yogini

I wouldn't assume that the doctor has a bad motive.  Of course you wouldn't want to be on florinef unless you need it.  But it sounds like it was working for you.

You're right that most doctors don't experience treating dysautonomia and they wind up leading us in the wrong direction.    Maybe you can find someone else in your area - there is a DINET list of doctors.

If your migraines are caused by dysautonomia, treating the dysautonomia can help with the migraines.  For example, if you have low blood pressure and find a way to increase your blood pressure, you may have fewer migraines.

You can google more about the various causes of POTS and ask your doctor, but usually it would not be from a medicine.  Especially if you got the POTS 6 years after taking the medicine...

I did't have to quit, but after plugging along for a while I decided to take some time off.  I was able to go back to work full time.  You should look into your legal rights - employers are generally required to try to accommodate you, within reason.

 I would ask the doctor why he asked you to wean off or make a change.  Most people have to reduce because their BP is too high.  If you are feeling worse off the med, maybe it was working for you.  It is often hard to find a med that works for dysautonomia, so I would be hesitant to change anything

Low blood volume actually has high blood pressure as a symptom.  That is just one example of where a doctor might tell someone to increase their salt even though they have high BP.  It is really individual though so you need to confirm with your doctor.

I didn't drink for  along time after getting POTS but I can handle it now.   I can't handle coffee - it is too much caffeine for me.  Everyone is different.

I would look into whether you have hyperandrenergic POTS. You can do some searches you will find that there are special treatments for this.  You should check with your doctors some doctors say to avoid salt with high BP, others say to take it anyway.

Which medicine were you taking for high BP?  Beta blockers reduce BP and HR, so I think that would be a good medicine to ask about if you have both of those symptoms

Hi, I am not a doctor, but I don't believe dysautonomia is generally caused by diabetes or blood sugar issues.  Though if you have any other health condition on top of dysautonomia, when your other condition is acting up it makes your dysautonomia worse.

Though many with dysautonomia feel better without simple carbs - I personally need carbs - and I have trouble digesting vegetables and other more complex foods.  I would not be surprised if I was addicted to carbs. When I stop them my body starts to freak out.  So I don't stop them.  But luckily I don't have diabetes, yet.

Diabetes runs in my family, though.  My grandmother died at a young age from complications of diabetes and my dad was borderline diabetic. He got his in check with a diet, but it was the Mayo Clinic diet.  There are many diets for diabetes that have been studied and tested. I would be inclined to stick with one of those rather than something new.  The newer diets make me nervous, especially when they are extreme.  And I would definitely make sure you are coordinating with your doctor.  

Was your blood pressure too high with the florinef or was it normal?  

I would talk to whichever doctor you go to for your sensitivities and ask him or her to coordinate with your dentist.

Did you check your HR when feeling dizzy?  But in any case, it's not unusual to feel dizzy when your HR and BP are normal.  

BP is measured in your arm.  Many people with POTS feel dizzy because not enough blood gets to the brain.  It collects in our lower body because our blood vessels do not constrict enough.  There are other mechanisms but this is a big one for many of us

Yes, it is very common to have other symptoms even though your heart rate and blood pressure are "normal".  Remember medicine like a beta blocker only controls HR and BP.  It doesn't help whatever's off in your body/ autonomic nervous system which is causing the POTS and all the other symptoms in the first place. I life a pretty normal life, but I get symptoms very often and very bad symptoms sometimes.  

I had the walking on a slant (I call it rowboat) and also feeling foggy all the time.  These symptoms mostly went away and happen very occasionally for me now.

It's extremely common to have a ton of different symptoms affecting the whole body.  You have had this on and off for so many years and dealt with it.  It should be no worse than before. In fact, you will probably improve with treatment.   

This sounds typical for POTS - not necessarily hyper POTS - and symptoms can definitely change. It might even be that your body has become tolerant to benedryl. I would try to find another med to help you sleep. I use ambien very occasionally to break the cycle. I also use melatonin more regularly.

I would start by counting your pulse by hand because often these watches can be inaccurate.  For example any electronics in the room can interfere with the heart rate watch.

I think most people with POTS have sinus tachycardia, which means our heart rhythm is normal but the rate is fast, usually under 150 bpm.  The high heart rates can sometimes mean supra ventricular tachycardia, which is a different type of tachycardia which also can affect heart rhythm.  The heart rates are often higher for SVT.

Ask your doctor which type you have and then do some research online.  It is of course up to your doctor but with these types of HR I am surprised a doctor would not offer some kind of treatment.  I would also think about getting a second opinion - maybe you want to see a specialist listed on the DINET site.

Gertie, it isn't selfish at all.  Most of us need all of our energy just to get through our own day.  The people who try to burden you with their problems when you are chronically ill - and elderly in your case - are the ones who are selfish, not you.

Hi all. I ordered the Healthmate Forever brand, a mid-priced model, for around $50 or $60 from Amazon.  The first couple of times I used it I felt like it made me dizzy, but probably just me being paranoid.  Anyway the dizziness is gone now.

There are maybe 15 or 20 levels of intensity - but I need to start off slow because I can't tolerate the higher levels yet.  I think I will increase the intensity over time as I get used to it.  I do like it already and my shoulders are feeling looser already even at the lower level.  I use a heating pad or heated pillow, do yoga, and self-massage and this works in a way that all of those other treatments haven't.  So I think this was a really good purchase for me - can't wait to see what happens when I can use the higher levels - and wish I'd thought of this years ago!  

Yes, I lost some friends.  Two very good friends in particular.  In retrospect those weren't the best friendships for me anyway.  I select much better now.  Good riddance to them!

You do have to cut your friends ad family a little bit of a break.  It is hard to know how to deal with someone with chronic illness.  Even the people that sort of get it don't really understand what it feels like.  So I would get a lot of - oh do you want to go to dinner somewhere 1 hour away - and of course it was easier for me to be nearby, but they didn't understand, couldn't step into my shoes.  That was frustrating, but maybe not their fault.  They shouldn't have to stick around here every time just for me. And  I'll admit, if I hadn't have gone through it myself I wouldn't understand either.

Also in order to keep a friendship you have to be able to support other people and participate in activities and it is hard to do so and be reliable in our state. Frankly I wasn't able to enjoy myself and was probably a stick in the mud to be around. 

I think I pulled back from some friendships to focus on my health, but was able to reconnect when I started to feel better.  I also made many new friends to replace the old ones over time.  It takes time.  Hang in there.

I was first prescribed metoprolol and couldn't tolerate it so I switched to atenolol. After that I tried a couple of other beta blockers without problem, so I think for me metoprolol wasn't the right drug.  This might be true for you too, or not. I encourage you to speak with your doctor.  Also, can you get atenolol from mail order, etc?

On 2-10-2017 at 3:50 AM, Talon123 said:

Carla, your pulse looks phenomenal for a normal person more or less someone with pots! I work as a personal trainer and constantly check and monitor my clients active and resting pulse. Are you standard or hyper pots? Even as a very conditioned athlete my pots hr is 85-90 sitting and can hit 120 plus just standing. A low pulse signifies a good cardiovascular health, as long as it's not a sign of hypothyroid and a couple other disorders, from what I know/understand . Was your pulse always this low with pots? 

 My HR dips very low at night.  I can't do cardio at all - I can't run or do the stair master without triggering my POTS.  I was told by doctor that my low HR at night was "normal" and nothing to be concerned about.  I don't feel sick at night, so I have not been worried about this symptom.

In normal people low HR is a good thing, but in dysautonomia it is a symptom.  Dysautonomia affects HR - and it can go in either direction, up or down. Low HR during waking hours is more common in neurocardiogenic syncope, though it can also occur with POTS.  If a person has both low BP and HR, it can make you lightheaded or even faint.  There are medical treatments to help with this, so it is important to discuss with your doctor. 

I do believe some people with dysautonomia take them, but it is best to ask your doctor or pharmacist,

On 2-10-2017 at 1:47 AM, Alex D. said:

I use a traditional TENS unit for specific localized pain like neck and coat hanger, but I bought a Quell unit to try and minimize my fibromyalgia pain.  It expensive, but they have a 30 day money back guarantee.

its been clinically tested and will provide some relief in 80% of patients.  I guess I’m in that 80%.

 

Alex

Hi Alex,  I see that the Quell is about $250.  I am going to start with one of the more affordable versions.  I'm thinking Healthmate Forever brand.  I have a gift certificate to Amazon and have been thinking about home TENS for a while so I figured this would be a good chance to try it.  

If the first machine works and I feel like I need something more, I will go for the Quell.  I have trigger points around my neck and shoulders, not fibromyalgia, so I hope that the cheap version will do the trick, lol!

On 10/1/2017 at 7:12 PM, RecipeForDisaster said:

I use one and it helps quite a bit while it's in use and shortly afterwards. You can't use it very high up your neck, but particularly for my shoulders, it had helped a lot. My unit was prescribed through PT so it was covered through my insurance. There are few drawbacks except for wearing it out of the house and moving electrodes accidentally. Sometimes I tape them in place. I cannot take NSAIDs so I really appreciate having my TENS.

Thanks so much for the reply.   Glad to know it helps. Which brand is your machine and about how much did you spend for it?  I'm glad you told me about the neck as I was planning to use it there...but also on my shoulders.