Mast Cell Disorders Forum - I'm falling apart!

Godsgal

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I'm falling apart!
10/15/11 at 03:33:52

Not doing well.....my husband and I are just falling apart. We have a 4 y/o and an 18 month old. I'm on the full medication protocol and I'm not getting better. We're just lost and devastated. My attacks are happening now to everything. I can't get in the pantry, I get sick in the laundry room, sick in my kids' rooms, my closet, when I'm near the computer, when I sit on the couch, at church, Target, I just react everywhere to many, many things and it's multiple times a day. I can't ride in my car without the windows down and being in my garage is very difficult too. I'm very limited to what I eat and frankly feel better if I don't eat.

I know I need more antihistamines b/c benadryl and zyrtec stops my attacks. Yesterday had an attack after being exhausted. Had to take 100 mg of benadryl and extra zyrtec to stop it. Well I'm only 105 pounds so that put me out. I could barely walk. I'm desperate. I know many people see my meds and think I need more. SOMEBODY TELL ME WHERE I'M LACKING PLEASE!!! I have some major difficulties here and I don't know how to fix them. I really feel like the medicine is making me sicker honestly. I don't feel like zantac does anything for me but make me sick and pepcid makes me sick also. I get my zantac, benadryl, & ativan compounded.

My brain tells me doxepin or atarax may help me but I don't know where to put it in my med schedule or if there is something else I need. A major problem I have is some of these meds have lactose monohydrate.....a component of milk which I'm allergic too. I know my singulair and zyrtec both have it and I can't get those compounded. I think the midodrine has it as well. I have already tried compounded claritin & otc allegra (not available for compounding).

a.m. Singulair 10mg , zyrtec 5mg, Midodrine 5mg, Lorazepam .25 mg, zantac 150 mg.
noon: midodrine 5mg, lorazepam .25mg,
2:30: zyrtec 5 mg
p.m. Singulair 10 mg, zyrtec 10 mg, lorazepam .25 mg, zantac 150 mg.

I know these meds are making me sick...and I know they have milk which I'm allergic too. I'm not sure how to proceed. My sensitivities are getting overwhelming. My whole family is suffering. Please anybody take the time to guide me on what to do. I have never had such a hopeless feeling in my life. I believe in God and in Jesus. I just need to be rescued. I need a door to open and I keep feeling like all I'm getting are doors slammed in my face. I don't want to suffer in front of my kids. That's the hardest. For my little boy who is 4 to walk up during a major attack and ask me what is happening. I'm having faith SOMEBODY out there can guide me with this difficult predicament I'm in. Cry

THANK YOU FOR ALL YOU ALL HAVE DONE FOR ME THUS FAR. AND GOD BLESS US ALL.

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redbird

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Re: I'm falling apart!
Reply #1 - 10/15/11 at 05:09:45

I don't know where you live but you need to find a masto doctor fast or at least a doctor who will consult with a spec masto doctor..
another thing that comes to mind in reading your post is that STRESS plays a big role in our lives and can cause lots of problems..
I also do not know how to keep stress out of our lives..
looking at your meds..and goodness knows I am not a doctor but a masto doctor needs to look at them..
as far as foods have you tried the histinane free diet that some use for help as well
I am wishing and hoping better days ahead for you
redbird

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Kate:

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Re: I'm falling apart!
Reply #2 - 10/15/11 at 05:19:19

Do you feel worse since you started all of the mast cell meds? Or has it been since you've added more? I wonder if you could somehow ween yourself off of some of them and start over. That way you would know if the meds are causing the reactions. It's just a thought and a doctor would definitely have better answers than me!

I totally understand how you feel in regards to being a wife and mother. I have been there. It is overwhelming and depressing and you feel like you are letting everyone down. But, don't give up.....there are answers!!!!

Is there anyway you can get back into Dr. Afrin? Maybe if he sees how bad off you are, it will help him better understand.

Many, many HUGS to you!!!!! YOU WILL FIND AN ANSWER AND YOU WILL GET BETTER!

Kate

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Enko

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Re: I'm falling apart!
Reply #3 - 10/15/11 at 09:34:53

Hang on, don't give up! It is alright to say "I can't do this anymore!". Really - it is. But when you hit the bottom it is time to say "I'm turning a new page". First recollect yourself, calm down and then make a plan: "OK, things are standing like this... I can do this and this to make it better". Then go from there. Don't allow yourself to run in circles and in panic, that isn't helping anyone, and it's certainly not helping you! So, calm down, cool your head, arm yourself with patience and start from the start. I believe that there is people here that could give you an advice what you could do with meds, but the doctors are the most competent help. Please do try to talk with dr. Afrin.

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Joan

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Re: I'm falling apart!
Reply #4 - 10/15/11 at 21:17:48

If you are still having bad symptoms, then you do need your meds re-adjusted. If you believe singular and Zyrtec are helping, ask dr. Afrin about doubling the dosages you're now taking. What you are taking is a very small amount.

If you prefer to try something new, I would add doxepin or Atarax at night, because they can cause tiredness. Atarax is a precursor to Zyrtec, so you should be able to tolerate it. Be sure to run any changes or additional meds you want to try past dr. Afrin. If you're taking the Ativan, he might think it best to cut back on that when you add doxepin, as both are mildly sedating.

Some things that might help with sensitivities....

Remove all scented cleaning, bath, and laundry products from your house, especially fabric softeners and softener sheets.

Put all perfumes, air and carpet fresheners away, too. Use All Free and Clear for laundry. Use unscented, clear Ivory liquid or Palmolive liquid in the kitchen for dishes.

Switch all body and personal care products for your whole family to unscented ones, including shampoos and soaps.

Wear an N95 mask when cleaning, especially if there's dust or mold. Those masks are available at any home store, such as Home Depot.

There are steroid nasal sprays or you can try nasalcrom nasal spray, for help with the sensitivity to smells. Ask your doctor to prescribe something to try.

Bed encasings might be helpful if you think you have allergies. They are zippered covers for mattresses, box springs, pillows, and comforters, and they keep mold and duSt and dust mites inside the encasing where they can't trigger you.

Good luck, and be sure to talk these things over with Dr. Afrin.

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Joan

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Lisa

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Re: I'm falling apart!
Reply #5 - 10/17/11 at 01:59:51

Jared, I fully agree with Joan. Dr. Afrin´s your doctor, right? Then you need to speak with him and see what he can do to help you. He needs to see you again. He needs to see if his colleagues can run you through some testing perhaps and find out what more is going on.

Give him a chance, Jared. I think that Dr. Afrin can indeed help you and get tothe bottom of this.

Lisa

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Don´t forget, there is so much more to life than being sick!

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Godsgal

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Re: I'm falling apart!
Reply #6 - 10/17/11 at 05:27:07

I have gotten rid of all the perfume & fragrance type stuff. Getting the baby's diaper creams out today. I emailed Dr. Afrin and he mentioned Gleevac & Xolair.......not a huge fan of those. Don't think I will take them actually. I want to try Atarax first and see. I have an appt. with him coming up soon and I want to get in with him and see what he thinks. It's been rough lately. I have noticed that if I do too much around the house or in the heat it will totally set me off. CRAZY how my body does this. It's like it falls apart and stops working if I do too much or if I'm in the heat very long.

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Joan

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Re: I'm falling apart!
Reply #7 - 10/17/11 at 11:40:15

What you're experiencing is not unusual for mast cell patients at first. If you cut back on activity and pace yourself with frequent breaks and not getting over-heated, you'll find you can build up your stamina. Right now, your body rebels when it gets stressed from any cause, emotional or physical, and that includes too much housework. It won't always be this way.

Part of recovery is figuring out how to do just a bit less than what triggers symptoms! Then you build on that. You can still do what you used to do, just not as much and not all in one session. Some things to try that helped me were:

Avoid heat as much as possible. It's a huge trigger! Do as much of your work before the heat of the day or later in the evening. Turn on the AC or a fan, wet a t-shirt or scarf and put it on, fill a spray bottle with ice water and spray yourself often, drink cool (or cold, if you can tolerate it) water all day long. Take a cool bath or shower.

Work for 10-15 minutes, then sit down and have a cool drink, play with the baby, read, watch TV, or whatever is relaxing. Then 15 more minutes. If that works, increase to 20. If it's too much, cut back to 10.

Prioritize. If no one's completely out of clean underwear, no need to do laundry today!

If the baby needs you, then the dusting can wait. If you can't clean the whole bathroom in one day, that's okay. Do just the one fixture that needs it the most.

Please know that you can build your stamina, and you WILL be able to do many things you used to do without reacting. It takes time and patience and faith and the right meds.

I would always try the usual oral meds before trying stronger ones, but if you have high IgE, Xolair might be very helpful.

Sorry if I've asked you this before, but have you had your vitamin levels checked? If you're not on a varied diet, and if you aren't processing foods normally, you could be a little anemic or have a vitamin or mineral deficiency. If you're not absorbing nutrients very well, it could make you feel tired. Dr. Afrin or your regular doc can order those tests.

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Joan

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Godsgal

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Re: I'm falling apart!
Reply #8 - 10/17/11 at 13:13:11

Joan I know I was low on vitamin D at one time. I really do need to have that checked again. I'm seeing my local hematologist soon. I can ask him to check that. My meds really sedate me too. I know that something is off with them. I want to feel like myself again. The person I've known my whole life. I miss that person...not what I was able to do but the attitude, the feelings I felt,.....I was energetic, happy, silly, etc. Now I have joy...something deep within me but I definitely don't have the Disney happy I have always lived with. I'm a pretty silly easily excited & pleased person. That's been gone since last December.

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jennj

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Re: I'm falling apart!
Reply #9 - 10/18/11 at 10:11:46

I don't have any advice to add as I'm new to this too but wanted to tell you that you're not alone. I relate to what you have said, your sense of urgency, and my heart goes out to you. I also have a 4 year old and a 24 month old. What has happened to my health breaks my heart every day - not for me but for my kids. I want them to have a 'normal' mom who can do the things with them they love to do. I can barely get through the day now. I react to everything - diapers, wipes, opening the pantry, helping them brush their teeth, etc etc. I know exactly where you are coming from and just how hard this is. On a positive note - we are STILL here. This disease has not killed us and what they say doesn't kill you only makes you stronger, right? So, while physically we may not be as capable as some parents we can make a point to be there for them emotionally every day. Since getting this sickness I tell my kids over and over how much I love them. No, this isn't the ideal way to live life but it doesn't mean we can't still find joy in it. I know it's easier said then done. I struggle every day. I am so grateful for the advice on this site and hope that you are able to find the support here that you need. We're all in this together. You are not alone!
Jenn

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Joan

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Re: I'm falling apart!
Reply #10 - 10/18/11 at 14:17:06

Definitely talk with your doc about the meds being too sedating. Maybe he can change what you take and how or when you take them, for example, spreading them out over the day, so that's not as much of an issue.

It's very hard to adjust at first, when you feel as though you don't know how much and when you'll be better. You're going through something difficult right now, but you will get back your fun self once your disorder is under better and more consistent control. I'm not a lot of fun on days when I don't feel well, but with the right meds, there aren't many of those any more. I used to react almost constantly, and now I have lots of days when I don't need much medicine at all.

You might also try keeping a food and symptom diary for a month or two. It could be that the histamine produced from eating something that is a trigger for you might contribute to your fatigue. Remember, this all is happening with little ones to take care of, and that can be exhausting even to a person without other issues.

Keeping your anxiety level down about all this is critical. Stress is one of the top triggers for almost everybody with mast cell disorders. Taking some time for yourself to nap, meditate, or pray each day might help. There are also CDs you can get that are designed to help lower stress.

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jbean

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Re: I'm falling apart!
Reply #11 - 10/19/11 at 10:56:08

Hey Sweetie!

I am falling apart too! But for different reasons... just lost my job.

Anyway, for what it is worth, I can tell you this. When I first got diagnosed, I was a physical mess too, felt like I would drop dead most every day.

It is almost as if it takes awhile for the meds to "kick-in" and calm down your system. I have to say, for me, it took several months of these up and downs for my body to finally get over itself and shut off. Once it did, it pretty much stayed that way, until now that is, when I get all stressed and such.

My point is that how you are doing now is NOT how you will always be doing. I remember thinking I would never feel normal again! But it DID calm down and then I started to really feel normal again. One thing I have learned, and this is just SO hard to do, and I have to do it right now as I freak out about losing my job, is to NOT let yourself freak out or think that how you are feeling is going to be permanent. On this point, you just have to trust your masto buddies on this one. When we tell you that you will feel better eventually, we are telling you from our experience in the trenches.

A real BIG masto trigger is stressin! Boy, does that one get me like no other will! So I have these things I do. They are NOT to do work when I feel like crap, I do yoga, read books, crochet, etc. Sometimes you just have to plant your bum on the couch and put life in SLOW-MO. To heck with the dirty house, etc... it will just have to sit. That was a tough one for me, as I was a perfectionist, but I had to let go of that stuff. Now, when I feel bad, I just say to myself "today is a sit down day", and that's what I do. And don't feel bad about letting other people down and put guilt on yourself. You know, we all have to learn to adapt to things, and if your kiddos and hubby have to help out a little more, it teaches them compassion and kindness, and that is a HUGE beneficial lesson that will go a long way to making them better people who are emotionally successful.

So hang in there sweets! It will work it's way out eventually.

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Enko Guiding Light Offline Posts: 164	Re: I'm falling apart! Reply #12 - 10/19/11 at 11:01:33 Jbean, sorry to hear that about your job
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Godsgal Tutor Offline I Love YaBB 2! Posts: 66	Re: I'm falling apart! Reply #13 - 10/19/11 at 12:36:56 Wow JBean....what you said is what I wanted and needed to hear. GOD BLESS YOU. Thank you for what you said...it meant a lot. Terribly sorry to hear about your job. That is rough and I will definitely pray for you re: that. Thanks for blessing me tonight
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jbean Mentor Offline I Love YaBB 2! Posts: 286	Re: I'm falling apart! Reply #14 - 10/19/11 at 15:09:20 Not a problem happy to help. Thanks so very much for the prayers... need Father God's help bigtime right now! Thanks for the good thoughts Godsgal and Enko
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