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Hi I have pots. I was told it is because I have EDS. I am reading with interest (but not quite understanding) about mast cell issues. For the past 10 years I have been having all sorts of strange rashes inc hives. I have what I think is liver spots on my chest and neck area. I also had one on my face which flared up and grew real big and was itchy. The doc didn’t have a clue what it was so he said it may be a solar keratosis (looked like small sarcoidosis to me). It swelled up for 3 weeks but has gone now and I am just left with the liver spot. I get hives for no reason and they are intensly itchy. I have small red blood spots over my legs and these are also in my mouth inside my lip and on my gums. I come up in strange circular red rashes too. I sometimes react in sun, tachy and headache, but put this down to pots. My kidneys are now not functioning how they should and I am being tested for thoracic outlet syndrome due to numbness, hyperaccusis, pain and vertigo amongst other things (I hope it is TOS).There must be something else going on than just EDS and Pots.
Hello, and WELCOME! Assuming you’ve already viewed the videos on mast cells and looked over the handouts on the site (cleverly posted under “Handouts”), you may want to look over tmsforacure dot org. They have some great mast cell info there. And the doctors (Castells and Akin) understand the link between EDS and mast cells. How great is THAT?! You will be SHOCKED when your POTS symptoms improve on mast cell treatment. So will your doctors! 🙂 Diana
Now I don’t know if he wants to test for it or anything but seeing how the tests can be inconclusive is there any sense in testing for it?
Thank you,
Deb
Hi Deb, First, the vascular problems with other types of EDS can be the same as the vascular type — varicose veins, spider veins, easy bruising, fairly transparent skin,etc. But although our aortic roots tend to enlarge, they don’t enlarge as much as in some of the other types, and our organs and vessels are not as weak as those in the vascular type. Surgeons describe the vascular type of vessels as wet tissue paper. Same description of our bowels, uterous, etc. So we may have weaker vessels, we may have aneurisms, but we tend not to have vessels that seem to just fall apart as easily. Also, the vascular type usually comes with a certain appearance – thin hair, thin lips, little subcutaneous fat on the face, VERY transparent skin (especially on the chest). It’s not always obvious, but a skilled geneticist can usually tell by looking. Oh, and the tests for mast cell? This has thrown the mast cell world in a tizzy, my friend. Most doctors will evaluate your blood work and urine — they want to rule out systemic mastocytosis vs. MCAD. At that point, it is up to them as to whether they’ll want a bone marrow biopsy. But you’re right. After ruling out other diseases, most “in the know” mast cell doctors will start treatment based on your symptoms alone. But I think it is smart to have a mast cell specialist on your team, I really do… 🙂 Diana
ello dr d : ) and everyone : )
after years of ‘knowing’ (from being told by my EDS consultant and reading up on things) that I most likely have various autonomic dysfunction probs (pots, orthostatic intolerance,exercise intolerance, temperature regulation probs, and the ‘oddness’ that if I stay sitting upright at a dining table for ‘long’ after eating I will get nauseous, bp drops and/or I’ll get a ‘gastric and circulatory system collapse’)-
I finally have been referred to an a d clinic this year- and yep no surprise early indication shows a d- am currently awaiting tests to find precisely what kind of a ds I have (waiting times for tests… some 8 months…)
and yep adrenergenic pots does sound poss… also because my gastro symptoms seem to fit, diarhoea-like stools are my normal (and I’ve only ever had constipation maybe 4 times in my whole 52 yrs), bloating is normal for me and I have plenty of nausea probs…
(so are we something like houndstooth patterned zebras? lol )do you with adrenergenic pots also get that thing that when you really push yourself you can really “fly on and on and fly high on adrenaline” (=keep keep going) BUT you then cant really switch off/relax(sometimes for days) until you just ‘crash’ (and stay ‘crashed’ for days)?
(I do try to avoid this state, but life sometimes just wont let you… ; ))
oh I have also since childhood been cyclothemic, may that play a part?- or is my ‘cyclothemia’ poss due to the a pots???and nope I dont think VEDS is a concern for me, as I was dxed by prof rodney grahame (our UK equivalent of your dr francomano)- I just think that there’s quite a bit more overlap of symptoms poss than was previously thought.
and yep I have read your fab driscoll theory- THANK YOU!- and I will soon try the zyrtec/zantac combo
oh dr d could you please have a look at my “no stereovision’ post- I’ve added some q s there
thank you!
xxgello dr d : ) and everyone : )
after years of ‘knowing’ (from being told by my EDS consultant and reading up on things) that I most likely have various autonomic dysfunction probs (pots, orthostatic intolerance,exercise intolerance, temperature regulation probs, and the ‘oddness’ that if I stay sitting upright at a dining table for ‘long’ after eating I will get nauseous, bp drops and/or I’ll get a ‘gastric and circulatory system collapse’)-
I finally have been referred to an a d clinic this year- and yep no surprise early indication shows a d- am currently awaiting tests to find precisely what kind of a ds I have (waiting times for tests… some 8 months…)
and yep adrenergenic pots does sound poss… also because my gastro symptoms seem to fit, diarhoea-like stools are my normal (and I’ve only ever had constipation maybe 4 times in my whole 52 yrs), bloating is normal for me and I have plenty of nausea probs…
(so are we something like houndstooth patterned zebras? lol )do you with adrenergenic pots also get that thing that when you really push yourself you can really “fly on and on and fly high on adrenaline” (=keep keep going) BUT you then cant really switch off/relax(sometimes for days) until you just ‘crash’ (and stay ‘crashed’ for days)?
(I do try to avoid this state, but life sometimes just wont let you… ; ))
oh I have also since childhood been cyclothemic, may that play a part?- or is my ‘cyclothemia’ poss due to the a pots???and yep I have read your fab driscoll theory- THANK YOU!- and I will soon try the zyrtec/zantac combo
Yes, I’ve had all of that! The cyclothemic episodes, we’re describing as bipolar — and it is all over the place with POTS. Interestingly, mine went away after 2 weeks on mast cell therapy (did you see the video on Irritability? Bipolar? It’s all in there! No secrets here!
Please let us know how you respond to Zantac/Zyrtec, OK?
Big hug,
DianaI have POTS and one or more of my kids may have it also. Last week, I sent my youngest son to school with my new iphone, Garmin chest strap and Digifit Icardio heart rate monitor running on it and I picked it up at noon. His heart rate was high and had wild swings. I took him the next day to our clinic and his EKG showed inverted P waves. My EKG’s are always fine so I am really worried. He’s going to a cardiologist who has seen POTS patients in a couple of days.
I originally thought my POTS was from the swine flu but I think I’ve had mild POTS most of my life and I was misdiagnosed as ADD-inattentive. I tested two of my other kids with my Digifit iCardio and they were fine but I’m going to test my oldest two when they come home for the holidays. I suspect my POTS may be familial. How did you find out yours was familial? Is there a certain ethnic group that familial POTS runs in or is it rare but wide spread across different heritages? I appreciate your posting! Thanks!
My best, SweetFeatherello dr d : ) and everyone : )
do you with adrenergenic pots also get that thing that when you really push yourself you can really “fly on and on and fly high on adrenaline” (=keep keep going) BUT you then cant really switch off/relax(sometimes for days) until you just ‘crash’ (and stay ‘crashed’ for days)?
(I do try to avoid this state, but life sometimes just wont let you… ; ))Yes, yes, yes!! As my cortisol and ACTH dipped below normal, fatigue finally became more constant, but YES.
I wanted you to know that hyperadrenergic POTS and mast cell disease are linked SO STRONGLY. Please keep that in mind as you work on your meds, OK? Benzo’s help us, opioids hurt us (as do NSAID’s, histamine foods, stress… most everything on the FACE OF THE PLANET. OK, I’m exaggerating. Rice seems to be fine. 🙂
I have POTS and one or more of my kids may have it also. Last week, I sent my youngest son to school with my new iphone, Garmin chest strap and Digifit Icardio heart rate monitor running on it and I picked it up at noon. His heart rate was high and had wild swings. I took him the next day to our clinic and his EKG showed inverted P waves. My EKG’s are always fine so I am really worried. He’s going to a cardiologist who has seen POTS patients in a couple of days.
I originally thought my POTS was from the swine flu but I think I’ve had mild POTS most of my life and I was misdiagnosed as ADD-inattentive. I tested two of my other kids with my Digifit iCardio and they were fine but I’m going to test my oldest two when they come home for the holidays. I suspect my POTS may be familial. How did you find out yours was familial? Is there a certain ethnic group that familial POTS runs in or is it rare but wide spread across different heritages? I appreciate your posting! Thanks!
My best, SweetFeatherHI Sweetfeather, I want to be “surgically precise” here. There is a syndrome called “familial POTS, also known as “Riley-Day”). That is completely different from hereditary POTS (in our family, our POTS is secondary to EDS, which DOES run in the family, but it is not Riley-Day). Cool? Riley-Day does tend to affect Ashkenazi Jews more often than not. Is this what you mean?
If not, I learned about the Beighton scale, and ran all of us through it. We were VERY hypermobile and didn’t know it! So started the journey to get the EDS and the hyperadrenergic POTS diagnosis. Then, much later — The Driscoll Theory!
Does this answer your question?
🙂 DianaI have EDS and POTS. I take midodrine and florinef for my POTS and they help a lot with pooling, energy, and dizziness. I read that florinef can increase ICP and I’m afraid it’s doing that because my headaches have gotten worse since on it. I also have a questionable case of chiari (3mm herniation.) But, whenever I try to taper off florinef I feel really dizzy and the higher dose (.15mg for me) really does help w/ my dizziness and fatigue. So, I’m conflicted about what to do. Is anyone else on florinef but also have symptoms of increased ICP? also, my pcp is willing to try diamox but he wants to make sure I have high ICP 1st, is there anyway to convince him without an LP?
Amanda,
I had to quit the Florinef after a month. It occurred to me that the 2 weeks of torturous painful high pressure headache when I hadn’t done anything stupid was because of the Florinef. I tapered myself down for a week and then told the prescribing dr, my PCP, that it was a no go. When I checked drugs dot com I saw that it had the side effect of pseudo tumor cerebri, aka intercranial hypertension. I offered two other possibilities I had researched, but my PCP wasn’t comfortable prescribing either for some reason. Outside her comfort zone apparently. Beta blockers were obviously out of question for me given my hypotension so I’m on nothing for my POTS.
I wanted you to know that hyperadrenergic POTS and mast cell disease are linked SO STRONGLY. Please keep that in mind as you work on your meds, OK? Benzo’s help us, opioids hurt us (as do NSAID’s, histamine foods, stress… most everything on the FACE OF THE PLANET. OK, I’m exaggerating. Rice seems to be fine. 🙂
http://hyper.ahajournals.org/content/45/3/385.long
This is an article from a bright, young doctor who said the following about the “connection” betweenhyperadrenic POTS and mast cell. I am copying and pasting another person’s account of their appointment with her. They saw her at Vanderbuilt.
“I asked why she had decided there was a Mast Cell connection to H. POTS and she
told me she had been though the Pharmacology Program, and was doing some work in
Dysautonomia, and that she had noticed the similarity in symptoms of people
being seen in the two Departments. (Basically if one went through one Dept, they
would receive one diagnosis; if they went through the other, they would receive
a different one… Mast Cell Disease or POTS.)”Sounds like depending on which department you got sent to you came out with a different label. Sort of like masto and multiple chemical sensitivity. Is it something different or do all masto people just have MCS?
My first faint and first time noticing any type of unusual symptoms was August 2, 2004. I was 18 and standing at the position of attention in a Marine Corps promotion ceremony. I was medically retired a year and a half later. It took them a year to diagnose me with NCS and POTS.
can someone have POTS and Hypermobility and not have EDS? If the Mast cell therapy is the answer then why does my cardiologist only bring up florinef and midrodrine? It sounds like a great answer! who wouldnt want to take and antihistamine over a steriod?? 🙂 I have been struggling with POTS and Hypermobility for so long, as well as the million other sxs that so many have brought up and most ppl think it is all in my head and i just need to keep going excercise and ill feel better. like it is mind over matter!! It is so nice to see (well kinda… you would never wish any of this on anyone) that other ppl in this world have similar if not the exact same sxs like the chronic pain in the neck head and shoulders the popping out of joints especially my hips and shoulders, the chronic fatigue the fainting the GI sxs the varicose veins the head aches the severe tiredness and needing to rest after everything i do especially showering drying my hair and eating… oh the list could go on and on!! hope all is well. i have to go push myself and go to work!! 🙂
NurseBetty, anything is possible. That being said if you are dislocating and are hypermobile that is a big clue to look at EDS and see a geneticist. I was diagnosed with EDs and have never had a full dislocation that I know of. Lots of subluxations and popping things back in, but from the little you wrote EDs sounds plausible. People can have EDS and be relatively unaffected until something triggers their body (cue the mast cells).
Palamino, and anyone else, has having gotten an official dx for EDS from a geneticist, besides having a dx, been of any help? What I mean is did it change anything or help anything in the long run?
My neuro tested me for the types of EDS that there are tests for and all were negative, but she thinks I have type 3 or maybe some yet unlabled subtype, yada yada. I saw a pedi genetic doc with my daughter who was a total jerk… my daughter he gave a 5 on the bieghton scale and me he wouldn’t even look at because I don’t have the typical widening scars of EDS. He also dismissed us because my siblings (all younger than me) don’t have any symptoms (that I know of, except a sister with scoliosis, and all of herse 4 kids can touch their nose with their tounges – an EDS sign) and my childrens symptoms have been vauge.
Since when we saw him two of my boys have had dislocations. The most recent was my 20 y.o. He was having arm pain and was at the chiroprator to get it looked at. The chiro was doing a very benign range of motion test on that arm and my sons shoulder completly dislocated. Chiro immediatly got it back in place and knew our family history of EDS, so though he was shocked that it happened so easily, he knew why it so easily happened. And this is one of my kids I would have guessed didn’t get the EDS gene.
I now believe because we homeschool and my kids have not been huge into sports is why we have not had more dislocations and symptoms od EDS.
All that to say with a dx from my neuro it helps us know what is going on and what to expect and watch out for, but it doesn’t do anything else for us. I would be willing to try another genetic doctor, but is there really any reason to? Can’t help but wonder if some geneticist would’t find studying our family interesting for research since we have 13 children…. to see how the gene is expressed in such a large group.
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