I am a 52 year old woman who has become very ill starting in January of 2010.  I have been to so many places and had so many tests.
Due to some of my symptoms, I had a BMB last year which was negative. One definite test result has been an elevated tryptase twice.  I think once was 13 and once was 15. Also low blood volume.
Along with so many scary symptoms I sometimes have times where it feels like I am dying...sort of draining out of my body. Usually my BP is low at this time but will sometimes jump up very high for me. I have normally low BP.

I began with breathing problems ,tachycardia, hot and cold flashes, lost 24 lbs, ( am fairly small anyway ). I have had numb spots, even part of my face once, neck pain, and constant headaches and head pain. I began having bad reactions to medicines that didn't bother me in the past. Oddest of all is that I never feel sleepy. In the past I was always an 8-9 hr. sleeper, but not now. In the beginning I couldn't really sleep at all for about three months. Now I can sleep about 3 hours before waking up, then a bit more after that. I have vision problems that are scaring me. I could list many more issues.

I have been diagnosed with some type of dysautonomia. I have been reading posts on your site for quite a while. I just read the newest person who seemed to have some of my same issues. I have had one phone conference with Dr. Castells and will be setting up another one soon. I am taking low doses of claritin and zyrtec. Sometimes I throw in allegra. I have also gone gluten free which seemed to help with constant loose stools.

I have developed red bumps on my forehead and cheek over the past week but this is really the first time I have had any skin issues. I have more to tell but don't want to make this too long.

Any thoughts or ideas would be appreciated. Does any of this sound mast cell related to those of you with a firm diagnosis?

I am really needing support. I have a grandbaby on the way and my heart breaks because I won't be able to be the grandmother I always dreamed of being.


     

I can relate to a lot of what you are saying. I am 30, but started with hot/cold flashes, numb fingers toes, then full blown anaphylaxis and now reacting to almost everything in site and alsp developed POTS.

Have you been on the DINET forum for dysautonomia?
http://forums.dinet.org/

For the numbness you need to ensure you've had a full neuro work-up which you likely have given your dysautonomia diagnosis.

For the temp intolerance you need to check if you are having fevers and exclude infection and malignancy as a possible cause.

For the reactions, it definitely sounds like you have a reactive component and it's good you are on the H1 blockers. You should ask your doc if it's safe to start an H2 blocker like Zantac as a combo if it helps. If your doc will work with Dr, Castells you are set from that standpoint. ...they might also want to add a mast cell stabilizer like Gastrocrom or Ketotifen.  Sorting out what's triggering you and avoiding it is also key.

For the dysautonomia, most of the treatments are also symptomatic unless they can identifiy a cause to treat eg autoimmune lately they've been trying IvIg. If your BP is low some people try compression stockings or abdominal binders.  Have you had a holter cardiac/BP monitor?

There is hope! Hope to find the right treatment and learn new ways to cope!

Keep us posted! Hang in there! You will still be a wonderful Grandmother!  

Hi,

  The symptoms you're having may feel really frightening, but you have a great doctor to consult and are on the right track with meds.

  I have two thoughts.  One is to ask Dr. Castells about Ketotifen, as "Ana" mentioned, since you can't tolerate Gastrocrom.  It's now available in the U.S. through a pharmacy that I think is in Washington state.  (It's also available here in eye drops, but you'd want to try the oral.)  I don't know what the cost is.

  The other is to be sure you're taking in enough fluids each day.  Low bp (or high bp for that matter) can cause feelings of anxiety.  My suggestion is to fill up a jar with the right amount of fluids you should drink each day for your body weight, and drink at least every hour.  If you have tea or milk or soup, remove that amount from the jar and throw it away.  There are websites that will help you calculate how much you should drink each day.   I don't feel thirsty very often, and this helps me to drink enough.  This won't cure anything, but it might make you feel better.  I found it gave me a lot more energy.

  Let us know how you're doing.  Everyone here cares!

Welcome to a place where you will get the help and wise advise of many who have "started" in exactly the same place you are now.  They will help you through this.  I too became ill in Jan 2010. Before that my life was pretty normal.   As of 4 weeks ago, I had lost 40 pounds and was to the point they were thinking hospital and feeding system....nothing I ate stayed "with me" and everything I ate gave me some kind of reaction (tachycardia, elevated BP, severe dizziness, shortness of breath).

I found this website in June of 2011.  After telling my story, the angels (who are quite assertive when they need to be)   "walked" me though the necessary steps I needed to take to help myself keep my symptoms as controlled as possible.  I am NO expert nor am I at a point where I can give advise, but I think you are on the right track working with Dr. Castells and having a local doc who will oversee your care.

I do want to mention a couple of things I have learned... I also have dysautonomia.  I was diagnosed in Dec. 2010.  When I first presented my case to my mast cell specialist (I see Dr. Afrin in SC) I remember him telling me that, "Dysautonomia is a diagnosis often given to mast cell patients, but it never can account for the "full"" range of symptoms patients ascribe to." I am not saying you do not have dys. just questioning "why" you have dys.  My dysautonomia could not explain why I couldn't eat or why I had terrible bone pain after I ate.   I have to admit that since I have gone on H2 blockers, and cromolyn, I don't have near the problems with  my dysautonomia symptoms.  I will reiterate what Joan said (and you probably already know this), it is critical to stay hydrated!  I drink over 100 oz. of water a day!  And when I don't, I pay dearly for it.  I also wear compression hose when I know I am going to be on my feet for over 15 minutes.  My pulse can get as high as 220 when I am shopping or even baking all day!

I find the fact that you have trouble sleeping is something that a few of us experience on this site.  I wander around the house all hours of the night.  I am also not on an H1 blocker because we can't find one that I don't get "hyper" from.  My pulse goes up, my BP goes up, I get severely dizzy and I get agitated!  We even did a controlled IV Benedryl making sure that NO fillers or dyes were in the medication and I still had the same response.  If you have any dairy or soy intolerance, be sure to check the fillers in the zyrtec (it has lactose monohydrate in it) as this may also be adding to your conflicting symptoms.  Many patients react to the dyes in meds or the corn based fillers.  Be sure to check on these as well.  There are ways to solve this problem (pharmacies that make meds from "scratch") , but just wanted to "check with you" to see if you have noticed specific things that trigger your episodes (if you are able to figure that out!!! It can seem like one big guessing game!)  

When I started on the cromolyn a month ago, I got severe headaches and got very dizzy.  Obviously if your doc has told you NOT to continue this medication, then you should not take it.  I posted about my inability to eat and take the med.  Joan and Deb were there to help.  They both suggested that I eat very small amounts of food....maybe only a tablespoon an hour ( I even ate baby food because it was easier for my system to digest and thus kept those mast cells from getting to crazy!)   When I started the cromolyn, I did the same thing.  It seemed to agitate the mast cell reactions a lot at first!  I poured the vial into 16 oz. of water and took a "sip" every hour.  I has taken me 4 weeks to get up to ONE vial!! But my weight loss has stopped, the headaches have gone away and (an added bonus) the horrible bone pain is completely gone!  I think I may join an Olympic team when I get to 2 vials!!

I am not making light of any of your symptoms.....I just hope I can encourage you to keep pushing for answers and find what works best for YOU. 

It is a lot of work to try to keep journals of what you eat, what meds you take and when, what you can and can't do on any given day....BUT if I thought I could even feel this good a month ago, I would not have believed it.  Like you, I thought I was going to die.  (From what I remember reading...and don't quote me on this.... the life span of a person with mast cell disease is a longer life span....most likely because we learn to take care of ourselves!!)  YEA!!

Sorry this is so long.....I just hope it makes sense...the "brain fog thing" has NOT gone away yet.  Maybe it really is OLD AGE like everyone is telling me!  

Take care...please keep us posted on how you are doing.  

Oh...did anyone mention going on a low histamine diet??  I also am on a low tyramine diet as well.   It really helps!!

Hugs to you, Lynda
p.s. (I have to admit I am a bit jealous.  I am STILL waiting to be a grandma!!  You will have to give me some advise on how to make THAT happen!)lol

I agree with the fluids! I pound them down now like never before.

Joan, I love that you mentioned Quantum Leap..I;m watching that show on Netflix as we speak! Made me smile

Great news Lynda!