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Medication sensitivity? (Read 4099 times)
Britt
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Medication sensitivity?
09/10/12 at 09:09:35
 
Hello all! Thank you for all the informative posts!!! It's good to be armed with all this information. So for about a week I've been feeling real awful. It actually started with my first dose of singulair. Over the next few days I came down with one of the worst flus I've had in a long time. (I read that singulair can do this??? Any thoughts on this?) i stopped taking the singulair in fear that there was a connection. Then I went down to UC Davis, which was for the most part a big waste of time. She did give me the go ahead to take more antihistamine than I was currently taking. She pretty much gave my chart blanch to tinker around. I usually take Allegra and zantac, and Zyrtec as my "emergency"med. So over the past week I've been trying different combinations with my meds, but I don't feel well. I've tried ditching my Allegra and opting for 2 Zyrtec a day. I've tried a taking a 3rd Zantac. I tried addding a 25 mg benadyl to te mix. I tried to take 2 allegra and one zyrtec (i notice that when i take too much allegra, my arms and hands seem to get pins and needles easily during the night!) And today I took my Allegra (and zantac) in the am and Zyrtec early afternoon (which is pretty much what i was doing before  Cheesy)I feel ok, but slightly on the edge. Maybe trying all this with the flu wasn't such a good idea! Lol I don't know! Do you find it important to space your antihistamines out when you take more than one kind? I'm tempted to try the singulair again. I'm just so flippin scared! I think we all can relate..... Never know what you're going to get! I am soooo sensitive to meds, and often have adverse reactions. Vistoril (which is supposed to be calming and sedating) was first prescribed to me as my rescue med and it spun me through the roof!!!  Anyways, I would appreciate any thoughts, even if it's to tell me I'm nuts!!!!! Lol speaking of nuts (I swear I'm really a normal girl:)) I can't help but wonder how the psychiatric drugs I've bee bout on through all this play a part in the way I feel. Does anyone else have any experience of going up and down the crazy med roller coaster like me?? How do these meds effect people with mast cell disorder? How do these meds and antihistamines interact???? Gosh, I am so tired of evaluating myself trying to figure out what makes me feel bad, what makes me feel good. I just want to live again!!!!!! Thanks for listening😉
Smiley brigitte
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Doozlygirl
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Re: Medication sensitivity?
Reply #1 - 09/10/12 at 11:11:14
 
Brigitte,
Sorry your UC Davis appointment was a flop. It is horrible to yourself out on a limb that way.  

My first piece of advice may feel cold, but it comes from a place of experience with all of this:  Take in a deep breath and slowly let it all out. Continue to focus on breathing as it is the single best way to strengthen your parasympathetic tone.    

I have been there, wound so tight, that it literally made me feel crazy.  It wasn't until my autonomic nervous system crashed, that I began to be able to relax.  But then I had to work hard to get some balance again.  A HUGE part of balancing out the high energy/wired sensations (which is known as the sympathetic nervous system) is to support the parasympathetic nervous system and get the body to be able to unspin from being so wound. Trust me, fidning ways to find calmness will help so much and even have an effect how you feel on a day to day basis.  

Now from this place of calmness, you must approach any changes to medications differently.  I HIGHLY suggest you only make ONE change at a time and keep at that dose for a few days.  it is absolutley impossible to tell what is going on with your frantic approch, as it can take a day or so for you to tell if you can tolerate a med.  Of course if you have severe reactions, then stop the med.  

By flu, do you mean GI symptoms or respiratory symptoms?  Either could be related to mast cell reactions and not the medications.  The goal is to get to higher doses of antihistamines, but none of is did it overnight.  I actually took several months to find my groove with meds.  Many of us try to keep our emergency meds saved for emergency/actual reactions and not take them daily.  

My emergency med is benedryl, and I only take it for specific symptoms (ones that tend to escalate to my severe reactions).  I take Z+Z as my daily meds and extra for breakthrough symptoms.  I started with 3 doses of zyrtec as prescribed and ended up in bed for 3 days then was WIRED for the next two days (couldn't even sleep, stayed up all night). I then learned I had to taper up slowly.  I also find hydroxyzine 20 mg helpful at night to get rid of brain fog issues in the next morning and singlulair has helped me as well.  


Your goal whould be to find a HI you tolerate.  Many of us started with either Claritin, Zyrtec or Allegra.  You may have read several tapering protocols, but here is what I eventually did with success.  Take one pill then see if you can tolerate.  If so, take a pill the second day.  Once you have taken one pill for a few days or a week, then consider taking the second pill.  Take one in the morning and the second later in the day or 12 hours later.  

I then found a H2 I could tolerate.  Zantac or pepcid are often recommended for mast cell patients.  When you have been at a two pills a day for several days of your H1, then try a H2.  And do the same thing to taper up the H2.  I'd suggest that you stay at twice a day on H1 and while tapering up of H2 (taken at the same time of day) before considering on going to 3 times a day.  My docs all wanted me to get to 2 times of day of Z+Z before adding hydroxyzine, then adding singulair.  I am now tapering up to 3 times a day before trying a stabilizer.  

Good luck in finding some relief in all this madness.  
Lyn      
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Britt
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Re: Medication sensitivity?
Reply #2 - 09/10/12 at 13:35:17
 
Thank you for responding Lyn SmileyI know I must sound crazy manic the way I described going through my meds and trying different combinations!!lol. Though not protocol, it wasn't too manic! I tried to do it mindfully! I started Allegra 2 and 1/2 years ago when I was diagnosed. I was told to take 1 180 mg, Zantac twice a day and vistoril (hydroxyzine) as my "rescue" med. at the time of diagnosis, I was nonstop triggering to the new carpet we laud in our house, some crazy strong commercial cleaner I was mopping our tile with and all the other frangrances around me, BUT, I didn't know I was triggering. I was diagnosed high anxiety and put on a bunch of meds. It took a good year plus to make a connection between my triggers and my "panic attacks". My doctor refused to see a connection. So I did the meds as prescribed. Bit I noticed that I didn't feel too well on the 180 Allegra, so I bought the 60mg. I was taking those along with my Zantac twice a day. Still not feeling well, I went down to 1 60 mg. Allegra a day. The vistoril didn't work for me at all. It spun me out for days, couldn't sleep, it was awful! So I couldn't take that. So I bought Zyrtec and started using that as my "rescue" med for awhile. It was when I became part of this forum again that I started taking my 60 mg Allegra, 2 Zantac and added 1 Zyrtec perminately to my meds. So it's been about 4 weeks that I've been doing that. But I still don't feel very good, which could be a combination of stress, triggers, or simply not being on the right meds. When I went to Davis she told me to take Zyrtec twice a day. So I started that, but it didn't make me feel any better. In fact it gave me a headache. So 2 Friday's ago insurance finally approved my singulair, I was so excited to try this med! The first night I felt pretty good, a little weird but good. The next day I started coming down with this flu, temperature, cough, headache, mucus in my chest. It was weird because I don't know anyone who is sick and my husband and son didn't catch it. That's when I saw that these are "common" side effects of singulair! Ugh! Coincidence or not, I stopped taking that for now. So here I am. One 60 mg Allegra, I Zyrtec and 2 Zantac. I haven't tried Claritin! I didn't know that was an option! As far as calming down and breathing, I know I need to do that more for sure. Sad story on that. I knew I needed to learn how to get my body into a parasympathetic state or at least learn to ground myself when I'm feeling "squirelly", lol, so at the advice of a good friend 3 weeks ago I made an appointment with a reiki specialist. Again, I was so excited! But when I went in the room to lay on the bed, all I could smell was laundry detergent and fabric softener!!!! Ugh! I had to get up and leave Cry But the frustrating thing is that I know this feeling of adrenaline overload, on edge, wound up feeling forbear triggering. I just know it. So I will keep fighting. Today I made another appointment with a local immunologist/ internal medicine doc! I hear he is wonderful! Now whether he knows anything about mast cells disorders is a while other story! Hes out of the office this week, so I was unable to ask. I'm keeping my fingers and toes crossed! Thanks again for responding Lyn. It helps knowing there are people out there who will listen!!! Smiley and I'm always here for anybody who needs someone to lean on too! anymore advice??... I'll take it!!!!!
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PJP123
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Re: Medication sensitivity?
Reply #3 - 09/10/12 at 14:29:39
 
I'm just speaking from my experiences so like I told you the other day I stopped all my meds because I just wanted to clear my system and start over.

I was doing great on nothing and eating everything in sight.  I ate italian food and indian food in 2 days.  Well I started having trouble breathing and swallowing again and so I started with the zantac.  Then I'm allergic to ragweed and grass and was sneezing like crazy so I took zyrtec.  A few days later and I'm thinking I feel like I have lupus again.  So I start reading "The Mastocytosis Society" quick reference guide:  Medication to use and avoid and I see anticholinergic drugs (benadryl which I suffocate from and Zyrtec supposedly has mild anticholinergic symptoms).  So for some of us the antihistamines may be making us worse.  Also I stopped Singulair because of pain and weakness in my legs.

Any of the experts know anything?
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Britt
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Re: Medication sensitivity?
Reply #4 - 09/10/12 at 14:42:43
 
Thanks pj! Maybe I should stop my
AU meds for a day or two and see what happens! Maybe it's because I've been diagnosed bipolar type 2 (which I'm not completely sold on) but I keep thinking I should try Doxipin, but then when I REALLY think about it, the thought of trying a new drug scares the $@&># out of me! I have tried sooo many pschyiatric drugs over the past 8 years, and I almost always experience either a bad side effect or a bad reaction. That is why I question all the drugs I'm on. I started off on Zoloft, and I never felt good on it, so instead of taking me off of it, they just added to it! I just feel that over the past few years I've gotten myself into a complicated mess and I don't know where or how to start to get out of it? Do I need these psychiatric meds?????? I don't know! Maybe all I need is to get my mast cells under some control!
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PJP123
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Re: Medication sensitivity?
Reply #5 - 09/10/12 at 15:11:31
 
If you're not sold on B.P. I'm not sold on it either.  My husband was convinced I was because when I felt okay (never great mind you), I would take a sledgehammer and knock out a wall in our house because it didn't have insulation.  After tearing a room apart for 2 days I'ld end up in bed for a week and never finish the job.  

I've been seeing a neuropsychiatrist for 2 1/2 years.  I went to him because I wanted to be bipolar so I could take meds and feel better.
Guess what, he said no I'm not and I don't have depression.
I told him I wanted to try another anti-depressant (tried like 6 of them) and he said it won't help you don't have depression.  

I'm tired, no interest in anything, don't like doing things I used to like, don't socailize with people anymore but I'm not depressed LOL.  Just good ol mast cell disease.

He prescribes a med for adult ADHD.  It's the only thing that keeps me awake and upright.  I think I have POTS too.
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Britt
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Re: Medication sensitivity?
Reply #6 - 09/10/12 at 15:26:19
 
Haha! I want bipolar!!! Trust me, I want to be diagnosed with anything that will give me a drug to make me feel better! Lol. I suppose we should be careful for what we ask for! I must remember that things could be a lot worse. All I want is to get to a point where I can get a few good days under my belt and forget about this stuff for awhile! Always montitoring myself for how I feel is getting old. But it's hard not to do when you feel so crummy. It's a vicious circle   Tongue
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Re: Medication sensitivity?
Reply #7 - 09/11/12 at 08:42:59
 
Brigitte,
I realize you may have made those drug changes mindfully, but in my experience medication reactions do not necessarily happen immediately, so it may take a while to sort out the medication reaqctions from the mast cell symptoms.  I've had reactions that occur several days into the medication trial.  I've also noticed it can take a while for me to get to therapeutic levels of a med.  

From what I have read and experienced, Claritin is a good starter H1.  Dr Afrin recommends it because it has far fewer drug interactions with other meds.  I found that I eventually neededmore punch, but tolerated it well. Note that the readitabs have "stuff" in them the tabs don't have.    

Breathing for me is better than meds in getting my mind to stop racing and it is prescribed.  

Best wishes in sorting it all out.

Lyn
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PamH
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Re: Medication sensitivity?
Reply #8 - 09/11/12 at 09:04:03
 
Wanted to throw out that I had trouble with allerga, It just made me feel on edge, so I stopped that and use claritin and zyrtec instead.  I agree with Lynn slow and steady when switching meds, I got into some trouble switching to fast!
Pam
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Re: Medication sensitivity?
Reply #9 - 09/11/12 at 11:29:10
 
when starting a new masto med or changing one....was taught long ago by masto friend...
never take the full dose ...cut in half pill and take for a day or two and then add the rest of the dose..your body needs to adapt to the change..however if it was an antibody that body need for infection this would not be good
redbird
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Britt
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Re: Medication sensitivity?
Reply #10 - 09/11/12 at 13:28:14
 
Hi redbird  Smiley what do you mean by this? I understand the first part, take it slow. I bought generic target Claritin today, so I will cut it in half in the morning and see you it goes! But what did you mean by the second part about the antibody!?  Wink
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Re: Medication sensitivity?
Reply #11 - 09/12/12 at 03:08:55
 
to me....anytime that I need an antibody for infection etc...I know that my body is in need for whatever problem I have..and it needs it NOW...
the change of masto meds on a long term base I work into slowly..and again I would say...this works for me..maybe not everyone
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