Suthrngal

One of my reactions recently was to a fiber supplement, psysillim husk in wAter and immediately upon taking that supplement, my blood pressure dropped, pulse raised, i had to go to sleep and it actually caused muscle fasiculations. I had another reaction like that recently to Cortef as well. I have had this reaction so many times since 2007 all of them were to ingested medications or chemicals except for I had the same reaction to CT dye that obviously was not ingested. I had this reaction in 2007 to a store bought cupcake with tons of food dye and preservatives hives, I got dizzy, high pulse raced, too many symptoms to list. Hmmmmmmm

This is great information. Into thousand and seven when all of my dizziness, tachycardia and Gastro symptoms started that's when I became very very allergic to medications and chemicals and had a horrible overreaction to ct dye. Prior to 2007 I had no sensitivities whatsoever. How do we follow-up with testing for this MCAS? I was diagnosed at the mitral valve prolapse center in Alabama in March and then again at Mayo Clinic Just last week. But there's a missing piece of the puzzle. How and where did we test for this potential missing piece of MCAS?

Wondering how many have been diagnosed at Mayo or else where with this Central Sentization. The doctor that I saw at Mayo MN last week heard my symptoms and immediately said you have central sensitization he said that it is a mixture of multiple chemical sensitivities, fibromyalgia, POTS, myofascial syndrome, ibs etc. He said is it it is an over activity of the nerves and it can be treated with medications like Lyrica, amitriptyline, neurotin and something else. I want to make sure that this is not a garbage can diagnosis.....ie we don't know what it is so we'll call it Central Sensitization. Has anybody else been diagnosed with this?

After all of my pots symptoms started in 2007 I became allergic to MSG and any type of free glutamate also very sensitive to many medications and most foods that had pesticides on them. Prior to this I had no allergies no sensitivities. Just wondering who else had sudden onset allergies to chemicals or sensitivities to foods.

Ur at mn? I would love to hear more about why they diagnosed CS rather than just POTS. Can't wait to hear more.

This is wonderful. Very happy for you. Unjust returned from Mayo MN and was given dx of Central Sensitization and POts. Can you share your symptoms? My dizziness, lightheadedness, gut motility issues, tachycardia at times began in 2007 after the birth of my son. Suspect dehydration while bfing opened me up. I also have intensely tight muscles most of the time (called myofascial syndrome) and now bothersome like a vibrating current in legs and a tiny tremor in legs and hands. Almost everyone of my Symptoms are explained by PotS. Intensely painful slow emptying (feeling blocked) totally related to fluid level. I was sent home with salt tabs too and they have helped the exhaustion, tachycardia during meals and lightheadedness. But I'm left with these tight muscles and the "current feeling" that leads to tremor. I'm not sure if these are POTs symptoms. The docs I saw offered nerve blocking meds etc but I wanted to know what is causing it, what makes it worse etc. I am highly sensitive to meds to I worry about what I should take. Again, so happy for you!

Who is the wizard of Oz at Mayo? I would love an autonomic neurologist but just got back from Mayo MN and the neuro I saw was unhelpful. Two questions. Does Mayo Az have autonomic cardiac and neurologist docs? If so, who do you suggest? If mayo MN is the only ones whom are adequately qualified to treat PoTs....who do you suggest? I also saw a doc on the list in Portland. Can anyone comment on her? Very close to Portland..

I started getting the systemic muscle twitches/spasms after a fiber supplement and parasite supplement. Turns out the painful intestines and slow emptying was POtS (fluids) related. But since those supplements I have had bothersome fasiculations. I also have a "current" in my legs and pins and needles in feet that seemed to be there after I tried Atenolol for a few days. I went to MAYO in MN and they dx PotS but could not explain the fasiculations and or the current. At mayo they did a catacholomine test that told them I did not need atenolol and just sodium tablets. My pots symptoms (lightheadedness, gastric slow emptying etc is not bad right now) but this constant current (which leads to tiny tremor) is bad. As are the fasiculations that come and go. Do you all get muscle/leg currents? Do you all have muscles that seize up (my back and neck) do to the point that they crack. Can you all recommend a drug would help (I've done all the electrolite thing). Thanks in advance for your time