brethor9

Hi All!! I was speaking with one of my specialists recently explaining to him how I am trying to cope with overwhelming fatigue and other various symptoms. He suggested to me to try to get some mild exercise to see if that would help alleviate my symptoms. I have to honestly say the whole exercise thing has me completely confused for the simple reason that I was incredibly fit and active before (worked out 2 hrs every night) and during most of this illness up until last February when I crashed and ended up in hospital. I have read several articles that state a sedentary lifestyle can possibly lead to POTS...so what is the reasoning in the cases of patients that were extremly active? How will exercise help now if it didnt help to prevent getting sick? None of this ever makes any sense?? I just cant wrap my head around this illness Bren

I too was able to push through this illness for almost 4 years; worked 50 hrs week at a very high stress cancer clinic, care for my autistic son and worked out every night for 2 hrs....that was until complete system failure in February. I actually ended up in the hospital several times due to the symptoms becoming so severe and had to leave my job. I was finally diagnosed end of May and started treatment in June. Even with treatment I am still having difficulty stabalizing my symptoms enought to return to work in any capacity. I agree we should not give in to this illness but I am also an example that sometimes as much as you want to push through your body has other plans...I realize now that I pushed it way too hard, didnt pay enough attention to the signs that my body wasnt compensating well and now I'm paying for it big time. Pushing through isnt an an option for me anymore it just makes my symptoms worse...now I have to work on repairing the damage if thats even possible. Bren

Hey Guys! I need and would appreciate some input on this issue. Long story short for the last 4 years I had been struggling with a miriad of slowly debilitating symptoms which made it so I finally had to take a leave from my job as a ward clerk in a cancer clinic last February....fast forward to May of this year and I was finally diagnosed with OI/POTS, moderate Dysautonomia, Hypovolemia and Beta-adrenergic hypersensitivity. I started treatment in June with Florinef and a Beta Blocker (I could not tolerate the BB) and not having great results with Florinef either. Anyways, on some days I feel much better and think to myself; oh you could have worked today...only to be shut down again for the next several days to a week and then the same cycle again. My work contract ends in October and they really want to know when I am able to come back even on a modified basis. At this point I feel really torn because I do want to go back to work but really deep down feel it is too soon and I would end up stressing my system too much; although I feel like I am being a wimp or taking the easy way out if I apply for short term disability. How many of you work?? and how long did it take you to return to work? or did you work all the way through your symptoms and illness? How many of you are on short term disability? What made you decide? I am having a really hard time with this decision....although I think I know deep down the timing isn't right yet but I would love some feedback!! Thanks Bren

I do get that burning sensation...its hard to describe but I definately think its a nerve issue. I have alot of back issues and also had a hysterectomy several years ago and found I started having the burning issues afterwards. My neuro and back dr have both said they believe it is like a nerve issue....also I have high levels of epinephrine all the time and I wonder if it isnt a side effect from that irritating all the nerves. I am going to ask my auto specialist next week...will keep you posted on what he says Bren

Hey Godsgal! Sorry you are having such a hard time right now! I can sympathize as I have been having nonstop adrenaline surges and like you worry that my heartrate gets so high its just gonna tire out! I currently do take 0.5mg-1mg daily of ativan and for me it is a blessing for taking the edge of my system and I dont really find that it lowers my blood pressure...which I also suffer from. So I wouldnt be too concerned just start out on a really low dose and work up until you get some relief. Its definately fast acting...relief within 30 mins if you take the sublingual type. Hugs! and I really hope you find some relief soon!! Bren

Hey guys!! Over the last couple days I have been reading through a lot of the posts and have noticed a surprising number of us have spent some time working in the medical field...ie; nursing, clerical, etc. I am really curious as to how many of us were working in that environment before the onset of POTS. I don't think that it is directly related (ie virus contamination) but it has me wondering. I am assuming it is just because its a high stress setting..emotionally and physically and because of that, people are more vulnerable to getting this disorder... would love to hear any replies Thanks Bren

can totally relate to those episodes!!! when I get them I always think..so this is what I used to feel like all the time!! then the fog sets in again Bren

Hey Pots Girl! Right now I am taking ativan 0.75mg daily and 1/4 tab florinef...the ativan I have been taking almost for a year so I dont think its that but it may be the florinef....alot of this stuff has come on since I started it in the last couple months...it just seems weird on such a small dose? Although I have noticed since I started taking it my breasts have gotten very sore and big time swelling!! So maybe its wreaking havoc on the hormones?? can florinef do that??? Bren

Hey Sue I think I have been tested for a pheo a couple years ago but nothing recently. As for blood sugar the docs say it is normal although I used to work in a Diabetes clinic and I mentioned to one of the nurses that I was almost passing out about 1 hr after eating lunch...when she did my sugar it was quite low so she thought I could be reactive hypogylcemic??? but never had any further testing done... Its sooo confusing! There is so much going wrong with this body and I dont even know where to start to get it fixed.... I have only seen my specialist 2x since being diagnosed in May and that was simply for testing....frustrating Bren

Hi Guys!! Ok so I have been going through a really rough time of it over the last several weeks. I have been having a myriad of horrible symptoms and not really sure what is bringing them on. This disorder gets old.... fast!! :{ The newest onset is a major increase again in my adrenaline surges but with them some strange symptoms I haven't had before so I need some input as to whether anyone as experienced the same or if I am simply going crazy? I know hormones are playing a part because I can feel the hormone change and then the adrenaline attacks start....waves and waves of adrenaline mostly at night...all night...along with this 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...the newest part of this is 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. The thing is this only happens during these adrenaline episodes so I am almost positive it is not psychological but related side effects to the adrenaline. 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. Can anyone relate to this??? Can anyone please explain what adrenaline does to the body and is it possible that it could cause these very strange symptoms? My specialist did say I have very high levels of norepinephrine pretty much all the time so I know its gotta be wreaking havoc on my system somehow.... Oh, and on a side note I have a sinus infection and am not sure if that could be stirring things up? seems moving some days stirs everything up!!.....sigh Thanks Bren

Hi Katybug and Lotus Flower Thank you so much for your kindness! The chest pain is a little better but I am still having problems with shortness of breath and irregular heart rate and crashing fatigue....basically I just feel very off....hard to describe it but I almost feel worse than what I did before starting the florinef. I am not taking the beta blocker right now because I am scared too...it really messes me up.....I am now experiencing other symptoms also to boot so I am not sure what the heck is wrong. I have been having blurry vision, increased dizziness and head pressure...when I stand I feel like I am being pulled through the floor (weird sensation) also I keep getting sharp shooting pains in the left side of my head, behind my eye and beside my nose which makes me wonder if I dont have an infection going on???? I am at such a loss and so frustrated!!! I have been crying for most of the day...I am so fed up!!! I was supposed to return to my job at the end of August...thinking thats not going to happen....its just not fair...I know there are always worse things but seriously there are some days I think this is no way of life....does it ever get better?? I just cant get out from underneath this thing thanks for listening...I appreciate it so much! Bren

Endure I completely agree with you! It really is insulting when these Dr's tell us how our bodies are feeling and reacting when we are the ones dealing with the symptoms everyday....it does get very tiring hope you get some relief soon... Bren

Thanks Katybug for the quick reply!! It does make me feel better and a little less scared..thats the thing I hate most about this disorder there is always something new and scary cropping up. You fix one thing only to have another start...I really hate being held prisoner by my own body...I wish it would just smarten up and get on with it already Bren

Thanks guys for always being so helpful with answers I am still having major problems but atleast now I will be seeing my specialist on Sept 1st to discuss this all with him....I will mention to him about trying some of these other meds everyone has recommended...hugs to everyone! Bren

Hi Guys So I just spent another useless 6 hrs in my local emerg for chest pain and shortness of breath I have been having for the last week. The pain is just on my left side and extends into my back and when its really bad into my arm and causes it to go numb. EKG was clear, blood tests were clear, chest x-ray was clear. They also did a d-dimer to rule out chances of a clot I guess. The question I have is the only med I am on is florinef could it be causing these issues? Also I notice the pain gets really bad when I am producing alot of adrenaline could it be causing this??? I just dont know what to do and I am still really scared despite the all clear from emerg (sorry to say but my hospital is not known for having smart drs) some other symptoms I have been having are I am freezing cold and cant get my temp up, pooling like crazy, my vision is blurry. I am on a small dose of florinef 1/4 tab daily. Also in the ER my pressure was all over the place within a span of 2 hrs: 142-154-134-118-122-132-97 that is the top numbers the bottom numbers stayed pretty consistent.....can anybody give me some insight as to what the heck could be going on with my system? also my heart rate which is usually always very high has been tanking below 60....I was to be taking a beta blocker but am now really scared to take it because of all these wild swings.....I am so frustrated and worried...this isnt normal even for me Bren

Hi Lindsey! Just wanted to let you know I have the exact same episodes!! (Had some today actually.scary and I sure hate them! cry everytime it happens because I am sure I am stroking out!)...at first I too thought I was having TIA's...they are so scary!!!! My specialist thinks they are due to POTS and adrenaline receptor issues. I am hypovolemic also and notice they start coming on if I am not taking in extra fluid and having bad pooling. Not sure if you are on Florinef but I have found it helps alot with the stroke-like episodes as well as a small dose of lorazepam when they are really bad because it knocks the adrenaline down quickly. Also one of my docs thinks it could be a glucose issue because sometimes they come on after I have eaten something sweet...so who knows??? I just wanted you to know you are not alone and that mine are identical!!! When I get one I just lay down, start drinking extra fluids, try to get my pressure up and stay calm. I have had CT's of my head to rule other things out so I am atleast confident it is just the stupid POTS playing games hang in there!!! hugs Bren

Hi all! So I have been having a really hellish week and have been mostly in bed because of it. Just for a quick update a little over a month ago I was started on Florinef 1/4 tab daily and the beta blocker bisprolol 1/4 tab daily. So here is the thing I have been having some really nasty side effects and cant exactly figure out which is causing which but I have definately narrowed down the beta blocker to causing incredible fatigue (I literally cannot move from the couch when I take it and it makes me incredibly ****** and down in the dumps even at a low dose like that) At first I thought it was the florinef but after stopping the beta the weird head heaviness, fatigue and down feeling stopped. Problem is the beta blocker was helping with the chronic chest pain and huge amounts of adrenaline my body produces. I am beta hypersensitive...does anyone know of a milder beta blocker I can try? Of course I cannot speak with my specialist as he is away for a month (sort of frustrating being started on new meds and then your dr disappears for a month! But whole other issue)so I cant get any guidance from him. So any input from you guys would be much appreciated!! Thanks Bren

good luck Cordelia! Please let us know how it goes.... Bren

same here...it seems taking the day off doesn't work either....I am wondering if there is something else going on??? I also find my allergies have been much more severe since starting on it....also there seems to be some rebound pressure??? especially late afternoon....I cant tell if I am still taking too much or maybe not enough?? the head pressure is better for a bit but then comes back with vengeance especially at night......last night my head was pounding so bad I could have cut it off....so I really dont know what the heck to do??? Bren

Hi Can someone please explain what Mestinon is and how it works?? Is it like Florinef?? How would you know if its suitable for you? Bren

Hi 718 Mom! Can you relate what your symptoms have been? Do you know if its normal? I am so frustrated because I cant even get ahold of my specialist to ask.....today has been brutal!! severe head pressure, hot flashes, increased heart rate....I really dont know what to do anymore I feel bad on it and I feel bad off it all for different reasons..... its weird because it almost feels like the florinef is making my hormones go crazy!! Bren

Thanks Lenna! What is your son's dose every other day?? Bren

Hi All! So for a little over a month now I have been trying to stabalize my florinef dose. When the dr prescribed it the daily dose was for 1mg. I have not been able to make it to that dose as I am struggling with side effects such as lots of water retention, increase in head pressure, incredibly sore breasts (I know its the florinef as I had a hysterectomy several years ago and went down about 2 bra sizes due to hormone changes)and severe gastro pain. On the up side the florinef really has helped with the head pressure/ dizziness that I was dealing with 24/7 at a 1/4 tablet daily. Here is where I am getting confused and need help??? It seems like after a couple of days I start to get the bad water retention, sore breasts, etc at night I start having bad hot flashes and severe headache/ head pressure..so I stop the florinef for a few days all those symptoms settle down...urinate like crazy, my system crashes...then I start the florinef again and everything is ok again for a couple days. All of this is happening even on a 1/4 tablet...I am staying hydrated with fluids and salt...but wonder if this is a build up issue with the florinef (or my kidneys aren't excreting properly?) and maybe this isnt going to work for me? Besides midodrine and florinef are there other meds similar to florinef??? My specialist is away until the end of August and I have no family GP so right now I am stuck for guidance. Any insight??? I would appreciate it.... this stuff really gets me down Bren

Hey Lissey I'm actually having the same issue as you! I could drink a litre of water and 1/2hr later have it run through me! I have been taking florinef which at first was good but now I seem to be having blood pressure swings, stomach issues etc. no matter how small the dose. I assume its because it builds up in your body? I saw the gastro today and he said pick one; not passing out or have nasty side effects :{ nice options....I was reading some old posts and some people said licorice root can have the same effects as florinef but without the nasty side effects so I am trying that now....I will keep you posted...... Bren

Hi Again!! Sorry for all the questions!! Being new to this I just get so overwhelmed sometimes with what can help and what can make everything worse.....in regards to birth control? Does anyone find it helps with their POTS symptoms? I am 37 and had a partial hysterectomy a couple years ago and am pretty sure some of my symptoms may be aggravated by hormone imbalance. So even though I dont need to be on birth control I am wondering if would help to balance things out and in turn settle down some of the POTS symptoms?? I would love to hear some advice... Bren