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I’ve had POTS probs since at least teenagehood (and other autonomic dysfunction probs since my 30’s)- but am only now (at over 50) awaiting tests at an autonomic clinic – (but yep initial simple standing/sitting/lying down bp/pulse rate checks indicate POTS)
and my mum sure has potsy probs too- both of us have EDShypermobility type
xxgHi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Hi MGC, I have POTS! (as do my 2 kids). Tell me that you are trying treatment for mast cell disease. Please. If you haven’t caught word of that yet, please look at my theory (you can see the cover on the home page of this website. Click on it and you’ll get there). Some doctors are even thinking that mast cell disease = POTS.
We are all on treatment now. I “accidentally” started Zyrtec 7 years ago and knew it was helping but I didn’t know why. Now we take a double dose of Zyrtec and Zantac and are adding Gastrocrom today (by Rx). Holy smoking cow. This is DEFINITELY at least part of the problem! Please, please, please read, learn and ask your doc about mast cell treatment. And then will you let us know how you are doing?
Big hug,
DianaHi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Hi MCG,
Most EDS folks have vascular issues, even without having the vascular form of EDS. I know I do! But a good geneticist can rule that out for you (I <3 Dr. Clair Francomano in Baltimore).
Let us know, OK?
Big hug,
DianaDr D,,, yes, I am medicating for Mast Cell Disease even though I do not have firm diagnosis as yet. I started on antihistamines when I read the paper done at Vanderbilt which reported on the coexistence of a Mast Cell Disease with POTS. Since the antihistamines helped, that encouraged me to look deeper…. thank goodness!
How are you doing with the Gastocrom? It made me nauseous in the beginning, so had to take an H2 blocker before I took the Gastrocrom.
Dr. Clair Francomano.. I have heard that name before. I may have to see what I can do about an appointment with her. The Rheumy I saw a few weeks ago said I did not have the Vascular type, but I don’t know how much…If anything…he knowsd about EDS.
Sending my best to you and your children. The stuff can be so difficult to deal with.
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.
Hi bearcat… I’ve been told I have Benign Joint Hypermobility as well, but no testing. Since I also have some vascular damage, I am now wondering if I may have the Vascular type EDS instead. Nice to ‘meet’ you.
Hi MCG,
Most EDS folks have vascular issues, even without having the vascular form of EDS. I know I do! But a good geneticist can rule that out for you (I <3 Dr. Clair Francomano in Baltimore).
Let us know, OK?
Big hug,
DianaHi!
I am waiting for the geneticist appointment Sept 26th but I was wondering if you could say more about the vascular issues that might be found in the hypermobile type?There are 6 of us in the family that seem to have EDS. I read that it doesn’t cross over from one type to another within a family.So we are all likely the same type even though our symptoms are different.
It looks like mastocytosis is the problem since I flush and get a fever after every meal, high histamine foods make me very sick. I also keep a mild sore throat, which I did read goes along with mastocytosis. I have to lay down multiple times every day – after showering, drying my hair, eating, using the bathroom, getting hot, etc. It’s not tired, I get very weak and usually feverish. The sudden weakness and body pain is triggered by many things and I think they are all histamine related.
I live with dysautonomia and POTS.So there is a histamine issue going on. I had never paid any attention to mast cell disorders even after seeing different ones talk about it at the dysautonomia and EDS forums until the doctor said there was a histamine problem. I asked him if that meant I had allergies. He said “no, not at all.”
So I came home and started researching it.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
I have POTS, Dysautonomia, and EDS3…. learning more about Mast cell and the pressure on the brain from Dr D. It took me 7 years to figure it all out and IM still at it I think :)… HOpe to learn more from all of you!! Tracey– PS- My sister has it too just like me. So we think it was carried from my Mothers side although she didnt have many symptoms, but my grandmother does.
Hi Deb, As far as vascular issues go, it seems that most of us have some sort of vascular “stuff”, even without having the vascular diagnosis, or the dilated aortic roots. In my family, we have spider veins, are prone to varicosities and have CCSVI. My mom also lost 2 sibs from vascular issues (aneurisms). But everyone is different. Now that we know we have MCAD (mast cell disorders) and mast cells can affect our collagen, endothelium, etc., I wonder if that is what causes some of these issues? Frankly, the jury’s still out!
I would recommend seeing a mast cell specialist. We will be seeing Dr. Castells soon. Even though we’re already on meds, there are others, and we may need to go up the ladder, so to speak. Did you see the article with the new mast cell protocol? VERY helpful! Because so much is happening so quickly in the mast cell world, I wanted to be sure that my kids and I are in on the latest (yes, we’re very competetive). ha. I will keep you posted about whatever I learn, OK?I have POTS, Dysautonomia, and EDS3…. learning more about Mast cell and the pressure on the brain from Dr D. It took me 7 years to figure it all out and IM still at it I think :)… HOpe to learn more from all of you!! Tracey– PS- My sister has it too just like me. So we think it was carried from my Mothers side although she didnt have many symptoms, but my grandmother does.
Hi Tracey! Welcome to our “family” of sorts! We’ll figure this out, I have no doubt! 🙂 My mom seemed to only have skin signs until I actually checked her hands and wrists. Holy cow, at age 77 she was more hypermobile than any of us! But she is doing better overall. I think the mast cell issue may be the difference… Much to learn, and we’re glad you’re here to help us learn from each other! 🙂
I also have ever multiplying spider veins on my face (and nope I am not a drinker ; )) and legs,
sometimes small blood vessels in my fingers and toes do, I think, just burst- without any reason (no knocks or whatever)- it feels like someone suddenly stabs a needle in my finger/toe and wildly wriggles/stabs it around and then I’m left with a deep and “bloddy under the skin’ bruise that takes ages to go away
( and of course I frequently ‘normally'(meaning without the ‘needle stabbing’ feeling, actually dont feel it at all, bruise ‘without any reason’), my veins are v visible (though I think that’s in part due to my v thin skin)-and I seem to have a vein that’s maybe kinked or in the wrong place (a very gentle osteopathic manipulation of my shoulder made me instantly pass out, blood flow to brain was interrupted)
and to me my pots and orthostatic intolerance are in a way also kind of ‘vascular issues’ – blood is not able to be pumped as much as necessary to my brain when standing, not fast enough when going from sitting to standing, or after eating, and my heart goes tachycardic…
and sometimes when sitting and feeling all relaxed my body/vascular system(?) or would that be adrenergenic system (?) goes haywire and sends me into a ‘body panic attack’ (which used to, but no longer, also give me a bit of ‘mind panic’) i.e. I get incredibly strong body “fight or flight” responses for absolutely no external or ‘mind internal’ reasons
xxgBearcat…I can def relate with all that you mentioned, if i even rub my hand or elsewhere I feel sudden burning,then swelling. I’m currently in really bad shape, neck/shoulders are killin me/ arms are both blotchy & purple looking,hands/arms are very tight/veins protruding.I’m goin for yet another MRI on Monday b/c doc said the swelling/increased pressure in my head/neck may be cutting off circulation to my arms.
I also have ever multiplying spider veins on my face (and nope I am not a drinker ; )) and legs,
sometimes small blood vessels in my fingers and toes do, I think, just burst- without any reason (no knocks or whatever)- it feels like someone suddenly stabs a needle in my finger/toe and wildly wriggles/stabs it around and then I’m left with a deep and “bloddy under the skin’ bruise that takes ages to go away
( and of course I frequently ‘normally'(meaning without the ‘needle stabbing’ feeling, actually dont feel it at all, bruise ‘without any reason’), my veins are v visible (though I think that’s in part due to my v thin skin)-and I seem to have a vein that’s maybe kinked or in the wrong place (a very gentle osteopathic manipulation of my shoulder made me instantly pass out, blood flow to brain was interrupted)
and to me my pots and orthostatic intolerance are in a way also kind of ‘vascular issues’ – blood is not able to be pumped as much as necessary to my brain when standing, not fast enough when going from sitting to standing, or after eating, and my heart goes tachycardic…
and sometimes when sitting and feeling all relaxed my body/vascular system(?) or would that be adrenergenic system (?) goes haywire and sends me into a ‘body panic attack’ (which used to, but no longer, also give me a bit of ‘mind panic’) i.e. I get incredibly strong body “fight or flight” responses for absolutely no external or ‘mind internal’ reasons
xxgOh, Hon, you sound just like I did! Of course I can’t diagnose you over the internet, but what you’re describing sounds like hyperadrenergic POTS. We are “special” zebras. Luckily, this is my specialty! Did your geneticist rule out vascular EDS? We all have kinda lousy vessels and thin skin, but vascular is even more “special”. Did you read The Driscoll Theory on my site? I humbly believe it will help you a tremendous amount. I wouldn’t be here today if I hadn’t gone on this treatment. Starting with mast cell treatment is the easiest place to start. And WOW, you will get some immediate relief. Then you can look at your remaining symptoms and see if it sounds like high intracranial pressure. Finally, CCSVI (don’t forget the transverse sinus) may be an issue for you. Likely so, since our veins basically suck… 😉 When the transverse sinus is stenosed (collapsed) it causes higher intracranial pressure. Diamox can control it — hopefully long enough for the researchers to develop a stent that we can feel good about! Please, please, please take a look at the Theory, OK? It was written for cases just like yours. Will you keep us posted? Big hug, 🙂 Diana
Dr D,,, yes, I am medicating for Mast Cell Disease even though I do not have firm diagnosis as yet. I started on antihistamines when I read the paper done at Vanderbilt which reported on the coexistence of a Mast Cell Disease with POTS. Since the antihistamines helped, that encouraged me to look deeper…. thank goodness!
How are you doing with the Gastocrom? It made me nauseous in the beginning, so had to take an H2 blocker before I took the Gastrocrom.
Dr. Clair Francomano.. I have heard that name before. I may have to see what I can do about an appointment with her. The Rheumy I saw a few weeks ago said I did not have the Vascular type, but I don’t know how much…If anything…he knowsd about EDS.
Sending my best to you and your children. The stuff can be so difficult to deal with.
Hi Gail, Wow, there is a paper from Vanderbilt?! Can you help us with a link? Somehow I missed that one! Gastrocrom — I’m doing fine with it. Sometimes I get nauseous, but I think it’s from taking a sh_t load of medications on an empty stomach! Dr. Francomano can usually tell you whether you need to worry about the vascular form when she does a clinical diagnosis. At least there is a genetic test for it if you’re not sure.
Sometimes rheumies only seem to understand the types of EDS they can check for with a blood test, but most of us still need to rely on clinical diagnosis. That’s where someone like Dr. Francomano can beat them all. If in doubt, I ask the doctor if they are comfortable with clinical diagnosis of classical and hypermobile EDS. How is the antihistamine regimen working for you so far? Thanks for your help, and please keep us posted! 🙂 Diana
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