yogini

If it's a true vertigo with nystagmus, then the treatments that POTS patients use for dizziness might not be helpful. There might be other forums or resources for information on vertigo. And, even though it might be very painful for her, it might be worth doing some of the testing as that would help you figure out the most effective treatment.

You may want to ask your cardiologist and for a full cardiac workup. There are a lot of pains that can happen in the chest region, including cardiac pain and digestive pain as one of the other posters noted. A workup can give you peace of mind and let you know whether your heart is healthy. Chest pains are also a "normal" part of dysautonomia, though mine come go - none have lasted for 24 hours. If you are feeling anxious as if the doctor has any cancellations or could see you sooner.

Most Americans don't go to clinics and some of the clinics here aren't good with ongoing care -- so they can run a bunch of tests but won't help you once you leave the clinic. Have you looked on the various dysautonomia websites for the doctors in your country or in Europe? I think there are a few even in the UK.

Has she seen an inner ear doctor for the vertigo? I have been told vertigo (spinning) is separate from the dizziness caused by POTS. I think a specialist in treating that could let you know what the other medications are. I had severe dizziness from POTS as my worst symptom, but my docs never prescribed a benzo. My POTS dizziness definitely gets worse when the seasons change.

Yes.

Many people with diagnosed dysautonomia get disability, but many others don'''t so I wouldn't rely on it. Do you have a lawyer involved and has that person told you what your chances look like? If you don't have a diagnosis and don't have testing I might be more challenging to get disability. I also think that if you feel physically able to work, you should. Doctors usually say that being active helps you improve.

I can have tachycardia at any time, sitting, standing or laying down. It doesn't happen every time I stand, but probably more often than not. The biggest triggers for me are being in an upright position and activity.

Electrolyte solutions usually have sodium in them. The danger of sodium/salt is that it increases your blood pressure and can cause high BP which in the long term causes damage to the heart and blood vessels. Many of us have low BP and/or low blood volume and salt can help with that. If you don’t have low BP or blood volume, it may not help. Your doc can confirm but as long as your BP is in the normal range (120/80) there should not be any long or short term risk to increasing salt/sodium.

Yes you should definitely talk to a medical dr to switch up your medications. Your PCP could probably advise on both the beta blocker (even if he or she doesn’t know about POTS - it is a very common medication) and the sleep study. Even the time of day that you take the beta blocker could affect your sleep. The HR that you report between 60-80 is generally considered within the normal range even for people without Dysautonomia. It can be dangerous to be sleep deprived for a long time so it might make sense to see your PCP soon.

Beta blockers can cause insomnia. What is your HR and BP when you can’t sleep? Have you ever had a sleep study?

110 while standing is actually within the normal range - even people without POTS could easily have that. And the decrease while lying back down is normal too. The rest of us with POTS aren't normal as it often takes a wile for my HR to settle down. Unless your dr tells you to be scared don't be! You can hopefully fire out what is causing your dizziness and go from there.

Many people have NCS which is the most common form of dysautonomia other than POTS. They might have low blood pressure and low or normal heart rate, but generally do feel better after adding salt+water.

It might be helpful to take 2 mediations together - for example something to increase your BP in conjunction with a beta blocker. Also have you considered a SSRI?

My HR went to 155 without meds. My base rate is probably 75-80. For me once I am up my HR does not calm down for a while after I sit or lie down. Maybe that’s what your nurse meant, if you went back down to 60 right away.

It is interesting that your symptoms/tachycardia occur at night while lying down. While many of us have symptoms at night our worst symptoms are during the day and while in an upright position. Hope you find answers soon.

Did you have low BP before? Usually high BP causes problems over a long period of time. If you get to the doctor tomorrow and get treatment, hopefully you will get it under control and feel better without any lasting effects.

I had this type of dizziness which has largely gone away now. It comes and goes every now and then but I have gone used to it I don't notice as much anymore. I think being on a beta blocker made this worse for me and it improved when I switched from a beta blocker to an SSRI.

If you have low blood volume alcohol as a diuretic would make you worse. I have also read that alcohol helps some, but I am not sure many of us use it as a regular treatment.

I think many people can tolerate caffeine/coffee while their POTS is active. In fact many of us need it to keep up our BP. Others obviously can’t tolerate it at all. It is something that leaves your system quickly. Unless your doctor tells you you shouldn’t, it’s probably safe to try it every now and then and see what happens. If you want to be really safe try just a half cup or a few sips at first.

It's a free country so people can smoke and drink if they want to and they enjoy it. But totally agree in my opinion these aren't treatments. On the sodium when I was sick I drank one cup of broth about 750 mg sodium in the morning, then 750 mg at night every day along with lots of water. this works well for me. If you do it every day consistently, your blood volume will build up. Remember that dysautonomia is something that gets better slowly over time. Most of us actually focus on being healthier when we are at our worst, because that usually helps with recovery.

You're right, the body can tolerate higher heart rates during exercise, but docs usually recommend for an hour a day. Some of us are exercising all day. If only it helped my waistline~ But I think there isn't any long-term damage from dysautonomia.

I think it would depend on your symptoms and form of POTS. You may want to start keeping a log. When do you feel this? Did you eat something before that is causing the nausea? What time of day, what is your BP and HR when it happens. Identifying your triggers can help you treat the symptoms and you can also avoid the triggers. Your doctor can advise best, and you can also read up on the various treatments on the POTS main page and make suggestions to your doctor. If you are looking to increase your BP, mestinon and SSRIs have been shown to be effective, for example. If you're looking for a stimulant, some people take meds like ritalin - I've never tried this and I don't know much about it. People also drink coffee or tea, since caffeine is a stimulant.

Nicotine is a stimulant, so it might help your blood pressure. But it's taxing on your heart and lungs. You might have to experiment but you could probably get the same effect from another stimulant or medication without the negative side effects.

Do you have POTS or another form of dysautoomia? Which symptoms bother you the most? If you have high blood pressure and dysautoomia, most doctors would not start off with florinef because there are so many other treatments that don't increase blood pressure. It's interesting that you already take Metoprolol, a beta blocker, which is one of the prescribed treatments for POTS. It generally helps with high HR and high BP. I can understand why you might be uncomfortable. I don't have high BP but many others here do. You might want to talk to them and hear what mediation they take and do some research about treatments. You can also search on this forum where there are lots of posts about POTS and high BP. Then you could make another appointment with your doctor to talk through your options before you start taking the florinef. Good luck! .

Though only a doc can diagnose you, what you are describing sounds very much like POTS. Symptoms wax and wane. You don't have to have tachycardia each time you stand. If you get 30+ often enough ad you see HRs of 130-140s when standing that indicates POTS.