Science girl

Hey potsticker, Do you have the crash before the next dose? Did this happen when you started taking it and get better? If so how long did it take? I was a little freaked out as after about five days if taking it the crashes got worse and my nose and bowel would start bleeding.

Thanks Dizzygirls (cute name) for your encouragement I think EDS is a good candidate. I have hip and shoulder mobility and a long list of the complications...it might be the thing that ties it all together. Only thing is I wrote it off as I don't have any the skin issues of stretching and scaring. However, my girls look like they do which is weird. I've always considered myself the less flexible than my husband and girls (all three) as they do crazy things with there fingers and thumbs .... They even hassle me that I cant! Interesting that you think both your husband and yourself may have past on the EDS. Maybe it's the same for us? It's strange to the of all the people to marry, finding someone else with this genetic disorder! I really appreciate this forum too!

Sorry I can't be more helpful! I hope you find some answers and some relief. Keep looking and experimenting and stay strong!

In the last three months my eldest daughter, now 15 years old, has had POTS symptoms. It was sudden and I thought she had the flu but when she returned to school, they rang as she has fainted. Oh no that sounded not so good! I took her pulse lying and standing and her heart rate was jumping from 80 to 120. In a month she attended school for maybe only five whole days, the rest were at home, at the dr appointments or I had to go pick her up. She's waiting for a tilt test. As a mum with POTS I'm trying all my tricks...salt, coffee, she got permission to use the elevator at school and put her feet up in class. The school have put up a bed for her outside the directors office so she can lye down when needed...they have been great. Then a few weeks ago my youngest, 13 years old, broke down in tears as she was too tired to help around the house and said she couldn't breath. We listened to her lungs (hubby is a nurse) and found she had a heart arrhythmia! We all ended up in tears from the overwhelming thought of us all being sick! (Turned out to be a lovely bonding family time as we ate comfort food and snuggled in front of the ironman series! Silver linings!). The arrhythmia comes and goes so we must go to the hospital when it's happening. But she does seem to have a jump in her heart rate when she really exhausted but not as high as 40 beats/min. No other symptoms and is mostly functional for now. Does anybody else have kids with POTS as well as themselves? Have they found a genetic cause? We have a ray of problems associated with EDS and some hypermobility but haven't been tested for this. Any advice on how to cope supporting sick kids when being sick yourself, would be great. I haven't had a whole week crash (it was down to just a few days) for over a year but the last month I've crash 3 out of 4 weeks. My oldest was an amazing help with washing, and cleaning but now can't do much so it up to me. And I'm needing to drive her everywhere which I find hard.

Interesting idea. I tried phenylephrine also a alpha agonist. It definitely helped but the effect only lasted 3 hours then I'd crash and had to wait another hour for another dose. Decided it wasn't worth the roller coaster ride. Maybe the effect of this other drug might last longer?

Oh I also take antiinflammatories daily

I still have pain when walking but then my POTS sets in anyway and i need to rest. But it's better than a few years ago. Do you think it's bone pain? Or could it be fluid or pooled blood? I get pain in my pelvis and stomach if I wear knee high pressure stockings. I think it is that blood pools higher up. If it hasn't got enough space fluid would leak into this space creating swelling. Just a thought

Sue did you ever work this out? As I became more mobile I had similar issues. It turned out I had osteomalacia due to really low vit d. Happy to say I have much less problems after taking vit d. It took a while to build up bone strength again but i got there. Not sure if it was being bedridden and not getting enough sun causing the low vit d or it could be mast cell activation as mast cells deplete vit d.

I was just recently in NZ and saw a POTS specialist. I asked about this research and they said they had just been to a international POTS conference and it looks like it's normal for the general population to have these types of autoantibodies. I thought it a strange answer and they basically wrote off the research. Is this a common perception?

Hey Joann, How's your pain and kidney issues. I remember we had pain in a similar place and similar triggers. I've been on a diuretic since dec and my pain has decreased to a point I can do floor exercises involving bending at the waist without ending up in severe pain for days! Thought it might be helpful info for you

Jerry you might know noradrenaline as Norepinephrine the USA name.

I don't think the symptoms are as simple as hypoglycemia but may well be a trigger. Many of the symptoms of hypoglycemia are mediated by the low sugar causing an increase in noradrenaline and adrenaline. Since dysautonomia in our control of these hormone is damage we may be more sensitive or have a stronger reaction to hypoglycemia. So the problem may not be on the insulin/glucagon end of the response (like most people with hypoglycemia) but hypoglycemia triggering an already doggy and over reactive system. Stefsurf your symptoms sound like excess noradrenaline.

I've been trying to work this one out with my POTS for a while. I seem to do best if I don't let my blood sugar drop to much. I eat fruit, Veges and protein mostly (and good fats). I do not follow any fad diets as most have things I can't eat (mast cell issues)...this is just what my body seems to work best on. So here's a few of my personal theories 1. Sugar is a even stronger osmotic puller than salt...so if we have trouble keeping our fluid in our blood and out of the interstitial spaces then sugar will help wade off a hypovolemic attack by pulling water into the blood (that's why they use it in hospitals for emergencies). If I have a very low bp (67/46) lying sugar will quickly bring it up (and I also follow it with caffeine to lock in the fluid through vasoconstriction). However due to the insulin response to sugar this could also make us crash. So for me Fruit seems to give me a good pull without the highs and lows table sugar etc will bring. I include it in meals and snack on it when I feel light headed. 2. I don't do well on starches. I usually crash after eating them so I only eat them in the evening, if at all, when I can lye down after. I think this is for two reasons. Firstly, to much blood pooling to my digestive system trying to process all that starch. Secondly, not enough immediate sugar release to keep up my blood volume. So as much as low glycemic index is the advised way to go I find this very difficult, almost impossible. So I go more on Low glycemic load ie how much is going to get into my blood in a normal serving. Many fruits have high GI (they transfer sugar into the blood fast) but to get a high load in your blood you would have to eat a ton of them. A melon has high GI but a low load as most of it is water. I generally never eat more than 1/6 of a small melon at a time. But may combine it with a banana or mango that has a low immediate sugar transfer but lasts longer. I find banana and mangos great as they give a bit of immediate sugar but are processed over time giving a longer slower release of sugar without the pooling issues of dense starches like grains. These are just my experiences. We are all a bit different and may need different things.

Just did some reading and we have alpha adrenergic receptors on our masts cells. They usually inhibit the release of histamine...maybe these autoantibodies are the link to mast cell involvement. Then I got thinking that if maybe our immune system didn't start by targeting our autonomic systems directly but due to a high mast cell burden (due to Eds, allergies, and/or flu) our bodies made autoantibodies against our mast cells but specifically the adrenergic receptors on these cells. Side effect: more mast cell activation and POTS. Those that have a strong combo of genes to get rid of mast cell mediators have less problems in this area. totally hypothesising of course...man Id love to sit down with these scientist!

I'm already on omaprozole, which is great because I can now drink expresso and that's my most effect vasoconstrictor! I'm thinking of adding ranitidine to help stablise the mast cell action. The allergist I saw adviced this but I found if I take h2 blockers then I get H1 symptoms. I think it's a clearance issue. But I'm on ketotifen so things are a bit more stable than when he suggested it and it might just mop up any extra histamine. Giving ranitidine and an extra H2 blocker a try this week it a try this week so we will see how we go. I have a symposium for work in a week for the whole week and have no idea how I am going to cope. They have kindly made a room available with a bed!