Serbo

i suspect i have had pots for years, and although a major surgery triggered it properly i was often feeling dizzy prior. However at this time i was body building, 5 days weights training every week for an hour and had done this for about 6 years. i highly suspect this what was keeping me upright so to speak! i stopped body building and the dizziness got worse until my surgery and then after pots kicked in proper.

i am diagnosed POTS and central DI, both diagnosed at the sameish time. Central DI diagnosed by dehydration test.

I have stopped taking DDAVP for 3 weeks and was fine until today. Osmoality was very high, but today had a little more salt than usual and lost loads of urine.

what is the deal with salt sensitivity, even when on DDAVP when i have what some would call a normal amount of salt my body just over rides the DDAVP and i have to urinate BIG TIME!

looking in to sulfite sensitivity tyeing in with my MCAD but i don't know how one can be allergic to salt even with mcad.

feeling uber frustrated

For those of you on BB's, what is your resting HR prior to, and on BBs?

E.g im not on a BB and my resting heart rate is like 45 - 60. Creeps below 50 when i sleep.

Bit concerned about going back on BBs becasue how low my resting HR already is

Also struggling trying to keep weight on with MCAD cuasing problems, I am carbing up to keep weight on and this isnt helping.

I need some high calorie hypoglycemia friendly food stuffs? Any ideas!

Thanks

Aaron

hows everyone doing who suffers from this?

I am getting tested in about a months time, but i feel this is a big cause of my feeling "out of it"

Been eating manuka honey lately quite a bit and it's messed me up for days feeling out of it.

I cant find good solid information on the best way to manage this apart from avoiding refined carbs (like honey!). I find my body is always looking for sugar.

Is the best treatment to avoid sugars as much as possible, or just to have suagry food when having a crash (this would be every couple of hours for me!)?

I only have low GI fruits like berries, and eat tons of protien. meat with every meal. Ethically not enjoying eating so much meat

Hi - Re. the ECG i don't know, probably could be picked up on a 12 lead if you were in spasm @ the time.

Gold standard diagnosis is cadiac cath with a an agent introduced to try and induce spasm. If you search on here for variant angina or prizmental there's lots of info on people who have been for tests and diagnosed etc

Not had any work up for this myself

Thanks again for the reply Issie. Yes the plan is work on gut stuff, i know it needs to be done. i wanted to get the mast cell stuff sorted 1st and then work on the gut, but i guess the reality is they are interlinked.

Think i'll have a day off the sodium cromoglycate tomorrow and see if it the spasms disperse

Hello all

The coronary spasms mentioned is called variant angina or prinzmental angina. If you do a search here there are a few members who are diagnosed with this. It would be misleading to say that this condition is benign, from what I have read it seems to depend if you also have blocked arteries with it. If one does, it is more problematic.

When POTS first struck me I had a lot of chest pain, much of it relieved by lying down, i even fainted with it once. I did not know i had POTS at this stage so i think this was a low blood pressure pain if there is such a thing! Variant angina seems to produce high blood pressure during an attack as the artery's spasm.

ok thinking out loud here, need somewhere to write this down so may as well be here!

I have actually had a cardiac cath of sorts when they did my ablation in February for an arrythmia. They do imaging but i'm not sure if it's the same type as used to search for blocked arteries. In conjunction with this i have had ton's of ECG, 24/7 day monitors etc and i've had chest pain on them and it's never been remarked on.

I also have GERD, gross but burping being my main problem.

I have been on sodium cromoglycate for MCAD (Nasal/gastrocrom etc) for about 10 days now, and the main side effect seems to be spasming all over and fasculations. As soon as I take it i feel spasming in my stomach, calves, arms, under my eyes. Tonight i took it and lyed down, and soon after I felt 2 spasms lasting a second each in my chest, one centrally and one far left. Both with sharp sudden pain only lasting a second. Then i had a big spasm almost in my throat/upper chest, no chest pain until i panicked about it! When I take this med i thought my breathing was restricted but in reality i realised i needed to burp (erghh), sitting up and leaning forward removes the problem.

I think that I am a spasmer, and although I cant rule out vasospasm i suspect what i may be having is Esophaelgal Spasms

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001334/

In between a rock and a hard place here. Don't want to stop the sodium cromoglycate as i can't take any antihistamines, they all mess up my CNS.

If I could confirm they were just Esophaelgal spasms i'd put up and just deal with it, but not being able to rule out that they are otherwise is scary. My abdomen spasms and pulses from time to time. Went for an ultrasound to check for AAA. Wondering if this was a vascular spasm.

vent over.

Aaron

Thanks for the good words of advice! Up until a couple of days ago i was exercising intensely, 1 hour walk followed by 1 hour exercise bike. It's just as i put more and more together i'm coming to a possible conclusion that i am having vasospasms, and it's really putting me off. Your right though, the heart needs exercise.

I have had a cardiac mri a couple of years ago, an eccho a week ago and a AAA scan becuase of spasms there. Nothing structurally abnormal. This stuff can really drive anxiety, noticing pains in my left tricep which of course i would never have noticed before.

It's suspected. There's really no test that can be done. But, the treatment that is used for Kounis was used and it worked. The chest pains come with the reactions. I don't have them unless I'm having a really bad flare. I do however, notice tightness in my chest and heart area and that is one of my signals that I'm having a MCAD reaction. Then, I make sure I start taking lots of Claritin and Tagament. If I'm really bad, I'll also take a Benadryl - but, benadryl gives me horrible tremors and that makes me miserable. I've gotten this with foods also. Several times before I left the table. So, foods can cause the flare. It feels just like you're having a heart attack - it's a very intense pressure and pain and it seems to take your breath away. My pulse rate goes sky high too when it happens. I do usually flush with it though.

Serbo, hope this isn't your issue - but, if it is - it'd be good to know. I talked to the imunologist at Mayo about it and he has all sorts of info on it. But, there really hasn't been a whole lot of papers written on it and there hasn't been research done on it other than the one or two papers written. It must not be that common of a thing or there would be more known about it. But, it's one thing that I list as a problem - just in case of an ER trip that I can't communicate about.

Issie

Thanks for your reply Issie. Some of the worst chest pain I have ever had was after a meal. as you said, like what i'd imagine a heart attack to be like, but for me there was no flushing, itching or anyhting allergic.

Now that I have the mcad diagnosis i've found that pretty much most foods make me @ least have a mild itch.

Did you have a heart cath or anything to check if they could induce spasm? I wonder if those of us with EDS are more prone to vasospasm and hence a Kounis type reaction. My cardio has so far ruled out a cath while my mast cells are unstable.

Really would like to get to the bottom of whats going on with me, fearful of exercising in case of exertion induced chest pain which is in turn making POTS symptoms worse.

yeah i get this to, if i push through i get a massive adrenaline rush and some tachy, but like what i imagine what a sudden panic attack to be like. I guess the body is trying to use whatever mechanism it can to push blood to the brain

there is a type of fish oil which does not cause reflux. Sorry i can't remember the name of it, but the fish oil reflux problem is common

have a read and search on Ehlers Danlos Syndrome. certainly causes musceoskeletal pain

just bumping this thread as it's very informative. I can't help but think terms like microvascular angina and small vessel dysfunction are essentially the same thing at least when it comes to patients with connective discarders!

But distinct from that it seems you have kounis which only effects those of us with the mast cell component. I'm sure it must also be possible to have Kounis or at least vasospams induced by degranulation, and have variant/prinzmetal angina also.

Perhaps if you are prone to vasospasm (have variant angina anyway), kounis is secondary if you have a mast cell disorder.

I am confident that if i ate a cheese sandwich now i could induce intense left sided chest pain, but short of an ECG i guess there's no way to check if it's a kounis. I get the raised BP response in these situations but not generally above 150. I also get the adrenalin rush, but difficult to decipher if thats anxiety in response to chest pain.

Hi Sarah, not sure if your doc's study is still running since 2011? I'd love to be involved if so. I have POTS/ EDS 3 and MCAD.

Thanks

hi everyone - i have a question on Kounis. Still trying to get to the bottom of the chest pain stuff.

Issie - I've read through this whole thread, sorry to read you have had such a rough time with the chest pain and mast cell problems in combination. Did the doctor's actually diagnose kounis or was it just suspected? I wondered if you had chest pain independently of any reactions, or just @ the same time as a reaction?

I certainly have chest pain intermittently, but thinking back to my worst recent reaction I had no chest pain. Prior to the MCAD kicking off for me i had some serious chest pain in response to an oily, gluten meal. No flushing though or any suggestive allergy response other the chest pain. Probably more suggestive of GI stuff, but the chest pain was intense.

Best of luck getting back to your baseline Issie. Hang in there, once you get your ducks in a row with the meds i'm sure you'll be back to baseline soon.

Aaron

Aaron,

forgive me for commenting so late- I somehow missed your post. I am over the moon about your DX. Yay!!! PLEASE share the name of your marvelous doctor who was open to all of these connections.I know that s/he can be such a help to other members here. I am thrilled that you received your DX in such record time. Helping other sufferers is ultimately the reason that so many of us post; so it's very encouraging to see the progress that you have made. Your self advocacy, research, persistence, and determination are a model to us all.

I am guessing by your questions, regarding meds, that your doc is not one of the top mast cell researchers. S/he may have to work with either Dr. Marianna Castells in Boston or Dr. Lawrence Afrin in Charleston to help you find an effective regimen. Dr. Castells also does phone consults OR you may be best served by a visit to either of them.

Please keep us posted on your progress. I am delighted that you have a DX firmed up, and have my fingers and toes crossed that an effective treatment plan will follow.

Julie

Julie - I missed your post somehow, thank you for your kind words and advice as always! Things are looking up i think. I hope you are faring well also.

I had my sodium cromoglicate challenge today. I don't want to give to much away about the format of the challenge in case anyone else with drug sensitivities undergoes a similar test. I will say though that placebo is a powerful thing.

Hi Claire-

Sorry to hear about your ambulance ride- VERY scary. I've had pneumonia (with my MCAS/MCAD) and it was awful. I feel for you.

Despite Aaron's kind words, I'm no masto expert, just a fellow sufferer. But, I think Ana's got it right- the diagnostic criteria still has a ways to go. Don't be discouraged by your normal levels. Both tryptase and methylhistamine are notoriously unreliable as far as proving MCA & both have such a short shelf life. It's almost like finding a needle in a haystack- if you can get the RIGHT testing done, the RIGHT way at the RIGHT time. Pay attention to whether or not you are improving with MCAS/MCAD meds. If so, chances are that's what you are dealing with.

Other things you can have tested are your prostaglandin D-2 and heparin levels. Also, there is a high correlation between norepinepherine and MCAS. In the meantime, work with a physician on tweaking your meds to become as functional as possible.

Hugs-

Julie

My Immunologist spoke very highly of the prostaglandin D-2 test, not something we have here in the UK

Hi - Maybe an expert on MCS like Julie can offer an opinion

I can tell you I had 3 seperate samples for methyl histamine rather than 1 24 collection, 2 were high, 1 was normal.

The 2 "very high" samples I gave I was no where near anaphlaxis, just a bit flushed to be honest. I gave the samples at the end of hospital appointments, there was no attack or anything pre giving the samples. I was just aware that i was a bit flushed in general, but apparently that was enough to give high readings. Everyone is different though, a second opinion or sample after accute attack is probably needed.

Something that set me off today in a big way, the gel that they use to do an ultrasound. Had a full on reaction, erghh

I have Hypertension along with my Neurocardiogenic Syncope and intermittent POTS. I used to think I was having a heart attack all the time. Been to the E.R. many times, only to be sent home and the dr's telling me all the tests came back fine. I get chest pain, headaches, jaw pain, neck/carotid tightness, palpitations and my left arm gets so weak that I can barely lift it up. It used to be scary, I guess it still is, but I've learned to accept it, knowing I have Dysautonomia! Still trying to find a doc in my area to help me understand this syndrome. I've been to too many dr's who have just given up on me. Most, I'm finding out, haven't ever heard of Dysautonomia... they just want to label us with anxiety and put us all on antidepressants!

Hang in there...one day we'll have answers... I hope!

Thanks Cindee - Reluctant to belive chest pain on exertion is just one of those things, without expalination of why

I went to the Cardiologist today. Had an allergic reaction to the gel used for the eccho but thats a whole other story!

Heart is slightly big (5.8cm i think), but told nothing to worry about. Told to continue exercising but take it down a notch if i get chest pain. Have been offered a Cardiac MRI with adrenaline or similar if i want it, or a modified stress test with eccho.

Been told its very unlikley to be angina in some one my age (26), and based on the pain i described.

Once I have my allergies under control I will go for the modified stress test i think.

Hi Ruby Tuesday - What was your BP like when you wernt on Midro? Seems quite low even with the Midro. Do you find it helps you much?