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Everything posted by bombsh3ll

  1. I am interested in that theory because I have undetectable renin and aldosterone, but have never been able to get AngII measured. I did try losartan though (when my BP was high enough to tolerate it as I was on licorice root) and unfortunately it didn't help me. I have never benefited from salt loading, although the licorice root did help for a while. Technically I am not hyperadrenergic as my catecholamines are in normal range for both supine and standing, although my BP goes up, not down when I stand, & I am very vasoconstricted like the low flow types. B xxx
  2. No I don't think it was recent. The article was written more in a way of explaining why fainting is actually a defense mechanism & how preventing it can be dangerous, rather than sensational scaremongering, it just worried me though. B xxx
  3. Do you need an antidepressant in its own right? If not there are other types of med that can help slow the bowels down that may be preferable to psychoactive medication. B xxx
  4. How do you get around the RAAS suppression caused by high salt ingestion, when this system is likely already not working properly to begin with? B xxx
  5. I have decided that after a couple of vein scans this month, I am going to go back on a combined pill. (For cycle suppression & avoidance of hormonal fluctuations, not contraception). I previously used the Nuva ring which completely stopped bleeding and hormonal ups and downs, but this has a higher clot risk than others (probably not a concern if you are mobile, but needs considering if you are not), and also doesn't stimulate the renin-aldosterone system as much as oral estrogen. If you are female, have POTS or other dysautonomia and use hormonal contraception, I would love to h
  6. You definitely need to see someone more knowledgeable. Florinef may be worth trying if you have it and your BP is low. It can cause/worsen palpitations though (but only because it drops potassium, if this is monitored and supplemented if needed, it should not affect your palpitations). Beta blockers are often an automatic response to seeing a patient with a high heart rate, but are somewhat counterintuitive as they lower cardiac output, blood volume and blood pressure. If you can, I would try and find an autonomic specialist to take over your care in this respect. Also, if the
  7. For this principle to work the whole body is supposed to be on an incline, not just the head unfortunately. Having said that, I personally did not find tilting my bed helpful, so no longer have it that way. At least I am more comfortable in bed now and my brain is getting the best perfusion it can at least some of the time. Also I read a story about a man with dysautonomia who died after he passed out in a plane toilet, as he got stuck in a semi-upright position with no room to fall flat & restore blood flow to the brain. I had been quite aggressive in my tilt angle, & did worr
  8. I used to salt load, but have switched to drinking 2 litres of oral rehydration solution per day. It is less unpleasant (actually quite nice with a bit of flavour added) and doesn't contain the level of salt I was consuming before. My BP goes up on standing but blood noradrenaline levels were normal. I never noticed any benefit from salt but maybe ever so slightly from the ORS, which is designed for that purpose. I also have low renin & aldosterone - mine were undetectable - but taking a lot of salt suppresses these further. Additionally, despite it being a common recommendation, ther
  9. Irritatingly, completely normal! B xxx
  10. We'll be waiting!! Meantime thanks for the suggestions above. I stopped drinking diet coke when POTS hit because I became intolerant of caffeine, but I may just try one. I also love my ice pack, and for a treat those Cool & Soothe strips that you can stick on your forehead or back of neck. Also currently trying to get a better pillow at the moment as the lovely softie I got at Christmas is now as flat as a pancake. I find using my neck pillow (like this one but mine is an electric blue zebra print) https://www.completecareshop.co.uk/orthopaedic-aids/neck-cushions/neck-cush
  11. Headaches have been a pretty constant companion for me also since POTS I am glad you found something that works. I have to say I have not tried aspirin, as it has a bit of a bad rap, but I may just do so. Codeine was also effective for me, but now I am off licorice root and have low/normal BP, I can no longer tolerate it as I have to lie flat if I take it. Lying down usually relieves my headache anyway so I may as well just lie down & skip the constipation B xxx
  12. This made me smile because my phone is actually 11 years old, and I call it the smartest phone in the world because it does everything I want it to and nothing I don't, all for £10 or less a month which is optional to pay. It is cute, pink, shiny & still has buttons! My husband says I need to move on because they have stopped making these & one day I will be lost if it breaks, but I am quite sure it will see me out & have no plans to replace it! B xxx
  13. I am having a CT venogram of the head and neck veins later this month. This is partly because I am considering craniocervical fusion for cranial settling (a form of craniocervical instability) which tends to occur in EDS in the absence of trauma and has been associated with dysautonomia (and some lucky people but by no means all, improved or cured with this surgery), and the venogram is a prerequisite for surgery, which I am as yet undecided on. The other reason (and the one I am most excited about as it may avoid surgery if it turns anything up) is because venous outflow obstruction fro
  14. Thanks for sharing that, I will def check out the video! I was in great shape when POTS hit, but I know I could eat better. Ironically my diet was pretty good before I became ill as I used to love healthy cooking, but that is all gone now & I also don't have much appetite. I do love my nutribullet though! B xxx
  15. No I've got tons of cortisol, I just don't produce aldosterone. I do not think it is an adrenal problem though, as my renin is non existent too, which the kidneys are responsible for producing. Renin stimulates the production of aldosterone via a complex series of interactions, but basically I have hyporeninemic hypoaldosteronism. Here is the study on albumin. https://clinicaltrials.gov/ct2/show/NCT03365414 Looks like they have yet to start it though, that is frustrating! I wish I could be one of their patients! Both fludrocortisone and desmopressin are used off label for POTS, w
  16. That's really interesting, I will look into accessing that here but it is hard enough to get saline! B xxx
  17. Unfortunately there is nothing I can take for this as I had horrible side effects with fludrocortisone, which is the only synthetic replacement for aldosterone. I cannot take desmopressin because I am already prone to low sodium due to the mineralocorticoid deficiency. I drink lots of electrolyte mix, which may help marginally, & am always drinking water too. For about a year I had great benefits from licorice root, which basically tricks your own cortisol into acting like aldosterone, but the effects wore off over time. I have tried IV fluid but lose it just as quickly as I los
  18. I hope your hospital stay is short too! My MRI with contrast of brain and whole spine was negative, but CSF leak REALLY fits with my symptoms and onset triggered by forceful valsalva. I decided not to have a LP for now, but am seeing a specialist in disorders of CSF and venous cerebral outflow next month & having a CT head and neck venogram to check for occlusions, so I will also discuss it with him. B xxx
  19. Good luck, please do let us know how you fare with the surgery! I too investigated CSF leaks and was disappointed not to have a treatable cause. Orthostatic headaches really are rotten! B xxx
  20. There are specific meds that can help with this such as hyoscine, loperamide, amitriptyline, codeine etc that you could ask your doctor about if it would help you keep a valuable med. I too am severely hypovolaemic (from polyuria though not diarrhoea) and also have low sleeping HR. B xxx
  21. Hi Sonya, I haven't had that treatment and have not had a DEXA scan, but osteoporosis is something that concerns me too due to immobility. I have started taking extra vit D and make sure I get adequate dietary calcium. I think if you have significant dysautonomia, that would explain your osteoporosis, as lack of weight bearing exercise is a known risk factor. Hope your infusions help. B xxx
  22. I'm sure you'd rather be well, but I have to say from your photo you really don't look 62! I don't look my age either, but that is because I am indoors all the time! I am glad the exercise is working for you. What did you find the best exercise for non-upright folks? I have a recumbent bike but always interested in other ideas. B xxx
  23. Hi Elli, The GI and eye side effects you mention can probably be mitigated with other medications/eye drops. I would speak to your doctor about options for this since it was helpful for your POTS. Mestinon is something I am thinking of trying again. I tried it briefly in the past but it only helped with constipation, & I have other laxatives for that. When you say it helped your POTS, do you mean it helped you stand & function or just the numbers? I hope you find a way to make it work. B xx
  24. I tried magnesium citrate for frequent ectopics - it didn't help for that but I kept it on as it is a good laxative. I do find that potassium citrate powder by now foods helps slightly reduce mine. This is worth a try provided your potassium levels are normal. B xxx
  25. Just wanted to sympathize and say that I too get BP raise with narrowing pulse pressure on standing. I have not had a shower in 5 years (I have baths now), and not too hot. That pattern is typical of low blood volume and low stroke volume. The sympathetic nervous system is raising the BP to try and compensate for this. As yet I have not found a helpful treatment. I have been trying IV saline but just pee it all straight out again as I am mineralocorticoid deficient. Sorry you guys are going through this too. Hugs, B xxx
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