Annaliese

Issie. I loooove that youre bringing up this renin aldosterone issue. Thank you.

Hi Rama. You are one tough man, working so much when you are ill. Its interesting you mention aldosterone. Your symptoms seem very similar to mine so i always follow your posts. I was just at the endo yesterday begging him to test my aldosterone levels but he wouldnt (plus he charged me 450). I even showed him the article which shows the paradoxical low blood volume an high angiotensin II in some patients. I think in my case an autoimmune disease is knocking off some process which controls blood volume. I think thirst strongly inicates low blood volume. We feel thirsty so we drink but why are we constantly peeing everything out all the time? I think the low blood volume causes the sympathetic activation and puts us in shock mode. At night when the symp system 'sleeps' all sorts of weird stuff happens because of the low blood volume. Do you have nighttime issues with flushing, palps and twitching? Since i started florinef every single nighttime symptom has disappeared. Just be careful with your dose of it. It hangs around for ages. I started at .1 and was fine on day 1 but by day 3 my calves felt like they were going to explode. Ive since settled on 1/4 tab (0.025). Sorry things arent going so well for you at the mo. Could it be the heat? I cant wait til march when it gets cooler. My husband and kids are currently on a beach holiday but it was too hot for me to go.

I cant sit longer than 10 mins. It gives me chest pain, diarrhea and makes me pee! I usually sit with my feet elevated. I prob have hyper pots.

Hi Dizzy blonde. I can see from your photo that you have problems with manual dexterity ; )

I noticed that after i had an MRI, my vertigo was better for a few hours. Could the vibrations have cleared something? Maybe it was all in my imagination, who knows. I definitely think the ear thing has a relationship with dys. I find the longer i try to stand the worse the vertigo is.

For a year my feet have been freezing and now they fuctuate from freezing to warm/hot. Has this happened to anyone else? I started successfully practising biofeedback a few weeks ago (imagining my feet getting warm) so it could be that some of the normal blood flow is returning now on its own due to the biofeedback practice. But i guess what im worried about is that instead of this being an improvement its actually an indicator of neuropathy setting it. I havent lost any feeling on my skin though ( i can still feel the diff between cold and hot). Any thoughts would be really appreciated as im not sure whether this is an indicator of disease progression or regression. For people who do have neuropathy, what does it feel like?

Yep, happens to me because my sleeping bp is too low. After the dizzy,im going to faint feeling my legs start kicking. Very scary. Now i take 1/4 tab florinef before going to bed and this has removed that problem.

I started with high standing bp and over a year and a half it has gradually decreased to the point where now i feel dizzy all the time. My bp is still the lowest when lying though.

I agree with Rissy. Get blood catecholamines done standing (after 10 mins ) and lying after at least 10mins.

Im glad you brought this up- i have a story to tell which will make me sound a bit like ive taken a drug overdose but here goes anyway. I think ive got low flow pots because my arms and legs are always freezing. Anyway, one night whilst i was watching tv i decided to try to super relax my muscles in my legs and try to imagine blood flowing into my feet. After about half an hour of doing this, all of a sudden i felt a warm (actually hot) flush into my feet! It was sort of unpleasant actually. I felt my feet and sure enough they were warm. Ive been practising it ever since. Now sometimes when i turn the tv on the flush to my feet happend on its own, sort of like a pavlovs's dog reaction i guess. Very weird dont you think?

It took me a while to get the right dose of florinef. The dr told me to take 1 tablet per day and after 3 days it felt like my calves were going to explode. Plus i was giving me big headaches. I then tried half, still headaches. Now i take 1/4 and that's much better. I prefer to take 1/4 every day rather than 1/2 every two days because in theory this would allow for a more constant level to be achieved.

Eek, how did i double post? I'll blame it on the ipad and lack of coordination.

http://ep.physoc.org/content/66/2/117.full.pdf So, there IS evidence that blood volume is increased. Does anybody know how much blood volume expansion we can realistically expect? Ive heard low aldosterone can cause hearing and vertigo probs. Has anyone developed vertigo after they started their high salt diet? Im asking these questions because my vertigo is doing my head in and im wondering if the high salt diet is really worth it.

http://summaries.cochrane.org/CD004022/short-term-studies-show-that-in-people-with-elevated-blood-pressure-low-salt-diets-lead-to-useful-drops-in-blood-pressure-but-overall-harms-or-benefits-are-not-known I was wondering what long term adaptations the body makes to a high salt diet. It seems renin and aldosterone are reduced, so overall is blood volume really increased? The blood pressure changes that are talked about in the article above dont seem that impressive to me....just wondering if anyone has investigated this further than me...

http://summaries.cochrane.org/CD004022/short-term-studies-show-that-in-people-with-elevated-blood-pressure-low-salt-diets-lead-to-useful-drops-in-blood-pressure-but-overall-harms-or-benefits-are-not-known I was wondering what long term adaptations the body makes to a high salt diet. It seems renin and aldosterone are reduced, so overall is blood volume really increased? The blood pressure changes that are talked about in the article above dont seem that impressive to me....just wondering if anyone has investigated this further than me...

I dont know where levine manages to find these people with small hearts. I know countless Potsies and not one has a small heart (and many if them were superfit before suddenly getting pots ). His study requires people embarking on an exercise regime- can you imagine the very ill dys patients agreeing to this? No, so his sample is biased. It IS interesting though that blood vol can be increased so much by exercise but this has been known for a long time. The yellow wiggle ( Greg Paige) from the childrens entertainment group was found to be "very very fit" by exercise phyiologists but he still had OI. Do some people have small hearts and therefore pots due to a lack of phyical training? probably, but i imagine this population is small.

Julie, i see where youre heading with that argument. My pulse pressure is ok when lying (at keast i think, i cant get it often because its too low). My pulse pressure when standing is terrible (15).

Thanks for your responses guys. I know that most peoples bp drops when asleep but what im talking about is VERY low BP. For example if i dont take florinef, my BP goes so low that i develop symptoms of hypoxia (my legs start kicking). I also get freezing limbs and pins an needles and my heart periodically goes into tachy. With the florinef, none of this happens. Im thinking that during the day, my symp nervous system is going into overdrive trying to correct for the low blood volume ( i have lots of symptoms of symp ecxcess) and as a result my bp is normalish (except when standing). So at night when my symp nerv syst activity is lowered, it seems sensible tht there would be a big drop in bp (rather than a small one).

Since direct blood volume measurement is not available to me, I am looking for a potential surrogate marker for it. Any ideas? I thought perhaps low nocturnal recumbent BP might indicate overall low blood volume in that the sympathetic nervous system whilst asleep is depressed (ie so no chance of a compensatory symp effect if blood vol is low). What do you think?

Well arent you guys full of interesting info- thanks!

See http://www.immed.org/illness/autoimmune_illness_research.html

That's a better idea!

I know i prob should be raising the bed head but havent done because i dont want to spend all night sliding down. Didnt realise salt lowered aldosterone levels ( though it does seem theoretically sensible). Is there any point in salt loading long term if the body just reduces aldosterone to compensate?

I completely agree with you issie. The florinef issue is a tricky one with me. Salt loading just doesnt cut it to increase my blood volume-florinef is the only thing that does anything. I feel like i have to decide between neural damage from low blood pressure at night and adrenal atrophy. At the moment im trying to keep the forinef dose as low as possible but they are such tiny tablets its hard to consistently chop them up! Thanks for the Iron tips btw. Is licorice root extract dodgy in any way? i havent tried that yet.

Hi Julie, i agree that its irritating that the primary course of action is to cover up symptoms. They body decides it will compensate for a disease process by say increasing hr and we just go ahead and block that. In the new year im going to try low dose naltrexone and hope that this helps the body fix itself. Ive also started yoga. At the mo i cant really do it and spend most my time in corpse position ; ) Re blood work, ive noticed my iron levels are low normal. Not sure how to get this back up apart from iron supplements.