Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> regression http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302712596 Message started by Godsgal on 04/13/11 at 05:36:36

Title: regression
Post by Godsgal on 04/13/11 at 05:36:36

Hello all,
Newbie here! I have POTS/dysautonomia and now it's looking like MCAD due to high histamines in the 24 hour urine.
I'm feeling down today.
I had been doing pretty well for a couple months on just a beta blocker, midodrine, no antihistamines. Light cooking, light housecleaning, all done sitting of course. Not really driving or walking around much. I still use a wheelchair in public.
Every since Saturday I started having episodes. Saturday and Sunday it was extreme sudden hot with feelings like I'm gonna pass out. Yesterday my live in nanny was cooking with cayenne pepper and I started getting burning in my throat, eyes, 130's hr, feeling faint. Today I am so nauseated I can't get out of bed. And I feel hot all over again, especially my face.

I just don't get it. I'm so thankful for how far I have come. I just want to know why the sudden setbacks. What did I do wrong? I was cheating for a week on my histamine free diet for my testing and then the weather turned hot down here in south florida and I'm not functioning as well. I did take a coated aspirin last night and I'm wondering if the dye in it caused me a problem. I also ate applesauce which I'm not sure....may have histamines b/c it's cooked. I don't know.

I know I have talked to several about the MCAD meds. I started taking a claritin for this several days ago and also Pepcid this morning. I'm on a beta blocker which obviously isn't good if I have MCAD but my cardio wants more testing done first to prove I have it.

Thanks for listening and I appreciate any help, support, suggestions, encouragement.

Title: Re: regression
Post by Riverwn on 04/13/11 at 05:52:32

Hi Sweety!
You just about listed everything that you reacted to, without knowing it LOL...No antihistamines?? Dont do that again lol. Aspirin? I react to it now and didnt before. It may not be safe for you. Beta Blockers? Tell your Cardio doc that we do well on Calcium Channel Blockers, like Diltiazem.
Applesauce is fine for me, one of my safe foods but that cayenne?? No wonder you reacted, I would have too! Throw it away! Tell the Nanny, NO peppers or derivatives of it, like Curry (no no)...not in the whole house! No spicy foods...I do the exact same thing in reacting to them.

Youre gonna be fine,, just stay close to this board to know what is safe for you right now. Antihistamines twice a day ok?? You are severely under-medicated right now. Read through some more posts and see what we use. Try one carefully--let your doctor know.
Keep in cool AC and rest :)
Hugs
Ramona

Title: Re: regression
Post by Josie on 04/13/11 at 08:39:33

Hi Godsgal ,

I use a wheelchair in public as well , indoors on bad days as well . It is my enabler . Enabling me to use my energy and do anything on rough days .

I am a wobbly legged anaphylactic ;-( but I use what I need to .
I found it very hard in the beginning , now I am just me , with a different mode of transport .

Its one part of my management of my condition to allow me some life . That includes medicines and trigger management ;-) I can completely see and feel your frustration . I can see triggers in your writing .

Regards your cardiologist , there is info on the mastocyctosis society web page regards suitable drugs and alternatives , which Ramona has mentioned .

How does the beta blocker help you ? If its heart rate , it going fast , then a good antihistamine regiemn will help that . The drugs ramona mentioned will also help . If its anxiety because of the fast rythym , I completely understand . many of us here use a relaxer , to help that . Anxiety and stress , physical and emotional are triggers for many of us .if its purely the cardio doesn't listen we can get some info together for you to give them ;-)

I don't think you are regressing ;-) I think you are having stress and other triggers without the antihistamines . i find having so many meds hard at times . I want to be back how I was . Then occasionally I run out due to my ordering system being slow . When this happens even missing one dose has my symptoms shouting again , leading to me being strapped to the loo with a bucket .Sorry , not a pretty picture . All i am saying is I quickly know I need everything for their own reasons .
I now have a handbag and a pill / potions bag . I am happy I am doing better , but have moments where I would love to just go out and have an adventure without having to plan it like a miliatry procedure . Wheelchair , pills , epi pens , hand bag , hospital bag ( if going more than a mile ) safe food and drinks . OH and me ;-)
I have spent nights in hospital with nothing to change into , nothing to wash in and gone home commando too many times to leave anything behind . I was never high maintence , boy , i am now ;-)
Just to say , I know . I wanted to share my experience . I am not saying you are thinking this way . I just wanted to tell you how I ahve found things ;-)

If you can try ranitidine , it may help as pepcid is like baby food to us ( a saying stolen from Deb our forum lead ;-)
many hugs
Josie