juliegee

Oh Carol- Yes, yes, yes, you've brought back some awful memories- sounds so similar to my attacks... the crazy mucous just pouring out- sometimes in my lungs too. The weird numbness on my face. (Last winter I had that for a month.) The volatile BP and HR. It is so frightening. I also went through a patch where I was allergic to my car. It was actually a cleaner I had used to get a spot out on the car mat, but it took me forever to figure that out. My throat began to close up every time I tried to drive anywhere. Keep your epi-pen close. Your reduced HR is concerning. I think much of your tachy is caused by the MCAD. The fact that that is improving with antihistamines is good, BUT the extremely high doses you are taking could be depressing your central nervous system- that's not good. I know you are working to get to a new mast cell doc. Do whatever it takes to be seen pronto. It would also be good if that doc would conference with Dr. Castell's in Boston OR maybe you could arrange a phone consult. (Tape record it for your new doc as she will recommend many tests, treatment options, etc.) I am very calm & controlled, but when I was as sick as you, I actually burst into tears at my allergist's office. I was at my wit's end & felt like I was on a roller coaster- so out of control. What you are going through is terrifying. I am sending good thoughts, hugs & prayers your way. Aaron, Yes, you are right. We should all wear a Medic-Alert bracelet...but I don't. I have too much stuff that NEEDS to be shared. A geneticist that I saw at Emory wanted me to wear one that warned of vascular blow-outs because of my strong family history- without a DX. (I don't have VEDS.) I have seen companies that have a website address posted on the bracelet that links the paramedics to your profile. THAT's what we need. So sorry you are going through this too. Hope you find a med regimen that you can tolerate & that helps. Julie

That's hopeful, Katie!!! Nothing more to add to Issie's explanation. If you DO have true allergies, then THEY are the cause of your symptoms. All top dysautonomia agree that adequately treating allergies is VERY important in the treatment of POTS, etc. Can you have true allergies & mast cell activation? I guess, but if you have that many true allergies, a high IgE, etc. THAT is most likely the problem. Most of us with MCAD have NO allergies, but the same symptoms you have- even anaphylaxis. Be VERY careful with shots given your history. Make sure the doc is well aware of that experience. Insist on minute doses & stay in the office 5-10 mins. longer than required just to be safe. All the best- Julie

You know you have POTS when... ALL of your socks are hospital-issued with a non-skid bottom _________________________________ P.S. You have the cutest baby, Claire.

The only great scholarships I found for my son were the Anne & Allegra Ford scholarship for graduating seniors with documented LD's. Many with dysautonomia also have LD's, like slow speed processing, dyslexia, etc. The scholarships are $10,000 each and unfortunately very competitive. Sounds like you are NOT a graduating senior? In that case your best bet may be a diversity scholarship. Most schools offer them. They are NOT based on financial need, but rather on proven academic success. Your disability IS what makes you diverse. Maybe google that concept and see what you come up with. So proud of you for going back!!!!

Sorry!!! That is awful and hurts so bad. Feel better quick. Hugs- Julie

Aaron- I know exactly what you mean about being afraid to use the epi- I was terrified the first time. TACHY was my worst symptom and you are so right- epinepherine can greatly worsen tachy IF it is not induced by anaphylaxis. My husband stuck me the first time. The tachy was out-of-control and I felt certain I was about to die. Instead of sticking me for 10 secs. as prescribed, he stuck me for 5 secs. so we could gage whether or not it helped. INSTANTLY all of my symptoms disappeared. That was very telling for me. I hope you can gather some definitive laboratory proof before you ever have to use your epi-pen. Maybe that will help give you the comfort you need before you have to make the decision. If and when you ever have to use the epi-pen, try to do it with someone else present like I did OR dial 911 & summon help before you stick yourself...just in case it worsens things. So sorry you are in this situation. Trust me, I get it. Hugs- Julie

I think it is very common. I think it is the basis for the entity called Chronic Fatigue Syndrome (CFS) Chronic Fatigue Immune Dysfunction Syndrome (CFIDS), myalgic encephalomyelitis (ME.) It is estimated that around 20 million people worldwide are suffers. I think the vast majority of dysautonomia patients fall into this category. Unfortunately, it boils down to semantics. We are all walking around with our various DXes depending on which physician we see and which symptom is the worst. If the scientific community understood the vast number of affected patients, the research would happen. And, yes, your doc is so right, it is very hard to catch laboratory proof of MCAD. The mediators released by degranulating mast cells have a very short shelf life. Very few hospitals can run the tests and most patients are way too sick to go to the hospital following an episode. Elaborating on my theory, MCAD, at it's essence, is an auto-immune condition itself. Our overly reactive mast cells are trying to protect our bodies (the host) from anything they perceive as harmful and end up actually hurting the host... seems to all stem from an immune system gone wonky.

Aaron, Yeah, smells are my worst triggers at the moment- febreeze (a fabric scent spray) and any strong cleaning or chemical product will close up my lungs. I get immediately dizzy, lightheaded, have trouble breathing, etc. GI stuff is also very common in anaphylaxis. Your descriptions of how you react to smells is very consistent with anaphylaxis. I disagree with your doc. You SHOULD have an epi-pen with you at all times based on the descriptions of your reactions. During every anaphylactoid (not anaphylaxis as I have NO known allergies) attack I have ever had, I could always breathe. Tachy was my worst symptom- so bad that I was losing consciousness had I NOT used my epi-pen. I can't comment on the specifics of your tests without norms. Is anything elevated? Glad you have a doc who is helping. As far as the relationship between MCAD and Multiple Chemical Sensitivities/MCS....from what I've been able to discern; they are different names for the same malady. MCAD treatment involves calming mast cells with pharmaceuticals. MCS treatment seems to focus on avoiding the trigger. Makes sense to do both. Glad you have a doc who is helping you to pursue this. There are MANY of us with the triad: POTS, MCAD & EDS. You are not alone Docs are taking notice. Dr Shibao at Vandy is the latest. Check out another online group for those with the triad (or who suspect they have the triad): http://uk.groups.yahoo.com/group/theelephantproject/ All the best- Julie

I'm just a couple of hours away- count me in too

Thanks for sharing, Issie. We do seem to have a lot in common. My IgG is quite low as well- 475 at last check. I need to do another check soon. What is your number? I ask as I have come across so many of us with mast cell disorders and an impaired immune system. Even mast cell specialists say it is not related...how could it not be? You say that your autoimmune numbers are high- what testing have you had? My ANA is always normal. My thought is that something (a virus, surgery, car accident, emotional trauma, etc.) sets us off and our immune systems are put on "high alert." Our mast cells then become overly responsive and react to normal stimuli as though it were harmful. After years of being so heightened, the immune system ultimately burns out-hence the low IgG- despite the very reactive mast cells. Maybe the overly reactive mast cells are a compensatory response?

http://content.karge...roduktNr=224161 This is the closest thing we have to diagnostic criteria for MCAD. Note this is only a consensus proposal. This proposal does not allow any room for the clinical presentation. Laboratory PROOF is necessary for a DX. The authors (in the full text) even go so far as to say treatment MAY be administered in life or death situations w/o laboratory proof Gee, thanks fellas. Without daily treatment, I WOULD be in a life or death situation... http://www.jhoonline...6-8722-4-10.pdf This is a much more comprehensive set of diagnostic criteria that INCLUDES the clinical presentation & a "unique constellation of symptoms." This article was published first. It appears that Dr. Afrin, et al are working to broaden the above consensus. As with all new diagnosis, this has become quite controversial with strong proponents on both sides.

Agreed! My cortisol is always high & my immune system is in the toilet- definitely a part of this.

Your test norms are different from most, BUT slightly elevated DOES mean something. You need more testing, especially with your symptoms. Bone pain is a common MCA symptom. Before I started my MCAD med regimen, my pain was off the chart. The best pain reliever (when tylenol isn't enough) is fentanyl. It won't cause mast cell degranulation like all of the other narcotic pain meds. Here is a link from a mast cell disorder forum that discusses west coast docs: http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1293915621 Hope it helps- Julie

Claire- VERY interesting. My local allergist trained at Mayo as well in MN. I also feel very lucky having such a wonderful expert so close to me. Mayo doesn't quite buy into MCAD, but with my obvious clinical evidence, I have ALWAYS been treated very appropriately. Your doc sounds very thorough. He is working you up for mastocytosis. MCAD doesn't have an ICD code, so that could explain his premature DX. Do you have elevated IgE? If so, THAT is indicative of traditional allergies. Do you have any known ones? Regardless, I am very happy that you are in good hands. With your strong clinical picture, you need a good doc. Hugs- Julie

Maiysa- Sorry, yeah- I saw your previous post & wasn't sure how to answer. Your posing the question a different way helps me to better see where you are on your journey to a DX. Your doctor, like many, doesn't seem to know much about MCAD. Many of us have to see mast cell researchers/specialists to get an adequate DX. An elevated serum tryptase level is NOT necessary for a DX of MCAD. It IS, however, indicative of mastocytosis, another mast cell disorder. In mastocytosis, the patient has too many mast cells. In MCAD, the patient has a normal amount of mast cells, they are just overly reactive. Dr. Cem Akin (Brigham & Women's), the leading mastocytosis researcher in the US, believes that even a slightly elevated level of serum tryptase, should be taken quite seriously as it could be the beginning sign of true mastocytosis. You need more testing. This abnormal lab should NOT be ignored as mast cell disorders (mastocytosis & MCAD) can be quite dangerous if left untreated. Your symptoms are also indicative of a mast cell disorder. WHAT meds are you currently using? If you tell me where you are located, I will try to recommend a good mast cell doc near you. All the best- Julie

Hi AZ gal- Yes, lots of posts about both (IVIG & MCAD), but not linking them- right? Just want to make sure I'm not missing something I saw in another post to Rama, you indicate that there is a link between hypogammaglobulinemia & small fiber neuropathy. I'm sure I have the latter too, just haven't bothered with the testing. How are they connected? Thanks for sharing your wisdom. SOOOO happy IVIG is helping you Julie

I had an awful reaction to that once- think it was also given IV as I was hospitalized at the time. My arms and legs would not stop moving- i wanted to get out of my body- being in it was exhausting It is an anti-nausea med, right? What symptom was it helping for you?

Hi Alyssa- Yes, sounds very familiar. I suspect that you have slowed GI motility. This is quite common with autonomic dysfunction. It's tough to find GI docs that understand this & how it relates to our overall condition. Many here have to use a GI prokinetic. My son uses Ery-ped 800mg, liquid erythromycin (sweet pink stuff- although he's git banana now ) He just takes 1/8-to 1/4 tsp before meals. It slightly irritates the GI tract into emptying more quickly. I use it intermittently & it turns my nausea into sweet hunger. Many with slow motility have acid reflux. If you do, be sure to treat that too. If you have constipation, use Miralax or Milk of Magnesia. Any "dam" in stream causes problems upstream. You should be eating low fat, low fiber. May have a hard time with dairy when they are this symptomatic. If you are resorting to supplemental drinks or shakes, make sure they are composed of rice milk or soy. Think mushy food, like very cooked veg, lean chicken, WHITE everything- the opposite of how we are told to eat. White rice, bread, pasta, potatoes. Vitamin waters have been very helpful to my son and I when we go through a rough patch like you are now. Zofran helps with AM nausea and phenergan with PM. So sorry you are dealing with this I hope you feel better soon. Hugs- Julie

Hope your relapse is beginning to resolve, Rama. Did the doc have any helpful ideas? Hope he checked your potassium as your symptoms are consistent with low levels- that's a pretty easy fix. I'm still wondering about a low grade anaphylaxis or anaphylactoid episode. I have had these last weeks, even months- where my BP is in the tank and I am always on the verge of syncope. Sometimes, my lips and throat tingle or swell, sometimes they don't. I also sweat a lot- that is an indication, I'm about to lose consciousness. The shaking occurs after the worst and I am very cold at that point. Having to run to the bathroom for excessive urination or "D" can also be a part of this. Sometimes ALL of my skin begins to turn "tan." My lips get very red and all of my skin darkens- kind of like a full-body dermatographism. During these episodes, I feel very panicked or anxious- I get a feeling of impending doom- I KNOW I am about to die. Very dramatic and not like myself at all. Just thought I'd share in case you think this might fit. Give you a few things to look out for... Have you given the benadryl a whirl? Feel better- Julie

My MIL recently passed away & I've had the opportunity to spend some quality time with my husband's family members. I had always heard that one of my husband's first cousin's had a daughter, who is consistently described as "sickly." Well, she has almost identical symptoms and a diagnosis as my son. (They are 2nd cousins.) This sweet young lady has EDS, NMH, GI motility issues, and possibly MCAD. What are the chances??? I had always suspected that my husband had some of our stuff. He has VERY loose joints and has had several subluxatuions/dislocations. He does faint at the site of blood or even when anyone uses medical jargon that he considers gory - this is a common symptom of NMH. He was very fatigued as a teen and young adult. Between faints or dislocations (VERY few and far between) he is perfectly fine, extraordinarily healthy whereas day-to-day my son and I struggle. Keep in mind that MANY of my family members are also affected. So, poor Mack (my son) definitely gets it from both sides, which may explain the severity of his symptoms. I did NOT marry a family member What's the deal- are we attracted at a cellular level to people like ourselves? Bizarre.

I'm so sorry, Rama, my friend. This might sound weird, but have you considered trying an antihistamine, like benadryl? Polyuria & excessive vasodialation are consistent with an "allergic" reaction. I put allergic in quotes as I am NEVER allergic to the things I react to HOW you react to the benadryl might be telling. Better days ahead- Julie

Hi Carol- So glad that you have an epi-pen and are feeling a little more stable. I wish you were making better progress. I have little helpful advice with food as I rarely make direct correlations between what i eat and my reactions- with the exception of a few things that triggered HUGE reactions. Rice and chicken are safe food for me too during very reactive periods. I am afraid to recommend anything else as we are all so different. I think it is going to have to be trial and error. Have you considered gastrocrom? It is a mast cell stabilizer that is VERY helpful to folks who react to many foods. I am still concerned about the extremely high dose of atarax you are taking. It is NOT unheard of- but shows me just how terribly reactive you are. (I knew a woman who was taking about 10 25 mg atarx a day- sounds like you are close.) Another drug to consider for PM is doxepin. I recently read (maybe from God's Gal/Jared?) that it is 60-80 times more potent than benadryl. Many "masties" take that when they are reacxtive as you presently are. I think a low dose at night, 20 mg- maybe a bit more- would allow you to take less atarax during the day. Hope you have a doc you can talk this ideas over with. I AM devastated that the doc you tried to see was unavailable. You really need input from a mast cell expert pronto. Aunie- The mat cell researcher I saw in Boston is Dr. Marianna Castells at Brigham and Women's. Here is a link http://physiciandire...pict_id=0000698 You can even check her out on youtube talking about mast cell activation. All the best- Julie

Hi All- I'm just back in town following a family burial (funeral last weekend.) Issie- I was better versed in the lorsartan stuff and how it affected ALL of my conditions last year when I was studying it. As I recall, lorsartan helps MCA by inhibiting angiotensin II, which is involved in signaling chymase, a protein stored primarily in mast cells. Chymase (released during mast cell degranulation) has been implicated in endothelial inflammation and vascular remodeling. This is a part of the process that occurs during Kounis syndrome. I know you have dealt with something like that & really feel that this medication could be VERY effective for you. Please share your experience with it to benefit us all. Fingers (and toes!) crossed that it helps. Julie

I have used it intermittently in the past to get through very rough patches. It has been a godsend for me. I take it in the AM. I have almost immediate increased energy and hunger. (I have used it in conjunction with Ery-Ped a GI prokinetic- so that may help explain the hunger ) Prior to using it, I am totally bedridden, unable to eat & have extreme nausea. I end up stopping the florinef because over time it increases my BP & that makes me nervous with my family history of vascular blow-outs.)

Interesting. I was mistakenly DXed with hepatitis in my early 20's- hospitalized for weeks. I was in severe pain. My liver enzymes were quite high. However, my hep panel repeatedly came back negative for all types of hepatitis. In retrospect, my gallbladder was most likely going wonky. Testing wasn't very good back in the day. Further complicating the diagnostic picture, I was very thin and young- wrong profile. It finally died a painful death few years ago-OUCH- and I had it yanked at last. It was wrapped in many, many layers of adhesions. My surgeon took many pictures- said it should have come out years ago. I, intermittently had high liver enzymes prior to the surgery... Strangely, many of us potsies have early gallbladder issues that may contribute to high liver enzymes. I think someone posted a study that indicated IBS is linked to early gallbladder disease. Do you have high liver enzymes? BTW, welcome!!! Nice to have a new inquisitive member Julie