bombsh3ll

1 hour ago, Delta said:

@bombsh3ll, that story is ghastly and enough to make anyone with POTS/dys not want to step foot on a plane!  Do you know if this happened any time recently?

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

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

6 hours ago, haugr said:

You pretty much have to salt supplement if your symptoms are due to hypovolemia,

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

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 hear what brand, & what is good/bad about it, particularly in relation to orthostatic intolerance & helping retain fluid.

I know there have been past threads on this but I want to hear current experiences, particularly type of pill/patch/ring and how you rate it and why.

Thanks!

B xxx 

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 IC is preventing you from drinking the amount of fluid you need, have you seen a urogynaecologist? We definitely need our fluid!

I can understand the sugary Gatorade being unsuitable for high volume drinking - I use Trioral which I get shipped from the US, & find it the best in terms of both cost and content. 

I hope you manage to find some relief.

B xxx

19 hours ago, Conrad_hemsley said:

My question is, would this also work if the bed is raised only from the middle upwards, I.e. when you have an electrically adjustable bed?

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 worry about this if I passed out in my sleep & couldn't get flat, which I know is probably silly but also no longer a concern.

I would say just find the position that feels best for you (try each for a few weeks as any volume retaining effects can take a while to show, according to studies using this method).

19 hours ago, Delta said:

I now always sleep with the *foot* of the bed elevated, and I suspect this helps move blood to my brain via sheer gravity. 

Whilst that is probably lovely at the time, bear in mind that all the astronaut studies where volume depletion and OI are deliberately induced by antigravity positioning had patients on head down tilt. This was for periods of days/weeks at a time, not just overnight, but these were healthy people to begin with not people who already have POTS & probably lose more volume in a shorter timespan.

B xxx

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, there is no evidence that salt loading produces lasting increases in blood volume - it is just peed out. It says in analysis of one of Dr Levine's papers that whilst they can't exclude some of the benefit in his study participants being due to salt loading, POTS patients are often advised to do this but in practice it seldom translates to any clinical benefit. 

Generally, if your BP is not high in any position, if salt helps you then it should be OK, as long as your BP is checked regularly. There is some evidence that salt ingestion raises BP via vasoconstriction/sympathetic activity rather than volume expansion. 

B xxx

On 6/29/2019 at 3:48 AM, yogini said:

What is your heart rate and blood pressure when you get the headaches?

Irritatingly, completely normal!

B xxx

On 6/28/2019 at 4:19 PM, jklass44 said:

I’m seeing Dr. Raj in a couple of weeks and am hoping he will have some other suggestions for me. I’ll be sure to share them if he does!!

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-cushion-view-large?gclid=EAIaIQobChMIqYOIwb6W4wIViLbtCh38mgCkEAQYAiABEgLaZPD_BwE helpful when sitting on the couch.

B xxx

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

On 6/28/2019 at 10:07 PM, Hippopotsamus said:

2 weeks ago I switched from a smartphone to an old school "dumb phone" that just calls and texts, so no internet, email, or small screen scrolling. The quality of my sleep has improved dramatically and I would say that my anxiety has decreased by half, and this is the only thing I have changed. I wanted to pass this along in case it could help anyone else. 

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

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 from the brain has been shown to cause raised intracranial pressure, CSF flow abnormalities, reduced cerebral perfusion, headaches, cognitive impairment and sympathetic hyperactivity. Sound familiar anyone? This is non invasive but can lead to further testing and treatment if positive, with stenting of occluded vessels (or anticoagulation if there is a thrombosis). This has resulted in relief for many people, and there is a good youtube talk by Dr Kenneth Liu on the subject.

My illness was triggered by a forceful valsalva, and I have from the beginning expressed concern about my intracranial pressure - is it high, is it low, sure doesn't feel normal, & the initial insult would have caused massive back pressure at the time. 

So I was wondering has anybody else on here had a CT or MRI venogram of the head and neck veins? Did it show anything or lead to any treatment? If anyone has had this, please share!

B xxx

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

38 minutes ago, Elli said:

So you have low cortisol?

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!

42 minutes ago, Elli said:

I will not get antidiuretics without indication

Both fludrocortisone and desmopressin are used off label for POTS, without urine measurements. Some people find one or both really helpful.

B xxx

1 hour ago, Pistol said:

Only once we used Lactated Ringers solution instead of saline did the issue improve. I pee a whole lot - which is why oral fluids do nothing for me. But the LR does not cause me to urinate, I actually pee much LESS with the infusions. LR has a certain combination of electrolytes which keeps the fluid within the vascular System, sort of like a volume expander. This is the reason they use LR during surgery rather than NSS.

That's really interesting, I will look into accessing that here but it is hard enough to get saline!

B xxx

1 hour ago, Elli said:

This is interesting. What do you do against polyuria? I think it's a huge problem re. POTS.

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 lose oral fluid, so it is not worth a central line for me. 

Still looking for the answer! There is a study going on in Canada just now into IV albumin instead of saline which has a much longer volume expanding effect, which I would really like to try if this shows positive results & I can get someone to listen.

What is odd though is that all my life I've been a drink-a-lot, pee-a-lot person but never had POTS until five years ago (sudden onset after a forceful Valsalva).

Good luck with the nephrologist. They may be able to look into antidiuretic meds for you like the ones above if you haven't already tried them, although normally it would be an endocrinologist for that. 

B xxx 

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

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

3 hours ago, Elli said:

The diarrhea wasn't funny though, so I decreased the dosage to the already mentioned 5-5-5. I already have low body water, so losing more via diarrhea might be problematic (besides not getting the nutrients you need).

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

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

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

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

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

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

Hi Hannah,

Sorry you find yourself here. Yes, syncope is typically brief, once you are flat the blood flow to your head is restored. Also it can be hard to tell yourself unless someone else witnesses it.

Have you managed to get any treatment?

B xxx