Serbo

I think julie gave good advice previosuly when she said when she had a severe reaction she used to go to ER rooms and just wait in the waiting room. If it got worse she checked in, if not she left. i'd always err on the side of caution with any unusual reaction.

Hi shelly, will PM you

Hi Tennille,

Glad to hear the MCAD meds are helping some what. Not really had breathing issues, but when i react to dust/perfume/chemical's whatever I cough tons and often see some blood in the saliva. Gross! Getting this checked out by an ENT soon. I think EDS in all formats can cause tissue fragility.

Likewise i'd like to get an MRI or scan done at the time of jolt to see whats going on. Possibly its the bodies reaction to a huge sudden release of mast cells, or a sudden change in BP, who knows!

completely agree with you about gluten. I get no nausea now at all. I've read that the problem with wheat now is that it's been genetically modified to be longer to produce a higher yield, and this modification might be whats causing the problem. The body just isnt used to it in this format. Good luck with the gluten free diet, a paleo based diet doesn't seem all to bad based on some of the the recipes i have seen.

Thanks for the tip about reading other peoples meds, i think i might try some of the supps you list. Glad to hear that you have been diagnosed and know what your dealing with!

Aaron

Aaron, how fortunate that you got your diagnosis so quickly. That doesn't happen often, as many of our members can attest. As to stress/ panic, it will definitely cause problems because it involves huge release of catecholamines, which speeds up all your body systems.

Thank you. You are so right, unrequired stress/panic must be the enemy of a POTS patients' ANS!

Glad you got some answers Serbo. Wow, you sound like you have awesome doctors. Good for you. I don't know if I have MCAS, but today I ate some fish and I got flushed and have been very ill with a fever of 100 and am now hacking up terrible stuff from my gland in my throat. I hope it goes away because I can't take any medication....at all. Not even pepto bismol, it sent me to the ER once. So I'm afraid I will be in the same boat as you if this is my issue. I will curious to hear how you are doing. I hope you can feel better soon. Will be thinking of you next week. Glad they are putting you in the hospital to try some meds. That's really good to hear.

Thanks Maiysa, sorry to hear about reaction! I hope its passed by now, i feel your pain in not being able to take any meds for it.

The worst reaction I had my tempearture was very low rather than high and i was sweating quite a lot. I guess we are all different!

Oh oops forgot to mention the mastocytosis society recommends putting "systemic mast cell disorder" on your bracelet instead of MCAS because it's better understood

Also I often get high volume urine output when I flare but haven't been checked for DI just kept slamming back the fluids

Thank you! Nice to know you have regular POTS like me. i feel less like an anomoly now!

I will be medical bracelet/card shopping tomorrow. Do you take fludro or anything for your BP by the way? Desperate to get the mast cells stable so i can try midro/fludro again and get bp high enough to do normal stuff.

I check your blog some times by the way, please keep it up!

So glad to hear your doctors have diagnosed you.... not a good diagnosis, of course, but at least you know what you are dealing with and now can start the road to getting it to a manageable level hopefully. That's where I am too, trying to manage my symptoms. I have hyperadrenegic pots and am now quite sure I have MCAD, but I'm still going through the tests to rule out other stuff and get a more firm diagnosis. Can you tell me what tests they did to come up with the MCAD/S diagnosis?

I am struggling with finding the right meds too. Unfortunately, I couldn't tolerate doxepin at all, but doing OK with hydroxyzine (Atarax) and Allegra and Benadryl - - I do get super dry so drink lots of water and electrolyte replenish. The first few days of the Allegra I thought i was getting quite a bit better, but today I took it and had a bad reaction day anyway so was quite unhappy about that, and not sure what I reacted to (like you've both mentioned, I feel like my allergy foods vary from day to day, or maybe it's my stress that does). On the Allegra, some really weird facial and body numbness seems to have largely resolved though. Tonight I have to try Singulair again - - told my doc I'd do it, but am nervous because I did have what seemed like a reaction the first two times I tried it a few weeks ago. I'm so medicine paranoid that I'll probably split it in 4ths and just take 1/4 for a couple days before going up (barring a bad reaction to the first 4th) That way, it's out of my system faster if I do react, but if I'm going to react, I do it to even the smallest quantity. My GP is going to call my allergist/immunologist to see if she is OK with me trying oral cromolyn, as right now I only use the Nasalcrom which doesn't do much I'm convinced. I am jealous that they are checking you into the hospital to try meds! That's a great idea and hopefully they will find the right combo for you. I suggested that to my doctor and she wouldn't go for it - - so I'm at home trying them myself nervously and with Epi-pen near by in case.

What foods are your staples that you can tolerate well? I was doing chicken, rice, cauliflower, broccoli and carrots, and rice cakes/rice cereal. Boring but it was working until a couple days ago and now I think I'm reacting to rice and broccoli and carrots. Tried oats and one time has a whopper of a reaction but on second try didn't. My GP says I should quit worrying about gluten and just try some mild wheat food, but I had gone gluten-free several weeks before my first anaphylaxis a couple months ago, and I'm leery of trying it. But I have to eat something. It's so hard to know what to eat - - I've reacted to squash, apple, banana, green beans. My GP is concerned because I've gone from 159 lbs to 139 lbs in 2 months. Although 139 is actually my ideal weight, and I'm enjoying looking slim in my clothes again,, ha, I'm worried that at this rate I'll lose too much more over the next two months.

Thanks for your reply Carol. Sorry to hear that likewise you are still going through it all.

The tests they did were urine methylhistamine and serum tryptase. Here in the UK they dont do a 24 hour urine collection like they do in the US. I just had 3 random urine samples about 2 weeks apart. 2 were high 1 was normal, and the 3 blood draws (serum tryptase were normal) which is sugestive of MCAD.

They also blood test to check other pathways, 1 look to look for a histmaine sensitivy problem, and 1 to look for a histmaine release problem (seperate to MCAD). Thats how i had it explained to me.

They also do diamine oxidase blood test, and would have liked to do a progesterone d blood test but it's only available in the US at the moment. Maybe thats the one to push for? I understand it's very useful in diagnosis of MCAD.

They need to rule out Pheo and Carcinoid but from your previous posts i think you mentioned that they are on it.

The doc said MCAD patients can flush/induce urticaria thorugh stress/nerves alone, something we need to be concious of when taking new meds. I could induce what looks like an allergic reaction before even taking the meds! Your med plan sounds good. You are further down the line than me in trying the meds.

Staple foods..........

Some of these induce itchyness/numb/bp drop etc face but i just eat them anyway:

chicken (not packaged)

salmon (not smoked)

steak

eggs

some white fish

seed and nut bars

honey

gluten free seeded bread (but not brown for some reason)

low fat mayo

sweet potatoes

potatoes

cajun spice

pepper

olive oil

lettuce

brocolli

green beans

carrot

sweede

cauliflower

bannana

apricot

blueberries

strawberries

apples

cherries

rasberrys

organic dates

I have been generally paleo/gluten free for about 6 months now, but tried some oats about a month ago and it gave me the worst food reaction i've had, put me in ER. So i'm staying paleo for now, grains dont seem to be good for me.

Couple of things the Immunogist said to me which might be of interest -

There is no uniform MCAD patient, as it stands it's recognised with MCAD patients that we take many forms. E.g - Some just have mcad, some have MCAD and MCS, some flush after exercise, some dont. Probably why we can tolerate different foods.

Once the mast cells are stirred up in a MAST cell patient you may react to things previously not reacted to. I think this is well illustrated by food in the sense that some foods are good one day and bad another.

Like you I have also lost a lot of weight, but quite enjoying it! Got a bit worried for a while though and managed to put on a half stone. i just allowed myself an extra dinner each day and increased the seeds/nut bars as they are high calorie and that helped.

Good luck with the oral cromolyn, let me know how it goes. I said to my doc that even in hosp i would only try like a quater pill 1st go and he said you can get it in syrup form where the dose can be reduced right down accruately. Might be an idea if you can get it.

All i know is that I cant do any grain based food right now, very boring eating potaotes for breakfast but if you could hack it might be an idea to try no grains for a day or so to see if it helps.

Aaron

Thanks for the reply Issie. How many Mg of vitamin C do you take? slow release I imagine? I had heard that blueberries are a natural antihistamine, perhaps because of the vit c.

I had some other lab tests done, and the Dr asked if i took vit D supps becuase the result was high. i do not, so i must be doing something right in that respect!

Hi all,

So today, thanks to the knowledge of the amazing posters on this forum, I finally got a diagnosis of MCAD and MCS from the immunologist. From my 1st reaction to diagnosis has been about 6 weeks. I am so greatful for the help of everyone on here who helped me pursue a diagnosis.

So I have some questions for others in the same postion, sorry for the long post and ramble in advance!

- I have to now carry a medi/bracelet card with MCAD/EDS III, POTS and Diabetes insipidus on it. Any tips on how to present this? Aware most people have not heard of MCAD. I am going to put a card on my keys I think.

- Is there anyone else like me who has MCAD and drug sensitivity (i.e cant take antihistamines)? If so what drugs can you take?

- is there anyone one here who has normal POTS and MCAD, or just hyper POTS?

- Does anyone else have Diabetes Insipidus and MCAD? My Immunologist said that low unrine osmoality can skew the methyl histamine result, becuase of something to do with the creatine. i dont understand exactly what he means but it seems that low urine osmoality can increase the unrine methyl histamine result. My immunologist is contacting an MCAD expert from Spain to confirm my diagnosis because of this.

I am being admitted to hospital to try Sodium Cromoglycate next week in case i react to it. i am nervous about this becuase i read on here that someone has had drop attacks from it. I have had this before from zyrtek, and if i cant take Sodium Cromoglycate or anti histamines i'll have to be living in a bubble! They will also be testing adrenaline, hydrocortisone and fludrocortisone. I couldnt tolerate fludro previously.

I have a theory that my CNS is super sensitive or theres something wrong with it. I have central diabetes insipidus with no pituatry inflamation etc, extreme reactions to drugs such as the drop attacks and heart rythym disruption from some anti histamines. My head MRI was normal.

I also spoke to the Immunologist about the role of stress/stimulation in MCAD/MCS. I can eat some foods fine one day, and then the next day react. The same applies to some chemical smells. He think stress plays a big part of it, as yet they are not sure how, but stress can certainly degranulate mast cells and cuase flushing/urticaria. i wonder if an MCAD patient could induce anaphlaxys throguh a panic attack or extreme stress!

One final thing. i had been experiencing what i can only describe as sudden jolts to the head out of no where for a while. Immunologsit thinks they are interestingly associated with sudden MAST cell degranulation. This makes sense to me, recently had them when i smealt a spilled bottle of mouthwash, and was in a room full of chinese food.

Sorry for the ramble!

Aaron

couldn't agree more, seems to be a fine balance between enough salt and to much. I fi feel i've had to much i have a banana which helps balance it out.

I am on DDAVP which makes it even more of a precarious balalcne

Interestingly i have a cousin, similar age to me but female who also has EDS III and POTS but I understand she generally functions as normal. There are so many factors that seem to govern the severity of POTS, most of them not well understood.

^ completely agree. i have EDS also along with Diabetes insipidus so expect it be a lifelong thing. For me it's a quality of life issue, but i am still completely expectant that with treatment (currently on no POTS meds), that I will see some improvement hopefully.

this is a recent study, sample fairly large for PoTS. All "florid" PoTS patients, but tracked a good number over time, the longest from 1997, supports all other recent research that I have read which suggests improvements for most patients over time from initial on set. Almost a third of P's in that study were asymptomatic at follow up.

http://www.ncbi.nlm.nih.gov/pubmed/22190289

keeping on track, but a related questions. For those that have the EDS with the POTS how has that developed? Looking it as a separate entity from the POTS.

Wow Serbo - you are my new hero! That's hard core!

honestly it's not that bad. with the gag there is an urge to grab at the thing but it lasts about 3 seconds and then there's no discomfort really. I was in and out of the centre where they did the last one in 3 quarters of an hour.

Interestingly i noticed when they move the camera in different area it stimulates the vagus nerve in different ways and speeds up/slows heart rate, gives you an appreciation of how refulx and digestive problems affect the heart!

Hi All

I have had 2 endoscopys, both without sedation/anasthesia.

It's not actually that bad without it, the unpleasant bit is getting the scope beyond the gag reflex, but that takes a few seconds and then you just have to wait for them to get the tube out. They numb the back of the throat with a spray which helps the gag part anyway. I had 8 biopsies while they were in there, you don't feel them, and they're done in about 5 mins.

You will tons better and more relived having had it done.

Cant say about colonoscopy as not had that.

wearing 3 pairs of gloves when i go walking at night, and still have to stop not because of fatigue or being generally cold, but because my hands are so cold. It's like i can't feel my hands at all anymore just my bones! not nice. very frustrating though because i want to keep exercising, but last about an hour before the hands just get to cold. It's only about -1/2 in the UK a night right now, so not even that cold!

there is a study, you'll find it if you google it by professor rodney graeme which shows that local anaesthetics are not effective for EDS patients. they do not know why

i am early days with POTS and work, so i can't say much at this stage. Will get back to this. booking meeting rooms and working working in a room or from home where possible helps. Flexible hours is also helpful to me, but leaves me working very late.

Stress is a major factor, but id be more stressed if i wasn't working.

Think my employer would get rid of me if they could, not sure really, but at this stage they can't.

Also I am off to see an ENT soon about occasional blood in the saliva (nice!), but he has a knowledge of POTS/EDS so i'm going to ask him all about the link. If anyone has any questions that they might want to fling at an ENT about this stuff do let me know and i'll take a list!

Ram - Your spot on. Was trying to find a post that you made some time ago linking "brain fog" with the inner ear. I'm going through a mini flair at the moment, and have noticed tinnitus in my left ear, pressure and that its not working as well. Chicken and egg stuff but I think low BP - reduced blood flow to brain/inner ear = Brain fog/balance problems (in my case!)

Does caffeine or liquirice help with the fog or allow one to think more clearly?

I had a ton of salt yesterday which kind of helped but mainly it resulted in my body getting rid of a ton of fluid and me having to take more DDAVP to keep fluid on board and not pass out!

Chaos - Lol on doing Yoga with the fog, must be so hard. Do you still do Yoga? I imagine it'd be good exercise for POTS.

For those that work, how have you structured your finances since being diagnosed with POTS? I.E do you save lots now, or the opposite and enjoy the money you earn?

havent got these for a while, but have a noticed some today perhaps coinciding with feeling a bit out of it, lack of blood? Used to also get blocks of grey in my vision and a lot of flashes of purple/blue light at night but seems to have calmed down now

Thanks everyone.

Peregrine - I have had what you describe before but not for a while. Occasionally now though i get times where i stumble over words in meetings or on calls, or some times my brain takes longer than normal to remember a word. It's very frustrating. I can empathise with staring at a wall to, it's that feeling of suddenly realising you have zoned out!

What i have had yesterday is different though, somewhere between fog and derealization - very strange, a feeling of being able to engage with work etc, but also feeling not all there or quite right. I have picked up a stomach bug or something and it must be to do with that