Serbo

thanks Emma, I would be happy to accept chest pain on exertion as being "normal" with pOTS if they could just say so and describe what happening

So i had chest pain on exertion last night, doing my nightly power walk and after about 1.5 hours I increased the pace. Soon after i got a sharp pain on the left side of my chest, i reduced the pace and built back up and again the chest pain.

To me this is cardiac chest pain if it's on exertion, so going to go to a cardio on weds and get some tests done.

Beyond a stress echo what other tests would be of value in a POTS patient? I've had cardiac MRI's and stress tests in the past. i know structurally there's nothing wrong with my heart to cause the pain and having had arrhythmia's in the past i know i'm in sinus rhythm.

My pain doesn't spread anywhere, it's not crushing, and i'm not out of breath, and it quickly goes away when i take the pace down. My best guess is that it's something to do with a blood pressure irregularity during exercise, but i'm dumbfounded here.

Thanks

Yeah, I have learned that taking magnesium supplements (aside from my MCAD meds) is the single most helpful thing I take. It has helped control my POTS and improved my vasospasms tremendously. I usually end up hospitalized with Reynauds in the winter- with magnesium, so far all of my digits are pink!!! Good stuff (but big chalky pills- hard to swallow ) Hummus is a whole lot yummier

Hi Julie

What does a vasospasm feel like? It sounds scary! Good to hear the Mg is working for you.

Just bought a big pack of pumpkin seeds to get my hit!

There are links between EDS and certian personality types (would have to google to fine the paper), but competitiveness is part of this particular personality type. Type A?

Serbo, i would LOVE to read that...

I think it was a Dr who mentioned the EDS/competiveness link. It makes sense, there are some studies which link anxiety and EDS. With these things though it's always chicken and egg....

Psychiatry Research, 46:5948

Anxiety Disorders in the Joint Hypermobility Syndrome

Abstract. A case-control study was designed to test the association between joint hypermobility syndrome (JHS), an inherited disorder of collagen synthesis, and anxiety and phobic disorders. One hundred fourteen cases of JHS diagnosed at the rheumatology outpatient clinic of the Hospital de1 Mar (Barcelona) were compared to 59 control subjects randomly selected from patients seen at the same clinic. Both cases and controls were examined by a psychologist who used the Structured Clinical Interview for DSM-III-R and who was unaware of their medical diagnoses. DSM-III-R diagnoses of panic disorder, agoraphobia, and simple phobia, but not generalized anxiety disorder, dysthymic disorder, or major depression were found to be highly associated with JHS (age- and sex-adjusted odds ratio = 10.7). Mitral valve prolapse (MVP) was present only among JHS cases. Among cases of JHS, subjects with MVP were almost three times more likely to suffer from anxiety than subjects without MVP (odds ratio = 2.95) although the association was not statistically significant. The strong association between panic anxiety and JHS appears to occur at a higher level than the association between panic and MVP, and provides a new basis for further studies on the genetic background of panic-anxiety.

Is Joint Hypermobility Related to Anxiety in a Nonclinical Population Also?

This study examines the association between joint hypermobility syndrome and anxiety in a non- clinical sample. Subjects (N526) receiving a medical check-up were assessed with the Hospital del Mar hypermobility criteria and the State-Trait Anxiety Inventory. Scores for trait anxiety, and to a lesser extent state anxiety, were significantly higher among subjects with joint hypermobility syndrome than among subjects without this syndrome (median trait anxiety scores for women: 17 versus 11; median scores for men: 13 versus 1). These findings indicate that the association of joint hypermobility syndrome and anxiety holds even for subjects with no psychiatric diagnosis. Therefore, it seems that this benign connective tissue disorder is a predisposing factor for trait anxiety. However, it is necessary to further explore and define the biological basis of this syn- drome, as well as its associations and clinical expressions, which interact with great complexity.

(Psychosomatics 2004; 45:432–437)

Excellent post. This sounds very interesting. Meditation and breathing from stomach certainly helps, will check out the links you have included

I saw a top ENT in the uK this week with an interest in EDS.

When I am at my worst I always have tinitus, he acknowledged that low compression acts on the ear, and in turn the processing/encoding which causes tinitus and balance problems. How, they don't know as they don't understand the encoding process.

They put 100 people in a noise proof chamber, something like 20 of them still heard noise. The noise can only have been created by the brain, but they don't know how. it seems some people are more prone to this background noise. they do know these noise comes from the brain though as opposed to the hairs in the ears.

Any way - This weeks new scientist has a fascinating article on "SPACE FOG!"

Brain fog, but the astronaut space version! This caused the MIR/Space station collision a few years ago. no mention of OI as such, but vestibular problems instead which cause the fog. It extends to all sorts of problems with perception and general cognitive decline including the ability to form mental images. sounds familiar!

Here's one paper which is mentioned in the article, but i'd urge you to buy this week's New Scientist if your interested, it's eye opening

http://www.ncbi.nlm....pubmed/19750873

--Is your costo ever triggered by GERD?

Hard to say - I have chest pain daily, i suspect there are 3 sources. Gerd, muscular/EDS chest pain, and genuine POTS cardiac pain

--As I was walking my stress test, I got a spot of severe pain on my right side rib area. Is costo triggered by exercise?

Yes - I had chest pain on my stress test to. I have created clicking ribs/sternum through exercise/EDS. In EDS there is something called amplification where you are more prone to feel muscular/joint pain

--When I push on my rib cage, upper chest, right in the middle, the pain gets worse, and even worse still when I push on either side of the rib cage, on my ribs. This shows costo, right

I can always push my rib cage somewhere and feel pain but upper left is more painful for me. My sternum clicks, but it doesn't hurt to press there

--Can costo pain feel like burning, like reflux?

my chest pain feels different all the time! never crushing or radiating as per angina though

--My pain can go to my back and shoulders. Anyone else?

yes - have had pain in my shoulder and upper back

Costo doesn't mean anything by the way, in that it just a name given to describe non cardiac chest pain originating from muscle/bone as opposed to true angina for example. The cause of your costo if you have hyper mobility EDS would be the actual EDS, and perhaps some strain to your muscles/bone.

Aaron

There are links between EDS and certian personality types (would have to google to fine the paper), but competitiveness is part of this particular personality type. Type A?

Rich, congrats on the new place. I think it's the stress of the move which might do it. I remember lOoking at some psychology research and after death of a spouse moving house was the next most stressful life event!

I move myself to a new place in central London ground floor in a few weeks. Not sure how the nOise will effect the ANS!

Hi - Due to worsening POTS symptoms I have self diagnosed (never good! ), some sort of flare over the last month.

Mainly really I have just been feeling mentally not right and generally out of it leaving me unable to use Public transport and therefore go in to work amongst other things. I'm well aware that blood proably isnt getting to my brain as it should.

I seem to have tried manipulating every variable I can to try and get back to my baseline POTS state but so far no good. I'm seeing no improvement.

These are the variable's which I have tried to change. I'd be really greatful for suggestions on any other things that could be manipulated, meds aside to try and get one out of a hole! I am about to be treated for MCAD and then hopefully can start Fludro/Midro, but as yet on no drugs other than DDAVP for diabetes insipidus.

Sleep - Have tried 12 hours or 4 and everywhere in between, still wake up feeling out of it.

Bed tilt - Have tried sleep or with a 4 inch tilt, makes no difference. Any more than 4 inches and I keep waking up in night.

Exercise - Trying frequent short bouts of exercise, and long 2 hour sessions, niether makes a difference. Tolerance seems to have declined to cardio

Meditation

Diet - I eat Paleo gluten free anyway but it's not helping

Sugar/refined carbs - more or less makes no difference

Salt/potassium - Tried increasing and decreasing, niether helps

Hydration - Tried increasing and dereasing water with no change

Spending my days standing - not helping!

Supplements - Not tried anything other than a multi vit and vit C, but will be adding more

My recent FBC was normal, vit D good, BP has been normal for me (chronicly low diastolic), and I dont feel tired or fatigued, just out of it!

Only thing i can think of otherwise is some sort of electrolyte imbalace which i'll be geting tested for next week.

Any thoughts or tips appreciated, Sorry for the long post as always!

Thank you

Aaron

^ Have to agree with you. I have always had a big heart (5.8cm) from exercise (body building etc), got hit immediatley after some surgery. The heart can shrink in POTS patients from deconditioning becuase POTS stops you from being able to exercise, not the other way around.

yep from about 16 to 23 running 5 miles at 6am and then doing an hour of gym in the evening 5 days a week

i use evernote sometimes, has voice to text translation which is good, but in saying that im just making a good old fashioned spreadshet as i write

Hey Julie-

Not sure if this relates, but I remember reading about it yesterday in a link that Claire provided about histamine's role in the body:

"The carbohydrate digesting enyme Amylase is a natural IgG histamine blocker, which stabilizes mast cells and basophils that release histamine at the start of an inflammatory response. The excessive consumption of carbohydrates will chronically deplete amylase thereby increasing histamine-related health problems such as allergen reactions and sinus headaches. Relief can be achieved through using plant-based enzymes with meals, as well as reducing carbohydrate consumption. Chronic carbohydrate consumption creates stress which exhausts the adrenal glands and the immune system, leaving the body open to attack. Enzymes normally break down allergens into smaller components in order to eliminate it without stressing the body. But in the case of allergic symptoms--when there are inadequate enzymes reserves in the body histamine is released rather than enzymatic breakdown of the allergens."

http://biologyofkund...story=Histamine

I feel better with a high protein diet too

Julie

Julie - Excellent info as always! I suspect my recent groginess/cognitive decline is due to refined carb and histamine response

i get broken blood vessels in my eye all the time, not sure why but generally worse after exercise. One of eyes is nearly always blood shot

At the moment only licorice tea.

Thanks Ram, can you buy it in tea bag form or is it somehting you knock up yourself? I need to do some reading on icorice ad get cleared to take it, i understand it has some sides if taken in execsss.

Right now I take a good quality hypoallergenic multivitamin/mineral, ferrous fumarate 200mg, magnesium 200mg and vit D3 1000u. In the past I have taken 5-HTP, Fibrocare (magnesium & malic acid), vit C, melatonin and a few others but they all made my stomach burn or caused flushing. I am just so sensitive. I am grateful for the ones I can tolerate!

Thanks for your reply, what does the ferrous fumarate do for you? Glad you can tolerate the supps that you do take. I can empathise!

coq10 seems to help. and also drink the b vit gatoraide juice pouches. they are in the protine isle of the store. extra calories,salt and vitamins..plus they taste a lot like jellow before it gels!!yumm!

Thank kim, how much coQ10 do you take? My multi vit has some in but not sure if it's enough to do anything

I saw the pic on your blog and have one myself, not used it yet though, will give it a go later today it think and report back.

^ Hi Katy, I have not. I wear them at work some times, but generally i can exercise normally enough to not need them. I have some sports compression ones though which i might try when i bike ride.

Walked on the flat for 2 hours today no problems, i think the hills are what make it a cardio work out and i had been over doing it.

for the last couple of days i've had some problems exercising, i generally brisk walk for about an hour or 2 a day.

Recently, i've been getting what can i only describe as huge adrenalin type rushes when i exert (e.g walk up a few hills after some time). i get pretty light headed with these and have to stop exercising because it's very hard to continue, and scary not knowing whats going on. i get the old impending feeling of doom to!

No chest pain, no breathing problems really, HR probably high but not enough for me to notice.

My best guess is lack of blood getting to the brain becuase it's all in my legs trying to push myself up hills, and then the ANS compensates with adrenalin to try and get the blood to brain. Does that make sense to anyone!

Just curious, whats Supps does everyone take? I think by that I mean what do you take which isnt prescribed that helps?

I know that people take a vast array of supplements based on thier specific condition but i'm curious as to what really helps.

Myself - Just vit c and a muti vit, would like to try licquiroice (sp?) root

Aaron

Hi - Sounds like based on your research you know more than me about it, but yes i get light headed in some anxiety type situations. iim convinced it's not due to misbreathing. Most often when cognitive load is high, like trying to talk to multiple people at once.

I find binaural beat guided meditations send me out quite easily when i'm wide awake. The binaural beats seem to have quite an effect on me. I'm sure there are tons out there but this one is good.

http://itunes.apple.com/us/podcast/meditation-station/id123885923

It's the one rather aptly tittled zzzz

Normal relaxtion/sleep type sounds dont work for me, these do because of the binaural beats.

voted but not sure i quite fit in to the categories. Some days If i have more than 6 hours I feel terrible, any more than 7 and I am wiped out. Between 5 and 6.5 hours is perfect for me