Distraught Again & Need Help...

[Godsgal]

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.

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

[lieze]

Can you move in with your mom or in laws for a while and get help?

The care of the children impacts us.

It's constant and stressful.

If you can move in somewhere or have someone come stay with you or even come every day and help where you can just have time out quiet time I think your body will calm down.

I didn't believe it but it has made a difference for me.

I just eat a small portion of foods I can tolerate every 1-2 hours.

I rest most of the day with my feet up.

You won't believe how different you start to feel if you can just rest and relax.

Turn everything off.

No noise-nothing.

Close the door and breathe and see if you can get yourself in such a relaxed state that you almost feel half awake, half asleep.

Only get up when you have to.

Spend about 2 months this way and you will start to feel a difference if you are like me.

My episodes slowly decreased in frequency and intensity.

Only do what you feel safe doing.

Eat!

Don't stop eating or it will just make everything worse.

Drink plenty of water and flush your body out.

When you feel bad pray.

Let God know you know he is in control.

Or whatever other thoughts bring you peace.

That is just one example.

Believe me when I started out it was "oh God"

A calling out a cry.

Then it went to please help me God.

Then it went to my life belongs to you God please help keep me on the right path.

Lately it's not even about me any more it's please God provide for my children.

So I have dramatically decreased in intensity from a totally panicked state to just feeling bad and trying to get through another one.

Really consider this.

You and your body are in crisis.

Give yourself a break and let others help you.

It's a sacrifice to give up your home, your life, I have no tv, Internet, lost many freedoms I'm in a room with two beds and just dressers and clothing and some toys for the kid's.

I have what I need though-all the food I need.

And my children get good care, good meals.

I am getting stronger and it's happened without meds by just resting and letting my body heal.

I

[hilbiligrl]

I honestly am at a loss for words, as i get just as bad, but it seems my body and the meds for me are different than what works for you.... and im still learning.

I have never admitted this before on here, but here goes: 3 years ago when this illness brought me down and down bad. My mom and dad, my twin sister, my brother and his wife (they all live within one street of each other... cool huh?). Anyways, they had always helped me with the kids (as their real father skipped out on us when they were 3 and 5 and never seen since, kids are now 14 and 12). Anyways, my family has been tremendous in helping me with the kids. Since I have progressed even more sick over the past few years, we have had to have some heart to heart talks...... and as a family, we decided that not only do my children have their own rooms here, but they have their own bedrooms at my moms and my brother and his wife's (who wanted to have many children, but where only able to have one..... so they really love to help with my kids from their heart). So, in my long periods of sickness, they stay most of their time with mom/dad or my bro & his wife..... but we make it organized, structured, loving, and then some for them, so as not to weird them out. But they understand the severity of how I have become. I can no longer take them places, games, etc...... even being able to get up at the early hour and get them to school on time is a notta, as within mins of waking up, im vomiting and diarrhea quiet intensely for hours........ I do what I can when I am able and no one puts me down because I am sick...... ok, sometimes they do...... but as a mother, i do feel extremely humiliated and embarassed and i carry a tremendous amount of guilt.

So, leize has some great advice..........

When I am at my worst, which what seems to be where you are now..... has anyone tried cannibas or the marinol pill? My doc and I are working with marinol and it has really made a huge difference..... a huge difference...... if i could only afford it, as insurance won't cover it. I guess, in other words, when i get this bad...... i turn to my last and only option that helps me through it, which is the marinol.

I actually can't take atarax or benadryl....... even though i take meds for mcad..... my body reacts to atarax and bendadryl as if someone has electrified me with the most intense fight & flight mode i've ever had..... i've even had to be admitted to the er from the reaction I get from these 2 meds...... so im lost there, as those seem to work for you.......

on the ativan? do you think it would be better to try a more potent benzo during these times? if not for permanant, id try valium, but as i said in another post, klonopin works excellent for me.... .and even seems to supress my constant living in the fight & flight mode.....

ok..... i know that wasn't much help, but i noticed no one had responded yet, and i know how direly we need someone when we are spiking in our symptoms and illness......

let's hope you can find something that works for you to help you get on a better track

thoughts and prayers your way...... as you sound like you are having it so rough....... as well as I am right now, as the monthly period is in one week and i go down hard the week before.... hence why i got very sick, passed out yest and was so very sick all night and today...... ugh....

best wishes and lots of luv

tennille

[lgtaylor100]

Godsgal and everyone else who is raising children despite this awful disorder-

My heart goes out to you. It is difficult to live with these symptoms and raising children while you are feeling so sick just has to be impossible.

I thank God that my children are grown and I don't have anyone depending on me on a daily basis.

The times that my daughter needs me (she is now going through a divorce) are few and my husband always helps me then.

Lieze's advice to find a way to rest is good advice. It is important to make that happen. One doctor told me that in the old days ( i guess they were the days of "neuresthenia" , a month of complete rest is what worked to reset the autonomic nervous system.

My prayers are with you,

Lynne

[lissy]

Sorry that you are having such a hard time, I am going through a major relapse and being a full-time mom, wife, and human is very overwhelming daily. Many times I thought about " if I could only get enough rest I would get better" but that never happens in my life...No-one has honestly understood how bad I feel and the most help I have received were the children being away for a week. Which that helped tremendously but I was right back to being my usual sick self within a few days once they returned home.

I can't suggest med advice as I don't take any.

But the relaxing aspect makes a difference at least it did to me.

So I hope you find something to help you soon and maybe others with the med advice will offer more options.

Take care

Lissy

[HopeSprings]

I'm sorry - I understand the despair. I have a similar problem with chemical sensitivity, few places are safe. And I know how hard it is to care for little ones while going through this. I wish there were more clear cut answers. Have you been back to the Dr. who's handling your care?

[gertie]

I wish I had a magic pill for you. I started going thru MCS & Dysautonomia nightmare about 30 years ago. I could not

tolerate my home or anywhere else. Everything I ate caused some kind of allergic reaction even seizures. I went to

the EHC in Dallas,Tx a couple of times having allergy testing. After 3 months & a lot of money I couldn't take the

allergy shots, they made me worse. I did learn I should eat organically grown foods, & what to get out of my home

that was making me sick. Altho, I did everything I supposed to do I'm as sensitive today or more so than ever.

I finally saw a neurologist for migraines that told me I was having seizure activity & my brain was

( I believe the term is "firing too much") & he put me on Neurontin to try & control my daily migraines & help me rest.

There are newer medications since Neurontin but I've stayed with it because it was the only med I could tolerate & I am

afraid to change. I took it on a daily basis for a few years but now that I'm older & my migraines are not as often I only

take it as needed. It helped me keep my sanity (I think). For some reason I could also eat more foods with less reaction.

I find the generic neurontin/gabapentin does not work as well for me as brand name & I've heard others that take it say

the same thing. Sorry this is so long, hope it made some sense & that you find something to help you. Good luck!

.

[juliegee]

Sorry, Jared I've been there before too.

Definitely check with Dr. Afrin or have your local doc do so, BUT my guess is that an atarx (20 or 25 mg) at night would take the place of the zyrtec AND the ativan. Twenty-five miligrams of atarax is the equivalent of 2.5 10 mg of zyrtec. It also has something to relax you mixed in. It is sometimes used pre-operatively to relax patients. OR, a low dose of doxepin, like 25 mg or less is often used to treat mast cell disorders. It is an old fashioned tricyclic antidepressant, that has BOTH H-1 and H-2 in it. When I was really bad like you, I had to take that for about a year to calm my mast cells down. It worked. I slept so peacefully, ate so much better. Maybe consider a TINY dose, like 10 mg at night in lieu of the zyrtec & ativan. You may be able to cut down on some of your daytime meds once you've been taking it for a while.

I pray you find relief.

Hugs-

Julie

[Godsgal]

Thank you all for the answers. I emailed Dr. Afrin and he mentioned cancer drugs to me....I'm NOT going to do that. Period. I'm one of those simple back to the earth and the way God created things kinda girl and I know that Gleevac & Xolair aren't right for me. Definitely not yet. So can you take doxepin & atarax at the same time? I would LOVE something that would replace the zyrtec at night because it does have milk in it and I really need to get rid of that. I really feel strongly about either doxepin or atarax. At this point I'm almost ready to start stopping meds because I feel like they make me sicker. Every time I add in a med, I think I'm going to get better and I never quite achieve that. I just keep adding pills to take and not getting much relief.

I take a lot of comfort in this forum and I THANK GOD I have this forum. I'm so blessed to talk to people that understand. THANK YOU all from the bottom of my heart. One day I'm going to be better at this thing and I'm going to be helping others on here. But right now I'm a mess and I appreciate the help. I will pay it forward one day...I know I will!!!

[Frugalmama]

I don't have anything to offer in the way of help with meds, but I can definitely sympathize, Jared! I'm only on Midodrinem but it has had absolutely no impact on my symptoms. i am so sorry that you are going through all of this - but through it all, try to keep your eyes fixed on Jesus. I am sick all the time, too, and it is extremely difficult to be that way in front of my kids. My one year old has spent far more time with our full-time caregiver than with me..BUT I know that he and the bigger kids are being loved well, and I can do better for them by taking the best care of myself that I can. You have help with your kids, right? Can you take a few days and do nothing but rest? I will pray that your docs can come up with a magic cocktail that makes life more bearable for you

[anna]

Hello Godsgal,

Can I just ask if you have been allergic to milk since being a baby? I ask because my children have been milk/ dairy intolerant since birth and I am sure this is an other piece to my family health puzzle!!

[lieze]

Jared I want you to know I am not against medication.

And I am not trying to push going med free on anyone.

The fact is when I try pills I have reactions to them like a panic attack.

My heart races I flush and I feel like I'm going to pass out.

Sometimes I don't feel right until the med is clear out of my system.

I also cannot tolerate Benadryl.

My arms and legs feel like they are shaking and it feels as if I'll lose control of my bladder on just a small dose. I was also afraid to go to sleep because my diaphragm also felt paralyzed and I was afraid I'd stop breathing. This almost sounds psychotic as I write that but it's a horrible feeling whether real or imagined. If it came to life or death yes I would take it but normally if I can ride out my symptoms I do-I compare it to drug free child birth. Pretty intense and exhausting.

[Yolaclover]

I just want to hug you because I don't have any good advice but I can see you really just want to take care of your kids and be happy. I know how that feels. Lots of great ideas here, keep us posted!!!

[juliegee]

Hi Jared,

I have heard that Dr. Afrin will offer the chemo meds in extreme cases- remember he IS an oncologist. I have heard mixed reviews. Some worsen with them; some dramatically improve. They are more typically offered to patents with SM, who have NOT responded to more typical treatments. You haven't even tried any of the typical meds yet, (like doxepin or atarax right? I would not mix the two, but certainly follow the advice of your doc. I perceive atarax as being less potent.( I hope others will chime in with their experiences!) When I was very reactive, I was put on a low dose of doxepin for almost a year. I slept great. I was able to completely relax for the first time in ages. I felt very complacent and a little dulled. I ate very well. I was eventually unhappy with the fuzzy-headedness and weight gain so I switched to atarax. It does the trick, but keeps my head clear, and allows me to exercise and my appetite is more normalized. Very rarely I need to double my atarax, but I prefer under-medicating as opposed to over-medicating.

You are in my prayers. Don't be afraid to try one of these. They are lifesavers in dire cases. Use just a small dose & titrate up. I pray you will find relief.

Julie

[mwise]

Sending love and hugs out to you. I agree with the others you need rest and if you have help, let them. When I was at my worst, family and a few close friends made this difference for my children, my husband and myself. It gave me time to rest. Try small frequent meals even if you take a few bites and keep hydrated with smoothies and organic foods. You may need to change some meds or stop all your meds and/or slowly add or delete them. Most importantly keep praying and let God handle it for you-remember the foot prints in the sand-he will carry you through this. You and your family will be in my prayers.