julieph85

Mine are also worst when I lay on my left side

I have RA and was told I have a four fold increased risk of valve disease. Lovely. I can only imagine what else is gonna break from the autoimmune pots! The cardio i just saw said my tricuspid valve looks like a 40 year olds . I'm 26. Great!

Sounds like your esophogial sphincter is tight. Do you ever get heart burn?

My entire house is wood floors. I use the Swiffer wood floor mop and vacuum but I would live to try a steam mop! Where do you get them and what is the brand?

I think it is pretty obvious here that a lot of us have sharp pain over the heart that comes and goes and lasts a few seconds at a time. But,,, why? I read somewhere there was a theory about unequal pressures in the heart chambers. What do u guys think?

Lol, me too !!

Wow! I have always known there was a connection!

I have had unexplained neck pain for 6 years, when my pots flares it is way worse I don't feel like that's a coincidence

Looks like I'm just like you

I have a partial empty sella- which means my pituitary is being compressed with cerebrospinal fluid. Every doc says it is not relevant to my pots

Blue, the way I have always rasionalised my christianity is- its better to believe and be wrong then to not believe and be wrong.

Another reason I believe there is a neuro endocrine cause! Octreotide suppresses so many peptides, the answer has to lie in there.

Allaboutpeace, yes having this illness with newborn and now toddler twins has been the hardest thing in my life! I feel I missed out on bonding with them as babies because I could never breath and I am always dizzy. I have also noticed that the vibrating mostly occurs when I'm laying on my stomach! I actually cannot lay on my sides to sleep at all because my blood pressure drops so low when I do that I become short of breath and dizzy. I'm only able to sleep on my back.

I know your carotid arteries have a Baro reflex but this seems to be more tied to using my back muscles

Yes it also happens to me through out the night and it occurs with tachycardia but the two don't have to go together. In other words, I have woken in the night shaking violently but just shaking no tach, and I have woken in the night shaking with tach. Also I used to experience this thing that has thankfully gotten better, but I used to wake up always about an hour into sleep with extreme tachycardia- as high as 180 bpm and it would go on and on for about 20 minutes. I would always know when it was stopping because at the end of it my stomach cramps up real bad and then my hr slows. It could also be triggered to happen if I rolled over in my sleep or stood up to fast out of bed ( like to go to my twins room in the middle of the night when they cry). My doc said he thought I was fainting in my sleep so my body was producing huge amounts of NE to counteract it and that's what triggered the tachy episodes. I still don't understand though why rolling over in bed could trigger one of those episodes if it was just fainting.

Yes I do this too whenever my pots is in a bad flair. It also happens when I sleep and I wake up gasping.

This happens regularly to me and just lie you said, it is worse if I wake up suddenly. My entire body shakes so bad it looks like I'm having a seizure. It stops after a few seconds when I start to move my limbs. I agree that it has something to do with norepinephrin. You actually have a surge in NE a few second before waking so I have attributed it to that.

Issie, the stuff I have you about CCK talks about opiate receptors.

I think that must have been what the doc was thinking with the salt. I have orthostatic hypertension but they think it is a compensatory response to pooling . Thanks!

I love that!i also have nights where I will get unexplained bradycardia and it gives me a panic attack too

Here you go issie. CCK is one of the gut peptides that is inhibited by octreotide. Read through the whole thing. I think a lot will stick out to you in regards to our symptoms. It also mentions that capscasin is a natural antagonist of it. http://en.m.wikipedia.org/wiki/Cholecystokinin

I would bet it is the sugar you can't tolerate. I cannot have anything with carbohydrates at all. Carbs aggravate my pots so bad and give me a horrible adrenaline response. Dr. A says that it is because insulin is released after eating carbs and it is a very potent vaso dilator. Basically when the insulin dilates the vessels your body releases large amounts of adrenaline to constrict them which makes us feel terrible. This is why octreotide helps a lot of pots patients- it inhibits insulin release. I feel so much better when I'm hungry and haven't eaten for a few hours and the reason is because my insulin is low. You can test this by fasting for about 4 hours in the morning. Around 10 or 11 o'clock eat something very high in carbs such as pancakes or something with a lot of sugar and note how you feel about 20 to 30 minutes later. The next day do the same fast and instead of eating something high in carbs eat something with no carbs such as eggs and bacon and see how you feel. I guarantee you will be amazed. Most of us cannot tolerate insulin but I think a lot of people haven't realized it yet because there are carbs in so many foods they don't realize how much better they would feel of they didn't eat them. I would like to emphasize the problem isn't gluten, it is sugar. Try the test you will be amazed!

I know I've heard that. I think the only thing that is kind of comparable is midodrine, but that is more a peripheral constrictor and I know you did not like that one. I would maybe try a natural somatostatin agonist or a peptide antagonist. I believe capsaicin is a proven antagonist of several dilatory gut peptides.

I'm about to start paroxetine which is very similar to sertraline. They are both category c. I think it is smart to avoid pregnancy when taking it, however the tetrogenic effects are short lived. There will be no long term effect on her firtility so in my opinion it should be okay as long as she weans before pregnancy.

That's great! Let usowner how it goes. Octreotide is next on my list:)