brethor9

camomille tea and magnesium, cold air, darkness...... have helped me in the past...but to be honest I dont remember what it is like to get a decent night's sleep since POTS came along

I am the same as Sue...I went through a year of crap before I was diagnosed where I tried every single anti-depressant out there.....I had paradoxical reactions to all of them....the stimulants knocked me out (McBlonde; you are not the only one .....) and all the other ones made me squirrely or feel a hundred times worse....so I gave up on all of them. Even the beta blocker is a constant battle as the effects to my system change one day to the next.....my best luck has been with lorazepam so I just stick to taking it...helps with my mast cell issues, digestive upset, sleep...etc..

yes me too like puppylove said I give myself lots of time to adjust to being vertical when I first wake up....drink some fluids slowly....take my meds....wait and wait.....and then I attempt moving around more. If it's really bad I will take some gravol or a dose of domperidone....

I have this problem also and take florinef....my last values were 54 and according to my specialist a POTS patient should be over 170......he wants me to get a porta-cath put in for saline infusions. I am trying to put this off as I am not really comfortable with getting one right now I do salt load and fluid load but it just doesn't hold....

Bren

lol! good question lemons...that is very weird

yikes! I just got urine sodium levels back and they are way too low at 54.....they should be well over 100...but frankly salt just makes my stomach really sick...so I am not sure how to increase any more....we tried saline infusions but they can't get any into me without a porta-cath and I am not ready for that yet any foods that are naturally high in salt?

Thats POTS darlin and it does *****!!! all your vitals can be just fine and you can still feel absolutely horrible. Part of the misconception about POTS is that its based on HR and BP...but it really is only a small part of the picture. POTS is a sub-category of dysautonomia (dysfunction of the autonomic system which controls many systems besides just HR and BP) it effects all the systems you never think about, breathing, digestion, temperature control, lots more! Most days my vitals are okay but I still feel awful and I have episodes just like you.....if its any comfort you do eventually get used to them sad to say....and over time you will come up with your own coping skills and this forum is awesome support and a wealth of knowledge....we are all here for you! hang in there

Bren

I graze really...I have never been much of an eater even before POTS.... my gastro dr says I have a very compacted stomach and mild gastroparesis so eating makes me very uncomfortable quickly. So I probably have about 10 -12 tiny snacks a day.....no simple carbs....no wheat or gluten (I find its just too hard on my system) I drink smoothies a lot if I just can't eat or have nausea

I know honey! It is really hard and scary when you dont understand what's happening to your system.....the fear just ramps you up even more unfortunately try to stay calm....stay lying down, keep taking fluids, if you need to take an extra half dose of xanax or something then go ahead.....or even a tsp of benadryl to calm the system. Also keep an eye on your vitals.....if you feel they are not stabalizing then you can go to the ER and get checked out.....I am so feeling your pain right now....these episodes are awful another thing maybe talk to your Dr about a beta blocker if you are not too low with your BP as it can help with these episodes.

I used to have absolutely horrid adrenaline episodes like what you are experiencing....felt like I was dying literally I was sure of it......mine did not settle down even when I was lying down.....I was to the point of wanting to be locked up I was so scared and had no idea what was wrong with me....POTS can wax and wane and yes unfortunately the episodes can get worse just seemingly out of the blue. In my case it turned out I always have massive amounts of adrenaline and my system couldnt get rid of it.....it was a vicious cycle. Are you taking any medications? did you do anything different in the last couple of days? do you have any allergies that you know of? are you well hydrated?

yes sounds like a standard POTS episode ....I am so sorry you are suffering.... Kim is right it will pass I know it doesn't help right now...big hugs

Bren

yeah that is an excellent question! in alot of the articles I have read it states it is like we are running a marathon just doing normal things....so why isnt it the same? I am sure it is why we are so tired, sore muscles etc...just like when you workout

Thanks guys I keep hoping it will resolve but so far no good....Issie thanks I will look into the low zinc and see if it helps at all

just curious? how long has she been on Prozac and singulair??? my son is 10 and has to take meds for his autism I know when trialling many of the meds we got to see some pretty scary reactions.....one drug made him so paranoid and creeping that he was stalking....once we took him off the drug he was fine. Also singulair can cause strange reactions especially in younger people. If your daughter has just started these meds recently it may be worth talking to your pharmacist about drug side effects.....hugs and hope you get to the bottom of it....

Bren

glad its working for you Julie unfortunately had to cancel mine as they couldnt even access me and even the times they could it actually did not affect my symptoms....so funny how it helps some but not others.....I hope you keep seeing improvement

same symptoms as you katybug and firewatcher.....I also had exercise intolerance issues before POTS but managed to always push through....maybe that was part of the problem.....as for the muscle weakness...my one specialist thought it could do with lactic acid or the fact there may not be enough oxygen getting to the muscles. I also had a smooth muscle biopsy titre done and it came back elevated.....none of my specialists have been able to figure out the significance.....

I am exactly like Naomi! I have better days and worse days but never free from symptoms......I have yet to find anything to make me truly functional again

yikes!! aerobic exercise???? I can barely make it up the stairs some days.......what is wrong with these doctors and not being able to get it through their thick heads that this illness is not caused by deconditioning and lack of exercise? they need to start reading these posts ;(

Thanks Debbie! and I am very sorry to hear you are struggling with this as well I had an appointment with an ENT recently would felt it is likely related to nerve issues and that my olfactory nerve may be damaged....he said if thats the case there is nothing that can be done about it.....very distressing I also get the very dry eyes......POTS the gift that keeps on giving hugs

Bren

stress can make this illness worse that is for sure! but I don't think that is the underlying cause of it.....otherwise everyone who is traumatized would have POTS or autonomic dysfunction. Personally I have tried lots and lots of medications and nothing has worked so far to get me even halfway functioning including beta blockers....in my case my specialist thinks neuropathy may be the cause in other people something else entirely........everyone's ANS is unique therefore the underlying cause of illness is unique...what works for one may not work for another

very informative video!

yes me too! my specialist said its all part of the autonomic dysfunction....crazy hot one minute freezing cold the next ;(

I get the same kind of thing but it happens in my neck veins with the sudden BP swing....very unsettling....and none of my Dr's can figure it out....

Go for it Issie!!! I am so crossing my fingers and toes for you!! My worst symptom is head pressure....I may have to as my specialist about this med

Bren

Hippychic....last year before diagnosis I was completely bedridden for months....couldnt even stand....used to lie on the floor and cry the head pressure was the worst....after I started florinef I was able to get stable enough to start moving around a bit but my cycle still works like if I have a very good day i end up in bed for the next 3 days after. So yes I do go through cycles every couple of weeks where I am bedridden for a few days and then it starts all over again.....