Lets Try This Again Shall We?!

Due to unforeseen circumstances this Sunday night/Monday morning at about 01:30am, I started vomiting pretty hard and brought up quite an amount of blood with a horrendous lot of pain, Obviously The hubby and I were very worried and decided to ring the ambulance where I recieved lots of Morphine (*Overly happy girly voice: Which was awesome!!) and got treated in hospital, luckily it was nothing too serious just the getting sick and acid from my stomach had damaged my esophagus pretty bad that I started to bleed. So once I was given treatment and some IV fluids I was allowed to return home thankfully, I couldnt handle another stay in hospital!

Im am doing better now, just a bit sore in my throat and chest as the full length of my esophagus is pretty raw and I have to eat all soft foods which means I’m not getting full calories and making me even more tired than usual, but im good, remember (This one’s for MissNikkiAnn) NO DOOM & GLOOM!! :p

Either way, I had to cancel the radio interview for Monday morning or they would have had to call another 2 ambulance’s  to the radio station, one for me again and one for the poor DJ who would have had a small heart attack because of me!! :p

Thankfully, Lou and Wired FM were very understanding and they have rescheduled the show to this coming Monday the 5th December. So here are the updated details for the show as long as my Dysautonomia (I should probably give it a name at this stage) decides to behave itself and doesnt kick my ass again next week!!

Listen in to WiredFM , where I will be speaking to the lovely Lou M. Dennehy, spreading the word about Irish Dysautonomia Awareness. Its next Monday the 5th of December, live on air from 12 to 12:30pm Irish time. It streams live ‘Here‘ and will also be available for download and listening to from Soundcloud after the show. Ill add all relevant links here anyhow.

Thanks Lou for asking me to come on the show, I am delighted to have this opportunity to speak about the cause and hope to do us potsies proud! 🙂

I am going to record the show as it happnens so I will upload the video here after it happens, hopefully everything will turn out good!

Chat soon and remember if anyone would like to get involved in the blog or the Youtube channel, just drop me a line at: irishpotsies@gmail.com, All welcome, its not just for the Irish 😉

Things I find help with POTS Symptoms

I have discovered a few things that really help the symptoms of POTS and thought it would be good to share for others who may not know about them, they are simple but seem to help me a great deal and anything that helps has to be good!!

#1: Firstly and its my savior, I have to say ginger really is a lifesaver!! I get really bad nausea most days, so bad im rendered sobbing into a bucket off the edge of the bed and it really is a pitiful sight! However, the hubby did his research while I was having a bad episode and he really wanted to help. We found that ginger tea works almost instantly in settling nausea and upset stomach. Tastes a bit yuck but I wouldn’t care if it helped and boy does it!

If you have real ginger it works best, Ginger and Lemon tea bags are good too but dont work as fast or as strong. What I normally do is get a Ginger and Lemon teabag, brew it and also add a tea spoon of real finely chopped or ground ginger so that its not just the flavour your ingesting but the actual ginger itself and it works almost instantly!! Its a must!!

I am blessed that the better half has packed out the home cooking with ginger too and I have found I am now waking with little or no nausea in the mornings, its great and leads me to the next tip!

 #2: Home Cooking and changing eating habits really help to alleviate the symptoms of POTS. People with POTS have a strange diet change and usually it goes against what every Dr. and Health pro would tell you to do! At the start when I was first diagnosed, I hadnt cut out certain things like: Starchy Carbs, Dairy, Sweets and take away or processed foods or increasing things like Salt (20 grams a day for me but ask your Dr. for individual cases) to increase blood pressure and pulse, black coffee for heart and energy stimulation, All these things have a huge impact on symptoms. As soon as I started to follow this advice I felt great the very next day with only tiredness to battle which is easy without pain and sickness!!

#3: Keep Hydrated, it is soooo important for everyone to keep hydrated but especially people with POTS because of the fluids lost during certain symptoms (I don’t need to gross you out!). I find electrolyte drinks like Powerade excellent but others likeLucozade isotonic drinks give me headaches so you have to find the one that works for you. Electrolyte drinks hydrate faster than water but you should try to get at least 2L of fluids into you a day in the form of water mainly and then these drinks 2nd.

#4: Know how to rest during important times like showering where your body is under stress, Get a shower chair and limit the amount of overhead arm movements as this can trigger syncope/fainting episodes very easily because of the heat of the water and blood pooling in the legs. Reduce the heat of the water to what you can tolerate and before you leave the shower, rinse your legs in cold water to cause your blood vessels to constrict and pump blood back up to the heart and brain.

#4.1: If going from a lying position to standing, sit with your legs down for a few minutes before attempting to stand up, this will allow your body to acclimatise to the change of position and will reduce the risk of fast blood pooling and syncope episodes.

#4.2: If you find you slump or hit a wall in the middle of the day while up and about, take a bed break! I find even as little as an hour snoozing can give me a tiny boost of energy for the rest of the evening, its minimal mind you but you would risk further symptoms triggering if you don’t listen to your own body and take a rest when you need to!

#5: Take Vitamin D, Ask you Dr. first to be sure but its known as the sunshine supplement, this is brilliant as people with POTS may not be very mobile and cant get outside as often as they should. As well as taking all the meds we need to take, Vitamin D is known to help nearly all organ tissues in the body and it has psychological benefits,  as does real sunshine, ever heard of the winter blues? A lot of people get affected by the lack of sunshine in winter and it can actually trigger depression, its all down to the lack of vitamin D. Sometimes its hard not to feel down with an illness so increase this and you will increase happiness as well as organ tissue health! 

 #6: Avoid Stairs on bad days, goes without saying really but putting that pressure on your heart rate when you are already feeling low is a very bad idea and you do not want to faint at the top of a stairs!

#7: This is going to sound cheesy but THINK POSITIVE!!! I have been doing heavy research on POTS and Dysautonomia in general and the amount of what I call ‘Doom & Gloom’ videos online is frightening! Those videos or write up’s of how bad and terrible people have been feeling, Avoid this crap! Really, the power of positive thinking can really float you a long way and I’m no hippy but it works! So concentrate on the things you CAN do and not the things you cant, be happy for what it is you have and not what you haven’t got, thinking like this really does make a difference. Use your time wisely and creatively and share your experience so that others can share alike, you never know, ya might learn something along the way! 

#8: After being advised by my Dr’s in the hospital before leaving, they gave me and told me to get some Compression or Embolism Stockings to help stop the level of blood pooling that happens in my legs. They have proven very helpful and on the days I don’t wear them I usually faint, when I do I can stand for longer and usually get more hours awake during my day so I highly recommend these for other Pots or Dysautonomia sufferers. They can be gotten from any pharmacy or from your local health nurse, also this brand: ‘Jobst‘ are excellent for support stockings of all different colours, shapes and sizes which is great to colour code with clothing and are far prettier than the usual plain white ones you get at the pharmacy! You can get half leg, up to the thigh and tights style stockings so which ever works for you, personally I find the higher the stocking the more support and benefit they are but each to their own and find what works best for you. Not only that but they suck everything in!! Thats gotta be good right?!! :p

 #9: Sunglasses are now a lifesaver! I don’t know which of the tablets are doing it to me (and it is the meds as the Dr. told me it would happen I just cant remember which one does it!) but I have become highly light sensitive and my prescription sunglasses from long before getting diagnosed with Pots are getting more use than ever. If you dont have sunglasses and are finding this with Pots/Dysautonomia meds I recommend a high UV filter in whatever shades you decide to get, dont skimp and get cheapy ones because they will ruin your eyes and have zero UV protection which will damage your eyes in the long run. Pay well once and mind them, it will be well worth it!

 #10: A blood pressure monitor and a heart rate watch are 2 things I have picked up and have started tracking my daily stats. Not only for myself but for my Dr’s as I will be seeing them so infrequently I would rather keep a full history on the days they haven’t seen me. I find them excellent for allowing me to slow down when I need to and for when I know I can push myself that little bit harder too.

 The heart rate watch is pretty cool as it doesnt need a chest strap and I got it on sale at Amazon. Its a Womens Sportline 710 analogue heart rate monitor watch and is very accurate and not as bulky as other heart rate watches. Click on the link there if you want more details but its currently on sale on Amazon for half the price you would buy in stores.

The Blood Pressure monitor is a Sanitas SMB 30 Upper Arm monitor and I picked this little beauty up in Lidl for €17.99!! It works perfect and I didn’t break the bank! Upper arm is considered the most accurate, try and avoid the wrist monitors, they cant give as accurate a reading (apparently, im no expert, just going by reading lots of stuff and what my Dr. said!)

#11: Also for keeping track of my stats, I use my Android phone and have an app called ‘BP Log‘ which has a lovely clean, no nonsense interface and is very simple to use.

Anyhow, that’s all for now until I think of more, if you have any questions or want to take part in the blog or new youtube channel (Where there will only be positive videos, none of the ‘Doom & Gloom’ kind!) please let me know. Thank you for your interest.

Lette (The Fainting Goat!)

My Personal Diagnosis Story

This is going to be quite a long post and those of you who know me already may have read this already on my personal blog but I wanted to share this here for new people to the condition. I hate the thoughts of ‘doom and gloom’ posts which I am adamant will be very rare on this site, but I do want people to understand what can happen with this condition.

This is what happened to me and how I found out I had Dysautonomia.

Gonna Be On The Radio!

WiredFM to be exact, where I will be speaking to the lovely Lou M. Dennehy, spreading the word about Irish Dysautonomia Awareness. Its next Monday the 28th of November live on air from 12 to 12:30pm Irish time. It streams live ‘Here‘ and will also be available for download and listening to from Soundcloud after the show. Ill add all relevant links here anyhow.

Thanks Lou for asking me to come on the show, I am delighted to have this opportunity to speak about the cause and hope to do us potsies proud! 🙂

I am going to record the show as it happnens so I will upload the video here after it happens, hopefully everything will turn out good!

Chat soon and remember if anyone would like to get involved in the blog or the Youtube channel, just drop me a line at: irishpotsies@gmail.com, All welcome, its not just for the Irish 😉

POTS Syndrome – Mayo Clinic

“Phil Fischer, M.D., discusses the latest research on Postural Orthostatic Tachycardia Syndrome (POTS)”

 

Video uploaded in 2009 and for us Irish, ‘Mono’ is Glandular Fever over here and is quite common.

Welcome to the new blog!

Hi all and welcome to the new blog where we hope to create a social network of individuals from Ireland and around the world who suffer from any type of Dysautonomia.

Here we hope to come together as one and share our experiences, treatments, tips and support to help each other out.

All welcome and if you would like to be involved in this blog, please email us at: irishpotsies@gmail.com

You may also find us on Facebook and Twitter, check out the links to follow us and keep up to date with our information and events.

There are lots of informative links and blogs added to the sidebar for your information and if you would like to be added to the links on this page just let us know!

We have also set up a youtube channel and are looking for anyone interested in documenting their experiences through video.

Welcome once again and we welcome any help and information, just drop us an email if you would like to get involved in any aspect of Irish Dysautonomia Awareness.

Please help us spread the awareness as there is such little information out there, should it take off we are hoping to turn it into a recognised charity, but can only do that with all of your help.

Thank You