brethor9

Congrats Jangle that is great news....you should be very proud! Bren

katybug I am the same as you on the nights when I can't fall asleep and the adrenaline is really going I find a half cup of coffee really helps....so weird.....must help to break down the adrenaline or something.....but if I drink it in the afternoon I am wired for sound and not in a good way lol.... Bren

same here..thought with my new MCAD protocol I would be cured ....yeah NOT!...it's like being stuck on a really bad merry go round and you just can't get off! Stopped being fun along time ago ;( I agree with others no matter how much it scares you though and worries you...you cannot let this illness control your life because then it wins. I have been sick with symptoms since 2007 and completely debilitated since 2011 and I still have a hard time adapting to this new life......its like living with a sleeping bear all the time....have to be so careful....but in saying that I am realizing that we have every right to enjoy the good days...they are so few....and not feel any guilt or think that we don't deserve it somehow or stress about the 'what ifs'. Living with this illness day in and day out we all deserve a gold medal

I have severe dysautonomia, chronic orthostatic intolerance, mild POTS and recently MCAS....and like you my chronic never relenting symptom is lightheadedness in any position.....florinef was helping but after a year seems to be not working as well anymore Bren

Rama; there has to be something to the MCAS theory as there are a lot of us who have finally seen improvement with symptoms that have been plaguing us for years. Personally, its answered a lot of issues I have had since childhood.....chronic urticaria, asthma, chronic sinusitis, severe gastro issues (including pathology that showed possible lymphoma but my specialist (who is NOT Dr Afrin and practices in Canada) says mast cells can mimic this. I have been struggling with this in some capacity my whole life and completely disabled for the last 2 years; I have tried every medication on the list for POTS and the only ones that have given an inkling of relief is the mast cell protocol. Maybe others don't test all of their patients for it because its not a real area of interest for them........and the testing is quite involved. As for Dr Afrin, of course he diagnoses a lot of patients...that is his specialty. I have been diagnosed by 2 different specialists here in Canada (one an oncologist)....they can't all be wrong Bren

I was lucky with my psych too....she was the only one who actually believed me out of all my initial doctors.....she laid the groundwork for my eventual diagnosis thanks to referring me to other specialists. She was thrilled when I finally got a diagnosis. If it wasn't for her I would still be told its all in my head

I found this meaning on Wiki......personally none of it applies to me before I got diagnosed or even now. Seriously how can we be deconditioned when our body is running a constant marathon? Even doing a load of laundry is like going rock climbing! Before I got sick I worked a 50 hr week job, ran around after my autistic son and worked out for 2 hrs every night.....that is far from being deconditioned ;( sorry for the rant....I just really HATE that term ;( and as far as I know there is no test available to the general public to test it Bren Deconditioning is adaptation of an organism to less demanding environment, or, alternatively, the decrease of physiological adaptation to normal conditions. Decondition may result from decreased physical activity, prescribed bed rest, orthopedic casting, paralysis, aging, etc. [1][2] A particular interest in the study of deconditioning is in aerospace medicine, to diagnose, fight, and prevent adverse effects of the conditions of space flight. Deconditioning due to decreased physical effort results in muscle loss, including heart muscles. Deconditioning due to lack of gravity or non-standard gravity action (e.g., during bed rest) results in abnormal distribution of body fluids.[3that

interesting as I was just reading an article lately that stated Benadryl is one of the listed drugs that can cause long QT Syndrome....kinda scary for us mast cell people since a lot of us depend on Benedryl to help control our episodes. Definately making me think twice about using it as much. Bren

I agree with Arizona Girl.....maybe if everyone on here started flooding this doctor's email with our own opinions of an illness WE have to live with everyday he may rethink his very inaccurate research of dysautonomia/POTS. Doctor's like this do so much harm to an already fragile understanding of this syndrome....I really wish they would stop with the "I don't understand it; therefore it doesn't exist mentality".... Bren

yes me too all the time.....my new mast cell meds have helped a little with it......I am starting to realize too when I am really low on fluids and especially salt it gets worse. My home nurse says the salt is very important in keeping everything stable not just the fluids. I didn't realize how sick you can really feel just having low sodium.

sooo glad to hear she is doing better bananas I hope you are feeling better now too! Bren

Hang in there Bananas..((.hugs)) ...... I would be getting her in to see her doc just in case..... especially if she doesn't normally have the neck and back pain.......I wouldn't assume it is just vertigo....she could have a virus or infection. Try to take care of yourself...its normal for anyone to feel more stressed when our loved ones are sick...... unfortunately it does make us POTSIES worse than normal. Bren

Hi Canadian Girl I also live in Ontario and am being treated through an EP/ ANS specialist in Hamilton. I have nothing but good things to say about my doctor...he is wonderful, kind and very knowledgeable. There is more than one specialist at the Hamilton Hospital though and I am not sure which doc you are seeing but I have heard good things about the others too....I know another patient who sees the director of the ANS program and I think she is happy with his care. If you want more indepth information and what I went through you can PM me Bren

yeah mornings are not good I also don't sleep well at night due to pain, tachy, night sweats, etc etc......never feel good upon waking.....I think our bodies go through a lot during the night that we don't consciously notice and we also wake up dehydrated. First thing I try to do is fill up on fluids before even attempting to get out of bed. Bren

WOW! I feel better knowing I am not crazy having this sensation in my head. It just freaks me out..... E Soskis: yeah Dysautonomia; the gift that keeps on giving!....I know what you mean I also worked in the medical setting and every time it happens I think stroke too! It is just such an alien feeling..... my home nurse was by the other day and noted my vitals were completely whacked and I ended up having another freaky episode (muscle spasms, shortness of breath, low BP, flushing etc)......when I told her what had been happening she said I was badly dehydrated and low sodium levels can cause these sensations along with the stupid MCAS. So after 3 bottles of gatorade, salt, zantac, benadryl, claritin etc an hour later I was back to feeling my regular crappy self I haven't had another head sensation since upping my salt and fluids again so hoping that's all it was Bren

Good for you Rox I do think if you have primary POTS you certainly have a better chance of recovery. If it is secondary to an underlying condition ie MCAS, Dysautonomia, EDS you are in a more difficult position to recover. In my case my POTS was mild compared to the severe Dysautonomia and O/I and now diagnosed with MCAS and EDS. I have realized that I will probably never be cured but a girl can always hope and I agree with Kelly.....it drives me nuts when my specialist says I am stable in his note.....just because at that moment in time I wasn't all tachy certainly doesn't mean an hour later I am not flat on my back from a crash. I wish they would realize how sudden symptoms can change with this illness........ Bren

you and I are so much alike Issie, its scary Bren

with POTS though you can have wild swings and it isn't necessarily error related. I have very wide swings in my blood pressure in just shifting my body. My home nurse has made note of this as well as my specialists....I can have a swing of 30 points just from sitting to standing....its scary....my nurse says she can actually feel the change in my arm veins Bren

Yeah I am the same as you Alex....I can literally almost pass out from having an animated conversation or laughing too much....sooo weird Bren

I experience the same thing....in fact I wonder if this is not the reason why my body crashes so severely when I try to stop or taper down the florinef? An article I read said the chemical compound is almost identical to cortisol...definately has to be a co-relation. I have noticed how florinef helps with other symptoms like stomach pain, headaches, and how when I taper I get really moody and irritated and just feel horrible.....mmmmm

So this is going to sound weird....has anyone experienced like a sudden dropping/shunting sensation in their head?? This happened to me today. I wasn't doing anything but sitting and watching T.V......all of the sudden boom its like my head inside dropped like an elevator and since that happened I am horribly dizzy, I have a slight headache, neck pain and a little nauseous. I used to get sort of similar sensations in the past (felt like I was having a stroke) but it has been a long time....it just came so out of the blue and I am not sure what caused it. I am not slurring, no numbness or severe pain....like I said just a soft headache....could it be the start of a migraine? any ideas? Bren

Hi all So I am curious about Florinef and if anyone has noticed that it helps alleviate symptoms other than blood volume, dizziness and lightheadedness? I recently started the MCAS protocol and thought that it may be possible to start lowering my dose or stop the florinef and see what happens. I have tried to do this several time in the past and each time about a week after reducing or stopping I crash badly. It isn't related to blood volume though....I get incredibly moody and irritable, my stomach becomes intolerable with pain, bloating and severe indigestion despite being on tons of antihistamines and zantac. I start to have more muscle and bone pain and basically just feel horrible After a couple of days of going back on florinef all of these symptoms start to settle down again. I was reading that florinef is almost identical to cortisol (one binding receptor difference) and cortisol effects estrogen and progesterone etc so I am really wondering what this med does besides fluid volume retention? Has anyone else noticed any other symptoms it helps with and had difficulty stopping it? Bren

I was told to keep it at a minimum.....to be honest I felt so horrible I wasn't wanting to talk much

I have a copy of this presentation saved.......its been very helpful! I live in Canada and we do not have a lot of mast cell specialists hanging about...in fact most of the allergists here won't even acknowledge you unless you have full blown mastocytosis I finally lucked out thanks to another patient and my internist and got referred to a specialist who is now dealing with patients with MCAS-POTS-EDS and is doing a clinical study on the comorbidity between the three syndromes. After 5 long years I am seeing a little light at the end of the tunnel

I have this happen too...my home nurse said it can happen with narrow pulse pressure and having low stroke volume.....she always laughs when I stand up because she can actually feel it narrow if she is taking the pulse manually....freaks her out every time Bren