bombsh3ll

Hi Pre,

I am actually quite envious that you live in Canada as it is now the home of the renowned Dr Satish Raj! Look him up if you haven't already heard of him. 

I don't know how the healthcare service works there re seeing a specialist who isn't local to your area, but being in the same country is a start!

Good luck,

B xxx

On 6/14/2019 at 5:37 AM, “It’s not POTS!” Mom said:

These should not be visible unless you are having an internal ultrasound with the Valsalva maneuver.

Thank you for posting this, it has given me another angle to look into.

My whole illness started with a forceful valsalva. I have often wondered if it caused excessive venous back pressure damaging valves. 

I also have no varicose veins, am small build & have had 3 term pregnancies and also gross ascites which was essentially like a fourth term pregnancy in terms of abdominal girth & pressure. 

My dad has a lot of varicose veins in his legs though. Maybe I have them in my pelvis!

Standard POTS treatments have done nothing for me either. Licorice root (a volume expander) really helped me for a temporary period until it wore off. 

I did previously think about investigating pelvic veins after reading about another case who dramatically improved after these were treated, but it is expensive & the specialist at UCLH was dismissive when I brought it up, saying patients of hers have had this treatment & not improved. 

Your story has convinced me that it is worth a look. 

B xxx

On 6/3/2019 at 5:21 AM, Sarasw said:

I have hyper POTS symptoms and CFS and just found out I have mild hyperaldosteronism which I am getting further tests for.

Is that definitely hyPER and not hyPO aldosteronism?

POTS patients typically have low aldosterone which leads to low blood volume and hence the frequent prescription of fludrocortisone. 

It would be very unusual for someone with high aldosterone to have orthostatic intolerance as this is the opposite scenario. 

BP also tends to be high if aldosterone is excessive.

Have you seen an endocrinologist?

B xxx

Hi, I am not sure if you are looking for something to relieve abdominal/digestive symptoms (which compression will NOT do - it can worsen them), or something to improve orthostatic intolerance/lower body blood pooling, which compression is designed to help.

If it is the latter, and you have trouble with abdominal symptoms already, sticking to leg compression like knee high or thigh high stockings would probably be best. 

I do have bloating, reflux and slow GI motility which are managed with medication & I tolerate waist high compression tights (Sigvaris brand). 

I would not recommend an abdominal binder alone - for me this felt like it was trapping blood down in my legs & aggravated my stomach without the benefits of leg compression.

B xxx

Thanks for the thoughts! I broke one of my 2.5mg pills into quarters yesterday and was going to take a quarter when my bp was 90s/60's sitting. Standing up, which is a struggle to maintain even long enough to take the reading, was 125/87 so I decided not to!

May experiment again another day!

B xxx

I have had problems with high BP in the past whilst I was taking licorice root capsules. These made a phenomenal difference in improving my severe orthostatic intolerance for a while then the volume expanding benefits wore off and my blood pressure was high, so I came off them. 

My lightheadedness/presyncope are just as bad as ever, and my BP is now on the low side of normal. 

I tried Midodrine in the past at varying doses but it worsened my high BP and also didn't help my symptoms so only took it a few times. 

However now my BP is down it seems I have more scope to experiment with treatments that were unsuitable for me before, and I have been interested in trying Midodrine again. 

I know midodrine is particularly helpful for people whose BP drops on standing, but, like many people with POTS, mine doesn't drop, it rises, although nowhere near to the ranges it did when I was hypertensive. 

My catecholamines also tested normal recently (supine and tilted) so I do not appear to have hyperadrenergic POTS. 

Does anyone take Midodrine if your BP goes up rather than down when you stand? How have you found it? Has it improved symptoms, and is your BP still at a safe level when standing?

Many thanks,

B xxx

I've never had any problems with vaccines & my POTS onset had no relationship to any. 

I have however had the flu during POTS, it was the year the UK vaccine didn't cover all strains and had a high failure rate, and it was awful. 

You need to consider the impact of having the actual flu when you have dysautonomia. 

B xxx

On 5/24/2019 at 9:24 PM, Trying said:

Does .05mg or .1mg or .2mg per day of fludrocortisone suppress your own aldosterone production so that you must taper off slowly in order to get your own aldosterone to start working again?

In your experience, what fludrocortisone/florinef dose did you take, if .1mg did not help at all, were you increased to .2mg per day, was potassium also prescribed and what amount, was fludro for POTS or orthostatic hypotension, for how long did you take it, and did it help, if so, what symptoms did it help, did you taper off and was it difficult and how long did it take?

Any dose of florinef can potentially suppress your own aldosterone (but NOT cortisol) production. This has been seen in studies after just a few days, however it is rapidly reversible after short duration. The length of time taken is also important, as is whether the patient was producing adequate aldosterone in the first place before starting the drug. 

As a general rule, if it is causing intolerable side effects or the patient's blood pressure is dangerously high, it may need to be stopped straight away. In the former situation, chances are the patient would not have been on it long enough to need a taper, and in the latter, they would (or should) be closely monitored in the period after stopping. 

If someone has been taking it for more than 3-4 weeks, a gradual taper is advised. Many people have simply stopped abruptly without ill effects, but anecdotally a lot of people struggle with an abrupt stop or too rapid taper.

I would say that if the reason for coming off it is lack of effectiveness (after an appropriate duration/dose has been reached as it can take some time for the benefits to be seen) rather than due to it causing any particular problem, then a slow and gradual taper would be best.  

B xxx

PS, I also recently submitted a question to dinet's newsletter along these lines asking the dysautonomia specialists to clarify the issue of normal peripheral measurements not correlating with cardiac output or cerebral blood flow. I have a medical background and am pretty clear about the physiology, but it would be nice to have a neat explanation when many of us are blown off by doctors because our vitals/blood glucose are normal.

I don't know whether my question will be chosen but if it is you might find it interesting. 

B xxx

Just wanted to chime in and say I too experience severe lightheadedness (although mine is constant just to greater or lesser degrees) with completely normal HR, BP, O2 and blood glucose. 

As mentioned above, it is blood flow to the brain that counts, which cannot be measured peripherally. Also normal heart rate and BP are not proof of a normal cardiac output - your stroke volume could be very low and your arterial resistance high, as I believe is the case with me. 

I would definitely keep trying with your doctors, but I just wanted to let you know your experience can and does happen and there is an explanation for it.

B xxx

On 5/29/2019 at 4:48 AM, Heartbroken said:

the only new thing is now I am on thyroid med.

Hypothyroidism is known to increase catecholamines. Your new medication may well explain the difference.

B xxx

I recently got checked for this as I have splitting orthostatic headaches, EDS and my illness was triggered by a forceful valsalva. I was so hopeful to have a treatable cause, but my MRI with gadolinium was negative. 

I am so glad I excluded it though. Obviously no test is 100% but it has pretty high sensitivity which is good enough for me.

If you think this could be you, I would really encourage seeing a neurologist knowledgeable in CSF leaks. 

B xxx

My resting heart rate reduced in the first couple of years, as I began recumbent cycling. Although I couldn't stand, I probably "exercised" more than the average person. Are you doing anything like this, that you weren't doing before onset?

B xxx

If it is any consolation I get all of the above except for RBBB (which is also usually benign) and am plagued by frequent palpitations. It can be very uncomfortable but my heart is structurally normal & I'm still here nearly 5 years on. 

I'm assuming you've had the basic blood tests, full blood count, electrolytes thyroid etc?

Some people find taking magnesium helpful, I personally didn't for palps but it is a gem for constipation. There is also a supplement called heart calm which some people swear by, but I haven't tried it myself.

B xxx

On 5/22/2019 at 10:55 AM, Pistol said:

she loves full stockings - ll the way up to the hip, like pantyhose. she states they fell better than thigh high, go on easier and don't feel too hot

I wear full tights by Sigvaris, class 2. Machine washable, last ages. I wear them all the time during the day, not just the 30 min I pedal my recumbent bike though. They look just like normal tights.

They can be hard to get on especially when new, but I wear knee high activa stockings underneath, & the tights glide on easily over these.

They are expensive to buy, but they are also the only thing for POTS I have ever been able to get free on NHS prescription here (I can get about £100 worth of compression wear a month on the NHS but not a £3 bag of saline!)

I tried thigh highs but they were useless. They kept rolling down, I don't even know how because I am chairbound. I can't imagine someone walking about without them ending up around their ankles. I have heard of some POTSies using some kind of glue to keep them up, but it doesn't sound worth it to me. 

B xxx

22 hours ago, Tenacity said:

I find that my own attacks decrease if I eat enough food

I just wish food would eat itself since this illness started , but I try. 

What I've realized about some, but not all of these episodes for me, is that they do not directly wake me up from sleep. I wake spontaneously, quite often from various dreams in which I am still healthy, walking around, doing normal things, then after a few seconds become aware that's not the case, & that's when the distress & pounding heart etc kick in. 

I've never been a good sleeper since I was a child though. 

B xxx 

You're welcome. You can only see what your doctor says, all we can do is try things and see if they help.

I hope you are soon feeling better. 

B xxx

I find a small dose of diazepam very helpful, which is in the same family.

I agree with an alarm button if you can get one. How about an assistance dog, is that something you could think about if you are alone a lot?

B xxx

On 5/23/2019 at 11:25 AM, Pistol said:

I would think it is also important to  know if you have EDS just as a reason for your symptoms!!!

I think the jury is still out as to if/how EDS causes dysautonomia, although there certainly seems to be an association. The lax veins theory doesn't seem to fit in my own case although it may be the case in some. 

Since EDS can present in so many different ways and is not always considered as a differential when patients present to various specialists, I do wonder if a significant proportion of people are diagnosed with it after developing dysautonomia, who would otherwise have gone through life without it being recognized had they not got this. I had other minor things that could be ascribed to EDS but would never have seen anyone about it without POTS happening. My dad clearly has features, as does my son, but they are healthy so have never been evaluated. My point is this could significantly bias the association.

B xxx 

I was diagnosed with hypermobile EDS by a geneticist. There is no test currently for this type but you can have genetic testing to exclude the other types. I sent saliva to INVITAE to exclude the vascular type. I can highly recommend them. 

I think a geneticist would be worth seeing to clarify your diagnosis. It doesn't (or hasn't for me) lead to any additional treatment, but can help if for example you need to claim disability, because it is more recognized.

B xxx

1 hour ago, Conrad_hemsley said:

I am indeed very keen on trying out medicine that helps with non-psychogenic anxiety, since that is exactly what I’m feeling (as I’m not mentally anxious for something, it feels physical really).  Which would be examples so that I can mention them to my doc?

I take a small dose of diazepam. It is really helpful. I don't tolerate beta blockers (they lower cardiac output, even in healthy people). Benzodiazepines are somewhat controversial because of concerns over addiction/dependency due to historical abuse by a minority of patients, but that is less of a concern for the chronically ill. 

B xxx

Hi Lily my answer would be yes absolutely! Exercise is the time when we need it most to help push blood back to where it should be, and also to help counter the exercise induced vasodilation. 

There is also a lot of compression gear used by healthy sportspeople/athletes for the same reason, although they probably do not derive as much benefit from it as us.

B xxx

Thanks for sharing your experience, I am glad you have been able to access what sounds like detailed testing. 

Was a blood volume test done? That is something I am really interested in. It is not available where I live in the UK. 

Also did they prescribe/recommend anything in the way of symptom relief?

B xxx

4 hours ago, Conrad_hemsley said:

so gradually increased the intensity over 7 weeks, up to the point where I was able to do multiple exercises with resistance bands, planking, etc. I didn’t feel any relapses or increase in symptoms.

If you had been gradually building up the exercise over 7 weeks without issue, & stopping it hasn't improved things, your recent symptoms may not be related to the exercise. I wouldn't recommend giving up exercise altogether although you may need to take it easier for a while. Even though I haven't found exercise beneficial for improving my POTS, it still has other important benefits such as reducing the risk of blood clots with immobility, and maintaining muscle strength. 

Are you adequately hydrated? Any other symptoms like a fever? GI upset after the chinese food?

I would suggest checking in with your doctor if things don't settle. There are other medications besides beta blockers that can be helpful for the non-psychogenic sense of anxiety and sympathetic hyperactivity that come with POTS.

B xxx

On 5/18/2019 at 5:10 PM, MeganMN said:

Will keep you posted!

Please do! I really hope you find something that can be treated!

B xxx