NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › POTS › New Here – History Of Mvp, Syncope, Pots, Possible Mast Cell
- This topic has 8 replies, 4 voices, and was last updated 11 years, 9 months ago by mommy2seanp.
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June 17, 2012 at 3:51 pm #229TristessaParticipant
I was diagnosed with Mitral Valve Prolapse and Vasovagal Syncope about 10 years ago. At the time, I was having palpatations, shortness of breath, chest pains and fainting. No treatment was started until the symptoms again reappeared in 2005. I did start Atenelol for about 1 month back then but had adverse reactions to it (lower bp, lower pulse, dizziness, more fatigue and fainting). I stopped taking Atenelol because I found out I was pregnant. Since that time I have had 3 children and increasing ‘odd’ symptoms.
I have been doing a lot of research over the past few months and have now come to the realization that I suffer from dysautonomia and have symptoms characteristic of POTS. I have been keeping my blood pressure and pulse readings at various times and have performed numerous ‘poor man’s tilt table’ tests on myself and the increase in heart rate is there everytime (usually doubles). I suspected at first that my bp was dropping upon standing because of the way it makes me feel but was surprised to find that it actually increases by 10 Systolic & Diastolic.
Immediately upon standing I get a head rush type feeling. I have to concentrate on my breathing because it feels like I got the wind knocked out of me. I get the blood pooling too.
I really feel this traces back to my early years in life though. I have never been able to tolerate medicines very well and never knew why. I have fainted for seemingly unknown reasons. I also can’t run or exercise without getting short of breath and skyrocketing pulse. I have recently been waking with numb ‘sleepy’ hands and ‘dead’ feeling legs.
Over the past few years I have become intolerant of multiple foods and more chemical sensitivities. I smell phantom smells like something is burning that come out of nowhere and leave just the same. I can’t breath dander from our chickens without an immediate reaction. I get sore throats out of nowhere and seem to always have sinus related problems.
Does this sound like anyone else here?
I have been reading here anonymously for a few weeks and I really hope to make some new friends. 🙂
June 17, 2012 at 8:46 pm #2444ScaredSingleMamainMarylandParticipantHi Tristessa! I just started here recently. These symptoms sound a lot like mine. I have officially been diagnosed with allergies, anaphylaxis, SVT, asthma, GERD, IBS, AUB, Fibromyalgia, migraines, partial seizures, neuropathy and POTS over the years. I began having some symptoms (mostly bone pain and horrible fatigue) as a teenager, then I began w/anaphylaxis after my daughter was born, in 2009 my cardiac symptoms began (ran in cycles), and then as of February of this year everything just started going downhill real fast. Right now I am house confined other than grocery shopping and doctors. It is horrible living like this (though of course I am grateful to be alive) but worse real recently my nearly 9 year old daughter has began with POTS like symptoms : * ( At any rate, it is nice to “meet” you I am ye and I will keep you in my prayers. I hope things get better for you. I am here if you want to talk.
Ang.
June 18, 2012 at 8:50 am #2447TristessaParticipantHi Tristessa! I just started here recently. These symptoms sound a lot like mine. I have officially been diagnosed with allergies, anaphylaxis, SVT, asthma, GERD, IBS, AUB, Fibromyalgia, migraines, partial seizures, neuropathy and POTS over the years. I began having some symptoms (mostly bone pain and horrible fatigue) as a teenager, then I began w/anaphylaxis after my daughter was born, in 2009 my cardiac symptoms began (ran in cycles), and then as of February of this year everything just started going downhill real fast. Right now I am house confined other than grocery shopping and doctors. It is horrible living like this (though of course I am grateful to be alive) but worse real recently my nearly 9 year old daughter has began with POTS like symptoms : * ( At any rate, it is nice to “meet” you I am ye and I will keep you in my prayers. I hope things get better for you. I am here if you want to talk.
Ang.
I feel for you Mama. I have three little guys 6 & under and all three are on the spectrum as well. I really have thought long and hard about my oldest son having POTS symptoms as well. It is sometimes hard to tell what is ‘spectrumy’, typical or ‘potsy’. I will keep you in my prayers as well. Have you considered mast cell activation issues at all? I am really wondering if this might be the missing link for us. My sons (and me) have varying degrees of food allergies and intolerances. My oldest has anaphylaxis to dairy (milk) and any nuts. His reaction can be triggered by skin contact or even inhaled fumes. It is crazy, crazy!
June 18, 2012 at 9:35 pm #2456June 20, 2012 at 7:43 pm #2462mommy2seanpParticipantHi Tristessa,
I share many of your symptoms and have been officially diagnosed with EDS 3, POTS, and probable MCAS (Idiopathic Anaphylaxis, multiple food and drug allergies, chemical sensitivities, etc) My son is 4 1/2 yrs. old and has been diagnosed with EDS 3 and MCAS. His diet is limited to 6-8 foods and has had 5 episodes of anaphylaxis. He just had an appointment with Dr. Castells in Boston who started him on Gastrocom.
Some researchers believe that EDS 3 and POTS is actually MCAS since no genes have been found or associated with EDS 3.
June 23, 2012 at 7:11 am #2472PalominoMorganParticipantInterestingly I just read a post on another forum that a small study identified a marker that was present in 90% of those with EDS hypermobility type. Science has a lot it doesn’t know about the human body.
June 23, 2012 at 7:40 am #2474mommy2seanpParticipantPalimino,
Would you mind sharing where you saw that info, that would be wonderful! I’ve read that there was a new information for 90% of CEDS patients. This is the first I’m hearing about Hypermobility.
June 23, 2012 at 8:19 am #2475PalominoMorganParticipantResults
Tenascin-X was present in serum from all normal subjects, all patients with psoriasis, all patients with rheumatoid arthritis, and 146 of 151 patients with the Ehlers–Danlos syndrome. Tenascin-X was absent from the serum of the five remaining patients with Ehlers–Danlos syndrome, who were unrelated. Tenascin-X deficiency was confirmed in these patients by analysis of skin fibroblasts and by immunostaining of skin. The expression of tenascin-C and type V collagen was normal in these patients. All five of these patients had hypermobile joints, hyperelastic skin, and easy bruising, without atrophic scarring. Tenascin-X mutations were identified in all tenascin-X–deficient patients; one patient had a homozygous tenascin-X gene deletion, one was heterozygous for the deletion, and three others had homozygous truncating point mutations, confirming a causative role for tenascin-X and a recessive pattern of inheritance.
Full Text of Results …
ConclusionsTenascin-X deficiency causes a clinically distinct, recessive form of the Ehlers–Danlos syndrome. This finding indicates that factors other than the collagens or collagen-processing enzymes can cause the syndrome and suggests a central role for tenascin-X in maintaining the integrity of collagenous matrix.
June 23, 2012 at 8:58 am #2476mommy2seanpParticipantDoes this state it’s specifically for EDS hypermobility? Our family of HEDS doesn’t have the hyperelastic skin characteristic. Wonder if it’s a subset of patients in the HEDS group? Can’t wait to see what the future holds and if/ when doctors will start ordering this test.
Thanks for sharing.
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