brethor9

I agree Dani! You should give the neti pot a whirl....its worked great for me in the past....or the hydrasense saline sprays are great......they have a menthol one too if you can stand the insane pain when you rinse lol! but your sinuses feel great after Bren

Hi Guys So last week I started seeing my wonderful internist again (unfortunately he was away for 7 moths due to his own health issues) he is a little bit familiar with POTS and autonomic dysfunction but would like to do more research and testing for me (his background is oncology, cardiac and internal medicine) he is quite brilliant and I am grateful that he is completely on board. I told him that I would do some research and talk to my friends here to see what other testing could be done to see if there are any secondary issues causing my POTS and dysautonomia. The only testing I have had done so far are; Tilt Table Catecholamine Testing Pheochromocytoma Standard Blood Work Hormones (estrogen/progesterone/testosterone) Thyroid Spinal Tap Autoimmune panel for Celiac, Lupus and some other standard autoimmune illnesses Head and Spine MRI, X-rays etc Endoscopy/Colonoscopy everything under the sun of course like everyone else here I am sure are there any other tests available that are more specific to POTS and dysautonomia??? I would appreciate any input! So glad to have you all! Bren

Hi Steve Sorry to hear about the side effect issues with the Mestinon.....I am starting it tomorrow only at 15mg 2x a day until my body adjusts. My internist did state it can be very hard on your digestive system so always take it with food and water and hopefully as you are on it longer the side effects will settle down. On the up side it does sound like its helping with some of your symptoms...... Bren

Hi guys....thanks for all the replies...the only med I am currently taking is Florinef.....I tried some Benadryl and no luck.....I have woken up with it again this morning along with abdo pain and some lower facial pain.....I am wondering if it could be some type of infection....I am calling my doc tomorrow.....but I gotta say its really worrying me bad Bren

thanks Issie I will try that Bren

Hi all!! Just lately off and on I have experiencing a really strange symptom that I have never had before......my chin keeps going numb and part of my lower jaw.....I have recently been having some other issues with numbness and pins and needles in my legs, etc but never my lower jaw. Its kinda freaking me out a bit.....anyone else ever experience this??? Of course if I look it up on the internet all I get back is that it can be a symptom of lymphoma or met breast cancer...arrgh!!! It doesnt happen every day just every couple of weeks....any ideas??? Bren

I couldnt tolerate midodrine at at all at any dose!!! I have had some better luck with florinef but even now I am trying to wean off of that due to side effects...(maybe you could ask your doc about florinef?)....I am starting Mestinon next week now that my internist is back and he is looking into seeing if he can get Ivadrabine? its used in the UK but not sure if he can get it in Canada....he thinks beta blockers are completely useless so he is looking at other alternatives....his background is very varied...oncology, cardiology and internal medicine so I am hoping he will have some different ideas......keep faith...you just have to keep riding the symptoms out.....it will settle down....it sounds strange but I have had good luck with taking magnesium to help settle down some of the adrenaline surges...have you tried anything like that? Bren

Hi Steven I find on some days no matter what I do even though BP and HR are ok lying down I still feel like I am going to die any minute.(I have had a heart attack 100 times over or so I thought!)......I really believe its the autonomic system at work (or lack thereof ).....don't forget it regulates many more things than just HR and BP!!! I know you have POTS but if you were also diagnosed with Dysautonomia like me that means your whole autonomic nervous system is off kilter and not operating properly and therefore can cause many of the other symptoms you are describing such as anxiety, chest pain/ pressure, temperature deregulation, feelings of imbalance (drunkiness) abdominal issues, nerve issues....pretty much anything to do with controlling your body when these horrible sensations come on just try to keep that in mind and learning distraction can be very helpful also.....I found when I stopped letting my psyche play into the symptoms so much coping with the actual physical problems got alot easier....I hope that helps a bit! Keep us posted when you start the meds...I am waiting to get over a stomach illness to start Mestinon so I am crossing my fingers for you! Bren

there are days my body temp is so deregulated I have to have 3 baths in one day just to try to keep my core temp up....it is agonizing on those days and its an internal cold not something easily fixed by throwing on a warm blanket Bren

same as everyone above...my psych was the only one who tried to help because she knew it wasnt in my head!! After a year I started seeing her to help with coping mechanisms and she said on the the first appt she knew it was something physical.....weirdly enough she had a c-section 2 yrs ago and is now having similar symptoms to me! Bren

ok so the body shaper isnt making me feel much better and wow do i feel awful when it comes off! thats even at light compression..... I definately think that with my body its more of an internal mechanism gone wrong and no amount of outside compression is going to help! Oddly enough I found through a weird experiment while having a shower? that when it is hot my head instantly gets congested and it feels like every vein in my body tightens and I feel extremely ill.....if I open the shower and let in all of the cold air it instantly clears and I feel much better but it doesnt last! so this tells me that the switch that controls constriction/ dilation is definately broken.....now if I could only figure out why or how to fix it......I dont understand why this is so hard for dr's to figure out when we can figure it out? Issie I do think I am hyper-pots I have major issues with norepinephrine my blood pressure only drops really bad when the nori is really bad....I think its at the root of the problem in my case.....my specialist did say it is responsible for maintaining constriction/dilation.....oddly enough my symptoms didnt get really horrible until after I had a partial hyst....also interesting is the fact I have been off the BCP since then after being on it since I was 18 (read that it constricts/dilates also) sorry went in a whole new direction there!!!! Bren

yeah I dont know Naomi, I feel the same way! this is the second time I have tried and they just seem to make things worse.....makes me wonder if there isnt something more underlying everything that is causing the pooling etc because the standard treatments just dont work. I may give the body shaper a try and see if I have better luck! Bren

Hi Steven I have been prescribed mestinon with florinef and metoprolol.....so far I have had an allergic reaction to the metoprolol and continue with florinef only....I have not had the nerve to try the mestinon yet...still trying to get over my most recent flare. Please keep us posted how you make out with the mestinon when you try it as I am very curious as I will also be trying it hopefully in the next several weeks. Glad to hear you are making some headway Bren

Hi All So today I decide to give my compression stockings another try and find that they are making my symptoms worse. My heart rate has increased even more and I am more dizzy and lightheaded....is this normal? Also I find when it comes to pooling it seems to be the worst in my stomach down to my thighs....my calf area is white and my feet go beet red (same as my thighs) is there a different type of compression that would be better for me?? I was thinking of maybe a body shaper? Thanks Bren

Welcome CC! Sorry to hear you are having to struggle with this horrible illness...reading your story makes me want to cry also! I can relate to wanting to work but just not being able to get through it.....I just lost my work contract this week..... but atleast we have wonderful people on here for support! I would be in so much more despair without the kindness and guidance of others on here! Hang in there and I wish you the best! Hugs... Bren

I dont know if this is similar but on days when I am really symptomatic I have this dropping/ pulling sensation when I stand.....it feels like I am being sucked through the floor....my heart feels weird...my chest is tight and short of breath and I feel like I am going to die.....its scary and I have no idea what is causing it? is that what pooling feels like?? Bren

me too!!! another annoying symptom! I figure its probably due to restricted blood flow or something....... Bren

Oh Comet I feel for you! Welcome to the canadian medical system!! It is just so frustrating trying to navigate through all the red tape.....and then when you do finally get some answers good luck getting someone to take it on.....I went through the exact same thing for over 4 years it wasnt until my legs starting pooling that they couldnt deny there was an issue. All I can say is be persisitant!! You know your body better than they do.....demand for a referral.....be the squeaky wheel if needed.....if the letter is suggesting you need a beta blocker than obviously there is an issue. Another thing that helped me was I started taking pictures of my legs, arms, etc when they started pooling and would show them to every specialist I saw....its true a picture is worth a thousand words Hang in there and keep fighting!

yes I have huge issues with this every night....only mine are almost full body jerks...its very unsettling...they happen many times through the night always waking me up....I hate them because my heart also feels weird when they happen almost like it stopped beating for a second or two and the jerk is to get my body started again. Wish I could figure out what causes it...... Bren

Tinks Hope you are feelling better my friend! and you hit the nail on the head with the symptoms...thats exactly it to a tee....feels like a bad sunburn and the same with sitting on the toilet lol! I am also getting it in other areas you mentioned....I really am wondering if its not nerve issue related? I am trying to get an answer out of my specialist but you know how that can go....like pulling teeth lol thanks for letting me know you have had the same......hope everything is going ok with you and your son? must be excited about Halloween! Bren

Hi I get massive adrenaline attacks constantly.....I have consistently high levels of NP Lying down and standing so when mine start its like this; ....waves and waves of adrenaline mostly at night...all night.they can last for hours then break and start up again.. I get rapid heart rate, chest pain, arm pain, really bad brain fog, head pressure and severe fatigue and when I stand during this I lose my balance and walk like I am drunk..(it literally can feel like I am having a stroke) .... when I am sleeping and having these surges I have weird dreams or visual flashes like a movie playing...weird random thoughts....its really hard to explain. Also after these episodes I am extremely tired...I can barely lift my head or open my eyes...its like being drugged....I am pretty sure these are side effects of adrenaline crash. They are in no way fun and I have not found any successful way to stop them even with beta blockers.....I just have to stay calm and wait for my system to settle. Bren

Hi Steven I am so sorry you are feeling so distraught! The ups and downs of this illness are not for the weak! I can definately relate to the symptoms you are describing. In fact just like you when I first got sick I tried to exercise even more to get rid of the adrenaline but soon found out that was only wreaking havoc on my system even more! I was hysterical and thought I was going nuts....its amazing how bad too much adrenaline can make you feel when your system isnt using it properly lol! You have to take things slowly. Our systems are not normal and do not deal with adrenaline issues normally thats the issue so massive amounts of exercise is not going to help. Try to stay as calm as you can and know this too shall pass and that information is power...the more you come to understand this illness the better you will become at coping with all the ups and downs it throws at you...and know that you have support here when you need it Bren

not sure in your case.....but this happens to me from overspill of adrenaline......If you have issues getting rid of adrenaline emotional outbursts like that I think come with the territory.....I know when I had my catecholamine testing and they gave me epinephrine or whatever it was I hit the roof and started sobbing within seconds....the specialist said its a normal reaction......fight or flight......over time mine has settled down or maybe I have just learned how to cope with it better.....and that helps.....maybe the crying is just part of your system's way of burning off the adrenaline......just my theory Bren

I agree with Ginger my Dr's definition of progress is far different then mine! 1 month ago I would say better...at this point in time I am worse again.almost bedbound again...its the gift that just keeps on giving!! I just keep trying to take baby steps and pray that eventually my body will find its way back to normal.....whatever that is Bren

Hi Guys Thanks for replying! Rama- I'm sorry I am brand new pretty much to all this and have yet to wrap my head around all the ins and outs of transmitters etc.......could you explain in simpler terms what acetylcholine is? My body produces way too much norepinephrine which I think is probably at the root of my POTS and yet every beta blocker I try I have had a reaction to......would Mestinon help with the excess of norepinephrine? Thanks Bren