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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> Medicines >> Working on my antihistamine regimen http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1338512188 Message started by PepperPOTS on 05/31/12 at 13:56:28

Title: Working on my antihistamine regimen
Post by PepperPOTS on 05/31/12 at 13:56:28

Hi, I'm a pretty new member here. Previously, I've just posted in the new members forum and triggers forum. I've been reading a TON of posts, though, and have been learning so much! I am so thankful to have this source of information and support.

I haven't been diagnosed yet (waiting on appt w/Dr Afrin), but it is looking like I likely have MCAS. I have hyperadrenergic POTS and have tried almost all meds for that and they have been unsuccessful. I started trying an antihistamine regimen a couple months ago, and more recently, a low histamine and low salicylate diet and have found great symptom relief between these two. That said, I am still having periods of debilitating symptoms (like right now: massive fatigue and sound sensitivity, chest pain, facial flushing, irritability).

I've been following a med regimen that seems to help a lot for the past couple weeks and have, over about the last week, started taking an extra H1 here and there when my symptoms increase. However, over the past few days, I've had to take LOTS of these extras and they don't seem to help that much.

Here's my current regimen -
Around 8am
generic Allegra, 180mg
generic Zantac, 75mg
generic Claritin, 10mg

Around 6pm
generic Allegra, 180mg
generic Zantac, 75mg
generic Claritin, 10mg

Throughout the day, I'll alternate an extra Allegra and Claritin when my symptoms increase. I really don't think this approach is working very well, as my symptoms don't seem to decrease for very long after taking an extra H1.

Last week, I tried increasing my Zantac to 150mg BID for five days, but I got pretty uncomfortable bloating and when I decreased back to 75mg BID it resolved.

I also tried taking generic Benadryl, 50mg, the other evening. The next morning, I felt pretty awful. It felt like the sleepiness/slowed reaction time I usually have about an hour after I take just 25mg of Benadryl. Interestingly, I didn't experience that the night before. Not sure whether I should try that again.

If anyone has any ideas to share, I sure would love to hear them. I'm desperately searching for some additional relief until I can get to see Dr Afrin.

Title: Re: Working on my antihistamine regimen
Post by PJP123 on 05/31/12 at 14:55:16

I take singulair 10 mg. at night and this helped tremendously with pain in my bones in my legs.

I take zyrtec and zantac in the a.m.
I take singulair and zantac at night

I am noise sensitive all the time and irritable. I don't think that will ever go away, it's just who I am with this illness.

Title: Re: Working on my antihistamine regimen
Post by Anaphylaxing on 05/31/12 at 18:31:36

Have to agree on the noise sensitive irritable and flushing as a baseline. Also tinnitus.

Might be worth adding a mast cell stabilizer to the mix. I'm sure Dr. Afrin will have good ideas for you.

I think trigger avoidance is big. I went low histamine/elimination diet for about 9 months and am just trying to reintroduce new foods now,

good luck

Title: Re: Working on my antihistamine regimen
Post by kimtg68 on 06/01/12 at 18:10:47

Histamine diet....yes! It was too overwhelming for me initially so I started with eliminating just a few items until I felt certwin I had my brain wrappednaround it and then added a few more foods to avoid.
As for your meds, I can tell you from experience with DrAfrin that he is big on starting small and safe ie Claritin twice a day opposed.to Allegra. Many of us have sensitivities and reactions to so much. Anyway, I am taking Claritan, Zyrtec, Zantac, Prilosec and Doxipen and still not enough. I have learned that many find it beneficial totake doses every six hours. I am one of them. Twice a day left too much time beyween doses and for me at least once my symptoms start it is like a snowball effect. Dr A said if you are taking a particular medication three times a day and its not working, there is no piont in taking it a forth time since it clearly isn't working for you. So three times a day is max. Also he mentioned to me that I should take a H2 blocker when taking a H1 blocker. So I take both three times a day.
Maybe by adding that third dose you could eliminate the yoyo effect you are on which causes you to pop more here and there and you might become more stable.
Hopenyou find something that works :)

Title: Re: Working on my antihistamine regimen
Post by PepperPOTS on 06/02/12 at 04:30:51

PJP and Ana, thanks for your responses! While it feels good to not be alone with the sound sensitivity problem, I sure am sorry to hear that you have it, too. For me, that trigger is very difficult to manage. One of the sounds that can set me off is my 3yo son's voice. :( Doesn't have to be loud or weird sounding, just his regular voice. Blargh.

Kim, thank you for your response, too! The low histamine diet is overwhelming for me, too. I'm also doing a low salicylate diet, as well, because I seem to be reacting to that, as well. I just made the BIG decision to give up coffee yesterday, as I have been reacting after drinking it. I'm not going to lie, I have cried about eliminating most of my food options. Its rough. Necessary, though, so its gotta be done.

Thank you for sharing the info Dr Afrin shared with you about dosing and taking H1+H2 at the same time. I am going to start a new approach with my regimen today to see if it might help. Thank you so much for this option to try!

Title: Re: Working on my antihistamine regimen
Post by Joan on 06/02/12 at 07:14:04

I think it's easier to be stable when taking regular doses of H1 and H2 antihistamines (morning and evening) and other meds as prescribed (e.g., gastrocrom and/or singular). Then I add extras mid-day, if needed, to keep things more under control.

I've had good luck taking a 60 mg. Allegra and Pepcid in the morning, and Zyrtec and Pepcid before bed. I take another Allegra or a Benadryl in the afternoon, if needed. Zantac was a little better than Pepcid for me, but I had a side effect from it. Now I use it for breakthrough symptoms.

Also, take your meds a half hour or more before eating (an hour is better) to get them working before you put any food in your stomach.

Have you tried decaf coffee? I can drink a cup a day. If not you might be able to add it back in once you're stable. It's so hard to give up foods we love, but once we feel better, it all seems worthwhile.

I have a pair of those squishy earplugs that hunters use. I used them when my kids were young, and there was so much noise in the house. Happily, I could still hear what was going on due to my super-sensitive hearing, but it wasn't irritating. My hearing gets more sensitive when I'm tired, too.

Title: Re: Working on my antihistamine regimen
Post by PJP123 on 06/02/12 at 11:56:10

@pepperpots

I'm typing with earplugs in right now. The college age kid next door has been outside shooting a basketball into the hoop alone for over an hour. No one else in my house even notices it. I reached a breaking point 15 minutes ago.

Also, coffee is my favorite thing in the world. I gave it up for a short while ...until I was stable. I take zantac. If I do my meds religiously and don't eat Italian food or processed or any triggers I can drink coffee all day. Coffee with milk is one of my staples now. Not good for blood pressure but oh so yummy.

Also back to the noise. I have 4 kids. 3 boys first. I used to work out of my home with a friend and was always telling them to be quiet. My friend would say they really weren't making too much noise. Any noise is too much for me. LOL

Title: Re: Working on my antihistamine regimen
Post by Joan on 06/02/12 at 21:19:44

I understand! My son used to have friends over and they played in our attic room. It sounded like a herd of elephants to me, but my husband said I was over-reacting. I wasn't diagnosed then....

Basketballs, dogs barking, lawn mowers, motorcycles.....On a bad day they seem like instruments of torture! LOL

Title: Re: Working on my antihistamine regimen
Post by Buster on 06/03/12 at 04:59:11

I am also noise-sensitive. I am very sensitive even when I am at baseline, but when I am having a reaction, almost all noises are very painful and create extreme stress. I wonder if there are some pathophysiologic mechanisms we share with migraine patients, because migraine patients are very sensitive to sounds and light when they are having a migraine.

Title: Re: Working on my antihistamine regimen
Post by PepperPOTS on 06/05/12 at 09:55:29

Joan, thanks for the tip about taking the antihistamines 30m-1h before eating. I'm working on incorporating that approach into my regimen.

I've been trying earplugs, as my sound sensitivity has been really bad the past couple days. They do help some.