brethor9

39 symptoms started in 2007

Actually I am one of the few that has reacted to Florinef more like a general steroid.....after being on it for 3 years I have been tapering down slowly because I was showing Cushing like symptoms (moon face, swelling around neck and back of shoulders (humpback) and I wasn't on a super high dose..... my specialist said that any steroid can cause these symptoms in SOME people because it builds up in the body especially the longer you are on it....this drug has been a love/ hate relationship for me after being off of it for several weeks I just got slapped back on it because my system was crashing too hard ugggh........its such a catch 22 with this illness Bren

I am actually like you Spinner classified as mild POTS but severe Dysautonomia with O/I my ANS symptoms are far worse than the POTS, although I do have MCAS and EDS III so that doesn't help either Bren

WOW! Alex I am sooo sorry you have been having these episodes!! ....sounds similar to the autonomic storms I have suffered in the past..... still do but thankfully my mast cell meds usually pull me out of them. I agree that you should definately hold at the dose you are at and maybe going even lower if they continue (you could always liquid compound)..... as you know a lot of us are super sensitive to medications...also my specialist told me that certain medications tend to build up in the body over time and you don't metabolize them the same...... (I started having this issue with Florinef and in combination with an enlarged liver) just food for thought hang in there! (((big hug))) Bren

I have the same issues as Katybug.... cannot even tolerate a little without feeling horribly ill....I was never much of a drinker but once I started getting sicker the reactions just got worse in my case I also believe it is because of my mast cell illness and the fact it dehydrates me even further...... Bren

Kris I have the exact same episodes! I always say it is like getting hit with a tranquilizer dart.....or narcolepsy. I definately feel it is tied into diet and glucose somehow. I also have those mornings where I cannot wake and feel like I have been drugged....scary sensation. I used to work in a diabetic clinic and once I had an episode and the nurse did my blood sugar and it was really low not high.....she called it reactive hypoglycemia. None of my specialists have been able to explain why they happen but I have found if I eat any type of carb or certain types of sugar it will bring one on without fail...... which I had an answer for you ..... hang in there! Bren

If you haven't tried Florinef I would give it an honest shot. I am also a vasodilator and its been one of the best meds for me. I actually just had to restart it recently because I crashed pretty hard and my POTS went into full swing again ....... my body for whatever reason just won't hold the sodium and water and I was swelling up pretty bad (I actually found it interesting you can swell from being dehydrated and low sodium....weird). Also, antihistamines have been helpful as they do slightly constrict the blood vessels. This has been a better summer for me than last summer which kept me pretty much inside lying down ..... hang in there hope you get some relief..... Fall can't come soon enough! Bren

mine goes back and forth in the same day.....I drink and literally pee it all back out..... I am chronically dehydrated no matter how much I drink....never stay hydrated longer than a couple hours......very weird...... Bren

Hey Tinks I am doing okay.....as best as I can I guess..... lying low and tired out lately from all the specialists appts .. ....will try to send you a PM later Just one thing springs to mind? Are you taking any Florinef in the morning before you get up? That was how I was instructed by my auto specialist to take it as apparently that is when your body needs it the most? I agree with others; you should be starting on smallest dose possible and titrating.....talk to your doc even about dosing every other day....that is the schedule I am on now and maybe the side effects will settle down I also wonder if maybe your Chiari and Florinef just are not a good mix together......have you tried Mestinon or Midodrine?? Hugs Bren P.S. glad your little guy is doing well...... they keep us busy don't they? lol

all I can say is YES and hang in there! I even get remotely hot now and I crash completely......so sick of not being able to even enjoy a 25 degree day without feeling like I am going to die my potassium levels are fine so I chalk it up to being a autonomic or MCAS issue, either way I am unimpressed! feel better Spinny Bren

In some people MCAS can actually be the cause of their Dysautonomia/POTS; like me but MCAS symptoms also manifest differently for everyone just like POTS.... Bren

Hi Emma I used to get very painful heartbeats when my tachy would get really out of hand....my specialist thought it was just due to the changes in vascular pressure and because they were so forceful..... I found a small dose of beta blocker during those periods helped and also extra magnesium....I still get painful beats but they happen in my carotid artery now....yikes they are very painful and freak me out too because I also get lightheaded with them ...... but my specialist says it is nothing to worry about.... hang in there! Bren

Lying flat on my back makes me feel worse....I feel like I am being strangled/constricted in the neck an my head pounds. I have been sleeping almost sitting up for the last year or so and find it makes a huge difference for when I wake in the mornings or during the night......unless my EDS is really acting up and then for whatever reason I can only sleep on my stomach with my head half off the bed...... my hubby said its like watching a Sloth sleep at times lol! Bren

No but with having POTS/Dysautonomia, MCAS and EDS I never know which symptoms are being caused by which illness .....even though I am medicated it only controls so much. The unrelenting exhaustion/weariness, is my worst symptom.....I feel like I am just treading water all the time Bren

kalamazoo; you are totally not alone yes the veins in my hands sting and swell and it can happen at anytime...the pain does wake me up and my hands are very swollen in the mornings, also when I do any activity and if I get in higher altitudes....I assume it is over dilation maybe?? I also get that horrible stuffed head feeling and high heart rate as soon as I get into any kind of heat....can't even have a hot bath anymore or cook near a really hot oven but now I wonder with the recent EDS diagnosis how much of the vascular issues are related to it ...it's all a toss up! either way it all ***** big time! Bren

yep I couldn't have said it better......you describe what life is like for me now so perfectly.... especially managing the flares part! I think that's why I go back and forth with the grieving process because of this illness....have had to give up so many things I enjoyed.....on the other hand I have also gotten rid of a lot of things that were toxic ie unsupportive friends, incredibly stressful job (but I loved it at the same time!), and have strengthened relationships that were being neglected because I was so caught up in my previous whirlwind life....so maybe there is a bit of a plus side......I just have to keep it in perspective Bren

wow my legs go ten times a deeper shade of read and purple..... my mom jokes a corpse probably has better circulation than me good article though Bren

Thanks Alex Yes it is nice having more pieces to the puzzle and definitive diagnoses; but to be honest even with the additional meds I am still struggling on a daily basis. I am starting to think once you hit a certain age no matter what the illness, you have little chance to getting back to your baseline before onset its all about adaptation at this point..... and I look forward to the day when someone invents time travel lol Hugs Bren

only 1 cup in the morning unless I am having really bad tachy or super dehydrated. I usually drink a big glass of water then coffee....but like alot of others if I go overboard I will pay for it in negative ways Bren

I too was in excellent shape before succumbing to dysautonomia/POTS..... in fact I was an exercise nut! 2 hrs of intense cardio and weight training every night. My stomach was so toned (200 crunches every night) that my Dr once mistook one of my muscles for a tumor lol...... that's why I get soooooo angry when crap articles keep coming out saying in a nice way we are lazy. I agree that if that's the case why doesn't more of the general population have this then??? arrggggh..... in my case I kept digging and finally was diagnosed with mast cell and just recently through biopsy....surprise!! EDS..... so in my case the dysautonmia/POTS is actually being caused by the EDS/mast cell issues because both disorders weaken blood vessels and effect the nervous systems. I think the ones who really need to stop being lazy are the researchers/doctors who keep chalking this disorder up to being either all in our heads or deconditioning Bren

me too!! I am like you Sue and Kalamazoo.....if I get even slightly overheated I can see every vein in my body swelling; I also get the blotching and rashing (although I was told this could be due to MCAS also)...... add the no sweating in and I am a goner pretty quickly.....I yearn for Fall already Bren

hi Tinks I am sorry to hear the florinef is giving you a rough go of things it is one of those medications that works really well for some and not at all for others. I go back and forth with it.....it helps but the side effects can sometimes be just as bad. Florinef is mainly given to help expand blood volume by helping you to retain more fluid and salt in your body and thereby increasing blood circulation and blood pressure (because you have higher volume)....all the side effects you are having sounds like your dose may be too high to start....how much are you taking? Also, with having Chiari which already applies abnormal pressure to the base of the spinal cord perhaps it is causing too much of an increase in fluids in your body now??? p.s hope your little guy is making out ok Bren

That's fantastic Christy! congratulations Bren

that's great news katybug!! Bren

Hi Green Yes....I completely crashed after my hysterectomy in 2008 (also kept my ovaries) I had been having milder symptoms for about a year before surgery and we were hoping that it would resolve after but it actually made everything much worse. My autonomic specialist said he has seen many patients who have onset of dysautonomia/POTS after a major surgery or trauma. I also cannot take any kind of hormonal intervention so not sure if it would help my POTS. I have also been diagnosed with mast cell illness (likely dormant until surgery also) and EDS (Ehlers Danlos Syndrome) fairly recently so they play a major factor in symptomology for me also.