juliegee

Right. No atarax IF you think zyrtec is a trigger. It has the exact same chemical make-up- only 2.5 times stronger with a sedative. If claritin or allegra works, great- use them in the AM. However, something stronger at night is good. Many (including me at my worst) use doxepin. It is an old-fashioned anti-depressant. Masties use it in tiny doses for it's potent anti-histamine effect. It will make you sleepy- that's why it is great at night. Best of luck sorting it out. I'm sending good thoughts your way. Julie

Hi All- Been MIA as my MIL just passed away. We have two out of state affairs, a funeral this weekend in MI- just returned- & a burial in FL next weekend. My sweet husband is hanging in. I'm back to my normal low-gluten diet, but while I was GF, I DID keep carbs in my diet with brown rice. I think I fainted because my limited blood supply was shunted to my belly dealing with whatever craziness was going on there- incredible pain, very slow motility. I waited 3 months to see my GI, but now have to cancel an appt. this week because of my out-of-town travels. I was hoping to be definitively tested so I could try GF again. I hope they don't make me wait another THREE months. My extreme reaction was VERY telling. i want to try again, but will be officially tested first. Regardless of results, I will try again & plan to encourage my son to do the same. THANKS for all of the info!

DO NOT take the atarx if you are having trouble with zyrtec. A 25 mg pill is equivalent to 2.5 10 mg zyrtec- same make-up with a sedative. You have great docs, Bren. Follow their advice. I agree with other posters. Finding the right H-1 can be hard. Zyrtec does not work for some- my son included. Claritin is his H-1. Try that or Allegra AFTER you've given Zyrtec a fair try.

So sorry, Sue. I still don't know what to make of my GF trial I found Dizzy's post about autistic kids not going cold turkey GF interesting as autism is loosely connected with mast cell disorders... Might be something to that. I also found recent postings about LDN (low dose nexatrone) interesting, how it gives the body an extra dose of endorphins- sort of sounds like what GF is doing for us??? My GI symptoms were unbearable, but the autonomic stuff (fainting while sitting ) is what made me give it up. I plan to discuss with my allergist and GI soon. Feel better. If you stick with it, you are a better woman than I Julie

Pelvic congestion syndrome is highly correlated with autonomic dysfunction. This is basically varicose veins in your pelvic area. When you lie, your already low supply of blood can pool there- causing BP to drop even further- http://www.pelvicpain.org/news/pdfs/vol4_no2.pdf See if you think this could be a possibility. Unbeknowst to me, I was suffering from this. My uterine veins were enormous- all feeding a 10cm fibroid. A uterine embolization took care of the problem. My BP would drop MUCH lower (when supine) when my veins were all stretched out.

I want sum

I took a GNC brand of turmeric- I think about 1,000 mg a day. I had a VERY noticeable increase in energy (yay!) and a huge cognitive improvement- like cobwebs were falling away. I LOVED it....then I developed an "allergic" reaction to it and had to stop Apparently, it is a potent nitric oxide scavenger.

I have MCAD and as long as I take my meds, I tolerate highlights just fine. Without meds- no way- the smell would do me in. Maybe those of you who are having trouble tolerating it, could pre-medicate??? An H-1 and H-2...JUST a thought.

I've had a "seizure" woke up on the floor of my bedroom as a teen and my mouth and tongue were making strange sounds and movements. In retrospect, I wonder if it was due to hypoxia prior to a faint. I wasn't worked up till years later (when I was having severe migraines.) That work-up was negative for seizures. I recently watched my husband faint, directly after he had 100's of staples removed from a surgery on his arm. He has NMH and blood & gore is his trigger. He is fine- perfectly healthy between episodes- (but poor Mack is getting "something" from both sides.) Bruce stared straight ahead, began speaking slowly and stupidly (not making sense), then his head, arms and legs began seizing, dramatically jerking in all directions. I screamed for help as he is close to 200lbs & I'm 130lbs and the exam table seemed soooo far away from where he was seated. Doctors and nurses appeared from everywhere (within seconds) and he was carried & layed supine on the table where he normalized within a moment. It was EYE-OPENING to see this. It was most definitely hypoxia induced. he was seated upright and slumped against the wall so that when he fainted, blood was NOT restored to his brain. Once he was tipped supine, blood flow to the brain was re-stored and he was fine. I know some here have true seizures, but I suspect that MANY more have these hypoxia induced episodes.

Hey Dys One & Ele- I am so sorry for how far things have progressed for both of you. So many of us have intermittent bad echoes. Can't help if we're all heading down a similar path. In re-reading this old post, I was reminded of a doc I stumbled upon in Michigan, who has a theory and treatment, for folks with heart involvement in CFS. His name is Dr. A. Martin Lerner. Here's a link to his site: http://www.treatmentcenterforcfs.com/personal_statement/index.html Prayers and good thoughts headed to BOTH of you- Julie

Yogini, I'm frugal. I just buy plain ol' magnesium oxide from Nature Made. I know someone posted that the oxide form can cause stomach upset- never happened to me. The "Natural Calm" costs more so I've just stuck with a cheapo. Carol, I'm heartened that you've gotten a tiny bit more stable, but I'm still very concerned with your severe symptoms- despite such a high load of meds. I'm so glad that your docs are pursuing the MCAD angle, but you are already on so many of the meds and j-u-s-t controlling symptoms. I really think you need a mast cell researcher, like the folks at Brigham & Women's- Dr. Marianna Castells- at least a phone consult. Like you, rice and chicken are my go-to foods when eating is tough. GI stuff/difficulty eating always goes hand-in-hand with severe MCAD flares for me too. Have your docs considered gastrocrom for you. It is a mast cell stabilizer, like nasalcrom, that is very helpful for GI stuff mediated by mast cells. http://www.webmd.com/drugs/drug-14269-Gastrocrom+Oral.aspx?drugid=14269&drugname=Gastrocrom+Oral

So in Stewart-ease... maybe good for "normal flow" POTS and bad for "low flow." I swear I fluctuate between the two Initially, I DID get great results with turmeric.... Thank you, EVERYONE, for all of the great info. I LOVE to hear about new treatment options.

Ele ...a few more thoughts. Kounis syndrome may also explain why saline IV's are so helpful. if you have some sort of chronic "allergic" condition, your degranulating mast cells could be causing a vasodialation of your vasculature leading to a plasma dump. Looks like Kounis is treated dually- both as though the patient is having a cardiac event AND an allergic reaction (H-1s, H-2's, epi, and IV fluids) http://intranet.santa.lt/thesaurus/REZIDENTUI/KORONARAI/Treatment%20of%20Kounis%20syndrome.pdf

Ele- Sounds so much like Kounis Syndrome http://en.wikipedia.org/wiki/Kounis_syndrome This occurs when your arteries spasm shut & actually cause MI's in the absence of actual blockages. Folks with mast cell disease (which causes hyperpots) can get this with no apparent trigger. Do you have any "allergy" type symptoms? Julie

Oh geez, you may be right. I'm just not privy to results. My doc says EVERYTHING is normal even when things are far outside the norms. I will try to dig out what I have and see if I find anything...

I've never even had mine tested so I have NO idea where I fall on the spectrum. Rissy, you are right that hypovolemia may give you a false high reading that is really more like normal. Based on the way that I have responded to the magnesium, I suspect that I was deficient. Carol, VERY INTERESTING. I never associated my more stable MCAD with magnesium. I truly seem to have accidentally stumbled upon a regimen that works for me. I also get the super low BP's, but I am OK with them. I had year(s) with extremely low BP and was unable to function. I couldn't read for instance and I am an avid reader. I couldn't grocery shop. I always felt like I was about to pass out. I couldn't even keep track of my grocery cart. I kept on losing it. Now, my BP is simply more stable, less labile. I run really low, but I function fine. Before the magnesium (and good MCAD regimen) I was always on the verge of passing out and my cognitive abilities (and much more!) were dramatically affected. Try to drink as much as you can & salt liberally. Hope you are more stable soon. Prayers and good thoughts headed your way. Julie

Oh sweetie- I believe you & my heart breaks for what you are going through. My son, was/is also a straight "A" student and had to drop out for a while (almost a year) while he got his DX and hammered out a treatment plan. This is a cruel illness, especially when it strikes young people as soooo much is expected of you. Can your Mom or Dad advocate for you? One of them needs to go to your school principal and explain that you are NOT playing hookey (ditching school.) You are SICK. You have a rare dysfunction of your autonomic nervous system. It affects your ability to maintain your heart rate, blood pressure, body temperature, and even your GI tract- all of the things that should occur automatically. Getting a specific diagnosis and treatment plan takes time as there are so few specialists in the US. Your Mom or Dad needs to tell the school that they are in violation of the Americans with Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973, which prohibit discrimination on the basis of disability. A simple letter from your pediatrician describing symptoms, any diagnostic findings, and a description of specialists that you will soon see should be enough documentation for NOW. The school (given it is a public school) MUST set up homebound tutoring and support you OR you can sue them for violating federal law. If you need help finding a doctor, let us know. We have recommendations for you. Go to your principal first thing Monday AM with your parents. You need to stop worrying about school and begin focusing on healing and resting. Try to line up your homebound tutor later in the day so that you can sleep in- as mornings are rough for many of us. Big Hugs from another Mama whose been though this. I'm so proud of you. Julie

http://www.icdrc.org/presentations/ELDAHR_CS2Talks.pdf Here's a PDF recap of a seminar for physicians on "Improving Immunity & Understanding Inflammation" It dances around so many possible treatments that we regularly discuss here, including LDN, turmeric, minocycline therapy, IVIG, etc. Takes some patience to get through- but really informative. It focuses on a ped population, autism in particular, but still VERY pertinent to us.

I have NO idea if my POTS is autoimmune- do you have to test positive for that with blood work? BUT, I do know that my immune system IS compromised. I have hypogammaglobulineamia- meaning I have very low immunoglobulins that regulate my immune system. To date, the only treatment for that condition is IVIG- where immunoglobulins are replaced via infusion. The side effects can be pretty brutal and I've been afraid to try it. Coincidentally, some docs are using IVIG to treat POTS as well. Seems like this LDN could be just as/maybe more effective as it stimulates your body into healing itself as opposed to injecting foreign immunoglobulins into our bodies. Regardless of wether or not POTS is deemed autoimmune- isn't that testing pretty sketchy anyways? It seems that all dysautonomia is caused by an assault to the immune system.

Interesting. Exactly HOW does it work? Can you explain it to us in layman's terms? The fact that it is used for HIV and other autoimmune illnesses is promising as each involve the immune system- either totally deficient or hypervigilant- attacking itself. I'd like to learn more.

I agree. I often hear buzzing before I go. FLOP- so good to see you I've been missing you. When you get a chance, catch us up on you.

LOL, Todd . I actually take mine with THREE doses of Miralax before bed. And, yes- my sleep is sometimes rudely interrupted- with a surprise dash. Wow, aren't you drowsy or loosey-goosey after such a high dose in the AM? On the positive side, I'm sure it nicely opposed any sympathetic overdrive.

Yeah, when mine at it's worst walking helps move the food better than anything BUT there is a problem with constant walking & no eating From what I understand, a gastroparesis diet is low fat, low fiber...guess that eliminates seeds and nuts. No food group is off limits UNLESS you have problems with that food group i.e. dairy and gluten. Sorry you're dealing with this- it's awful. Meds can make a great difference. Mine waxes and wanes- hope yours improves soon.

I think that's true for many of us. there may not be ONE triggering event. Our immune systems suffer multiple onslaughts before FREAKING Is that a medical term? Before Mack got sick at 12 y/o, he hit puberty, grew six inches, attended a very physically demanding sleep away soccer camp, travelled across country to visit Grandma, and was struck with an awful virus. Any and all of those things were stressful, but layered together, they depleted his immune system. Going along with Gary's theory, many of us (like me) can actually demonstrate a deficient immune system, with hypogammaglobulinemia. I think what's left of my immune system is hypervigilant- might explain the wonky overly reactive mast cells...

Kind of backs up my impression. They rule out the scary stuff.