relatively young (40) and ablation has the best outcome in
Hi guys. Just wanted to give you an update on my first visit to EP. In short, after she carefully looked at my complete documentation (afib diagnose 2 months ago) she advised me to proceed with ablation. Her main arguments are following -I'm relatively young (40) and ablation has the best outcome in
NewOne2023
in
Atrial Fibrillation Support
10 months ago
An article on nutrition and aging.
However, the results obtained in this line in our species are still unclear:
clinical
trials
based on dietary restriction in humans become complicated due to poor compliance, although they suggest positive effects on immunity and inflammation," write the researchers.
However, the results obtained in this line in our species are still unclear:
clinical
trials
based on dietary restriction in humans become complicated due to poor compliance, although they suggest positive effects on immunity and inflammation," write the researchers.
WiscGuy
in
Pernicious Anaemia Society
2 years ago
My Afib and Bisoprolol
My last post was 2 yrs ago when my AFib was ruining my quality of life.. Regular episodes and anxiety was the norm.. Fortunately by cardiac nurse seemed to read my mind during a catch up conversation and we decided the pill in the pocket 2.5 mg of bisoprolol taken when my heart misfired would be better
My last post was 2 yrs ago when my AFib was ruining my quality of life.. Regular episodes and anxiety was the norm.. Fortunately by cardiac nurse seemed to read my mind during a catch up conversation and we decided the pill in the pocket 2.5 mg of bisoprolol taken when my heart misfired would be better
excop999
in
Atrial Fibrillation Support
10 months ago
What is inside our Christmas Stocking?
Peek inside the Christmas Stocking … You will find a full range of FREE resources, providing specialist advice and education to answer all your questions about Arrhythmias, Atrial Fibrillation (AF), Syncope, PoTS and Reflex Anoxic Seizures (RAS): https://heartrhythmalliance.org/aa/uk/patients/resourcesvideos
Peek inside the Christmas Stocking … You will find a full range of FREE resources, providing specialist advice and education to answer all your questions about Arrhythmias, Atrial Fibrillation (AF), Syncope, PoTS and Reflex Anoxic Seizures (RAS): https://heartrhythmalliance.org/aa/uk/patients/resourcesvideos
Hidden
Partner
in
Arrhythmia Alliance
10 months ago
Post Atrial flutter
Hi me again My husband had a cardioversion on Friday. It wasn't the same as usual when he has had Arrythmia but for severe atrial flutter and it was a rushed job in A & E where he was only partially sedated so he felt it. His heart rhythm/ speed is back to normal but he feels rubbish. Normally after
Hi me again My husband had a cardioversion on Friday. It wasn't the same as usual when he has had Arrythmia but for severe atrial flutter and it was a rushed job in A & E where he was only partially sedated so he felt it. His heart rhythm/ speed is back to normal but he feels rubbish. Normally after
Debfro34
in
AF Association
10 months ago
You All Are Perfect
Hi Everyone, Im an 29 year old woman. Whose battles Depression and anxiety for almost 12 years due to an chemical imbalance. Which is my fault because I tried weed a few times and 2 times I had a VERY bad reaction. I am not a we’d smoker to this day. But it’s nothing wrong with it for the individuals
Hi Everyone, Im an 29 year old woman. Whose battles Depression and anxiety for almost 12 years due to an chemical imbalance. Which is my fault because I tried weed a few times and 2 times I had a VERY bad reaction. I am not a we’d smoker to this day. But it’s nothing wrong with it for the individuals
ChaeChae
in
Anxiety and Depression Support
1 year ago
Cardioversion
Have been on medication for AF for 30 yrs, with occasional paroxysmes. First on Amiodarone which kept me on NSR . As it was too toxic, my cardiologist insisted change on propanolol 2 yrs ago.But AF became permanent . Now my EP insists on cardioversion if not ablation before putting me on flecoidine
Have been on medication for AF for 30 yrs, with occasional paroxysmes. First on Amiodarone which kept me on NSR . As it was too toxic, my cardiologist insisted change on propanolol 2 yrs ago.But AF became permanent . Now my EP insists on cardioversion if not ablation before putting me on flecoidine
Davidtol
in
Atrial Fibrillation Support
10 months ago
Understanding my GP's message
I am in permanent AF and taking Edoxaban, Bisoporol and Ramipril. Recently, at my GP's request I wore a 24 hour ECG monitor. Looking at the GP's referral for that on the NHS app it seems she suspected heart failure. Have just had a message from the GP which said ' 24hr ECG reported that the rhythm
I am in permanent AF and taking Edoxaban, Bisoporol and Ramipril. Recently, at my GP's request I wore a 24 hour ECG monitor. Looking at the GP's referral for that on the NHS app it seems she suspected heart failure. Have just had a message from the GP which said ' 24hr ECG reported that the rhythm
thinkingaloud
in
Atrial Fibrillation Support
10 months ago
Intrusive Imagery About Past
I am an 29 year old Woman who has battled depression and anxiety for 12 years. I currently do have a therapist and psychiatrist. I doing consultations for more comprehensive care. I just recently as of 4 years ago found out about intrusive thoughts and imagery. I never knew there was a name for them
I am an 29 year old Woman who has battled depression and anxiety for 12 years. I currently do have a therapist and psychiatrist. I doing consultations for more comprehensive care. I just recently as of 4 years ago found out about intrusive thoughts and imagery. I never knew there was a name for them
ChaeChae
in
Anxiety and Depression Support
1 year ago
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