bombsh3ll

37 minutes ago, DizzyGirls said:

When doctors try to lower it, she gets really lightheaded.

That's interesting. I am also not a believer in medication being prescribed just to make a patient's numbers look better, in this case to lower HR. Tachycardia is a physiological response to a diminished stroke volume, so suppressing that can be unhelpful and make matters worse. What did your daughter take to lower HR? I think beta blockers are the worst for this as they reduce the strength of contraction of the heart, further lowering cardiac output. 

For me HR doesn't really seem to correlate with how I feel - I am lightheaded whether it is high, low or normal. I did once try midodrine (although my BP is not low, thought it was worth ago to help any pooling) and that reflexively dropped my HR below 40 - that really did feel awful!

B x

Yep I have exactly the same, we sound v similar! Normal numbers but still lightheaded (presyncope NOT dizziness/vertigo) all the time except when lying down/reclined. 

I would really like to hear what your specialist thinks/suggests for this. 

Cerebral vasoconstriction is a possibility (I wish we could get doppler/spect scans for this in the UK) but I also suspect low cardiac output. This cannot be calculated from HR or BP, stroke volume also needs to be known. CO increases by about 2 litres when we lie down. The brain gets about 15% of CO so I think my brain is simply getting 15% of a too low amount. 

Also, low cardiac output increases sympathetic tone - which can constrict cerebral vessels!

Best wishes with your appointment,

B x

10 hours ago, Mikayla said:

They do Skype consultations if that is feasible for you. In case it is, this is their website:  https://www.activehealthclinic.com.au/

Wow that is really helpful thanks, I've just sent them an enquiry about this. I have been trying to exercise by myself since becoming unwell but would really like some professional guidance from somebody familiar with orthostatic problems. 

B x

I wear a HR watch (Polar, with a chest strap - I haven't found wrist monitors accurate) most of the time, but when I am "exercising" (or doing anything really) I go more by how I feel than my HR. 

I don't always find that my HR/BP correlate very well with how I feel, for example I can be sitting with perfect numbers and be extremely lightheaded. When I get on my treadmill to walk (speed of 5km/hour), my HR will be about 100-110 but walking is much harder for me because it is upright than pedaling my recumbent bike, when my HR can be up to 140 but because I am sat leaning back it is "good" tachycardia ie what a healthy person exercising would experience and I find that a lot easier and more sustainable for longer. 

So my vote would be go with how you feel and if your body is screaming stop but your HR monitor thinks everything is dandy then listen to your body primarily! On the other hand just to be safe you could set a maximum HR that you feel comfortable with or your doctor if you have a decent one advises or look at age based charts etc and slow down/stop if you hit that limit. 

One of my older Polars used to beep if my HR went above about 122 - I had to climb steps to get into my son's school for parents evening once and it went off the entire time I was speaking to the teacher!

B x

I have normal to high BP and a diagnosis of H-EDS so it is possible that upright venous pooling is a contributor to my OI. I don't buy that it is the sole cause as poor collagen is lifelong whereas POTS onset for me was instantaneous, however I cannot dismiss the venous pooling theory outright. 

I have long wished I could find something that would selectively work to constrict just veins, unlike midodrine which sent my BP rocketing and reflexively decreased my heart rate below 40. I wear the class 2 tights, but they are not highly effective. 

Well today I came across MPFF.

 I figured I'd give it a go! The brand I bought is called Venalex but it is sold under different names around the world. 

8 hours ago, Mikayla said:

I usually can manage a 15minute walk

That is great, I would definitely continue with that, as many times a day as you can! I can sometimes manage 10-15 min on my treadmill in the evenings as that is when I am at my best after fluid and electrolyte loading all day. I am not able to do it earlier in the day though. 

I also bought a recumbent exercise bike and use that for up to 30 mins most evenings to maintain muscle strength in my legs and heart. It hasn't helped me but it may have stopped me from becoming worse than I am. 

It is great that you have access to an exercise physiologist familiar with POTS - there is nothing like that in the UK, you are basically on your own. Sorry it is a long wait though. I and am sure many others would love to hear what they have you doing when you get there, please do post about it!

B x

11 hours ago, isa5 said:

bombsh3ll, I was worried about the water restriction but it's actually been fine so far. I take the DDAVP at night and then don't drink fluids overnight (maybe a little if I wake up thirsty, but not a ton), then have water as usual during the day. I am less thirsty than before and need to use the loo less frequently, but all seems in order. Docs are checking sodium at next visit, but nothing too aggressive in terms of supervision.

That's really good to know thanks! It is a med I may like to revisit if I could get it prescribed and monitored properly. When I did try it, I wasn't any more able to be upright unfortunately but I did get a better night's sleep without having to pee, and felt less dehydrated in the mornings.

B x

11 hours ago, Mikayla said:

Also, if it goes untreated is it likely to get worse? Does it generally get worse or does it go away by itself sometimes?

I feel that in my case not having any effective treatment has made things worse over the 4 years I have been unwell due to deconditioning. If you are able to get treatment that lets you be on your feet and active, that in turn helps lessen symptoms in the long run. If you are very symptomatic and do not have any help, you lose muscle tone, blood volume and heart muscle mass. I have tried a number of treatments that either didn't work or lost effect after a while, but for me there was a long delay in accessing any treatment at all by which time I had already lost a lot of ground (I was not an athlete but was physically fit before sudden onset.)

My advice is keep pushing for appointments and treatment and keep moving as much as you are able.

B x

When I first became ill with POTS I did a lot of reading online and convinced myself I had gastroparesis as well. I've had lifelong reflux and slow motility for which I take medication long before POTS, probably also due to EDS, but time has shown that in my case it is likely to be simply that the nausea & dislike of eating that struck at the same time is related to cerebral hypoperfusion, weight loss was due to the hyperadrenergic state & loss of muscle tone due to suddenly becoming chairbound, & worsened motility due to no longer being active, rather than anything new or worse going on with my GI tract. 

B x

5 hours ago, isa5 said:

14 hours ago, bombsh3ll said:

 

I take 0.1 mg once a day, the tablets--the smallest dose, I think. It's worked very well.

Thanks for the reply, do you take it at night? Do you have to restrict your fluid intake on it - i would struggle with that - and get regular blood tests to check your sodium isn't dropping?

B x

2 hours ago, jklass44 said:

Sitting or laying down it's anywhere between 40-60, which honestly feels very weird. I find I get a lot more palpitations with my heart rate this low, however, this is more of a normal person resting heart rate anyway so maybe I'm just not used to that aspect? Standing up has been very hit or miss. Sometimes it is normal, other times it will still rise dramatically (maybe only being 4 weeks in has something to do with it). The main symptom my cardiologist warned me about was the visual changes some people experience, but I haven't experienced anything like that. My dizziness/lightheadedness seems to be decreasing,

Thanks yes my normal resting HR is about that although most of today its been 70-80's. My HR is very reactive to movement. I also get a lot of ectopic beats however maybe we just feel them more with a slow HR and not so much during tachycardia.

It is really encouraging that the lightheadedness is lessening for you, if I could get rid of that I'd be champion!

I would definitely break the smallest dose into a quarter and make sure my family are around when I take it. I am currently going through the disability process and need to be able to reasonably show that I've tried everything but equally if a medicine is contraindicated then that's OK. I just don't want to miss the chance that something might have helped and I didn't try it. 

B x

10 minutes ago, peachychou123 said:

I have heard midodrine can cause supine hypertension, so that's why as much as I want to try it, I will need to consult with my doctor first. I guess he may suggest taking a BB in addition. He is more concerned with getting my HR down. 

Midodrine is short acting so it is out of your system after about 4hrs, just don't take it close to bedtime. Oh and it caused my heart rate to fall below 40 - it commonly lowers HR via vagal reflex. It wasn't what I needed but it may work our great for you!

B x

Hi, looking for peoples' experiences with Ivabradine, all info welcome good or bad but particularly anyone whose resting HR is not typically high. My resting HR can be in the 50-60's seated particularly in colder temps and/or with legs elevated (yet still feel lightheaded and rubbish - BP normal too). 

I have heard great things about this med but have opted against it in the past due to concerns about bradycardia. If you have taken it, what was your typical resting HR prior to and after taking it, and was it beneficial for symptoms? If it caused any negative effects what were they? 

Also what did it help with specifically? My main issue is severe constant lightheadedness and inability to stand due to presyncope. Relief from the chest pain and sense of high adrenaline/non psychogenic anxiety would also be good. I don't tolerate beta blockers. I am not concerned about tachycardia per se - my heart rate has only ever been checked because I feel unwell, and I wouldn't be bothered simply about a fast HR on standing if I wasn't presyncopal. 

Many thanks,

B x

14 hours ago, isa5 said:

I couldn't manage the side effects from Florinef and am now taking a low dose of DDAVP, which has been very helpful.

Me neither, what dose of DDAVP do you take?

B x

I have POTS and since then have been diagnosed with HEDS after putting together a collection of previous medical/surgical issues & features associated with poor collagen over my lifetime.

I saw a geneticist for the HEDS diagnosis and she definitely felt that dysautonomia was one of the features of EDS. 

The thing is whilst I understand that EDS can cause lax blood vessels and pooling (my dad has really bad varicose veins and an aortic aneurism), I am not sure this fully explains the orthostatic intolerance in my case as surely veins would gradually stretch out over time, whereas my POTS onset was extremely abrupt at age 34 & was triggered by a forceful Valsalva. 

I am also not sure how EDS could cause nerve damage (unless nerves are being stretched/pulled out of place by general tissue laxity). Also I have no other features of nerve damage such as weakness, numbness or neuropathic pain. 

B x

18 hours ago, JuliettOscar said:

"Salt, water & exercise and see me in 6 months". No thank you. 

Quite right! 

I wholeheartedly agree with the advice to get on the waiting list for a specialist in dysautonomia. Yes there is a small chance you might strike lucky with a doctor in your local area but a much greater chance that you will get either poor care, no care, or treatment that harms you (including being dismissed and ridiculed not just the wrong meds).

I am not entirely sure how the insurance system works in the US, but perhaps you could get on a waiting list now and still try local doctors in the meantime. If you did get lucky you could always cancel the specialist appointment but if not then you know you have something in the pipeline. 

I live in the UK and I fought for 3 years to get a diagnosis. I was diagnosed with POTS but even now after more than 4 years have no treatment other than those I have been able to source myself (I am a GP so have had better resources for obtaining medication than most). 

At this point I too am looking at travelling to see one of the US specialists.

Best wishes whatever you decide on. 

B x

So far the only thing that ever helped me for the lightheadedness was licorice root capsules. They were miraculously effective for about a year but then gradually stopped working. I've never found anything else (other than lying down!) which helps but am eternally on the lookout. 

One thing that massively WORSENED the lightheadedness for me though was beta blockers (these reduce cardiac output and cerebral blood flow, even in healthy people). 

Heart rate control isn't appropriate for me as my resting heart rate awake can be around 50bpm, but if you do need or want a med to slow down your HR, it may be worth looking into Ivabradine as an alternative to the beta blocker as this doesn't reduce BP or cardiac output. 

B x

On 10/23/2018 at 8:36 PM, Andy T said:

Interesting reading all you guys posts on IV fluids. Over here in the UK it seems much more difficult to get IV for POTS.

I’ve recently started twice weekly (for around a month now) and get my central line in two days. Anybody in the UK had trouble/success accessing IV as a treatment option? 

 

How on earth and where did you get a central line agreed in the UK? NHS or private I would be really grateful if you could share details.

B x

On 10/23/2018 at 11:32 PM, yogini said:

I think the POTS flare up causes urination. Your body is in fight or flight mode. A normal reaction in that state is to have to go to the bathroom.

Exactly - this is consistent with what happens in phaeochromocytoma (another condition of excess catecholamines) - reduced blood volume and often polyuria. 

B x

Is the objective not to get the catecholamines done at the same time as your TTT so that levels can be drawn supine and upright? That is what I am waiting to get done. 

Regarding meds affecting results, antihistamines will not, but beta blockers used chronically tend to lead to elevated catecholamines (as the body tries to overcome the receptor blockade). 

I am not sure how long you would need to be off the beta blocker for your levels to revert back to your own personal "normal", but maybe this is something you could search relevant research articles on online if you want the test to be the most accurate reflection of your physiology. I suspect it may be longer than the period for the drug to simply be out of your body. 

Best wishes,

B x

I have three stools placed around my kitchen as I'm not able to do anything standing. Chopping veggies in advance and freezing meals also helps like others have said (we need a bigger freezer!) and I only cook hot food when there's another adult in the house. 

I also have to remind my family not to make demands or block my path when I'm moving between seats. 

I tend to be most able in the evenings so that's when I do things where possible. 

B x

20 hours ago, Clb75 said:

I think I’ll call my doc and see if he’ll give me a prn of clonidine

Regarding clonidine, this may not be the best option to counter undesirable effects of northera as it only blocks your body from releasing its own noradrenaline - it will no do anything against exogenously supplied NA. A beta blocker or benzodiazepine would probably be better but see what your doctor suggests.

B x

Hi Andy I get a lot of these too. Harmless but uncomfortable and worrying at the time when you're getting them frequently. 

I find that keeping my potassium in the upper end of normal range helps ie over 4 and preferably over 4.5, also supplementing magnesium helps. 

I don't tolerate beta blockers due to resting bradycardia and chronic presyncope (beta blockers decrease cardiac output and cerebral blood flow even in healthy people) however many people can tolerate these at least in small doses and find them helpful. 

B x

13 hours ago, Clb75 said:

I just left my cardiologist who wants me to try northera, mainly because I’m housebound at this point. I’m scared to try it because I’m med sensitive like a lot of pots patients. The last two meds I’ve tried have sent me to the ER. I’ve read all the past posts from people on Northera but wanted to get some feedback to see what people think of it currently. 

I’m also confused about how an increase in norepinephrine from this drug will interact with the sympathetic system. Won’t it make BP and tachycardia worse? 

Also, to anyone who took or takes it, were you able to take it with Florinef? 

Thanks for any input you all can offer!

Same question here from me! I am currently waiting to have my catecholamine levels checked and may then depending on results get the opportunity to try this med if they do not rise when upright. As I am only able to be upright a couple of minutes, I don't expect a rise to be detected, so may be in the running for this unless levels or BP are super high to begin with (which they may well be after a 400 mile trip to the hospital and no sleep!)

I also have symptoms suggestive of sympathetic excess so am not sure if it would make POTS worse in this regard. There are some studies coming out in relation to Northera in POTS patients, one showed 27% of POTS patients reported improved quality of life. 

I would definitely try it if offered. I am of the attitude that I don't want to leave any potential treatment untried when living with such a miserable condition. Given that it is typically dosed 3 times daily the duration of action is short should you encounter any side effects, and these would also probably be able to be dealt with by having a beta blocker and/or benzodiazepine on hand. If you don't try something you will never know if it just might have been the thing that got you upright again. I had a year pretty much on my feet (although never able to stand in one place) on licorice root, which I wouldn't have done had I not tried it. I have also tried many other drugs and whilst not helpful and sometimes downright unpleasant, am glad I've crossed them off. 

If I am really nervous about trying a drug I go and sit in the waiting room of the local A&E department near the desk (I don't check in) to take my first dose, with my medic alert bracelet on (ID & condition) & a note on me about the drug I have taken, dose and time. That way if I end up unconscious or with a dangerous reaction I am already in the right place. That has never happened but it allows me to feel safer when trying something the first time.

I also never start with a full dose of a drug but break the lowest strength tablet into quarters and start with that. If it is capsules you can often take them apart and remove the desired amount (check with a pharmacist as some long acting/slow release meds are not suitable for this).

Good luck if you do decide to try it. Please let us know how you get on. 

B x

On 10/13/2018 at 9:02 PM, Robertlg1967 said:

Only problem is that I don’t have insurance and this medicine is depleting what was supposed to be my retirement income at a rapid pace. Has anyone else found this medicine to be very helpful but cost prohibitive?

It's great you found something that helps but I'm sorry it is so expensive. I live in the UK so I am not entirely sure about the situation re drug funding in your country however I have come across other patients online who have been able to access Northera under some kind of compassionate subsidized schemes. 

It may be worth contacting the manufacturer of Northera and asking if they currently have any such scheme that you may be eligible for. It is in their interest to get their drug out there because the more its effectiveness is shown the more doctors will prescribe it. 

Good luck,

B x