Welcome, Guest. Please Login
MCD - Mast Cell Disorders
  Signup for free on our forum and benefit from new features!
  HomeHelpSearchLogin  
 
Page Index Toggle Pages: 1
Send Topic Print
Needing some help or encouragement:( (Read 3729 times)
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Needing some help or encouragement:(
05/16/14 at 16:21:40
 
Go figure I was the last one to write a post under the "need help and encouragement NOW" section back in October. Luckily I figured that one out. It was my moisturizer.
But for about 2-3 weeks now, I've felt terrible and I can't figure out what's triggering me. I've been having terrible stomach aches with vomiting and all the other nasty symptoms including daily facial swelling.
Everything kind of came to a head yesterday. I felt really off, like I wasn't really there. I was crying all day. Today much of the same. I am stick I the "fight or flight" mode and it won't turn off.  
I took extra antihistamines including Zantac. I don't know what else to do Cry
I took an Epsom salt bath yesterday, but I think it made my symptoms worse (I've always been weary of those for me personally, but being desperate, I thought is give it a shot)
I haven't felt this bad in a long time.
I'm reaching out to y'all for maybe some advice, or just a place to tell how I'm feeling.
My husband and parents just don't get it. They try, but who can understand this craziness we go through without actually experiencing it?  Undecided
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Needing some help or encouragement:(
Reply #1 - 05/18/14 at 13:07:20
 
Today while at the grocery store I got very dizzy and disorientated with that woosh woosh feeling. I had to go to the bathroom and hide in a stall until it passed. It really scared me.
So I've been racking my brain trying to figure out what is triggering me. It has to be something.
I am wondering if it could be my moisturizer. I know Ihave major issues with plant based products, so I found a fragrance free, preservative free petroleum based ointment called Thermaplex Barrier Balm. It has 4 ingredients, none of them plant based, just petroleum and silicone based. I checked my amazon account and found out I received it and probably started using it on March 31st.  I've been feeling pretty bad for about 3 weeks, so I'm not sure if this makes sense or not. Anyone have any thoughts (I'm going to stop using it to see, but I'd appreciate any feedback)
Does anyone else have issues with petroleum lotions etc.?
Thanks:)
Back to top
 
 
IP Logged
 
mikev
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 188
st louis, mo
Re: Needing some help or encouragement:(
Reply #2 - 05/18/14 at 14:41:24
 
bridgette:
just remember it's spring & atleast where i live pollen is really bad. may not be anything put extra stress that allergy season can have for us. Also i tried epsom salt baths at a desperate time. I have lots of skin sensitiveity issue. this was a real bad move. i have issue with heat of bath or shower anyway but epsom salt really dried my skin & increased pain.
mikev
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Needing some help or encouragement:(
Reply #3 - 05/18/14 at 15:57:52
 
Thank you for responding Mike:)
Maybe that's what it is. Spring.
I'm just a total wreck. I'm going to stop using the theraplex just in case.
I am curious whether or not petroleum based products are a problem for any mast cell patients. It's always been on my questionable list Huh
Back to top
 
 
IP Logged
 
Lisa
FORUM MODERATOR/ADVISOR
*******
Offline


I am not a doctor.
Posts: 1499
Volta Redonda, RJ Brazil
Re: Needing some help or encouragement:(
Reply #4 - 05/19/14 at 16:03:02
 
Ah Brigitte, I'm sorry!  It's really hard some times, isn't it?!!  

Without a doubt in my book epsom salts are a No No!   Think about it - when you have a scratch and you pour either salt or vinegar what do you feel?   Pain!  Yep, and burning pain at that.   BINGO, MCs are part of that I have no doubts!    But it could also be the lotion and you should hold out on it for a few months and see if, after Spring has Sprung and the pollen season has passed a bit if you could try it again but then you don't want to try it in the hight of summer so perhaps waiting until winter has returned is best because there's a 2nd polen season at the end of summer/fall to deal with.  

If dry skin is an issue, you may want to begin taking a spoon of olive oil every day, this might help and increase your water intake that's a big must.    I was beginning to have issues with my mouth being horrendously dry and my dentist ordered me to carry a bottle of water with me everywhere!   I didn't realize how little water I drank during the day until I began to do that and dehydration is a big trigger for MCs!

Check how much you sleep - not sleeping enough is an issue and yes, Mike's very right pollen could be a problem.  

Yet, what do you do?   Often when these seasons come one, no matter what the trigger is, we go through seasons of reacting and it doesn't mean we're stuck in a vicious circle.   Yet we need to adapt to them and increase our doses.  Dr. Castells has some of her patients on 3 doses of meds a day, two just doesn't hack it.   Ivé had to do this to compensate for surgeries or medical procedures and this helps to calm things back down and then I can back down off my meds, no problem.  

I hope this helps and I hope you get better quickly!!!!!


Hugs!

Lisa
Back to top
 

Don´t forget, there is so much more to life than being sick!
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Needing some help or encouragement:(
Reply #5 - 05/25/14 at 17:28:18
 
Thank you for your response Lisa! You're a doll:)  Your support means a lot to me! I know I come on here and mope a lot Undecided and ask a ton of ridiculous questions!
This disorder is terrible. It unpredictable and mean Angry lol!
I never really associated the seasons to my flares until now. I guess I figured since I wasn't sneezing (like everyone around me), that the pollens and such didn't bother me. But I think I was wrong!
You mentioned that Dr. Castells has told patients to take meds up to 3 times a day. Can you kinda tell me of what and how much?

Yesterday I had had it. I was determined to get out of the house and enjoy an afternoon and dinner at Lake Tahoe with my family. So I took my usual 60 mg of Allegra (160's give me migraines) 10 mg Zyrtec and 150 Zantac in the am. I took another 60 Allegra (i always do this) and 150 zantac late morning, then 10mg Zyrtec late afternoon. I went and bought some liquid Benadryl and took a nice dose of that. Then took another 10 Zantac pm (I always do this) it got me through the evening! Horrible headache, but I did it! And for that I am proud!  I've been cooped up in my house for 5 weeks.
Maybe I need to medicate more?? I just get such terrible headaches from the antihistamines.

I also stopped taking all the ibuprofen I usually take to see if that helps. I broke down and took 1 this morning to try and shake the headache. I am also not using the moisturizer.

And thank you for reminding me to drink my water. I do not drink nearly enough.
And olive oil! Should I drink a tablespoon of it? I am salicylate sensitive, but I haven't been able to narrow everything down. Maybe I could tolerate olive oil Smiley

And I agree. NO EPTSOM SALT BATHS!  
Back to top
 
 
IP Logged
 
PJP123
Guiding Light
***
Offline


I Love YaBB 2!
Posts: 193

Re: Needing some help or encouragement:(
Reply #6 - 11/13/14 at 07:29:26
 
Hi Brigitte,


No epsom salt baths!!!! I took one recently because I knew I had low magnesium and I almost died (theoretically) from it.  Don't know what exactly the ingredient is that makes me so sick but never again.

Also  read my post regarding Cimetidine and drug interaction that are toxic to us.

Back to top
 
 
IP Logged
 
Joan
FORUM ADVISOR
*****
Offline



Posts: 1502
Colorado
Re: Needing some help or encouragement:(
Reply #7 - 11/15/14 at 16:29:18
 
Has anyone tried coconut oil?  I've had a lot of luck with that, as well as olive oil which I use almost all the time.  You can use either in cooking and smoothies as well as a skin cream.

I wonder if you had too much magnesium.  It's absorbed through the skin as well as through diet, so it might have been a problem if you were in the bath very long, 20 minutes or more.  Sometimes the heat of a bath can be a trigger, too.

I found that I am sensitive to changes in elevation.  When I go up to around 8500 ft or more, I flush.  Tylenol and antihistamines seem to help.  It's much better, though, if I'm super-hydrated before I go.

Also, weather fronts are known triggers, probably because of changes in barometric pressure.
Back to top
 


Joan
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Needing some help or encouragement:(
Reply #8 - 11/16/14 at 10:38:26
 
Thanks joan. I do need to invest in a blood pressure cuff. I'm sure that my blood pressure is dropping when I have these dizzy spells.
As far as singular, I can't take it:( I've tried to take it 3 different times and everytime I got bronchitis. Bummer.
I'm hoping Dr. Afrin will have some good ideas for me.
But as you said Joan, the best medicine is to avoid triggers. I personally can't use coconut, olive or any other oils. Again, bummer. Major sal intolerance here. Although I "think" I might be able to tolerate sunflower oil. My son was eating Kettle brand potato chips last weekend while watching a movie. Against all better judgement, I ate them. And not just one! Lol normally I would get almost immediate tongue sores from oil, and that didn't happen! The next day I looked at the ingredients and it was potatoes, sunflower oil and sea salt. I'm still not ready to test this theory though! Who knows, could have been part of my episode the other night.
Back to top
 
 
IP Logged
 
Britt
Mentor
****
Offline


I Love YaBB 2!
Posts: 327

Re: Needing some help or encouragement:(
Reply #9 - 11/17/14 at 17:44:30
 
I live up pretty high, 6,500 feet and I notice I'm extrememy tired when I drop down to lower elevations. Weird. My feet always swell up huge too. Both on a plane and driving!
Back to top
 
 
IP Logged
 
Page Index Toggle Pages: 1
Send Topic Print