Does anyone else have “dermatographia”? That is when you scratch your skin lightly and it sort of welts up, turns red or white? It literally means “skin writing”, and I believe it is a histamine reaction. Is this why our blood vessels are leaky?
Well, I’ve learned that not only is dermatographia (mine isn’t raised, either) is not only a histamine reaction, it can be a sign of mast cell disease.
Since I posted the question, I’ve jumped on the mast cell bus and my kids and I are taking double dose Zyrtec and Zantac (ask your doc!) until we can see the mast cell specialist. WOW, is it helping!! Meanwhile, I learn that mast cell dz and EDS/POTS are often related. Holy cow!
I think I know why, and am writing Part 2 of my theory. Did you see Part 1? I’ll have a page for it, but meanwhile it’s the first reference under the video called “Why EDS/POTS patients are so ill”. Please take a look! The references for the paper are all listed with links to the articles. Any you may want to peek at my 2 videos about my symptoms and see if some of it sounds like you. Feel free to holler back if you have any questions, OK?
saw part one (and started a topic on it- watch out- I do at times also suffer from verbal diarhoea ; ))) ) - but I couldnt see the links to the article- do I need to ‘sign in/log on’ to youtube to see link??
can you take zantac on top of a ppi? I ‘irregularly regular’(also see my ‘head circumference study’ post) take lansoprazole 15mg
oh on an ‘allergic tip’ (dont know where this could fit in in the forum)- and i’ve never come across anyone else with this- a quick and brief temperature change from warm to colder (like in winter getting out of bed and dressed) always brings on a sneeze attack (10-20x in a row) and ‘cold symptoms’ (runny snotty nose) that last 1/2-1 hr and then are totally gone…
Yes yes yes. My kids used to tease that they could write on mom, mine is often raised welts and sometimes not. I can trace 7 generations of EDS III. I found your site while doing some research on anxiety, ocd, aspergers, autistic spectrum, in EDS. I have long had my suspicions that overachieving/ drivenness or buzz bomb as it’s called in my house is tied to the EDS. Add in the generational aspect and it’s amazing to think about.
I am exploring mast cell issues this next week. I cannot remember a time when I did not have chronic skin issues. My medical history reads like I was one of your study cases. I am 52 with a 22 yr old son on disabilty since age 17 from EDS. POTS and malabsorbtion issues are serious for him. We got the EDS diagnosis when they were looking for Marfan. At age 13 he grew 7 inches in 6mo and scoliosis became apparent. He is getting close to being done growing and that has helped his pain. His diagnosis led to mine and then my daughter too.
I believe I am having a “flare” due to thyroid, diabetes and other endrocrine involvement worsening my fatigue, POTS and heat intolerance. Currently I feel like everything is sluggish I’ve been on amoxicillin and it does not treat my stomach well, lots of bloating and nausea.
My secret weapon has always been my zantac over the counter type meds…I just assumed anything that could inhibit an allergic reaction from foods couldn’t hurt. I eat I react..simple. Lots of food allergies, chemical too. So your study makes intuitive sense to me.
I have a question..Diomax is a sulphonamide ( hope I spelled that right) is there a med that can be substituted for those with sulpha allergies? Thank you for the fascinating info!
Don’t you love new websites? I had a ‘bug’ and couldn’t reply to you! This link will take you directly to the theory: http://bit.ly/moYbIB
This link will take you to the theory, video, with all of the references hyperlinked: http://bit.ly/mxT4hd
I hope that helps! I’m looking forward to your feedback,
Oh, and Bearcat PPI plus Zantac—ask your doctor—we’re all different, but I take both, as does my son. We have so much acid we need both. They are also our friends because we take Diamox and need to keep the acidity level down in order for the Diamox to work.
Good grief. Health through pharmacy (it’s that or duct tape!). But please ask your doctor, first, OK? You may need to have your blood checked for a while. I had mine checked every week or two for a while.
Interesting about the sneeze thing. I haven’t heard that before, but I’d be interested to see if that sounds familiar to someone else!
Boy, your family sounds exactly like ours! I told my tall, thin, blonde teenage daughter that EDS could be the best, but could be the worst thing that happens to her! (very tongue in cheek - we try to keep a healthy sense of humor about all of this). I’m hoping it’s the best, since we’re making some real headway in treatment, but she still looks like a model. Ditto my son, but he isn’t really into how he looks, and certainly doesn’t care that girls like tall, lean blonde boys! ha. Give him 2 years…
Ah, a sulfur allergy? I may need to google or ask the pharmacist! It’s been so long since I’ve seen someone sensitive to sulfur (no idea why!). Mannitol can be used, but that is by IV, so likely not your first choice! Let me see what I can find out, if you don’t find out first, OK?
Thanks, great question!
My son has that tall lean British Rocker look. Add in his brains and his 100 lb mobility support German Shepherd Lucy and the girls fawn..and he says he’ll consider dating when he’s about 25 and girls have chilled out. No drama for him!
The sense of humor is key to our resilience. My father and his sister both lost their sight to hereditary early onset Macular degeneration. They were both in their 20’s. I suspect EDS has something to do with it also. Our family uses humor to deal. Our blind leading the blind jokes are hilarious to us and hopefully not too offensive to others.
When my son was being tested for Marfan we were making lots of giant and alien jokes. One day that week I went to look for a missing cat of ours at the Humane Society. When I walked in there was a big cage with a big sign that said special needs puppy..can only be placed in special families..I laughed out loud because that’s how we got Macintosh our 3 legged Border Collie. No one would take him because he wasn’t perfect…You can imagine how quickly my kids said he’s the one! So I looked in the cage and lo and behold there was an Australian Cattledog puppy with dwarfism staring back at me. She was one of two dwarfs in a litter of 6 puppies. It was such a rare phenomenon that MSU Veterinary College did a complete work up on her. The prognosis was that they had no idea what would happen internally as she grew or how damaged her legs would be. She went home with me that day and I handed her to my son and said I thought if you were going to be a Marfan giant you should have a dwarf for a canine best friend. By the end of the evening she had been named Qubit..a small unit of measurement and something else in physics I don’t understand lol. So our sense of humor and a healthy dose of animal therapy has been how we cope. When my son got his diagnosis and there were serious concerns about his mobility he decided to get a puppy and train his own service dog. What an amazing way to cope. That’s that driven thing I see in EDSers..when they have a plan look out…
So life gets lousy and medical bills get high, but there is always a joke around here and you can’t help but smile when a 3 legged Border Collie and a dwarf Blue Heeler decide to play tag.
Yes! I am just now, after six years, seeing some resolution in mine. It started in 2005 during a very stressful job I had. I left and ended up in stressful job after stressful job. Until I left the area where I was living at the time, so close to all my family - which was another stressor - the hives were completely intractable. I was on up to 11 medications for allergies and allergy-related problems. H1, H2 blockers, antacids, severe GERD, esophageal spasms, dermatographia, pressure-induced angioedema, angioedema in the lips, around the waist, and the worst, palms of my hands and soles of my feet just from *standing*.
I tested positive for allergies to everything on the planet because they were sticking me with needles, LOL! What did they think was going to happen, exactly, if they poked me with a pen and I produced a wheal, if they then stuck me with a needle? I went to an allergy specialist in Houston who dx’d the dermatographia and sent me home with an even larger list of meds than I was already on. And STILL I had breakthrough symptoms.
I tied it to hypothyroidism, and on a hunch convinced my dr. to refer me to an endo. I had 16 thyroid nodules. He rejected the idea that the hives and thyroid were related but put me on levothyroxine to shrink the nodules. It id nothing for the nodules but it DID impact my hives, tremendously. My T4 levels were fine, btw. But my T3 was not, and my triglycerides were high, indicating an inflammatory response in the thyroid. Now I have no endo, no insurance, and only a NP who refuses to believe I even have a thyroid issue. SO I’m on nothing.
However… the hives are now easily controlled with a Zyrtec every couple of days or so. I don’t work any more, and I don’t live close to my family anymore = very low stress.
Also have POTS/EDS III and nearly everythign else you described in that paper you released a couple of weeks ago. It made me cry when you described getting up in the morning and how the CSF could be inhibiting it. You should see me walk like a drunk and run into walls and be groggy for the first 1-2 hours of every day..
newbie I have been writing my own grants and self creating jobs the last several years. The stress of not being able to control my own environment…no chemicals etc and having to be diligent about educating others at work was exhausting. Having to work an someone else’s schedule ie mornings was awful.
I am working on my endo about thyroid connections. I too have nodules and some of my levels are okay and some not. I don’t think this Dr is going to be a good dr to problem solve with, but He is great at testing and looking for the outside the box connections..So I am getting information that I can hopefully take to my specialist.
I had an acupuncturist from China turn me down as a patient because she thought I would be too sensitive for the treatments..She wanted me to start treatment when I wasn’t flaring. My TB tests always look positive at first because of my ” prick me and I will get a wheal” tendencies..
Controlling the stress that comes at us is crucial. So hard with family. Sometimes distance is the only answer.
Well, I am fascinated by the thyroid nodules and T3 levels being off… I had 3 thyroid nodules (they removed one large one), and I assumed they were spherules from classic EDS. I know that high cholesterol and triglycerides are supposed to be common in EDS…
Do you all who have thyroid nodules have the classic form of EDS?
I believe that Neptazane (Methazolamide) is a good substitute for Diamox if you have a sulpha allergy, but PLEASE check with your doctor and/or pharmacist first, OK? These drugs are just SO similar, I wouldn’t be surprised if a pharmacist knows of some sensitivity for some sulpha sensitive patients… Please let me know!
And it sounds like you all found the ‘secret sauce’—Zyrtec! I can still have some breakthrough symptoms, but I worship on the Zyrtec altar twice a day…