ana_22

YAY! goodluck & congrats on your hard work paying off! may it keep paying!

Does anyine who takes fflorinef have increased GERD. ive just started taking F and noticed that my stomach feels much more acidy and im getting more reflux and feelings of tummy burning. YUK! its making me feel much worse than usual! On the upside, Florinef has made food tolerable at least for now im not gagging on everything i put in my mouth (hope this contines minus the extra acid!) Does anyone else get this increase and can you link it to florinef? what helps?

Ernie- out of curiosity what kind of disorders and what were the symptoms?

How long did it take for you to see improvement after taking the meds (macksmoms)? im asking my dr about mcad today. i was wondering if i should try taking the antihistamines, can they do any harm if you dont have masto or mcad?

Does the tryptase test exclude systematic mastocytosis?

I never had headaches growing up. HAd no idea what they felt like at all, then in 2001 I got a headache that lasted for 5 months.....nothing else just a dull ache sometimes with sharp pains from the moment i got up to the moment i went to bed. i had many tests and nothing was revealed and it went away by its self. 6 years leater i got POTS. i wonder if they were related! my sisters both suffer migraines occasionally.

where can we see that article? ans what do you mean by it willl be treatable 'soon'? thanks

i quit 2 years before the onset of POTS. I tried M a couple of times, the last time i tried it was 5 years before i got POTS it left me seriously tachycardic....i wanted to go to the ER but i knew it was from M so just waited it out and slept it off....after then never again!

yes....most of the time i feel terrible and heart rate is ok!

no worries guys. x

Thanks guys for your input! I definitely didn't means panic causes PoTS! i just meant that those susceptible to panic attacks may be susceptible to POTS. Thats all! And i wanted to see whether it can play a role in recovery. Thats all! And i guess i will never know if my panic attacks were POTS or just panic attacks. my first one was after id climbed a round of stairs, but then i would get them situationally later (on long bridges and waiting in traffic). So its hard to say. Im sorry if i offended anyone. i really didnt mean it!

I was reading about POTS and panic disorder and how sometimes they may be related. No im not saying all the symptoms are in your head, but that the same thing that causes panic disorder may cause pots (unless of course something else is causing your pots like EDS, MCAD etc. I suffered panic attacks before pots but they weren't debilitating, just annoying. Pots for me is totally debilitating. Just thought this would be an interesting topic. Especially after reading the anxiety thread.

Thats what i dont get.....why does it decrease? and why do people come off florinef (apart from side effects reasons)

I have just started taking florinef to try and increase my blood volume. I just have a question for you guys! Is the blood volume increase permanent...say once you have built up some more volume you can try get off florinef? My BP is okish low normal 105/75 usually. So my cardio thinks the dizziness is more a volume thing than bp thing.

i had internal tremors last year.....thankfully they have eased up a bit.

CONGRATS!!!! on making it through your first day! may there be many many many many more xxx

Avanza helped me (i think its remron? in the USA) but it took a month to kick in.

i just did a google search and saw this Adrenaline and the Inner World: An Introduction to Scientific Integrative Medicine (Hardcover) by Dr. David S. Goldstein MD PhD looks interesting, has anyone read it or familiar with the author. does he treat dysautonimias?

What did the urine catch detect?....ive had a few, i think for serotin levels and pheo. All results were normal range.

Kikasta- was your BP really low before you started florinef? also you said it helped with food and appetite? im staring F tomorrow and am hoping it helps with my appetite and the amount of food im able to eat! How long does it take to see an effect?

just a thought...... you were probably crashing after alcohol because it was leaving you dehydrated. i remember before i got sick and would drink the next day all id want is ice cold water! my big crash that has left me well crashed out for a year happened after a night out. i'd only had 3 glasses of wine......but i still wonder maybe if i hadnt of i wouldnt have crashed like this!

i kinda get something similar. if im sleeping or resting on my back with my arms and hands crossed over my chest, my fingers start going numb. i think its bp (though its not visible) or the blood just isnt making it up to my fingers.

? Malaise ? never feel good, vague feeling of something ?not feeling right? ? Extreme pressure in base of head/neck (usually happens upon standing or bending over, sometimes in conjunction with becoming lightheaded but not always) ? Lightheaded constantly- blood pressure always low. Drinking a significant amount of fluids or taking in salt has no effect ? Dizziness ? Feeling as if I can't take a satisfying, deep breath ? Feeling like I need to catch my breath, need to take a deep breath ? Feeling ?out-of-it?, Brain Fog. Like I am living in a dream. Everything looks fuzzy and I feel like I am just very ?not with it.? ? Heart pounds strongly after standing or minimal exercise, causing the need to stop and take deep breaths. (Echo showed ?sluggish heart? but Stress test was negative) ? On the verge of syncope on multiple occasions ? Fatigue ? Difficulty swallowing- feels as if muscles in throat just freeze ? Slurred speech, problems getting out what I want to say ? Feeling as if someone is shaking my head back and forth, brain feels ?wobbly?- usually happens after turning my head quickly but not always ? Creaking/cracking in base of head/neck (usually upon movement but sometimes while head and neck are still) ? Increasingly significant tinnitus/pulsing sensation in ears (with my heartbeat) ? Ears constantly ?go out?- Everything will sound distant ? Left ear feels ?full/stuffy?, constant need to ?pop? or ?crack? ? Shooting pressure, occasionally in conjunction with pain, up the left side of neck ? Stabbing pains in head, occurs for a few seconds then dissipates. Sometimes this will happen a few times sporadically, other times over the duration of hours or days ? Visual problems o Trailing vision o Shaky vision o Flashing vision o Extreme after images o Bright lights, clouds o Black/neon spots o Palinopsia (visual snow) o Occasional episodes of double vision o Blurry vision o what looks like millions of tiny particles-- it looks like i can see air, words moving on paper while reading and looks as if the floors is moving like waves sometimes ? Muscle twitches/spasms ? Tremors (mostly in stomach, not visible to the eye) ? Occasional teeth chattering when I start feeling sick, then come the tremors, nausea, and the chills ? Nausea, lack of appetite, loss of 25 pounds over the course of 4 months ? Occasional neuropathy - shoots down arms ? Irregular menstrual cycle (ranges from 18-41 days) ? Feel very ?hypersensitive? to light, sounds, movements (unable to be where it is loud and has bright lights- this has squashed my whole social life) After being in a stimulating environment I will feel over sensitive to everything and "wired" ? GI Issues- I'll leave it at that ? Bladder pressure/tingling sensation after urinating on occasions ? Feel full all the time, no appetite, cannot eat large meals anymore ? Head rocking (my head shakes up and down in what seems to by rhythm with my pulse) ? Throbbing/pulsing sensation in my head/neck/face (it feels like I can feel my pulse in my brain) ? Sensation when I'm laying down as if I am rocking on a boat or the bed is moving, feeling like my blood is rocking up and down my body ? Body rocking while sitting up(my body actually rocks back and forth involuntarily on occasion) ? Problems sleeping ? Exercise Intolerance, I used to exercise all the time, now sometimes I need to take deep breaths after walking up the stairs. My visual problems also get worse upon exercise; it looks like the floor is falling in everywhere I look. ? Cannot tolerate the heat/cold. (I get extreme pain in my ears and head after being out in the cold for a brief period of time.) Ive highlighted everything that i get. Im really surprised that you can work!!!! I have had most of your symptoms for nearly a year and there is no way that i have been able to work in that year. hope you find answers! and when you do post back!!! it may help us all! x

Id be interested to hear what happens too. When i first got sick one of the medical professionals went to was a natropath. she looked at my iris and said that it was adrenal fatigue. i took her concoction of herbs for a while and did improve a little but was still having major problems.

Did they test all her B levels or just B12?