Forum Replies Created
You can choose to start the ZZ combo sooner if you’d really like to, but if you want to show ‘proof’ in your lab tests, you really need to catch yourself very close to an attack of some sort. Imagine taking an allergy pill before being exposed to a known allergen. Your reaction will not be accurate or even usable data, in that case. Some people choose to go off of meds before having mast cell testing done so their doctors can get a better idea of what’s going on without the use of pharmaceuticals.
Most with systemic infections (to my knowledge) need much more aggressive treatment. This is not to say those with MCAS don’t need the same treatment, but they don’t seem to need as much of it (yet). Personally, I don’t see a problem in treating MCAS and mastocytosis the same because I really believe that left untreated or UNDERtreated, MCAS will probably get worse. That’s just my opinion, and I’m no professional. My symptoms have progressed greatly, and I’m terrified that if I don’t stabilize my mast cells soon, I will keep adding on to the allergy (and medication) list.
As far as getting a diagnosis, a positive response to treatment is enough in itself. You may have to discuss this with your doctor in detail or even jump around to find someone to clinically diagnose, but the way I see it – even if you don’t have an official diagnosis, why not take the ZZ combo anyway, if it works? So many of us self treat. It’s a shame, really. I have caught myself saying ‘I can’t wait to get out of the hospital so I can diagnose and treat myself.’
Keep us posted.
I wouldn’t want to send it off to those who haven’t downloaded it. That doesn’t help in supporting her hard work at all.
I just want to be respectful of her endless hours of research.
Low gall bladder ejection fractions are common. Makes sense what you are saying about your head exploding. I think you’re in the right place.
It sounds like the meds you’ve gotten are a good combination. You’re very lucky to have found a doctor that even mentioned mast cells or mastocytosis. Zantac/Zyrtec is a common combo. If it is a mast cell issue (which it sounds like), the next step you’ll need to take is getting on a mast cell stabilizer (Cromolyn Sodium if in US, Ketotifen it outside US). A mast cell ‘syndrome’ can be diagnosed simply by your reponse to treatment (if it’s helping you, you probably have it). It is great to treat the release of histamine and other toxins that mast cells are producing when they degranulate, but the real issue you need to address is stopping the degranulation in the first place (enter, stabilizers).
I believe that the RA, Fibro, Asthma and IBS all fall under the category of inappropriate mast cell activation. We are in a chronic state of inflammation which can cause many illnesses, simultaneously. Diana or someone more knowledgeable will surely chime in, as I am somewhat new at this as well. I have always known I’ve had issues but could never understand how they tied together (thank you, Driscoll Theory!).
If you have EDS like your score suggests, the barrier that protects your brain (the blood brain barrier) is likely leaky, and this can happen to certain valves as well. We have to address that also because it can cause serious consequences. The fact that you were diagnosed with POTS and could possibly have EDS says a lot. You are Driscoll Theory material!
If you have any type of fluid pressure on your brain (hydrocelphalus), it could be causing pressure on your brainstem, vagus nerve, hypothalamus, other cranial nerves…and I can’t remember where else! Diamox is the drug you want to go to for this. It will relieve the pressure and allow your brain to be where it is supposed to be! This will take the weight off of fragile nerves and tissues that could be causing your autonomic dysfunction.
Talk to your allergist/immunologist about a mast cell stabilizer, and ask about Diamox. The sooner we can stabilize our mast cells, the less we will need things like Zantac and Zyrtec because the degranulation will not be happening. I STRONGLY encourage you to read The Driscoll Theory Part 2 (available on Amazon.com) and also take it to your doctor’s office with you. Once you tie everything together, you will see a picture that finally makes sense, rather than a bunch of puzzle pieces that seemingly belong in different boxes.
I’m sure I have left things out, so I’ll leave it to others to step in.
Good luck to you.
You are right about that, I believe. Fixing the problem should correct the sensitivity. I need to get my mast cells stabilized and my blood brain barrier somewhat ‘closed’. I’m hoping that will help my extreme reactions.
I’m so glad the Benadryl didn’t confirm your fear and that you are finally getting somewhere. Isn’t it WONDERFUL to have a spark of hope again? When I think I’m down to nothing, something comes out of nowhere and makes me realize I can’t give up yet. So happy for you.
Thank you both! I’m super sensitive to meds but heard the Quercetin really doesn’t have many side effects (I’m sure I’ll have some!). I’m just worried because antihistamines bring down my heart rate and bp and affect my cognition. I love having so many symptoms! The pill that helps one symptom worsens another! Ah!
You’re so sweet! I have hundreds of pages of work. Diary entries. Stacks of journals that go back 15 years. I have a blog online but it is set so only I can read it right now.
Yes I saw the lecture (remember, I was the one who cried watching it?! 😉 )
Regarding the symptoms of hydrocephalus: I am sensitive to motion, yes, but I do not get sick. Ears are sensitive as well when it comes to things like altitude (even driving up or down slight hills). I am okay flying in planes as far as my ears go (but if I don’t chew gum, I’m in huge trouble – my ears have a hell of a time with pressure changes), but we all know the toll it takes on our cardiovascular system while it is trying to make changes to compensate for the lower oxygen levels. I have never been a ‘headache’ person until recently, but I do believe that now it is related to new (yay! 🙁 ) food sensitivities. No tremors in the morning, only on muscle exertion. Ears have been ringing for years, but I also do have TMJ disorder BADLY. My oral surgeon could not believe how small my temporomandibular joints were. The THOUGHT of blowing up a balloon scares me. I feel like I’ll pass out. Any valsalva maneuvers make me feel horrible. I get cardiac pauses and rhythm changes SO EASILY, and I feel like my heart is going to stop beating. And yes, often times, I do get a headache afterwards. The headache I’m describing is felt mostly in my temples. Many times, after exertion, I have a headache that I’m sure everyone can understand – where you want to ‘squeeze your head’. Most of us probably do squeeze our heads! (Or am I nuts?) I have unilateral flushing and it’s HORRIBLY HOT. I believe you commented on a video of mine once and said that you had this too.
Regarding medications: I am extremely sensitive to E-V-E-R-Y-T-H-I-N-G. The last time I took an anti-histamine (loratadine, 1/4 of a pill), it really affected my heart rate and cognition, but my dizziness went away and I actually took a shower standing up! I was amazed but could not handle the other side effects. It was very bittersweet. I have GERD and should be on Zantac or Prilosec for that, but I’m not. My stomach is a mess and becoming more and more sensitive with each passing day. About ‘seeing’ or ‘hearing’ my pulse – YES! BIG TIME! I will sit in the bathtub and I can see my heart beating and my stomach actually moves. When I strain or change position, this happens. It is much worse when I am upright. I figured this was a blood pressure thing, as I fall more onto the hyperadrenergic side and actually get hypertensive when I’m up.
I find that I have to start medications at extremely low doses (I cut my beta blockers into 1/8 of a pill and still have side effects). I hate starting new things because if there’s a side effect, I’ll probably get it. I’ve stopped reading about side effects because so many people thought I was ‘making it up’ !!!
I hope this gives you a clearer picture of where I’m at. I feel a little bit helpless knowing that things could get better if I could tolerate the medications.
Yikes. This is long. Sorry!
Jen (Thanks for the retweet, Diana! That’s me on twitter, too! 🙂 )
I already have it. 🙂 Reading more every day.March 15, 2012 at 1:19 pm in reply to: partners of people with these diseases – what do we do ? #1846
I think issues like this are always specific to individual relationships.
Personally, I do this A LOT (when I’m dating). I’ve pretty much stopped dating now because I end up hurting people. Guilt is a huge factor here, at least for me. We can’t help but push people away for a few reasons:
-we are sick and don’t want to be around anyone
-we don’t want to burden anyone with our chronic illnesses
-we have no desire for company and we may not know why
-mood swings can be unexplainable and unavoidable
I have experienced every one of those things. What it comes down to, I think, is how long you are willing to stick around and what you’re willing to give up for your partner. There may come a time when you have to make sacrifices to stay with this person, whether they be sacrifices of time, energy, etc. That’s not easy for anyone. There is the other issue of resentment if you DO stay. Do you think you will end up resenting your partner if it becomes overwhelming? Look down the road, and consider this from all angles.
It’s great that you seem so dedicated and concerned. Many people are deprived of this kind of comfort.
Knowing you are ‘out there’ even if you are not ‘right there’ might be comforting to her. It is to me. But I also know this appears selfish – picking people up and putting them down as I like. This has forced me into isolation because of the guilt I feel. Perhaps her guilt is great and consuming her.
Thanks so much for all of your information.
I’m currently reading Part 2. 🙂
Thanks for your response. I’m always soothed yet sorry to hear that someone is in the same boat.
I do believe that the way to find answers is together.
Wishing you all the best of luck in your own journey.
I’m Jendays247 from YouTube. 🙂 Thanks for the Big, BIG hug the other day when I was watching your speech crying!
I did watch the press interview, and it answered A LOT of questions for me. I actually found a couple of doctors right near where I live (one is only about 5 minutes away). Of course, there was some controversy about whether or not the doctors are still researching CCSVI or dx/treating it (the posts I found were not very recent).
Thank you for all you’ve done. Really. You have taken so many of us who feel like pieces of a puzzle that just do not fit, and you’ve created an entirely new picture of which we can be a contributing, appropriate, and accepted part.
I have to do something, and soon. I’m just getting sicker (but I look good!) and more fearful with each passing day.