yogini

I am not familiar with ny of the BP meds you list. POTS patients with  high BP and high HR in POTS often take beta blockers.

I've tried it.  I don't believe it helped my POTS.

Dysautonomia can sometimes cause extreme dizziness which can be similar to inner ear dizziness.  I definitely got the feeling that I was walking on a rowboat and that dizziness was caused by dysautonomia.  I still get it occasionally but I am so used to it by now.

I would't guess as to what is causing your dizziness.  I also think if you had vertigo (which is more like spinning than the ground moving up and down) it usually wouldn't just  happenin the same circumstances - it could happen at any time.   But definitely start with getting the earwax removed and if that doesn't help your doctor can send you for ear testing.

If you correct this issue I wonder if many of your POTS symptoms would improve.

23 hours ago, Delta said:

Thank you for responding!  My dr. prescribed the BB due to tachycardia; sorry I didn't make that clear in my post.  He dx'd me w/POTS following a "Poor Man's TTT"; my resting HR when he examined me was over 100.  But that's not always the case!  Sometimes the resting is normal.  Up and about or standing, less so.  It has gone into the 120s just walking through my house and higher in other circumstances.  He then sent me for the actual TTT, which confirmed.  He probably also figured in the anxiety angle, although he didn't say that, but I understand propranolol can be used for that. 

Re: the BP - when this first started earlier this year, my BPs were normal with some highs.  Then they were more highs than normal for a few weeks.  For the past few weeks, they have been normal the way they used to be before POTS most of the time, with a few highs thrown in.  I don't remember what my BP was doing at the time I first saw this dr.!  So my concern is, I'm assuming the BB can't tell if and when my body is going to decide to be normal or not . . . so the BB will do its job anyway, right?  It's impossible to predict.  And I get concerned that it will do its job even if its not needed, and cause problems.

Re: the TTT - something about it I don't understand:  How is the TTT the "gold standard" of diagnosing POTS when one is leaning against/supported by the table during the test?  Wouldn't free-standing be more diagnostic?  Because I have become symptomatic while standing, say, in a grocery store and, when I couldn't find a chair, leaned against something which helped to a degree.  I did my own poor man's at home one time and got warm, woozy and elevated HR standing unsupported after less than three minutes - that was all I could take before I sat down.  Even at the poor man's at the doc's office, they had me hold on to a chair while I stood.  It would actually seem to me that the "poor man's" version would be more accurate than the actual TTT.  I guess maybe they want the patient to be supported for safety reasons.

There isn't a "gold standard." Usually dysautonomia is diagnosed based on a lot of factors. If you have a positive TTT you are generally thought to have dysautonomia, but many people have it without a positive TTT.  I don't believe the beta blocker is meant to be taken in the way you are taking it or adjusted based on normal fluctuations of HR and BP throughout the day, so please make sure to coorindate with your doctor.  

Have you been diagnosed with dysautonomia? Did your dr explain why he or she prescribed the beta blocker?  Usually your BP and/or HR would not be normal if you have a diagnosis dysautonomia and a BB would be prescribed to stabilize HR and BP.   Also BPs and HRs normally fluctuate during the day and you wouldn't adjust a medication based on that, unless your doctor advised you to.   I would also ask the dr about cutting the pill and whether that makes sense.  Some medications can be cut, others can't.

POTS dysautonomia does not cause kidney disease.  Florinef does have some interactions with the kidneys.  I believe it is not recommended for people with kidney disease and does have potential for negative effects on the kidneys, especially if taken long term.  If you can't reach your doctor your pharmacist should know.

Only a few people with POTS have clinically low blood volume, but many are prescribed florinef because it helps with symptoms anyway. 

It’s common to be thirsty but the kind if dry mouth you describe doesn’t sound typical.  Best to check with your dr to be safe.

On 7/10/2018 at 1:09 PM, StayAtHomeMom said:

I am supposed to take it twice a day for HR. I have been just not taking it at night or try to take it earlier. Took it last night because of how bad I felt. Slept like crap. Very unrestful. I may have to see if there is a once a day or see if I can take it morning and afternoon. 

It is usually not recommended to abruptly stop a BB, so pls make sure to coordinate with your doctor and/or pharmacist.

10 hours ago, StayAtHomeMom said:

I have noticed just taking my beta blocker before bed makes my sleeping worse. I try to take it earlier in the evening. Not sure why it works that way though.

I also listen to audiobooks to help me sleep. I am a big book nerd so it has to be a book I have read a lot and certain voices are better. I love listening to Jim Dale read the Harry Potter series. His voice is deep and soothing. Plus while I am listening my mind can't wander to keep me awake. 

If I still have trouble I take melatonin and/or take a shower. Showers are exhausting for me so I usually fall asleep. 

Heat has never worked for me (clogs my nose up) so I usually do cold. If it is winter I will open my window (drives my hubby nuts) in the summer I usually have a fan blowing on my face. Not sure if the noise helps much but the cool wind on my face does. 

Beta blockers lower your BP.  Your body might be staying awake in an effort to keep up your BP.  A few hours before bed I used to drink a large cup of broth followed by a few glasses of water.  The other option is to ask your dr to see if you can switch to a morning dose.

POTS involves normal sinus tachycardia.  I think most of us have PACs and PVCs but these aren't considered arrhythmias.  My doc told me everyone gets them, but we are more attuned to our heartbeats, I think. I think many of us ignore them - tachycardia is much worse for me than PACs/PVCs.

I couldn't drink alcohol before but I can now.  If I know I will be drinking I usually salt load a day or two before.

4 hours ago, TCP said:

Google it there's a lot of information about dunking your feet in cold water in order to cool down. I also have Small Fibre Neuropathy, so my feet burn all the time and placing them in cold water can bring real relief on a hot day. 

'Your feet are another one of your body's quick-cooling spots. So relax, and soak your feet in a bowl or tub of cold water in order to cool down fast.'

For those of us that have pooling, this would constrict the vessels in your legs and increase BP.  Normally I hated cold water, but putting my feet/legs in the cold ocean last week during the heatwave felt great.

4 hours ago, katyroq said:

Thanks, I agree with your points. I'm thankful to be well enough to do my job nearly all the time, and I have pushed through symptoms for the last several years. I have a good understanding of my symptoms and usually can keep them under control in the classroom. These last couple weeks with the intense heat and improper AC in the classroom are the first time I've actually worried about anything happening. It was over 80 with 28 students in the room and I was running around helping them perform a lab for 3 hours in a row, twice in a day. 

Re florinef. The paper that comes with my prescription says "If you will be using this medication for a long time, carry a warning card or medical ID bracelet that identifies your use of this medication." I guess I could consult with my pharmacist or doctor on this, as I've been taking it for almost a year. 

I took florinef for a couple of years, I think.  I didn't know about this warning.  It definitely doesn't hurt to check with your dr/pharmacist.

Get a full cardiac workup from your doctor and guidelines for when to go to the ER or calling an ambulance.  If you have a clean workup most doctors tell you you are not in danger as Anamaria says. Usually the emergency medical teams can't be helpful and it's just a feeling you need to let pass. After a while you get used to the weird sensations and it's not so scary anymore.  Hope you feel better soon.

1 hour ago, Potsie1990 said:

I do wear the stockings... but honestly it’s the muscle weakness that’s really getting to me lately, and I don’t really see an improvement when I’m wearing them. I do it anyway just to cover my bases. I wonder if they are the right compression? Lol I got them from amazon, who knows if they are really tested. Thanks for the recommendation. 

Try brightlifedirect.com.  Their store brand has good compression and its cheap. Their customer service will help you with fitting, which is also important. 30-40 is the recommended version, though your doctor can advise best.  It's not super common to get IVs to treat POTS.  I would definitely try to find another doctor if yours doesn't know about POTS.  Look on the Dinet site and see if there is someone in your area.  On cutting the pill, at least check with your pharmacist before you try it. Not all pills and brands can be cut.

Midodrine totally wears off in a few hours.  So I think it is worth trying.  Have you tried wearing compression hose?

If this is a new symptom - one that isn’t super common for POTS -I would definitely go to your doctor to discuss. Strange that it is one eye and not both eyes. This could be POTS related or not.  

I took Florinef for a while and I am not aware of any requirement or recommendation to wear a medical bracelet. 

There is information on various dysautonomia websites including Dinet - brochures or sheets you can print out to give to others. But  i have tried to explain POTS to people and no one gets it and they might not need to, they just need to connect you with your emergency contacts in case you are ill or faint - family, hospital  and /or doctors. A simple explanation is that "I have very low blood pressure" or "My heart beats too fast".  It might be enough to just give them the list of contacts in case of illness/fainting.  

Although it makes sense to prepare I would also be optimistic that you haven’t fainted or needed emergency care yet - and hopefully that means you won’t!

Everyone is very different - it depends on what your BP and blood volume arei, how much you want to raise them and your height, weight, gender, etc.  I've heard 3-5g is recommended for the average patient.  The best thing is to slowly try adding saltier foods to your diet, keep track of it and if your BP is still low add more.  Remember that salt is different than sodium (which is a component of salt) and most foods list sodium content, not salt.  I've found that drinking 2 giant cups of broth - one in the morning and one at night boosts my BP and then I can eat normally.  Also remember to drink lots of water otherwise the salt won't help.

I believe tinnitus from Dysautonomia isn’t related to damaged nerves in the ear, but from rather heart rate and pressure issues. It’s pretty common - I think I’ve had it all my life and don’t notice anymore.

Upper back pain is pretty common with POTS. There are a few different reasons for it. Coat hanger pain is frrom poor circulation - just like we don’t get enough blood to our brain it doesn’t go to the upper back.  Even though my POTS is better my upper back still hurts a lot! Also some people with POTS have other co-conditions like EDS which cause pain. If you are saying you pain is worse when lying down, you might want to mention to your doctor. Maybe it’s the pressure on your back from a specific injury.

What symptoms does your fiancé have? If you can afford it, I would buy an Omori blood pressure monitor and a polar heart rate watch. Measure his heart rate and BP at various times in the day every day and keep a diary.

if he has low blood pressure you could look into buying compression hose which is available over the counter.

For salt intake the best way is not to add salt to your food or take salt tablets but to find foods naturally rich in salt. There are many posts on this topic in the forum. I am not sure I agree with your doctor that body will naturally know if it needs salt.  Most of us have to force ourselves but when you find foods you can tolerate it isn’t so bad.

Finally I would look on the dinet site. There is a list of doctors and maybe there is one in your area that you can see before M.ayo appointment. If not you could try to find an electrophysiologidt (special cardiologist). On the Dinet site you could read about medications and ask your primary doctor to prescribe them if they make sense. Dysautonomia International is also another good website,The Mayo doesn’t usually give ongoing care so you will need to either work with your primary or find a local doctor anyway. Many of us have had to talk pe charge of our own care and guide the doctors,

Good luck in your journey.  Your fiancé will probably feel a lot better once he finds the right treatment.

On 6/29/2018 at 7:16 AM, Pistol said:

I believe a CTA ( CT scan of the blood vessels in the brain ) shows circulation of the brain as well as the cerebral circulatory system itself.  

POTS patients usually have a normal CT scan l. It’s more like a picture of the brain. It can show that a stroke occurred but won’t show less oxygen is going to your brain because blood is is pooling in your legs.

It’s normal to have low BPs at night. I’ve had 60/40 before and my doctor was not concerned. This happens even to healthy people and is not part of low BP. Check with your doctor but of the changes you describe serm normal, including the increase in BP during vacuuming.  BP goes IP during exercise.

those symptoms Can occur with many conditions including MSA or dysautonomia, but the hallmark symptoms of dysautonomia are marked positional changes in HR and/or BP  .