Tobiano

I have inappropriate sinus tach so my resting HR is too high most of the time. I actually feel 'best' when it's in the 90s to 110's. Below 80 and I start feeling cold and everything seems to move slowly. I'm hoping to eventually find meds that will lower my HR... maybe once I get used to a slower HR it won't feel so strange.

Charlotte and badhbt - I agree. It's very scarry when it happens, or when someone else describes it to you after.

I'm still on the fence about this one. I'll emphasize it again at my next appointment. I almost want to see a neurologist just to be cleared, but it sounds like some neurologists may be stumped (especially if there is no primary CNS cause). The battle continues...

How frustrating. Is there anyone in the DINET physician list who happens to live close to you (for another opinion)?

Thanks for sharing everyone. When I'm 'back' after an episode I usually have to ask someone what time it is... sometimes 10 minutes have passed and sometimes it's closer to 45 min. It's such a weird feeling to have lost that time. Katybug - I can relate to that one. Hope everyone is having an uneventful weekend.

I've had an EEG test for seizures and it came back normal. ESoskis- thanks for the info! Makes sense.

I’m wondering if anyone can relate to this…When I have a severe episode (one that results in me collapsing to the floor) I seem to only remember small pieces of the overall event, even if other people report that I have not lost consciousness (I can still shake/nod my head to respond to yes/no questions) . When other people fill me in afterwards, I have no recollection of some things that happened and some recollection of others. This scares me a little. Does this happen to anyone else?

Yes. I get this too, maybe a few times a week. When it happens, it feels much different than pre-syncope. My HR slows, I get really cold (usually I'm overheated), get goosebumps, low muscle tone, and my eyes start to shut. I have to sleep it off for a few hours and then usually feel better (almost like my body needs to re-boot). I'm not sure why it happens either. Unlike my 'regular' pre-syncope episodes, I haven't found many triggers except perhaps eating too much.

Thanks for sharing!

I am wondering if anyone has been to see a dietitian. I eat a lot of salt and, when I was in the ER last week, my potassium was low. Went to my GP this week and she did not seem to think it was a big deal, as all my previous sodium and potassium levels have been normal. I’ll ask my cardiologist next time I go. Perhaps a dietitian would have some recommendations for high potassium foods and other things in my diet I don’t know to think about?

Also, for those on Florinef… how often do you get your sodium and potassium levels monitored?

Hi Ash. I'm also new here - I agree it's a great place with so much information. What a rollercoaster you have been through. I'm not quite sure what to say except we are listening and we do care.

lukgar - It's been happening for months now. It just seems to stop by itself. If you find anything that helps please let me know!

Sorry that this is happening . Not feeling understood just adds to the frustration and exhaustion. Someone posted about the 'Spoon Theory' a while ago - I shared this with some other people and it seemed to help them understand a little more... not sure if this might help. Trust me - we know that you are absolutely doing your best

Yes, I do get tremors sometimes and am not sure why. I get them fairly consistently (jaw, legs) after a severe episode. Also, sometimes my teeth will chatter if I make a quick postural change.

I am wondering if anyone else gets neurological symptoms during a severe episode/attack? During a really bad one, apparently my arms are stuck out in extension, hands are fisted shut, my neck is back in extension and my jaw is clenched. After I become more responsive, I experience tremors for up to a few hours and sometimes one side of my body is more involved than the other. I've been tested for seizures and the test was negative. Was wondering if this happens to others?

Hi Altruism,

How are you doing?

I'm not 100% sure. I was able to access the following article on my iphone from the ER. I didn't have time to read it fully because I was still a little loopy. Here is the table. Looks like they compare it to a baseline? Honestly I'm not sure - my instinct was just to ask them to take it. Does anyone else have experience with this??

From: Akin, C., Valent, P., & Metcalfe, D. (2010). Mast cell activation syndrome: Proposed diagnostic criteria. The Journal of Allergy and Clinical Immunology, 126 (6), pg. 1099-1104.

"TABLE II. Proposed criteria for the diagnosis of MCAS*

1. Episodic symptoms consistent with mast cell mediator release affecting >2 organ systems evidenced as follows:

a. Skin: urticaria, angioedema, flushing

b. Gastrointestinal: nausea, vomiting, diarrhea, abdominal cramping

c. Cardiovascular: hypotensive syncope or near syncope, tachycardia

d. Respiratory: wheezing

e. Naso-ocular: conjunctival injection, pruritus, nasal stuffiness

2. A decrease in the frequency or severity or resolution of symptoms with antimediator therapy: H1- and H2-histamine receptor inverse agonists,

antileukotriene medications (cysteinyl leukotriene receptor blockers or 5-lipoxygenase inhibitor), or mast cell stabilizers (cromolyn sodium)

3. Evidence of an increase in a validated urinary or serum marker of mast cell activation: documentation of an increase of the marker to greater than the patient’s baseline value during a symptomatic period on >2 occasions or, if baseline tryptase levels are persistently >15 ng, documentation of an increase of the tryptase level above baseline value on 1 occasion. Total serum tryptase level is recommended as the marker of choice; less specific (also from basophils) are 24-hour urine histamine metabolites or PGD2 or its metabolite 11-b-prostaglandin F2.

4. Rule out primary and secondary causes of mast cell activation and well-defined clinical idiopathic entities in Table I."

Thanks Katybug for that reminder . Needed that today.

Me too! I still am having trouble finding a balance - seems that being either too hungry or too full triggers something. Right now I'm sipping Ensure in between small meals. Yes - I often have difficulty describing my symptoms. I wish there was a better word for 'blah'.

That sounds like a tough place to be. Maybe the small sips of meal replacement... not sure how you respond to that. Hope you find some relief soon.

Sorry to hear you are having a rough time now. I hope things take a turn for the better soon and that you get some more answers in July.

Mine seemed to change too. Started as low HR and low BP. Now I am tachy. Hope you get some more answers soon. I agree, great idea about the table!

Thanks! And thanks to all the talk about MCAS here I remembered to have the doc order serum tryptase... my legs were all rashy by the time I got there. Interested to hear the results.

Ya - turned out to me one of those days. Big crash this morning :S Let's hope for a more upright day tomorrow.

Sounds like he has had a rough time lately. The flu + POTS must be an awful combo. Is there any way you could access a physiotherapist for some advice about a home exercise program?

Thanks everyone for your replies. I agree that it is a processing issue. It almost reminds me of visual neglect however I am ‘aware’ or at least ‘semi-aware’ that it is happening (e.g. most times I know to move my eyes around to capture more of my environment, although this takes quite a bit of effort).

Interested to hear about the vision therapy. Hope you see an improvement.

Dana – I can so relate to the experience of my brain not being able to cope with everything at once (and so selectively focusing on one thing). Sorry to hear about your left eye - blah indeed.

I’m wondering if anyone experiences this…I have a variety of visual symptoms that come and go including blurry vision. I also have times when my vision is not really blurry but is still affected in a way that is hard to describe. It’s like I only focus on one thing/a certain part of the environment at a time and don’t notice other things as much until I move my head, remind myself to look around, or bump into something. It’s not quite tunnel vision because I might be focusing on something in the periphery while not noticing something more centrally. I notice this more in busy environments like malls. Can anyone relate or describe this better?!

Yes!! Sometimes this happens... yawning even though I don't feel tired or bored. I mentioned this to one cardiologist who just rolled his eyes and didn't seem to have answers. Interesting to know that this happens to others!!