brethor9

Hey Katy

No I haven't been tested for any infections. At my last appointment the specialist just said my liver was enlarged and that I was showing signs of Cushing's so he wanted me to start titrating the florinef......but now with everything else I wonder if there isn't something else contributing...... I was shocked that 1/4 tab of florinef could cause that much damage but he said some people are more susceptible over time........but now with these sleep episodes I just don't know what is going on.... think it may be time for me to see an endocrinologist........

I have been having my episodes since 2007....just came on out of the blue but for whatever reason reducing the dose of florinef has made them much worse......I have also noticed during some of these episodes I get a really sudden dry mouth and severe leg cramps too....I thought maybe dehydration but my fluid intake seems okay....it is a mystery.....I know recently I was diagnosed with an enlarged liver too and I am terrified that this could be a tie-in somehow? This is one of those times when I worry that I am ignoring something and just attributing it all to dysautonomia

WOW Peace that is weird that you also reduced your florinef and are experiencing these episodes. Mine have definately come on fast and furious since lowering the florinef.....I am wondering if it could be an adrenal thing? I was told to lower the florinef because i was showing pre-cushings syndrome....so now I am wondering if being on the florinef so long has somehow messed with my adrenal function?

Bren

problems with anesthetic can be an issue with mast cell also. I have always had a hard time with these and any type of opioids. When I had my son, I had 3 epidurals, a local and finally a general delivery because nothing would work; doctor had never seen anything like it......I love being an enigma ...... NOT!

Bren

Oh Ash....my heart goes out to you!! Big Big Hug! I have been where you are and can definately sympathize with everything you are going through; symptom wise and doctor wise ;(........ I think mostly everyone on this forum has had horrible run ins with docs in the ER. Unfortunately most docs you run into are going to have no idea what POTS/Dysautonomia is much less know how to treat it! One doctor in ER actually told me they deal in trauma and easily treatable issues not chronic illness maintenance and that was my GP's responsibility ;(.......... After awhile I just refused to go to ER any more....it just stressed my system even worse and they wouldn't end up doing anything for me. Do you have a POTS specialist besides your cardiologist? who diagnosed your POTS? I was able to get in-home saline infusions ordered through my specialist but I know others who have gotten them ordered through their GP or another specialist. Is your cardiologist aware of how much the sailive IV's help your symptoms? perhaps they would be willing to order them for you so you don't have to keep going back to ER. Also, if I ever have to go to ER I make sure I carry copies of my specialists consult notes with me so I can just give them to the ER doc and I don't have to explain (and they don't give me that look like I am making it up .....).......hang in there sweetie! hopefully your cardiologist will be able to help you

Bren

glad to know I am not the only one but hate that you guys are experiencing it too! Peace I know what you mean.....its like after awhile the sedation feeling wears off and I am completely awake again......what the heck is that all about and what the heck is causing it? I know its not a presyncope episode and I don't think its a sugar issue the only thing I am thinking is it could be a mast cell thing? but if you guys get them too maybe not.......all I know its freaky and I want to know a cause for it?

Bren

BUMP...... has anyone been experiencing these sudden sleep attacks or forced sleep? I recently lowered my dose of florinef (due to possible pre-Cushings and enlarged liver issues) and have noticed they are coming on again. They come just out of the blue...no rhyme or reason.....it is not like I need to lay down and sleep but feels more like I have been hit with a tranquilizer dart or the flick of a switch. I have been continuing with my mast cell protocol but wonder if the florinef was keeping some type of reaction under wraps? The episodes are scary because not only do I feel like I need to sleep but my HR drops and my breathing gets slow also...... so very weird.....

Bren

Hang in there girl!.....big hug....... I think we have all been through this since getting sick with this illness. If not with a spouse, then with family members. It is a lot to handle especially when you are trying to deal with your body completely losing its ability to co-operate with you I finally decided after years of putting myself last the only way I would be able to deal with this illness is if I started being a little more selfish. Its survival! my hubby, friends, family were not very happy at first but as time has passed and the more information on my illness they learn things are starting to get better. I still on many occasions have to remind everyone that just because I am not crawling to the bathroom any more does not mean I am cured....... yes I have changed but in some ways for the better....I just don't take the crap any more

Bren

yes I get this and like Naomi, I get pooling in my legs, arms and hands....the worst for me is mornings when I wake up and it feels like my chest is full of fluid...I assume you can get thoracic pooling also if it can pool everywhere else........

Bren

actually when I first gave up gluten I was sooo sick for atleast a couple weeks if not more. One of my friends who had gone through the experience years before said it was detox/ withdrawal and that it would get better once your body got used to not having it. For me and my severe stomach issues it did seem to eventually make a difference. I realized also that it was more of a wheat issue for me than gluten so I am able to have some gluten but not wheat....when I eat wheat my system can tell instantly and will feel horrible for several days after until it clears out of my system again.........

yep you are right issie I am going through all of this right now. I have several different specialists doing different skin biopsies and an oncologist is doing the bone marrow biopsy for the mast cell ..... not fun! so glad to hear how you are improving Issie if anyone can do it, you can .....curious though how are you managing such a restrictive with the mast cell issues and your trigger foods?

Bren

WOW Tinks! that's a lot to take in isn't it? I am also being checked for this.....just had my MRI last week. My specialist told me that it can cause dysautonomia so now I am just waiting to hear about the results. Have they told you anything other than you have Chiari 1? I have read about patients who have had the surgery and their symptoms completely resolved after so that is promising. Hang in there.....big hugs <3 I know you must be feeling overwhelmed ;(

Bren

yeah Seattle I hear you.....I used to love exercise now I pride myself on the days I am able to cook dinner or go grocery shopping

futurehope; I think my specialists are confident they have narrowed down my root causes...... I have been officially diagnosed with MCAS, presumed EDS Type 3, exercise induced urticaria, hot/ cold urticaria, severe secondary dysautonomia, OI/mild POTS, Gastroparesis (these are all likely being caused by the mast cell issues and EDS).....and just recently it is looking like I have some Pre-Cushings symptoms going on thanks to long term use of Florinef.....yikes right?? The nausea is likely a mast cell reaction to the activity.....seems like almost anything can be a trigger

I have the exact same reaction .feel okay during activity but as soon as I stop WHAM! ... I assume it is related to having blood volume issues and mast cell reactions.....but not completely sure

thanks futurehope I have been trying to do a little exercise here and there but have to be careful because I am one of the unlucky ones that has breathing issues and near anaphylaxis episodes especially when doing cardio based exercise. Taking an antihistamine before hand helps a little but the other symptom is the unrelenting nausea I have right after any type of exercise. Feels like I am dying! I kind of have to do short bursts throughout the day before my body realizes what its doing lol ...... I just think it is still so weird how we can go from being completely normal to this???

Bren

still doesn't explain the subset of people on this forum who were incredibly active before onset of their symptoms......I know for me personally I ran 1.5 miles 2-3 x week and worked out weight training etc 2 hrs every night......now I have difficulty doing my laundry ....... my crash happened not too long after having surgery....and now knowing I have exercise induced urticaria I have to be very careful. Happy for the people who see success with it though

I know its not the same but when I went to see U2 last summer I had a friend drive, brought bottled water, earplugs and wore compression stockings....I also carried a small handheld fan in my bag. (oh and took 1/2 an ativan before I left ...... Not sure what they will allow you to have on you security wise but maybe some of those things would help for coping. I found the earplugs to be very helpful with drowning out some of the external stimulation so I wasn't too overexposed. I was very glad in the end that I went and I ended up being able to cope for most of the night afterall.....I was a mess for about a week after but it was worth it I hope you are able to go and enjoy this once in a lifetime experience....this illness robs us of so much.......good luck......crossing my fingers for you!

Bren

I should have added....I have testing every month to see where my levels are sitting at and act accordingly.....but I am also one of the people that need to get saline infusions biweekly to keep my fluids topped up....my chronic dehydration really messed up...... but again everyone is an individual case so i am certainly not advocating that just because I am to drink that much everyone should

for me personally because I am hypovolemic I was told by my specialists to drink 4-5 litres spread out over the day..... my body has trouble holding water so I think I could never take in too much because it goes right back out but definately check with your doctor to be sure......are you taking Florinef? it can be helpful to stabalize the fluid issues also

Bren

Benadryl is a medication you have to be careful with like anything else. I have MCAS and have to use it a lot for breakthrough episodes....I was worried because I read that it can cause long QT syndrome (fatal arrhythmia) in some people but my specialist said it is rare and only with people who have established heart issues. Still I really try to be careful with it and take as small a dose as possible.

yes it is incredibly expensive but worth it when it works here in Canada it comes in gelatin capsules......my specialist had me titrate up starting at 100mg up to 600mg depending on reactions.

Hey Alex

I take .05mg ativan 2x daily sometimes less. Have been taking it for a couple of years before I was diagnosed because just like everyone else it was anxiety ..... It was always one of the meds that worked best for me but never for its normal indications. It always seemed to help the weird symptoms like nerve pain, stomach pain, leg cramps, headaches and bloating etc......on and on. I have recently found out that benzos can act as a mast cell stabalizer ......who knew??? that's why it always helped to get me out of a bad episode.... zantac, ativan, benedryl have kept me out of the ER many times ...... I am well aware of the addiction issues and my doctors are not really concerned at this point considering all the other crap I have going on lol. I look at it this way.......every one has a dependancy on something BUT if it helps me to function even a little....it is completely worth it!

Bren

Hi Cupcake My POTS/Autonomic specialist is Dr. Juan Guzman at Hamilton General Hospital....he works along side the director of the Autonomic Centre, Dr. Carlos Morillio who also sees patients I believe. I have had nothing but a positive experience with Dr. Guzman and I am a very complicated case I highly recommend him he is an absolute blessing to me.....very kind and never rushes during my appointments...answers all my questions....and if he doesn't know is not afraid to refer to someone else

Hooray Issie Okay I seriously want to know your diet plan!! Can you PM me the details?

Hey Alex the florinef has been helping but I am wondering if all of this is a sign that my body just can't process it any more whether I want it or not and for whatever reason. I find that is the biggest problem with meds....they help for awhile and then they turn against you I have been taking florinef for 2 years but just started having major issues in the last month or so (it just came on sudden....weird) the doc has me trying every other day to start tapering but believe it or not I feel it on the days I don't dose. I dont think my body likes the up and down. So the only other option I have is to see if I can get it compounded into a liquid and start a taper that way. I don't think you need to worry but now you know to keep an eye on it at least if things start to go weird...or weirder..lol!

Thanks for reminding me about the licorice root.....I am definately going to look into that!......I am just not sure what type etc...and is it safe with MCAS? Do you know of any brands???...... Oh the drama!

>>>>Again, I am not saying this to scare anyone who is currently taking florinef, most people are probably fine with it and may not have these symptoms but I thought it was important for people to know that there is the potential of these side effects when taking any form of steroid over a long time frame or in high doses.>>>> Knowledge is power

Bren