What helps your lightheadedness the most?

[peachychou123]

I was mostly functional on low dose beta blockers for 4 years, but then I got a virus during the first week of October which seems to have exacerbated my POTS symptoms and I feel like I'm 19 all over again (not in the good way!)

I've tried hydrating, taking supplements, salt loading, sugar and carbs are a trigger for me so I need to try to avoid them, but I don't feel much difference. I am saving for an exercise bike to strengthen my leg muscles. I also have a lot of brain fog now and it sets in much earlier in the day. I don't think I have vertigo as the walls are not spinning. But I do have that weird 'walking on a bouncy castle' feeling combined with that 'trapdoor' pre-syncope feeling, which is scary.

My doctors are not very POTS literate and I know I will have to be the one to research and suggest things to them. I am interested in trying midodrine as I've heard a lot of people's symptoms improved with this med, but I've also seen some users say they built up a tolerance to it. But at this point, I'm willing to give it a shot.

I was wondering what you found helped you guys most with feelings of lightheadedness and presyncope, be it meds, exercises, diet changes, lifestyle changes etc. I can deal with most of my other symptoms, but the lightheadedness always bothers me and heightens my fight or flight response. Which in turn, makes me hyperventilate and therefore more dizzy! 

 

[StayAtHomeMom]

I use dramimine. The motion sickness meds. Half an over the counter pill and it helps my dizzy spells. Thankfully it has been a while since I have had to take it. 

[bombsh3ll]

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

 

[peachychou123]

Thank you guys. I'm going to look into all the meds you recommended. Appreciate it.

[isa5]

Totally recommend midodrine. I am several months in to a substantial relapse and it's been a lifesaver. (Like you, I'd been controlled for years on a low dose beta blocker only. Midodrine made it so I could stand up again, though I run through it really quickly and have to be very rigid about taking it every 3 1/2h or so). While I had never thought I needed volume expansion--my diagnosis was hyperPOTS, hence the beta blocker--adding that has also made a substantial difference, especially in the summer heat. I couldn't manage the side effects from Florinef and am now taking a low dose of DDAVP, which has been very helpful. The best part is these drugs have made it so I can manage to get benefit from things I want to do, like exercise to build up leg muscles. (If you can find a cheap gym nearby, try the recumbent bike--this has enabled me to do more exercise and get more strength without tripping the postural wires). I'm also doing the standard salt, small meals, hydrating that are common recs. Good luck to you!

[Pistol]

@isa5 - you just summed up what meds are supposed to do for dysautonomia patients: they will never CURE us, but they will make us able to do what we need to do OURSELVES to improve. If the meds are working then we will be able to exercise, tolerate liquids and recondition so we can resume a more normal life. If we think a medicine will make us better overnight … well - then we will have a rude awakening. I am very happy you posted this because many of us - myself included - do ( or have in the past ) relied on meds to be the cure-all. 

[bombsh3ll]

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

[yogini]

Have you measured your blood pressure and heart rate?  Lightheadedness usually comes from low BP.   If you were taking salt and water before you might need more now (or a medicine which increases your BP like midodrine as you mention).  Compressions stockings can also be helpful

[peachychou123]

3 hours ago, yogini said:

Have you measured your blood pressure and heart rate?  Lightheadedness usually comes from low BP.   If you were taking salt and water before you might need more now (or a medicine which increases your BP like midodrine as you mention).  Compressions stockings can also be helpful

My heart rate is usually around 80 supine/120 standing (this rises to 100 supine and 140+ if I've eaten carbs that day lol) My blood pressure is weird to be honest. It fluctuates. 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. 

[peachychou123]

18 hours ago, isa5 said:

Totally recommend midodrine. I am several months in to a substantial relapse and it's been a lifesaver. (Like you, I'd been controlled for years on a low dose beta blocker only. Midodrine made it so I could stand up again, though I run through it really quickly and have to be very rigid about taking it every 3 1/2h or so). While I had never thought I needed volume expansion--my diagnosis was hyperPOTS, hence the beta blocker--adding that has also made a substantial difference, especially in the summer heat. I couldn't manage the side effects from Florinef and am now taking a low dose of DDAVP, which has been very helpful. The best part is these drugs have made it so I can manage to get benefit from things I want to do, like exercise to build up leg muscles. (If you can find a cheap gym nearby, try the recumbent bike--this has enabled me to do more exercise and get more strength without tripping the postural wires). I'm also doing the standard salt, small meals, hydrating that are common recs. Good luck to you!

This is so helpful and encouraging, thank you so much. Before I never really put the emphasis on volume expansion either, my doctor just wanted to stop the surges and adrenaline rushes, and for a few years, the BB's worked for that. But I am also going through a rough patch and have become more symptomatic, so now I need more help and have to explore my options a little more. I've read through the side effects of Florinef and found them quite scary, so Midodrine is certainly looking more appealing at this point. Thanks again!

[bombsh3ll]

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

[peachychou123]

14 minutes ago, bombsh3ll said:

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

Ah I see, thank you for this info, I'm glad Midodrine is short acting as I prefer these kinds of meds, but I'm sorry it didn't work for you. My HR is usually on the higher side but as I said my BP fluctuates at random times, so I guess it's going to be a case of trying to balance my HR and BP without either dipping too low or getting too high. I will speak to my cardiologist in a few weeks and see what he thinks about it. All the best and thanks again!

[yogini]

2 hours ago, peachychou123 said:

My heart rate is usually around 80 supine/120 standing (this rises to 100 supine and 140+ if I've eaten carbs that day lol) My blood pressure is weird to be honest. It fluctuates. 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. 

In POTS the heart beats faster to maintain blood pressure.  Often increasing blood pressure and blood volume will help reduce the heart rate.  Since midodrine only lasts a few hours people usually only take it in the day, so that it is out of the system by the time you are lying down.  There are other medicines and treatments for dysautonomia, though.

[isa5]

9 hours ago, bombsh3ll said:

Me neither, what dose of DDAVP do you take?

B x

I take 0.1 mg once a day, the tablets--the smallest dose, I think. It's worked very well. I would not have commented on this to a doctor before, but I was noticing that I was just running through fluid no matter how much salt I ate--as in, I was joking to my husband that I was a human water filter--to the point where I'd wake up in the middle of the night to have to pee, and then get terrible adrenaline surges from standing up. I still have some problems with adrenaline at night, but the DDAVP makes it more likely that I can sleep 8h at a stretch. I'm grateful my doctor pushed on the volume thing, since I would have sworn I was plenty hydrated, but after two days of DDAVP I felt *noticeably* more . . . reconstituted, if that makes sense.

Peachychou123, I hope that you get some helpful meds soon--good luck with the doctors.

[bombsh3ll]

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

[StayAtHomeMom]

16 hours ago, peachychou123 said:

Ah I see, thank you for this info, I'm glad Midodrine is short acting as I prefer these kinds of meds, but I'm sorry it didn't work for you. My HR is usually on the higher side but as I said my BP fluctuates at random times, so I guess it's going to be a case of trying to balance my HR and BP without either dipping too low or getting too high. I will speak to my cardiologist in a few weeks and see what he thinks about it. All the best and thanks again!

I start with 120/80 BP. I take a beta blocker for the tachycardia and it drops my BP to 110/70. When I take my midodrine it raises it back up to 120/80. I still get break through tachycardia but it is something I can live with as I was never an athlete, so I do physical activity slow and I feel fine most days. 

[isa5]

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. I think at the lower doses it is less likely to cause problems with the water/sodium balance. (I also have a history of UTIs and was worried about consuming less water on that score, but have not noticed any issues, especially as I can drink water during the day, after exercising, etc.) The few times I've gotten a bad headache (apparently one of the signs of the sodium level being off) I've salt loaded (e.g., a can of V-8) and the headache has gone away quickly. 

[bombsh3ll]

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