Mast Cell Disorders Forum - Taking all my medications and still not seeing the light at the end of the tunnel

goldielove

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Taking all my medications and still not seeing the light at the end of the tunnel
01/26/12 at 12:29:41

Ok here it goes, I have been too the best Dr's for my MCAS I have listened and taken what they told me too take, upped my antihistamines changed my antihistamines taken more antihistamines, added more different medications. I have tried too keep exercising as I have pots as well and don't want too remain in bed as this is bad for the pots. I read the study that they had at Bigham and womens and saw most of the MCAS patients get much better with antihistamines, I feel like I want too stop all of this and just see what happens I am not a shocker so I could do that. I am tired of feeling sick and tired of not feeling as though I am a lot better yes I am better a little bit but most of the time I am not well. Last night was my mothers birthday we went out too eat the whole family the whole time I kept talking too myself so I would not leave and go home. YEs I am sick of being Sick I am sad for my family and sad for my husband who right now has no life either. I just wonder if I am going too be like this forever or one day get better. Ok no one can tell me this but all the Dr's I have seen said I should get better I guess my question is what is better living in fear of eating something I can't and having diarrhea and bloating , worrying everytime I go out am I going too have syncope and pass out and I never have mind you. Enjoying my new non active life when I used too be so active. Not working anymore when I loved my job?? Ok I am ranting i am just wondering when will I be the one to get better and be able too live again?? I know I am selfish asking this as we are all in this together some sicker then me i realize that, some better but when will this change, and what more can I do???

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DeborahW, Founder

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #1 - 01/26/12 at 16:28:21

Hmmm. I just went back and looked at a bunch of your old posts to see what your history was. Looks like you have had good times and then bad times, such as now. Not knowing your actual details, the first thing I would ask is who is your doctor? Do you have one of the top dog specialists? If not, it sounds like a good time to get one or to insist your local doctor calls the Boston docs for a consult. What do you think?

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Feel well!
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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Taking all my medications and still not seeing the light at the end of the tunnel Reply #2 - 01/26/12 at 17:41:29 Goldie I can sooo relate to your frustration. I feel I'm in a similar place. I agree with Deborah's advice. Keep us posted
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PJP123

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #3 - 01/27/12 at 02:05:38

I can relate to your feelings of being sick and tired of being sick and tired. I had 5 great days last week when I got on a regime of Singulair, Flovent and Ranitidine. I was reading that my meds were not enough so I added Allegra and Ranitidine 2x day. I feel lousy. Last night I took meds and melatonin (herbal supplement to sleep) and was having racing heart and feet went cold. I too and so sick of this.

My husband is going to a movie in NYC with another couple tonight and wants to know why I can't come. Every single day I have to explain to him and others what it feels like to be me. It actually sucks. He'll say that I'm not even really living and I'll reply I know. I tell him that I get to come back reincarnated and do it over again in a new body.

I've been diagnosed with Autoimmune Chronic Urticaria which means I have a mast cell disorder and that I won't get diagnosed MCAD, just chronic urticaria.

Hope you have better days real soon. Just remember that everyone on this forum gets how you feel.

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Joan

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #4 - 01/27/12 at 06:38:09

I think Debbie has great advice for you to see a top specialist. While these mast cell disorders will invariably flare, it shouldn't be as frequent as it sounds for you.

It sounds as though stress and fears about flaring might be big triggers for you, and those have been for me, too, at times. Perhaps you can ask your doctor about something short-acting to ease stress when you're going into an "unknown" situation, like a restaurant or a trip into the city. Don't think I'm saying this is all in your head, but rather that this is a stressful illness, and stress can be a trigger, Catch-22.

Let us know if you get in to see one of the specialists and how you're doing!

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Joan

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Taking all my medications and still not seeing the light at the end of the tunnel Reply #5 - 01/27/12 at 08:58:13 Joan, good advice.. I've been avoiding going out and stuff because I don't like overmedicating, but maybe for the sae of my family I should take an Atarax frst then try it... Hmmm thanks for triggering my brain
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gutless_mystery

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #6 - 01/27/12 at 10:08:03

I can totally relate! It is easy to lose hope and feel down. But....we must keep on going for our families who depend on us. I have to hope that someday someway they will figure us out and be able to help those of us who the meds don't seem to help us stabilize. I hope you feel better....sometimes just knowing that you're not alone helps a little

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goldielove

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #7 - 01/27/12 at 10:42:59

Thanks all for allowing my venting Deborah is right I have periods of feeling better and periods like this when I am miserable. I have seen Dr. Castells, I also have a new Dr here who is going too contact her and see what changes should be made, I see her again in March, but I dont want too wait that long. I think I found a Dr. here that is willing too learn and speak with the specilists which is great. She already has articles on this disease. I switched from zrytec too xyzol b/c I wanted too try it and found I am sleeping better but not feeling better I have upped my Zantac too full dosage of 300 twice a day, I take atarax at night and maybe its affecting me the next day I am going too cut down on that and see what happens I am going too play with my medications a bit and see if I can figure out what is happening. Thanks all for your support and I hope I can be there for everyone as well, as I am really just learning about this disease and there is a lot too learn and I think for us who do not respond as much too the antihistamines there is a lot for the Dr's too learn as well they I am sure still trying too figure this awful disease out.

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Taking all my medications and still not seeing the light at the end of the tunnel Reply #8 - 01/27/12 at 10:45:37 Sounds like there is some hope goldie! Hang in there
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goldielove

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #9 - 01/27/12 at 11:11:09

its funny you called me goldie lol goldie was my very first dog I owned I always wanted a dog and my parents never let me have one. When my kids were old enough 5 and 7 I got goldie my Golden retriever my love she died about 10 years ago but I will never forget her so I love the name Goldielove lol

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Taking all my medications and still not seeing the light at the end of the tunnel Reply #10 - 01/27/12 at 12:04:47 AWw, that's sad! Sorry I don't know the name you like to go by and goldie sounded cute to me
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goldielove

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #11 - 01/31/12 at 12:32:38

I love the name Goldie you can call me that anytime, in the last couple of days i have had some ok days not as bad as before I stopped the singular as I never felt it did anything for me and actually I feel better off it, I am by no means feeling great but at least I can walk my dog again and I don't cry all day, the mind game this disease plays with me is horrible I feel like I must have some involvement in my brain B/C when I am very sick and activated my mind is horrible I can't stop crying sometimes I feel like I might go over the edge and do something too myself but then I remember my kids and hopefully my grandkids that I might have one day and my husband but wow its really hard too get over those horrible days and try too remain positive

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Anaphylaxing Guru Offline Hang in there! You can do it! Posts: 836	Re: Taking all my medications and still not seeing the light at the end of the tunnel Reply #12 - 01/31/12 at 14:35:01 I can totally relate, Goldie I get SO emotional when I'm doing worse which is a vicious cycle of the reactivity wreaking havoc on our emotions and then getting down because we're worse we need to be made of steel to get through this!
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goldielove

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Re: Taking all my medications and still not seeing the light at the end of the tunnel
Reply #13 - 02/01/12 at 12:42:50

I just wish I could understand what sets me off, but even the Dr's can't tell us this. I do know on the days I am well like today I can spend the whole day busy and doing things I love and feel good, I did not have the tinnitus today and only a little bit of syncope and no burning in my body and I did not have the usual sore throat that I get when I am doing poorly. And I actually slept last night it felt so good too be calm and be able too sleep, I still get that annoying restless foot syndrome when I sit down at night and funny its only my right foot no matter what I do it keeps going like the energizer bunny I think that is my sympthatic system in overdrive. One day I told my Doctor that I would love for her too be in my body on one of my bad days just for the day and see how she handles it, so the next time she recommends I see a shrink she can actually feel what I am feeling and tell me why I am so upset on those days and why am I so happy on my good days???????? UGH

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