juliegee

Hey HIS- The way I understand it in NCS or NMH (different name for the same phenomenon), your BP drops BUT I have never heard of a HR component. My son was DXed with this at Johns Hopkins. The way that you are checking for it won't work. In NCS/NMH, the BP drops AFTER standing for a prolonged period. For my son, all was normal until 35 minutes when his BP rose to 140 and BP dropped to immeasurable. The HR will TRY to compensate for the drop in BP, hence the tachy prior to the faint. As far as POTS, goes, you need to demonstrate a 28-30 BPM increase w/i 10 mins from supine to standing. There is not a BP requirement that I am aware of. You seem to have fulfilled this requirement. Many have BOTH POTS and NCS/NMH. Who gave you your DX? Were they specialists or local docs? Forgive my questions- just trying to help! Julie

Lenna- The background on that MAY want to make you FIGHT to get it approved. The reason that it's not FDA approved is because the copyright/ licensing on domperidone expired and generic is widely available now. The drug manufacturers in the US didn't feel that it would be financially beneficial to seek FDA approval for such a small kick-back. Too bad for the US patients who literally NEED it to be able to eat food. the safety of this drug is WELL established. It was originally given to nursing mothers as it helped with lactation, in mothers who had a scant milk supply. It is OTC in most countries- not dangerous in the least; just not lucrative Welcome to US healthcare. Grrrrrrrrrr. It just infuriates me as there are NO other alternatives, aside from erythromycin- which doesn't work for everyone. My son had such severe symptoms from reglan. His hands still shake to this day. HE (my laid-back, mild mannered son ) wants to sue the doc who repeatedly told him it was completely safe & his symptoms had NOTHING to do with it. Now, I hear lawyers on TV, looking for patients like him. Grrrrrrrrrrr. Patients with poor GI motility have VERY few pharmacological options in the US and subsequently many end up dependent on unnecessary parenteral tube feedings that run the risk of severe complications, such as life-threatening infections, etc. Infuriating. Rant complete- sorry Julie

Aaron for me a vasospasm is when my fingers and toes turn dark blue/purple/black. The blood supply to them is completely shut off no matter what i do. I have even tried sipping wine in a super hot bath tub- actually prescribed by my vascular surgeon -and NOTHING has worked as well as daily magnesium. Beggiatoa, I seem to get the same effect from the magnesium, itself. Good stuff as i can't tolerate any traditional Reynauds treatment. Julie

OK Jangle- hard to trust you on this one, w/o knowing WHY you are asking the question , BUT my son was a very normal weight, 7lbs, 7oz. That being said, when he was delivered the nurses gasped and said, "OMG, I have never seen such a small umbilical cord!" I never quite knew what to make of that. I did miscarry my first, early second trimester AND gained a whopping 40lbs with Mack. I was quite underweight to start with...so that little umbilical cord had plenty of opportunity to carry nutrients over to my son Hope it helps!

Great news that you can get it so easily, but soooo unfair Insurance not coving it makes me furious. Dan needs it in order to eat food- uh, isn't that necessary to live??? YET, Medicaid, Medicare and most every insurance plans cover Viagra for ED (not taking about the connective tissue variant ) Grrrrrrrrrrrrrr.

Yeah, I have learned that taking magnesium supplements (aside from my MCAD meds) is the single most helpful thing I take. It has helped control my POTS and improved my vasospasms tremendously. I usually end up hospitalized with Reynauds in the winter- with magnesium, so far all of my digits are pink!!! Good stuff (but big chalky pills- hard to swallow ) Hummus is a whole lot yummier

Sounds like a much lower concentration. In this case, the higher dose would be appropriate. Only if it makes his tum MORE nauseous and irritated, would I consider trying a lower dose. Is it helping??? Yeah, domperidone is really the only other GI prokinetic to try. Sadly, as far as pharmaceutical options go; those with slow GI tracts are a very neglected population Unless, things have changed, domperidone isn't even available in the US- for financial reasons- (Grrrrrrr;) BUT, widely available in the rest of the world, even offered OTC. Many Americans are forced to get it via mail order from foreign pharmacies.

"Hmmm... Same stuff. Thats what they said - CVS I will double check. I know they didn't have all of what we needed, just one bottle. He takes 2.5 ml 3 times a day. The Dr. said half hour b4 meals but the scrip just says 3 times a day. It is a tough one to do at school so for the next few days I think we will do half hour before eating AM and PM and just get the extra dose in right after school because hubby didn't get an extra bottle for the school (he gets out pretty early and we eat late). How long did it take to notice a difference?" _______________________________________ KCMom- I could be wrong,but 2.5ml is 1/2 tsp. Are you sure it's 800mg? That's a pretty hefty dose- might actually irritate the tum more than help... All GI's, even excellent motility specialists seem to prescribe too high of a dose in our experience. LESS is more in this case. Mack has settled on twice a day- skipping the mid-day dose. The evening dose helps prevent AM nausea (when it's worst.) And, the AM dose gets him ready to eat breakfast. WHEN does it work? In our experience- I've taken it too- right away. IF this is going to work, you will see results pretty quickly. Tweaking the dosage ay take a while. AND, if the dose is too high- it won't help. Let us know if it is working. Fingers and toes crossed. Hugs- Julie

Sue- Keep zithromax in mind if you ever get the stomach bloating/SIBO again. It is much better tolerated; actually quite benign compared to flagyl- but provides the same relief. Mack took flagyl early on in his disease process, BUT his symptoms were already very acute by that time. He was found to have a GI neuropathy which persists till this day...but the symptoms were already there prior to flagyl. The article did say that it caused a REVERSIBLE neuropathy. Still enough to make me stay away given our propensity towards neuropathies...

Wow, every 10 days!!!! Ery-Ped lasts 30 days once mixed. My son uses the 800mg and takes a tiny dose (about 1/4 tsp) so it lasts a long time. Be sure not to do too high a dose as it will overly upset his tum and cause worsened nausea and irritation. Yeah- I think reglan is BAD news. Julie

LOL- I want to see. Post a video link Good for you!!!

Overall great news- WHO was his doctor if you don't mind sharing. It's tough to find ped. GI's who "get" this & he may be able to help other members. I hope he's using liquid erythromycin.... I would not use REGLAN- ever, very bad med in my opinion. Let us know if it helps and I LOVE that he's not test happy. So many of the GI test are incredibly invasive and difficult to get through. Julie

(((((Puppylove))))) Congratulations to you & your parents! i know how hard that can be. You absolutely deserve the help. there are laws in place to protect you. Let us know what you learn from Dr. Abdullah. Hugs- Julie

Yay, Texas!!! I was just thinking about you today as I was in the midst of my run- 6 miles today! I have always pushed myself too. Giving in and lying around always makes me feel worse- but there HAVE been times when my symptoms were so bad that I was forced to be bed bound. Unlike you, I still have POTS, but my symptoms are much improved with regular exercise. I just started a new program. I am in the 4th week- it's called 100 push-ups. The goal is to get to 100 consecutive push-ups by the end of 6 weeks. It's really hard, but a GREAT way to work out my upper body. (I KNOW I'll never make it ) I'm also doing their 200 squat program- that's much easier & I swear it's improving my venous return in my calves. Google "100 push-ups" to check it out. You are one tough cookie and an inspiration. Thanks for letting us know how well you are doing. i know you give many of us hope. I'll remember you when i want to skip my work-out Stay well!

I wondered about that too- with the jaw issues- common in EDS. If you do end up meeting the criteria for these 3 conditions- don't panic. It doesn't mean that you are falling to pieces- just a new label for what you've been living with for years. POTS, MCAD & EDS (III, especially!) are commonly seen together. Some docs (including Dr. Lawrence Afrin) now believe that the POTS and EDS may actually be manifestations of the mast cell disorder itself. When mast cells degranulate they cause increased permeability that could cause many of our symptoms. By treating that, many get good symptom relief. If you want to explore this further, check out this site that explores the connection between the three disorders http://uk.groups.yahoo.com/group/theelephantproject/

Hey Julie- Not sure if this relates, but I remember reading about it yesterday in a link that Claire provided about histamine's role in the body: "The carbohydrate digesting enyme Amylase is a natural IgG histamine blocker, which stabilizes mast cells and basophils that release histamine at the start of an inflammatory response. The excessive consumption of carbohydrates will chronically deplete amylase thereby increasing histamine-related health problems such as allergen reactions and sinus headaches. Relief can be achieved through using plant-based enzymes with meals, as well as reducing carbohydrate consumption. Chronic carbohydrate consumption creates stress which exhausts the adrenal glands and the immune system, leaving the body open to attack. Enzymes normally break down allergens into smaller components in order to eliminate it without stressing the body. But in the case of allergic symptoms--when there are inadequate enzymes reserves in the body histamine is released rather than enzymatic breakdown of the allergens." http://biologyofkund...story=Histamine I feel better with a high protein diet too Julie

Hey Kim- Sounds like you SHOULD look into a mast cell disorder. I always have reactions to any beta blockers. They are contraindicated for folks with MCAS/MCAD. I learned about it on this site. Getting on the right meds has literally saved my life ...and given me my life back Julie

Here is a good outline, listing many of the major symptoms from MCA- including GI stuff. It was put together by The Mastocyosis Society. It's very helpful for newbies that are trying to decide IF overly reactive/too many mast cells may be behind their symptoms: http://tmsforac.ipower.com/documents/What%20is%20Mastocytosis%20or%20Mast%20Cell.pdf

Hey Kim- I think that your Pataday is similar enough to a ketotefin drop. I started with that & decided it was too expensive- $50 for a 30 days supply!!! My doc said that Zaditor/ketotifen OTC would do the same thing- it just has to be used twice a day. No biggee for the savings. It's around $7, even cheaper for the generic. I wonder if you were to use it consistently if that would make a difference? That is what seemed to help with mine- although I began taking the drops for chronic red eyes- especially when I am symptomatic. A CSF leak? I guess it could be possible, but the literature seems to suggest that that some trauma or penetration has to occur first- http://www.medscape.com/viewarticle/405620_3 That being said, you could be an exception My tears are very watery. The thicker nature & overflow of yours, combined with the worsening of symptoms with positional changes is GOOD reason for concern. I would definitely consult with a doc. Let us know what you find out. Julie

So sorry to hear about your Mom, Carol. VERY sad. Sounds like she was quite mismanaged medically, but her docs had probably never heard of POTS/MCAD. There IS a strong genetic component to this (despite the medical literature) and my Mom is also affected. You will NOT have the same outcome as your Mom because you are figuring it out and getting the proper treatment. I didn't mean to be a downer when I said that I see patients worsening as they get older- I do, BUT that's because symptoms that may have been mildly present our whole lives kick into high gear with major life stressors- surgery, accident, any trauma, chemical exposure, etc. Those things tend to accrue as we get older. MANY patients (like me) ultimately find med regimens that are very effective. I STILL have bad episodes, but know how to treat them to recover more quickly. I certainly no longer feel like I am fighting for my life on a regular basis Claire, as far as GI stuff being related to MCA- oh YES!!! The GI tract is FULL of mast cells. GERD, excess acid, IBD, "D", "C", motility issues, nausea, vomiting, etc are ALL manifestations of MCA. Gluten sensitivity is common among the masties, as is Reynaud's. Most of us end up having the Addisons/Cushings work-up as MCA presents similarly. Sounds like you have a great doc and are getting a thorough work-up. Ranitidine (and PPI's if needed) really help with the GI stuff- as does gastrocrom, a mast cell stabilizer. Having a good MCAS/MCAD med regimen will help with the GI stuff and

Oh, I meant to add one more thing. Some of the ADD/ADHD meds are also used for dysautonomia- coincidence? I think not My son began taking concerta for fatigue/bradycardia and for the vasoconstricting effect. after his first week, he said "Whoah- I can think so much better!" Great side effect for a student Now, that's one of his mainstay meds. He claims he can't get out of bed without it.

Yeah, for me I can be drinking my one cup of morning coffee or running outside- Tears literally pour from my eyes. i am not sad... just a weird symptom. i really think the ketotifen drops help. Maybe try them & see if you get some benefit. If so, might be wonky mast cells? Julie

Yes, I get this. Mornings are worse & it also occurs when its cold. It seems to come in waves- it'll be really bad for a few weeks, then let up. I haven't dealt with it in a while... I have to use ketotifen (mast cell stabilizer) eye drops or my eyes will be bright red. Maybe they have helped??? Julie

My experience was the same as yours, Carol. My HR (very high) and BP (very low, unless I was having an anaphylactoid reaction- then it was all over the place) were CRAZY until I got on the MCAS/MCAD meds. The way that I understand it, POTS is a symptom of MCA. During a reaction, degranulating mast cells release mediators that make our vasculature leaky- severe hypovolemia ensues. The tachy is the heart's attempt to keep our BP high enough to get blood to our brains and vital organs. Postural changes will obviously worsen this. With MCAS/MCAD meds, we protect our bodies from the effects of the degranulating mast cells and our autonomic symptoms are stabilized. As far as things worsening with age- I do see that among the population. For women, perimenopause GREATLY worsens things. But, I also see men's symptoms pretty severe as they get older. Many are not able to find med regimens that help Research is evolving in leaps and bounds in this area. Hopefully, better diagnostic tools and treatments are on the horizon. Julie

NCS (neurocardiogenic syncope), also known as NMH (neurally mediated hypotension) and POTS are very closely related. Check out the very informative article by Dr. Peter Rowe at Hopkins that explains the differences and similarities both. http://www.cfids.org/webinar/cfsinfo2010.pdf Patients often have both conditions. And, YES, there is enormous overlap between the ADD/ADHD phenomenon & dysautonomia, BUT it is hard to find in the medical literature, mainly because of semantics. The same phenomenon is called different things by different physicians. Dysautonomia and chronic fatigue syndrome (CFS/CFIDS) are often used interchangeably. Studies have shown that over 90% of CFS patients also have dysautonomia. Perhaps by searching for the link between CFS and ADD/ADHD; you will find more information. Here's a few blurbs I found that describe the cognitive deficits dsyautonomia patients experience. My son was greatly affected. He is in college now, and very successful, due in large part to his 504 plan. http://www.neuroimmu...ic_fatigue.html "Cognitive problems may be a primary symptom of CFS, particularly in children. Affected children frequently experience difficulties in the school environment. They are typically unable to concentrate and demonstrate lack of memory skills. A common presentation is a child who is able to read a book, but cannot recall what was read, or a child who cannot remember what was said immediately after the teacher has delivered a lesson. One can appreciate what this has done to a child's self-image when applying the descriptions of this syndrome we have heard from its adult victims. Imagine a child who knows he is doing poorly in school, but has no basis for understanding why. It is a very frustrating situation because CFS/CFIDS children truly want to succeed. They want to go out and play and do all of the things they see their peers doing." _______________ http://www.cfids.org...cfsinfo2010.pdf "While fainting has been considered a classic symptom of NMH, we have found that many persons who develop NMH during tilt table testing do not faint in day-to-day life. Chronic fatigue, muscle aches (or myalgias), headaches, nausea, and mental confusion can be prominent symptoms of NMH in these individuals. The mental confusion takes the form of difficulty concentrating, staying on task, paying attention, remembering, or finding the right words. Some describe being in a “mental fog.” Some develop worse fatigue after mentally demanding activities, such as reading and concentrating. This may occur because the blood vessels of the limbs dilate rather than constrict in response to mental tasks, allowing more blood to pool." _______________ Your son already qualifies for help from his school under a 504 plan because of his NCS DX. This great link from DynaKids with everything you need to know: http://www.dynakids.org/schools.jsp My heart breaks for you. I KNOW how hard it is. Your son is very lucky to have such a strong Mama fighting for him. Hugs- Julie