brethor9

I was never classified as "hyper" but have very high catecholamines on testing......I also have MCAS and just recently diagnosed through biopsy with EDS....was interesting to find out that my EDS specialist believes that it is the EDS causing most of my mast cell issues and autonomic dysfunction and not the other way around. Like Issie, I have also benefited some from the MCAS protocol but I am not completely recovered and I suspect that is where the EDS comes into play.... it is a real chicken and egg sort of thing.....good luck hope you find some relief

Bren

when I worked in the oncology clinic one of the nurses told me that it was not abnormal to have different BP readings in each arm.....she said they only worry when there is a large difference like 20 points or something......... my arm readings are always completely different

Bren

k&ajs mom and alex..... I am totally experiencing the same issue!! My specialist took me off of it because even though I was on a very low dose he said I was showing signs of Cushings Syndrome but now being off of it I seem to be worse...not better ;( I am wondering if it has somehow affected my adrenal output even though they are apparently normal? with us I am finding nothing is ever normal even if the tests say normal and I am trying to be a little more active (hard because of the EDS) and have changed my diet significantly yet nothing is budging.... what's up with that?? arrggghh!!

Bren

Canadiangirl

I used to suffer from that same air hunger in the beginning also. Always felt like I had an elephant permanently sitting on my chest. I did find that Florinef eventually helped alot with the sensation.....sometimes when I am blood pooling really bad in my legs I get that tight chest feeling still. Are you currently taking any meds? Do you know if you have pooling issues?

Bren

I actually have been researching this very topic for the last month after having a very serious reaction last time I did my hair.....never had a lot of problems before. Apparently there is a chemical known as PPD in hair dyes that many people are starting to have allergic reactions to.(FYI the darker the hair dye the more PPD) Unfortunately they have even had fatalities (rare but still scary!) It is becoming a huge issue in the hair colour industry....and you can build up a sensitivity to this chemical so that every time you dye the reaction becomes worse and worse. After my last go around I have decided to only go with PPD free dyes like manic panic or Cosomo Love Your Colour (they don't last as long but atleast I don't have to be worried about being rushed to the ER also, going with dyes that are ammonia free is a good idea as it can also being pretty toxic.....if anyone is interested just do a google search for PPD in hair dye....there is a ton of information on it

Bren

I am very lucky and have an internist (I used to work with him in clinic ..... who co-ordinates with all of my other specialists and oversees my treatment on the whole. I was just diagnosed with EDS through biopsy recently so I am officially part of the triad club now (not a club I really wanted to join ....) my GP just takes care of the normal stuff all the other stuff is waaay out of her scope and she doesn't really want to learn

Not sure of any doctors that are studying all three illnesses but at least my specialists have heard of them

I also suffer Raynauds.....not sure of the significance of it

Bren

me too! I get dizzy and lightheaded just when my doctor checks my lungs at appointments lol

Bren

I actually just went through this with my specialist....like you Naomi I never realized I had any hypermobility and I have a lot of the skin symptoms. I was given a skin biopsy and was just informed a few days ago that the pathology came back positive for EDS. So I guess I am one of the cases that they could catch through skin biopsy atleast. The only thing I am worried about is that they did not stipulate whether it was positive for vascular or classical. I also now have to see a geneticist for further mapping. So I am now officially one of the unlucky ones that suffer from the triple three; MCAS, POTS and EDS......yay

Bren

Thats fantastic Issie I am so very happy to hear that you are on the upswing.....you deserve it so much....hugs!!

Bren

I go through cycles of this too.......I always think its under control and then it kicks in again.....I have to agree with Lemons I think it really is just part of having a screwed up ANS/POTS.....the body is always in a constant state of cat-like readiness....arrgh! A low dose beta blocker or sedative of some type may be helpful before bedtime....my mast cell meds and florinef have helped a lot but some cycles even that doesn't work so I have just learned to wait it out....hang in there!

Bren

That was absolutely hilarious and so very true lol thanks for writing it

Bren

thanks guys yeah it was very scary! after all of my specialitsts reviewing it the video they believe it was mast cell related and autonomic in nature.....I just had a skin biopsy done that I reacted very poorly to also. The mast cell specialist said even the pin prick itself can degranulate the mast cells so now for any procedure of any type I just make sure I have benadryl. I have had similar episodes....not quite as bad thankfully and they respond well to H1, H2, and benadryl so in my case I think as long as the mast cell stuff is under control the episodes should get better.....crossing my fingers

Bren

I am a mother with a son diagnosed at 2 years of age with classic high functioning autism. He started showing signs (in our case) before his first set of vaccinations...... my son's father has ADD which is also on the spectrum....I feel personally in my son's case there is a genetic link ....we have tried everything from diet changes to therapies to medications.....some work and some don't....but every autistic child responds differently very much like our illness. I have also spent countless hours researching and of course there are many different theories out there about causes.....my own personal belief after reading many articles in scientific journals, etc and attending seminars of Temple Grandin and some top genome scientists ....I believe that it is a genetic/neural mutation of some sort triggered by a not yet known phenomena..... (but that is just my opinion .......

Spinner I get the exact same thing you are referring to! My specialist just says it is part of the dysautonomia.....it worries me sometimes because my BP can spike really hard and fast sometimes and I worry about strokes....but he said its only if it was prolonged that he would be concerned.....like you i do everything slowly

Bren

I was a ward clerk in a very busy cancer clinic.....exposed to lots of stuff.....I still wonder if that all wasn't a factor somehow....had to stop working in 2011....no forseeable return date yet

oh boy yes!! right after having my second saline infusion.....my mast cell specialist thinks it was a reaction and my autonomic specialist says it was a storm.....either way it was nasty!! I actually posted about it here on the forum under 'Scary Pots Attack after Saline Infusion and posted a video my nurse took (if anyone is interested in viewing)....it was very scary and painful....it lasted for over an hour and the only thing that brought it down was benadryl, 300mg of zantac and 1mg ativan....I used to get smaller ones before starting medication also..... haven't had another of that specific intensity but I have never tried getting infused again after that freaky stuff!

Bren

yep happens with me too! and you should never feel embarassed about something natural.....its not like you can control it my husband use to say " my wife is almost passing out during you know (to the specialist) and it certainly isn't because of my performance" lol it can be scary but my episodes are much better now that I am on a medication protocol for MCAS....... but I agree with Issie I don't think it just happens with mast cell issues......I was also tested and showed high catecholamines so I think anytime I have an event that adds more adrenaline my body just can't compensate and it crashes. Perhaps next time you could try taking a small dose of antihistamine and see if it helps? or perhaps a dose of your ativan as that will take the edge off your system......hang in there hugs

Bren

I have simplified my explanation as saying I have a rare nervous system illness that keeps my body from functioning normally (like MS but not fatal). I don't even try to explain the mast cell stuff....its even harder lol.... most people think its just allergies and cant understand how it can make you so sick..... yeah just allergies

Bren

In my own case my symptoms started about 2 years before being put on ativan and it actually helps my dysautonomia and POTS/MCAS......which is strange and I have never had to change my dose to get more effect.......I completely crashed after having a hysterectomy/ appendectomy....so maybe it really comes down to any kind of trauma or upset to the ANS system .....I actually found the ups and downs of trying all of the SSRI/SNRI meds right after my hysterectomy probably made matters much worse also... and I have found recently it isn't so great trying to come off the Florinef either after almost 3 years ....to be honest sometimes I wish I didn't try any of these meds....I don't think any of them are necessarily good long term....(I have a friend who became very disabled after trialling cymbalta and lyrica).....so who really knows?..... I just want to get better no matter what the cost

Bren

I am still learning about EDS and the different types....not totally sure but you don't have to have stretchy skin or visibly hypermobility I think to have EDS. I have hypermobility in my hands but in alot of my larger joints also....like hips, neck, lower back are my worst. At this point I cannot do anything exercise related or I will react. Same as you I get the edema, flushing, nausea, etc......same with heat and cold....... I cannot do physio as anything like that just sends me into a huge flare up and relapse for weeks.....just isnt worth it. I can very much relate to the fatigue and body pain. I get bone pain so bad sometimes.....especially in my legs that I would prefer amputation and it can last for hours. So far none of my mast cell meds or POTS meds have helped with it......I just keep trying....what more can we do .......it wouldnt hurt for you to see a specialist about the EDS as it can cause a lot of pain...I know there is no cure but there is some treatments for it......also there is a good american mast cell website you should join...... mastcelldisorders.wallack.us......... they have been a lot of help to me regarding the mast cell stuff. Feel free to PM me if you have any other questions

Bren

Hi Science Girl

You are the first person I have come across with this; I actually have the exact same problem as you only it happens whenever I aggravate my back. (I have a disc that pops in and out and indents the nerve root of my spine) I can send myself into a huge mast cell flare up just by putting my back out. I have no idea what the relationship is either. I havesuspected EDS also and know that my spine is very loose. In fact I experienced one of the worst episodes I have had in well over 6 months last night and I am now in a huge flare; perhaps brought on by a small amount of snow shovelling. I hate it and really wish I could find a specialist who could explain to me why it keeps happening? I also cannot exercise a lot because of exercise induced uritcaria (I swell up like crazy and get really sick.....just not worth it!)......I wish I had some answers for you but just wanted you to know you are not alone, and wish you the best....hang in there!

Bren

they may not be great for those with just POTS but are helpful in mast cell illness as they can act as a mast cell stabalizer so for me they have been very helpful.....I have not been able to tolerate any of the meds for just POTS ie SSRI/SNRI, mestinon, midodrine,beta blockers and now florinef due to pre-Cushings symptoms.....on the other hand since starting my mast cell protocol which includes a benzo; it is the most improvement I have had in 5 years so goes to show how every one of us can respond completely differently.......

Bren

yes I get this too and it can be quite painful.... I only get it on the right hand side......its very sharp shooting pain in the neck artery....my internist attributed it to BP spikes or possible carotidynia (inflammation of the carotid artery) he suggested to try a painkiller when it happens

Bren

lol Angela! you can have some of mine!! They are driving me nuts

When I went to see the MCAD specialist he said also that the testing is quite inconclusive because the syndrome is complicated so he said he depends more on clinical history and symptomology and if the patient responds well to treatment. Methylhistamine urine is very hard to catch like Angela said and elevated tryptase is used more as an indicator for mastocytosis. You can have normal test results and still have MCAD. Some of your symptoms sound like mine....I have flushing, and bad chemical sensitivity and do not react well to alot of medications also (that's common just with Potsies) most of the meds for MCAD (H1 and H2's) are over the counter so you could always trial some if you wanted to and see if you have a positive response. In the 5 years I have been dealing with this illness I only finally started to get some relief after starting the MCAD meds so if you are having mast cell issues you should experience a positive response.

Bren

I have had major increase in my breast size also from the florinef and it was also causing pre-Cushings symptoms in me.....I have been on it for over 2 years so my internist decided it was time to titrate down the dose (I am already on a very small dose) he said it is a steroid regardless of the type and over a long period of usage in some people it can start causing these issues. Since I have downed the dose my breasts have started to go down and I have lost at least 10 pounds of the weight; the only downfall is a lot of my POTS symptoms are intensifying ....... as for your sleep issues....sounds like a mirror image of mine in the beginning....since starting my mast cell meds it has gotten a bit better.......

Bren