brethor9

gradual onset and then more acute and progressive symptoms after several surgeries although I believe I have had Mast Cell illness from a young age the more my health history is delved into now I just have good days and bad days but can fall into sudden flares for weeks for no reason and even on my good days I am only good for a couple hours before I have to rest Bren

I also sleep mostly upright with lots of pillows on my back....oddly enough when I am in the throes of a really bad tachy/adrenaline episode lying on my stomach is the only thing that helps. I wonder if it could be causing some type of compression that in turn calms my heart? very strange........ Bren

LOL!!!

I get so cold sometimes I feel hypothermic and I have to grab a heating pad to get my core temp up since starting my mast cell meds it has gotten better but it still happens often enough. My specialist says its just all part of the autonomic dysfunction...yay Bren

great article!

yep lemons! totally been there with those feelings...still get the panic from time to time but the more research and knowledge I am able to obtain that sense of unpredictability and impending doom have lessened because I know more of what to expect. It has taken almost 4 years to get there though. I think with this illness that it is completely normal. At the worst of my illness I had to have a niece come live with us because I refused to be alone. When you have these episodes is there someone you can call and at least talk to as a distraction until it passes? I found that helpful...used to drive everyone nuts but it made me feel better Bren

Me too! I wonder if its just the mechanism of the body when its climbing stairs? the up and down movement of the legs, tightening of the core and muscles? without knowing it we probably use more oxygen, etc when climbing stairs as opposed to just walking maybe? Bren

I almost pass out sometimes when going to the bathroom and I sweat and get tachy like crazy if I have to hold my urine for too long.....never had any of these issues before this stupid illness Bren

Oh Lemons! I just want to send you a big hug!! I have been exactly where you are and I feel your pain it will get better though I promise....I have had this illness for almost 5 years and diagnosed for 2 years and its only in the last month that I feel like I am making a small amount of headway. Invisible chronic illnesses are the worst because not only do we struggle with the symptoms of being sick but we have to struggle with people's ignorance as well. In some ways its been a blessing because its made me have to rethink my life and the people in it.....I realized that in order to heal and get better I would have to get rid of as much negativity and stress as I could....that it was only adding to the illness. My family and friends were absolutely in denial about my illness even after reading the specialists consult notes, seeing me hospitalized and rushed by ambulance....watching me pass out, my legs turn blue, etc....and yet they still believed I was making it up.....it wasn't until I learned to stand up to them and threatened to cut them out of my life that they finally started paying attention....sounds harsh I know but for me it had to be done. Like you, I had been a giver and pleaser my whole life but this illness has forced me to make more selfish choices for self preservation and now I realize that those people and my old job, etc actually weren't doing me any favours regardless of my illness. I guess what I am saying is please stop beating yourself up! Your life is hard enough right now! You cannot control the people around you, all you can do is change how you deal with their behaviour....you are a good and kind person .....you didn't ask for this illness, and you certainly are not a burden on society (I am sure you have paid your dues).....nobody knows what life holds around the corner ..... I always tell the ignorant people who make assumptions that they better hope they never have to walk in my shoes one day......what goes around, comes around they say...... hang in there lemons! keep your head up and stay strong! you have people here who understand and care....try to remember that on the bad days Hugs Bren

I was actually diagnosed with severe OI/ moderate POTS and severe dysautonomia......so I guess they can all exist together under the same umbrella?

Oh my gosh! Me too!!! I hate those moments...like an out of body moment. I am not sure what causes it but wonder if its not some kind of surge maybe blood sugar or adrenaline related.....either way I could do without them. I do notice they get worse if I am not looking after my hydration issues. Bren

I find any emotion that is too much (meaning if I am too excited, too happy, too sad, too anything!) it effects my Pots symptoms. Basically if I can keep my emotions even then my symptom control is much better. I guess it makes sense though since this is an illness that affects your nervous system and makes most of us highly sensitive to everything. Bren

I have a nine year old son with diagnosed autism since 3 yrs and OCD tendancies.....I myself have been diagnosed with POTS/OI, Dysautonomia, CFS and suspected MCAD..(onset in the last 4 years)...although my son and I share many allergic characteristics I have yet to draw any similarities between our actual symptoms outside of that subset. I have also tried the whole list of medications usually used for autism treatment and they all had the opposite effect on my system. I think it has to be kept in mind that even when it comes to the Autism spectrum, like our illness, no one diagnosis or symptom set are the same.....every brain is so unique...thats why treatment is such a hit and miss. and why finding a cure has been so difficult....no one thing stands out...yes they have linked some genetic markers but this is still in its infancy and may only act as detection not necessarily a cure....just my insight Also forgot to add; we have tried every special diet etc for our son with no visible alleviation of his symptoms and I have had my bloodwork compared to his many times with no similarities.....granted they may not be the right tests. Bren

I started by having short dizzy spells and crashing fatigue which eventually developed into crippling head pressure, constant lightheadedness,etc, at first it was thought I was having spinal leaks or possibly MS

Hi all! So lately over the the last week I have started having unbelievable mood swings...to the point of crying one minute, high anxiety to almost rages over the smallest things. This behaviour is completely abnormal to me and is driving my poor husband to the point of madness lol he is afraid to come near me! The only new medications I have started again in the last month are bisoprolol 2.5mg daily and childrens claritin 5mg daily. All the other meds I am on I have been on for almost 1 year. I am strongly suspecting it is the beta blocker as I do know they can cause depression sometimes. Has anyone else experienced mood swings while taking beta blockers? If so what did you do? Thanks Bren

How horrible!! Big hugs to you Tennille <3 hope you start feeling better soon! What a terrible time you have had...... Bren

Claire.....hang in there!!...just keep taking baby steps! I am like you huge type A personality also and after 4 years I am still trying to get used to the idea that I cannot just jump up and go do what I want to do. Some days are better than others......like you, for me the hardest part is to not be available in the way I want for my autistic son....this illness gets in the way of so much! I want to be healed yesterday!!! (I have been my own worst enemy lol!) I have also been at the bedridden point which is like torture for us go-getters....for 6 months I thought it would never end but it did get better with time, rest, cutting out as much stressors as you can, trying different medications, getting MCAD under control..... eventually little changes start happening and you realize your body is slowly getting better....I now know there are no guarantees with this illness as to if it will ever fully go into remission and I will be my "Normal" self from days of yore....all I ask for now is for it to stabalize. The most important thing I realized too was that I hadnt gone through a grieving process for the life I no longer live until just recently....I think thats what finally made me able to come to some sort of reconciliation with this illness.....to be able to move on and accept whatever this new phase of my life is going to be.....you are strong Claire and you will get through this.....sending strength your way..... Hugs Bren

Sorry to hear you are still having such a rough go of it.......hang in there Brye!!! Big HUG!!! Bren

My lead Dr is a cardio electrophysiologist who specializes in autonomic dysfunction....my go between doc is an internist/cardiologist/oncologist and of course I have a regular GP who handles everything else not related to POTS/Dysautonomia or mast cell issues but it is me that keeps them all on the same page lol! Bren

Hey Jen I went through exactly what you are describing when my adrenaline problems were out of control....I looked almost anorexic.....and my heart rate was out of control so I do believe that with all those things happening it increases your metabolism....we are prove of that despite what the Dr's say.....since I have gotten my HR more under control and started meds I have put on weight again so obviously there is a connection.....and my appetite is still poor so it has to be an endocrine issue Bren

I feel bad when I first wake up...then I start to have bright periods as the day goes on waxing and waning.....early evening until about 10 pm is when I feel best.....then all crap breaks loose when I settle in to sleep.....arrgh..... Bren

I have gained almost 30 pounds over the last year which has been horrible for my joints...because I am normally not over 112 pounds.....most of it is water related due to meds ie beta blocker, florinef, antihistamines....if I stop the meds or not hydrated properly I can easily drop most of the weight....its so frustrating you need the meds but the weight gain side effects cause their own issues......I am hoping the saline infusions will help and I can atleast stop the florinef etc Bren

Thanks Corina! I will be crossing my fingers I wish I could share lol Bren

Based on urine tests I dont put out enough fluids despite what I take in.... and on other days it runs right through me....I suffer severe leg cramping, headaches, my arrythmia gets worse, low blood pressure, syncope, etc etc....... and I literally could go without drinking for days because I just dont have that sense of thirst.... thats when I end up getting admitted to hospital and they have to fill me with 5-6 bags before I start putting fluid out. After a certain point you cannot orally hydrate enough to fix it because you are dehydrated at a cellular level and thats where saline comes in. The Iv fluids are actually able to get into the body tissues and rehydrate your system at a more cellular level...if that makes sense thats how it was explained to me hope that helps Bren

mine are just bi-weekly to start...he said only that for now because he has to monitor how much of that fluid my body holds on to because if you retain too much that can cause issues also with retention; ie heart failure, kidney problems.....so he felt 2 litres every 2 weeks would be safest to start with....my dehydration is very bad and chronic ...some days I only urinate maybe 5 times and I never have the urge to drink....I have to force myself and end up gagging on it half the time. Then when I do drink it just comes right back out 5 mins later so he says that is because my body has gotten used to being dehydrated so is on conservation mode constantly which apparently is not good for the body Bren