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http://mastcelldisorders.wallack.us/yabb/YaBB.pl Support and Encouragement >> In need of encouragement RIGHT NOW! >> Shock City http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1302445037 Message started by jbean on 04/10/11 at 03:17:17

Title: Shock City
Post by jbean on 04/10/11 at 03:17:17

I had another shock incident. This is a real change for me, as you know, I have been quite stable for about the past seven years.

I have been taking the following medications:

Morning:
5 mg Loratidine
100 mg Gastrocrom
81 mg aspirin (was prescribed this as they found out I had elevated prostaglandins, about 1450)- started the aspirin this past January

Evening:
5 mg Zyrtec

I also took Pepcid as needed, though not on any regular schedule. After my weird hot chocolate and zyrtec reaction three weeks ago, I went back to my old standard of loratidine and gastrocrom in the evening. I was feeling kind of tired out though, getting some headaches.

Yesterday, I had a whale of a reaction again, and I don't know why. This was the worst one I have ever had, even worse then when I was undiagnosed, and not taking any medicines.

I got up in the morning, and was able to do normal activities. Went shopping, ate lunch... everying just fine. I went outside for a walk later in the day, went around the block, and started to feel stomach discomfort and really tired with a headache. I went back home, and decided that I would lie down for a nap. When I did so, I suddenly got stomach discomfort (pain nausea), and again felt a very strong warm rush, head-to-toe. This time, my skin also began to burn, very strong, almost like I was dipped in acid. I started to turn red, and got tachycardia (went up to at least 120 bpm). I got up to get some water to take a Benedryl, and felt very dizzy, like I would pass out. I took the Benedryl, and called 911. I did not take the pen, as I could still breathe o.k., and was not losing consciousness.

At the ER, they gave me a workup. All labs came back normal. This time, I asked them to please take blood samples for tryptase and prostaglandins, which they did and sent out for later analysis. They also gave me other labs and an EKG, which all came back normal.

I was given another 25 mg of Benedryl, Pepcid, and predisone (60mg) with a five day prescription for more prednisone (60 mg/day). They asked if I wanted them to give me an epipen, as they would have given me one. However, I seemed to be stabalizing and could breathe well with good oxygen saturation, so I said no. Also, I am really sensitive to drugs, and I have asthma. I am admittedly a little scared of messing with the epipen, and feel I should only go that route if absolutely needed, if I am losing consciousness or can't breathe. I was kept for observation and discharged, but they advised me to contact a mastocytosis specialist about this, due to the sudden increased frequency of reactions, which I am doing.

I can not identify any consistent trigger, unless there is something in my house causing this, but there has been no significant change there. I've been stressed out of late with job hunting, could this be doing all of this? If that were the case, wouldn't I get it at work then and not at home on the weekend? It's not a panic attack if I am getting the warm rushes and skin burning, and Benedryl takes it away. Also wondering about the aspirin, as that is the new player to the game. Maybe I just don't tolerate that.

I felt some slight tachycardia last night and stomach discomfort, but took a little Benedryl and it went away. I have some stomach discomfort this morning as well. Not taking the aspirin today.

I am really puzzled, as I have been so stable for the past seven years. I don't know what is going on here.

And now my mom is in the hospital too. She went in yesterday for some back blood sugar problems and they think she had a stroke on top of it.

Everything is getting all messed up, and I'm trying to be a tough kid here, usually am, but this is all a bit much. I am really hoping my masto has not started to get worse, as I have enough on my plate already.

I know I sound like a broken record cyber buddies, but I could sure use some prayers. Clearly, I need some major life changes to a more peaceful and stable life, as well as some adjustments to the medicines. I am on good behavior the past could of weeks, eating very well and going to bed early. It gets really frustrating though when you are doing the right things and still getting attacks.

Another thing that frustrates me of late is having to go over and over what mastocytosis, Now realistically, I know that is is very rare, and I certainly do think that the medical workers are fine people who are doing their job properly by asking. What frustrates me is the lack of awareness of this disease. It is not their fault, as most of them were never taught about this in school. I just wish that it would be included more in the medical education curriculum. When I shocked out a couple of weeks ago, I actually got an emergency doc who knew about it, and that was just an entirely different experience.

I work where there are a lot of medical students, and sometimes, they come in for the evaluations too. This last time, I got the sweetest little gal, and she was asking all kinds of questions. I wound up giving her a tutorial in the ER, telling her what to look for, etc. She really appreciated it, and I have to say all of them did.

We just need to start pushing for more awareness of this people. When we shock out and such, sometimes, we look so "normal" that people don't understand the seriousness of it or what to do about it. I don't get the rashes, and go out of my way to be calm about it, so this is really a problem for me.

Sorry for the length of the post, just needed to express today!

Title: Re: Shock City
Post by Josie on 04/10/11 at 04:11:37

Hi sweetie ;-)

I understand ;-) Your list of meds is rather short sweetie and I think you are under medicated . I have just posted in idiopathic anaphylaxis with my meds , ahve a look ;-) yep I slosh ( liquid meds ) but I am not shocking as much ;-)

You have all sorts of stress on , and yes , all or some of it can cause this . I know its mostly unavoidable , so meds may be your best protection at this time ;-)

I was very scared of the Epi pen , how would i feel etc . I felt I could control this , decide when I needed it . Then I waited too long , gave it , but passed out . I had got so used to being dizzy i didn't see it as a serious symptom , it is doll . I know you know your body and I respect that . I just want you not to be fearful of the EPI PEN . if you feel you need it use it ;-)

When I was stable for 16 weeks , I felt I was getting it under control , my meds were working - then i shocked again - stress and an infection were my triggers . i was gutted , i felt back to square one . I knew I wasn't . I knew I had come along way . But it didn't change how I felt .

You are n't at square one either , you can contact your specalist and things will settle .

My epi pen is my sanity . You see , I know it works and it will for you sweets . So i don't have to be scared . I know my triggers and avoid avoid avoid and look after myself .. Ultimately I know that epi pen will work and I will be ok .

I find emotional stress turns into a biggie within 24 hours .

Now , you need to rest and drink plenty .
I think you also need a decant h2 , pepcid is like baby food to us. You can buy ranitidine over the counter . I think you should do this asap . I am on 300mg twice a day , this controls my swelling and flushing from my bowel . I still have frequent bowel motions but less pain and most importantly less burning rashes . I know how that one feels . I know its scary , but there are things that can be done ;-)

I don't know how your gastrocrom dose is by comparision to others . Ill leave that for someone else to comment on .

You will get this back under control ;-) your masties are just misbehaving a bit ;-)

as for the endless explainations , I and many others have been there sweets ;-) I hope you have a copy of the emergency plan. I ahve found pointing doctors to the videos on you tube - mast cell activation symptomology - save me time saying everything , which i seriously don't feel like having to do at the time . One paramedic asked me how I was feeling after my epi pen on my way into hospital . i said fooked . Then I apologised , as I didn't have the energy to be more eloquent , . He said no don't worry . I like someone who calls a spade a spade rather than along handled digging implement ...................... I was being honest and he could see that . He was also glad i was able to talk and wasn't feeling dizzy anymore ;-) He was glad I had called , had my and a second epi pen from the first rapid responders , I had pretty much fixed myself ;-) They would always rather find a patient well than not well ;-)

many many gentle hugs

Jose

Title: Re: Shock City
Post by Joan on 04/10/11 at 07:13:54

So sorry about this wave of reactions! I agree with Josie that you are probably under-medicated. Look through some of the posts and see what other people are taking. Personally, I am now taking 60 mg. of Allegra morning and afternoon, 10 mg. Zyrtec before bed. Also, 150 mg. Zantac in a.m. and 20 mg. of Pepcid at bedtime. A lot of people take 300 mg. Zantac and 180 mg. Allegra twice a day.

I also suspect the aspirin if these started after you began taking it. If it's messing up your stomach or if salicylates are a trigger for you, that could be responsible for the new reacting. There are some natural anti-inflammatories that you may want to check out, such as bromelain and quercetin. Dr. Theoharides has a formula he's developed for masto patients that's called Algonot. It's very anti-inflammatory (but contains fish oil). Are you strictly on the low histamine diet? If not, try to stay on it.

I question the dosing of the prednisolone they gave you at the ER. My doctor told me either to take 60 mg. for no more than 3 days and then go off it, or to do a reducing dose over a longer period of time. So, you may want to ask your allergist what he/she recommends. Going off 60 mg. cold turkey after that many days could cause another serious problem.

As for the ignorance in the medical community about mast cell issues, I would recommend printing out the booklet (or ordering it if they have it) from TMS. It's very informative, and you can either give your local hospital (and 911 service) a copy or make a shortened version for them.

I think we, as patients, are going to need to help educate the medical community. I'm going to speak to an entire hospital staff and the interns/residents in conjunction with a local doctor where I live. If others with mast cell disorders would be able to do that, too, maybe we could educate a lot of docs! If this goes well, I plan to go to the major teaching hospital in the state and try to see if they'll let me give a presentation there or arrange a seminar on the subject.

Hope you get to the bottom of this soon!

Title: Re: Shock City
Post by jbean on 04/10/11 at 12:27:03

Thanks so much Joan and Josie. Your words were most helpful! Yes, I have to get over my epi pen phobia.

I agree with you both that I am probably under-medicated. I have been trying to avoid taking medicines as much as possible, which is good not to overdose, however, maybe I was taking it too far. I suspect I was a little in denial about my disease, and resisting the meds was part of it. You would think after seven years of this stuff I would just accept it and do what was needed, but I was still fighting it on the inside. I don't know if that makes any sense, but I guess I have to just do as the great Marcus Aurelias said "Look things in the face and know them for what they are."

The time has come for me to quit resisting and start educating myself, and also time to make major life changes. I need to really work on handling stress better, remove myself from stressful situations, take my meds on time, and research my diet. And yes AVOID triggers, not play the "Supergirl" and think I can tough it out. I tend to do that too much.

You've both given me a lot to think about. Thank you so very much. I am going to start doing what you have said. I know that I probably didn't have enough medicine, as since I had more in the past day or so, I have noticed how much better my mood is. I was very down and such, and I notice that I get really down right before I have attacks. It definitely hits me right in the emotional side, so from now on, when I start to get like that, I have to realize it is my body giving me a warning signal.

I have been trying also to to reach deeper into my spiritual faith and well being, having joined a local Bible study. There are other people in the study with health conditions, about my age, and it helps to get messages of hope from other who have been there. This has helped me a lot through this process, so I will continue with that as well.

Thanks again, so very much!

-Jilly :)

Title: Re: Shock City
Post by Joan on 04/10/11 at 15:08:42

Hi Jilly,

Almost all of us have probably been where you are now. Even partial denial is a powerful thing! The hardest part is beginning to educate yourself and making lifestyle changes. Sometimes, for me, it's still hard to be limited in what I can and can't do, eat, etc. Sometimes, I really miss being able to walk out of the house with only my driver's license and my car keys. Sometimes, I feel sorry for myself, and it can all be a big inconvenience.

But, soon you'll start feeling better and can resume some of your former activities and won't feel tired and down or afraid, and that's a huge reward! Accepting it and dealing with it and finding a way to have a wonderful life in spite of it.... now, that will be when you really ARE Supergirl! You have a good start. You noticed one of your "early warning signs." That's a big step in a good direction.

Title: Re: Shock City
Post by Josie on 04/11/11 at 07:34:51

Hi Jilly ;-) ,

If you have a moment , read what I wrote in Gnbaileys introduction . I have so been there chick and I have to check myself every so often that I have not backslid ;-)

I had an early warning an hour ago , I couldn't find a word , then my ears started ringing = piriton time ( my equivelent of your benadryl ) . It sorted me ;-)

many hugs

Jose

Title: Re: Shock City
Post by Lisa on 04/11/11 at 16:56:05

Oh, Jilly!!! I'm so sorry about all of this!!! It's hard enough to go through this all the time, but harder to have been free from it and then Wham and Wham again! It's a slap in the face and I"m sorry!!

I know what your trigger was and you even named it yourself. Your attack came AFTER your mom was hospitalized, right? If so, that was the last straw event. You're already emotionally stressed, but to have your mom have to be hospitalized, that was the last straw and your bucket overfloweth!!!

Yet, here's another thing...as peaceful as things seem to have been, Jill, how can you be sure things have not progressed? When was the last time you were really evaluated and checked over? Perhaps it's time for another BMB and check on that old tryptase and prostaglandins and histamine levels! Depending upon how much time has passed, then it's time to do a bit of testing again. You need to know how your iron stores are doing in your marrow and whether or not you've having higher mediator release - it may show whether there's a need to increase your meds or not.

As to the Epi, the rule is, according to Dr. Escribano, you go by the BP changes! Not specifically by the breathing difficulties. Of course, they are a factor, but you're not looking at this properly. Your in as much if not more danger from vascular collapse with hypotension than you are with the esophagus closing up. And what about the hypertension, is this not valid to have to consider the damage it can do?

According to Dr. Escribano, you use the epi when there is vascular instability, period!!! You don't wait for only the breathing issues, but you have to step in with the epi with the BP changes as well.

As to the denial - that's understandable, up to a certain point, girl. Time to get over with it, though, don't you think? I didn't go through this for I knew that there was NO DENYING that something was dreadfully wrong with me!1 But I had so many accusations as to my mental and emotional well being that I about threw a party when we had proof that something was really wrong with me! I'm not happy I'm sick, Jill, it's hard to think about the future and hope for it, but then the future belongs to God and He is the author of our days. There are some things that are best left in His hands!!

So, time to grow up, my friend, and stop mulling over it and recognize it for what it is. I think that in doing this, you may find yourself even less shadowed by it all and this will serve as an improvement for then you may think about it all the less!!!

Well, time for me to crash out!! It's way late and I'm exhausted!!! It's been pretty hectic Monday!!

Be of good Cheer, my friend. Accepting the reality of this disease is not going to burden you more, in fact, it may give you more release then ever before for you won't have to pretend so much anymore!! It will remove some of the weight you bear in trying to hide it and deny it! That's a lot of work to have to deal with all of that!!! You do yourself NO favors trying to be "NORMAL" all the thim! Whew!

KISSES!!! AND PRAYERS!!!!!

Lisa

Title: Re: Shock City
Post by Joan on 04/11/11 at 18:12:41

Hi Lisa,

I'm interested in what Dr. Escribano said, because I haven't heard that anywhere else. I've always been told that if I'm breathing okay and not about to pass out, that I should take the oral meds and wait. The only time I had elevated blood pressure and pulse was the last big episode I had. Usually it just drops to around 80/50. I was worried with the high blood pressure and pulse about taking the epi, even though I know that can precede a disastrous drop. It didn't help that the EMTs didn't want to give it to me either. So, thanks, and I'll definitely keep that in mind. Oh, and, I was also told that there's a much higher risk of heart attack with epi in people over a certain age. Do you know anything about that?

Jilly,

Lisa's exactly right. Don't underestimate the power of family crisis to de-stabilize those mast cells! The important thing is to know when something really upsetting happens that you should increase your meds and do a self-check to notice how you're feeling a few times each day.

Title: Re: Shock City
Post by Sandi on 04/11/11 at 19:00:37

Jilly & Joan, I get your fear of the Epi, for me it stems from being seriously allergic to wayyyyyy tooooo many things, some people don't get that they have a ton of triggers also yet can take a lot of medications not worrying about inert ingredients, I just took one stupid homeopathic sublingual pill this weekend and had a full blown attack, epi does have sulfites and that's a major for me, so if oral or IV benadryl and prednisone can do it I'd like to start there, we all do have to decide when we will use that epi but for some of us we choose to wait knowing we've had so much trouble with medications in the past. I've been told myself by professionals Oh you won't have a problem with ------------ and then they stand there in shock. So thats where my fear comes from and I"m guessing yours! And I really wouldn't call it a fear, it's a medical history. So if you are one that reacts to alot of foods/preservatives/chemicals I so get it.
Joan, Dr Castelles at the last conference said after 3 epi injections it could be bad for the heart. But the use of the epi is weighed with the severity of the anaphylaxis episode. If the patient is not recovering it's the lifesaver . If I remember correctly someone there recently had to have it four times! Joan have you checked out Dr theo's neuroprotek, I"m very tempted to try, I don't tolerate chamomile tea but am thinking of giving this a whirl. I'm back to trying a quercertin again so if I fail it I may try this eventually.

Title: Re: Shock City
Post by Sandi on 04/11/11 at 19:05:04

Jilly, I stupidly forgot to add, Hugs bigtime number one, no fun at all, stupid people and crisis situations will def start to fill that bucket Lisa so well describes!!!

Title: Re: Shock City
Post by Josie on 04/12/11 at 00:48:39

Hi Sandi ,

Regards the sulphites in the Epi pen I have investigated this in depth , with the makers of epi pen . Because I had the concerns you do. I was told the sulphite is active after injection for a very short time after injection as the addition of oxygen to the compound makes it inert . The adrenaline last longer than the sulphite , so you are protected from the sulphite and any potential anaphylaxis whilst it is active .

I was also concerned about the effect of adrenaline on my heart . I discussed this with a cardiologist , she told me that once adrenline is out of your system it leaves no residual pulse raising effects .

It was only when I sorted out my meds ,of the inert ingredients which messed with me , that i turned a corner .

hugs xxxxxxxxxxxxxxxx

Joan ,

I have not read about EPI Pens. being more likely to cause MI in older patients . I will look into it . Adrenaline is used on cardiac arrest protocols all over the world . My experience in CCU ( heart ICU ) and in live cardiac arrests ( multiple ) is I have never had that experience of adrenlaine having any difference in action in older patients .

I would expect dosing and guidelines to be different for older patients in this situation and there is no differeniation currently on cardiac arrest or anaphylaxis protocols .

The only thing I can think of is the pre - presence of certian rythyms , regardless of age , may make syncope more likely . ( complex , can explain if you want me too )

These would be spotted on any EKG , even looked at by a non speclaist in heart rythym as the machine will highlight it and the rythym will look wrong , even if the first examiner can't say why . This will prompt it being shown to a cardiologist or CCU .

I interpret heart attack as a MI , this is where heart muscle is denied oxygen . In this situation the anaphylaxis , rather than the adrenaline is more likely to cause this . ( my nursing opinion )

I hope this helps ;-)

Lisa ;-)

I am interested in what Dr Escharibo said as well . My BP drops initially then goes high and then after my airway goes ( closed throat - broncus and laranx ( adams apple ) it drops suddenly , where I risk passing out before giving an EPI .

So I EPI , when I know my throat is going or I am dizzy + very fast heart .

My take is ( personal opinion ) that If I feel ill , I am ill . I haven't given an EPI wrong ;-) I do orals where I can . But if it is a fast reaction ( 1-3 mins to throat close ) . I ring for an ambulance and EPI

I am cautious but know my body and whats happening . I worry that fear / concern will leave someone at risk .

The paramedics when I first met them in Sussex , saw me post epipen and worried ( it worked so I was looking a bit better ) , then one day they saw what i was capable of . Then they never held off and told me off if I didn't epi .

I know I am a shocker and I don't want to worry anyone , but Epi pens wouldn't be available if we didn't need them . I would not make it to ED or until an ambulance comes without one ;-)

many hugs

Jose

Title: Epinephrine risk
Post by Joan on 04/12/11 at 17:10:37

I'll be interested to know what your research finds. What I was told by an internal medicine doctor is that studies have shown an increased risk of heart attack with epipens in older adults. I'm not at all advising anyone not to use them if needed, but I think people do need to be aware that there can be a risk. That's why anyone who uses an epipen is advised to then seek immediate help at an ER.

Sandi-- I haven't tried the Neuroprotek, because I'm worried about the chamomile extract. I have such bad pollen allergies, and I'm never done well with the tea either, I guess because of pollen. I do take the same ingredients (different source) separately, though, and I think they're helping.

Title: Re: Shock City
Post by Josie on 04/13/11 at 00:31:50

Hi Joan ,

I didn't mean to suggest you were saying not to use them . It is very important we know about our drugs and any risks and make our decisions on knowledge ;-) we are singing from the same hymn sheet ;-)

Jose

Title: Re: Shock City
Post by jbean on 04/13/11 at 04:50:51

I spoke with my allergist, who is a very good one, and he advised that I take my epipen, even if I am NOT having breathing problems. I was told to try Benedryl first, and if it is not helping and getting worse, with lots of tachycardia, to go for the epipen.

Anaphylaxis happens VERY quickly, and may present slightly different for different people. For me, it was rapid tachycardia and a burning sensation all over. I could breathe fine, but that doesn't mean that I wouldn't have passed out and died from it.

Title: Re: Shock City
Post by Riverwn on 04/13/11 at 05:42:08

My poor Jillibean!
I am so sorry the nasty mast cells were bad again. I was afraid you might be heading for this with all the stress youve been under. I also agree with Lisa and that there was more than one trigger that I can see. The aspirin is probably one of them.. new plus , it does the same thing to me. Then add the stress youve been going through, more stress with Mom in the hospital and you went for a walk just before! (exercise induced when you were so near the surface of shocking right?).

Youve done so well for 7 years now, its not a failure! It just means its time to redo meds, add something and see how you react. Think about Singulair or Vistaril?? maybe adding a 2nd dose in the evening of meds you usually take.

I am keeping you close in my prayers Hon... and I want to know how you are doing! I have a bottle of Quercetin with Bromelin if you want it, it is new and sealed.. PM your addy to me. I take Quercetin but didnt know it had the Bromelin in it --I dont want that, I was allergic to pineapple when I was young and thats where Bromelin comes from. Let me know hon.
Much love to you :)
Ramona

Title: Re: Shock City
Post by jbean on 04/13/11 at 14:49:20

Thanks all of you, you are all so sweet, each and every one of you.

Yes, stressed bad. My poor mamma has delrium now and was admitted back again to the hospital with kidney problems. I am trying to get her hospitalized where I work, as we are a big medical center with lots of resources. She's not stable enought to travel though.

I wanted to go get her, as my family doesn't agree with me, but I am afraid to drive up there (five hour drive). I am afraid I will shock out. I feel really torn about it, but I know that I could only add to our problems if I started shocking all over the place.

And in between all of this mess I have a job inteview Friday. I did get a new haircut though, so maybe with some makeup and antihistamines, I can pull it off.

And for now at work, I'm helping with the bone marrow transplants on the mice!

My life is just so weird!!!!

Anyway, my allergist here had me trying a new dose of Allegra. He said I could go up to the 180 mg. We are working it up slowly, 30 mg more each night. I am at 120 tonight, and it makes my legs feel weak and I have weird twitches. Ever get that with Allegra? Wondering if I have to get used to it. I am finishing up my prednisone today.

I have a kit coming in the mail from Mayo for the 24 hr U collection, so maybe I can catch what mediator is up and causing problems. Seems like I am going to the bathroom a lot.

This is my usual flare up presentation. The weird part was the burning skin, like I was dipped in acid, during the attack. Does anybody else get that? Got all red too, major flush. Those are new for me.

Tryptase has been stable for seven years, always around 20. I did catch a sample after the attack, so we'll see what that reads when we get the test results back.

Keep praying for me gang, I'm whipped out this time!

Love you all
-Jilly

Title: Re: Shock City
Post by Josie on 04/14/11 at 21:54:22

Hi Jilly ,

I hope things continue to get better . One thing I read was the prednislone is nearly gone . I would urge caution there whilst you have so much on sweetie . Before my meds were in any way adequate , i was on steriods for management . In a reactive situation I stayed on the same dose if i didn't need ED . If I did , It would be increased to 40mg for a week and taper down very slowly . l

This is not a perfect long term solution , but steriods work in the short term ;-)

Regards delerium and renal infections . It is a common occurrence in any patient with renal infections . especially so if they are older . Another factor may be constipation . She will also be on decant pain relief and that affects any ones brain . The antibiotics will work and she will have less pain and be more herself . I hope they are looking after her well sweets . I will answer any questions I can . Last year I found myself unable to travel when my dad was ill . I knew I would shock if I did . I was already reactive as well . I had to stay put . It was horrible . But it was the right thing for me at that time as me shocking on top of everything else would have made my dad worry and him sicker ;-(

I am so pleased you have a job interview , relieving that stress will help you a good amount ;-)

Id be sat outside ED if I was in the situation you are just now . Stress is my biggest trigger . In one particularly stressful time I managed 4 attendances in a month . hey had a gurney with my name on !!!!!!!!! . Be vigilant for early signs as I know when i am stressed and tired I can pass of early signs as just tiredness ;-) have you got any signs of infection ?

I am a great believer that non reaction is truly idiopathic , there is always a trigger ;-)

many many hugs
Jose

Title: Re: Shock City
Post by Joan on 04/16/11 at 11:19:09

Hi Jilly,

I have to give you my opinion on something that I've just experienced the last 3 1/2 years, and that's having a mast cell disorder and taking care of an aging, unwell parent. It might be easier on you if she were nearby, and it might be better for her, but this is NOT the time. If she could speak for herself, she'd say to take care of yourself first, and then try to help her. You can still try to convince your relatives to move her nearby to you, but as for going to get her, it's waaayyy too dangerous right now.

If you think about it..... sick Momma, job interview/change, mast cell disease flaring (probably in large part from stress)! This is the "Perfect Storm" building, and you've already had a pretty big flare up.

I would say to check with your doctor and ask what to do about the Allegra. It may be that you can't tolerate it. If you do take more, don't do it at night, unless you have someone in house to help if you get into trouble with it. The burning and weakness sound like either part of anaphylaxis or neurological. I'd guess a reaction to the Allegra. Have you looked up rare side effects?

Can't remember if you've tried Vistaril? It's a precursor drug to Zyrtec, but stronger (and sedating so you can take it at night if you're not reacting to it).

Another possibility is to ask your doc about a short burst of prednisone to cool off your system. I also find a little lorazepam for stress helps my masto flaring a lot!

Title: Re: Shock City
Post by DeborahW, Founder on 04/18/11 at 01:17:54

Hi Jill,

You mentioned that your mom is in delirium. What do you mean my that? Do you mean that she is elderly and showing signs of dementia or that she is having temporary confusion caused my a medical condition?

If it is dementia, let me know because my 89 yr old dad started dementia and we were able to back him out of it to an extent with some very good meds designed for that. Now he is much more normal - not like my old dad, but able to totally function just fine and even study and do the stock market!

Title: Re: Shock City
Post by Riverwn on 05/09/11 at 12:39:51

Hey Jilli,
Just wondering how you are doing, and what the test results were??
Love ya
Ramona