yogini

2 hours ago, lieze said:

2 hours ago, ScottS said:

I think it is probably a good idea to back off on the Gatorade - It's just sugar water combined with weird fruit flavor combinations. Warm broth - for me - is a better alternative. Tea (caffeinated if you can tolerate it or your favorite herbal) with a teaspoon of your choice of sweetener is another. You are correct, of course, to stay hydrated.

I

 I couldn't agree more.  Gatorade is junk with corn syrup and artificial colors and it doesn't even contain enough salt to meet the recommended daily salt intake.  Broth has been a lifesaver for me.  There are tests you can havefor lactose intolerance, food allergies, gastroparesis.  But I also think eating increases symptoms in many dysautnomia patients.   Most of us just eat and live with the increased symptoms.  We all tweak a few things here and there - some remove gluten and lactose, some are vegetarian, some eat smaller meals more frequently.  But a large unusual adjustment - like removing a lot of foods from your diet and risking not getting enough nutrition - is probably best done under a doctor's supervision.

You're right. The criteria for POTS is an increase of 30 bpm which it looks like you had.  There are many doctors out there who know just enough about dysautonomia to be dangerous.  Having had some terrible doctors the best thing you can do is cut your losses and move on to the next one.   A person who half understands POTS and screwed up the diagnosis will probably screw up your treatment too.  You were smart to get a copy of your test, which you can use with other doctors.

On 12/9/2019 at 11:06 AM, WanderWonder said:

I usually do a casual/brisk walk on the treadmill everyday for a mile. Some days I feel fatigued. My heart rate standing is usually 80bpm, but it is about 105bpm those days. When I start slowly walking, it goes up to 115-130bpm. If I keep walking it goes up to about 140bpm. At that point I stop because I feel too tired and my heart is beating too hard. I'm worried I'm straining it, it feels like it will give out even though I know that isn't likely.

Does anyone exercise regardless of a high heart rate?  What has your doctor said about this?  Has anyone been told this is dangerous by a doctor?

I would talk to your doctor about your target HR range.  It depends on height, weight, age, gender and a number of other factors.  Some people here have been authorized to keep gong at very high rates.  For most people 140 would probably not be considered dangerous.  You can also take steps to help lower your HR.  For example if your BP is going down (and your HR is too fast to compensate) you could try wearing compression hose when you exercise.  

  When trying to recover from dysautonomia It becomes a tricky balance of pushing yourself without going too far .  If you feel very sick after you might be going to far.  If you have only mild symptoms after , you might be able to try to push yourself a little harder.

Seems from your post you may have previously lost the ability to speak for about 10 minutes.  If so this is just a prolonged version of what you were already having.   This isn't a typical POTS symptom, so I would definitely check with your doctor.  You could also try to measure your HR and blood pressure while this is happening, and maybe that would help you figure out whether it is related to POTS.

Also have you figured out what causes the tremors when you exercise?     I switched to yoga and I tolerate that much better than when I used to do cardio - there isn't much of an after effect for me - and it definitely led to a more rapid improvement in my POTS.

In general dysautonomia is dysregulation of the HR and BP.    Many of us that usually have low BP and high HR get high BP and/or low HR sometimes as part of our symptoms.  Higher BP often coincides with low HR, because the heart works harder to pump blood.  (The reason many of us get a lower HR when we take in more salt.)   This incident  doesn't seem too unusual for dysautnomia - even the range of your high BP doesn't seem sky high - but it is best to discuss with your doctor.  Also note that if you drank coffee with caffeine that would impact your BP.  

Maybe keep a written record of your BP and if it drops too low you can start the salt again.   You could also take a salt pill every other day, instead of every day if your BP was getting too high.

13 minutes ago, Derek1987 said:

I have hyper pots and i really need a laxative. I believe my xanax is making it hard for me to go. Before the xanax, 0 problems. Ive had a few fainting incidents and im not sure if a laxative could mess me up somehow.  Thoughts and experiences?

It depends on what is going on with your digestive system.  It  might work for some people but not others.  Ask your doctor who prescribed the xanax.

On 11/15/2019 at 4:00 PM, Pistol said:

@yogini - I do not own one myself but have heard very good things about them. Personally - I would invest in a good one. Sleep is important!!!!

The original one is on sale at a few places on Black Friday. Still expensive but makes me feel better about splurging.  😁

I was wondering whether anyone has tried weighted blanket? They can be really expensive but heard they help with sleep and other ailments.   I have severe insomnia sometimes and would appreciate hearing anyone's experience whether this helped with dysautonomia symptoms - mine are always worse when I don't get sleep.  Also there are so many different brands and a range of costs -- so if you really like your blanket would love to know the brand.   I am leaning toward the Gravity Blanket which is $250 - since that seems to have the best reviews.

 I  feel like I am swaying slightly from side to side (or up and down) even though I'm not physically moving at all.  This has historically been one of my worst symptoms.  It was really scary and confusing at first - and it was constant.  Now it only happens sometimes and I am so used to it that I barely notice.  This symptom definitely got better as my dysautonomia improved and exercise (even practicing walking) helped a lot.  Check with your doctor but there is a good chance this symptom is dysautonomia and not another condition.

1 hour ago, fotofem said:

I am definitely having those issues with Midodrine!  I took it to mean that my BP was falling like a rock but suddenly I started to wonder if I have a huge tolerance problem.  I've increased my use of Fludrocortisone, no satisfaction yet.  It is disturbing that my cardiology docs say Shut up and take your medicine  when I ask What's my diagnosis?  What's wrong with the data I'm showing you?  And disturbing to be told these are the only 2 meds available even if you get an answer as to the cause from a Dysautonomia specialist.  "The treatment will still be the same."  -->For those of you who have seen such a specialist, is this really the only treatment they advise?  My next doc [at Stanford] has March 2020 as his first new patient appointment, and I don't know how I can make it to there.  What else should I be doing?

Hi, there are many medicines and other treatments and lots of information on the Dinet website which you can print out and bring to your doctor.  There is also a list of doctors  that have experience in treating dysautonomia.  If you post about your symptoms and diagnosis on the forum in a separate post, people can also share their ideas on what might help you. 

Florinef can take several weeks to take effect.  But if your blood pressure is low, have you tried compression hose?  

On 10/25/2019 at 10:43 PM, autonomicreg said:

New to the forum, hello everyone! I was officially diagnosed with dysautonomia due to "low blood volume and inappropriate norepinephrine response" about a month ago by a wonderful cardiologist. Before seeing him, I was taking Florinef for about 5 months. It actually worked very well for me. I went from being unable to walk to eventually going out dancing at clubs 2 weeks ago, in those 5 months. However, my cardiologist recently switched me to midodrine, as he stated that Florinef can have negative effects on bone density and other areas over time (which I have looked up and confirmed). So I agreed to switch. 

It has not been a good experience the last few days so far. Yes, it "works". But it only works for 3 - 4 hours at a time. You're supposed to take it 3 times a day, so that's 9 - 12 hours of semi relief from symptoms and being able to stand. What about the other 6 - 8 hours during the day that I'm awake? Am I just supposed to suffer through symptoms daily at peaks of highs and lows between dosages? And what about in the middle of the night when the medication has completely worn off, and I'm suffering from tachycardia, sob and anxiety? And every morning I have to wait an hour after I take my first dose to get out of bed? 

I never had these issues with Florinef, as it lasts quite a long time in your system. I would just take it once each morning. And I could wake up the following morning and get right out of bed before even needing to take my next dose. But with midodrine, it's like you're only getting a sporadic 9 hours of relief during the day. 

Has anyone else experienced or is experiencing these issues with midodrine? I know some people swear by this drug. But I don't see how this is even sustainable with such a short half life...especially for people that are symptomatic even when sitting or laying down.

Finding the right treatment for dysautonomia involves a lot of trial and error.  Most treatments only work for a small subset of people.  While midodrine definitely works very well for a subset of dysautonomia patients what works for someone else might not be right for your body .  If you saw improvement florinef without the drawback of florinef that you mention, would it make sense to go back on florinef?

19 hours ago, Clueingforlooks said:

I’ve tried pretty much all the ppis and ranitidine and they all cause bad side effects (IBS, more nausea or worsening pots). 

Yeah most of my diet now consists of mostly rice, porridge, chicken, turkey and veg. I don’t think there’s much else I can change in terms of diet and it hasn’t claimed down my stomach much. I’ve tried all the basic acid reflux prevention lifestyle changes and it hasn’t made a dent in my symptoms annoyingly. 

Ask your doctor but if you are eating things with fiber - vegetables or porridge -- that could be making things worse for you.  

I am sure there are whole forums related to the topic of reflux, so it might also be helpful to do some research on the specific topic.   Glad you are revisiting with doctor.   There are tons of treatments and sometimes if oe med doesn't work anymore it's time to switch it up.

I have had severe acid reflux at times and have been on meds for it on and off for years.  And I think what Pistol describes is the same for me - I either am too slow/backed up or too fast at different times.  What has helped me the most has been identifying foods that work for me.  There is a list of foods that is recommended for reflux. I can eat simple carbs and they help absorb the acid - rice, white bread, potatoes.  Not really considered healthy any more but they work for me.  Plain chicken also works. Jello.  Foods which are complex, heavy, fatty,  fiber rich, dairy make things worse for me, so I avoid them or spread out the times that I eat them.  Smaller amounts are better.  

2 hours ago, MTRJ75 said:

These particular rashes...yes. As early as August to as late as Thanksgiving. Of the six or seven years this has been happening now, both the earliest and latest instances occurred last year. This is the latest in the year I've had my first rash, so perhaps that's good news. 

I guess my question is would MCAS cause seasonal rashes?  I don't know too much about it, but thought it was something that was year round.

Are your symptoms only occurring at certain times in the year?

1 hour ago, dancer65 said:

You friend has probably already done this but I finally got my diagnosis after handing a list of every symptom I had written down as they happened over a period of time. I have read in some medical articles that sometimes a list can really help the Dr to make connections and it  can be that the symptom that seems insignificant to the patient that steers them in the right direction. Personally I would not have remembered every thing that was going on too much brain fog .

I do agree with Pistol having another person with you makes all the difference for support and my experience has been my husband has been asked many questions about his perspective of my health, sometimes that validation made me feel more confident I would not be labelled a hypochondriac as I had been for years when I was single. 

My heart goes out to your friend it’s awful not understanding what is happening to your health, I hope she gets to the bottom of it soon . She is fortunate to have you as a friend ! 

 

 

I agree with this but would take it one step further.  On websites like WebMd they have a symptom checker where you enter in your info.    They can guess what you have from a combo of symptoms.   It may or may not be in the right direction but it gets you thinking.   I would also read about the particular steroid she was given, the side effects from stopping it and from stopping steroids generally.    The best thing that patients can do for themselves is to be extremely informed and take of their own health and not wait for doctors to.  Your friend is very lucky to have you.  You can assist her, but ideally she or someone in her immediate family could do this.  I am saying this only because a friend tried to help me when I was first sick and totally guided me in the wrong direction - not on purpose, but because she didn't quite understand what was happening to me.    At the same time my parents were looking into it, and they figured it out fairly quickly because they experienced with me first hand. 

From tracking my symptoms I know my own headaches are related to low blood pressure - when I drink a big cup of soup and a lot of water I feel much better.  At other times I have had headaches from high blood pressure due the medication I was taking, which I had to discontinue.  I am so attuned to these headaches now that I know what the cause is and how to treat it.  The low blood pressure headache is more of a dull pain than the throbbing pain I get at certain times in the month.  

I would check with your doctor for a recommendation.  Your headaches might not have to do with POTS at all - and the dr can best help figure it out.  

get on the cancellation list if there is one or call once a week to see if they have cancellations. You can do a poor man's tilt at home, and start measuring your heart rate and BP and you will get a sense if you have dysautonomia. 

On 9/25/2019 at 10:04 PM, lieze said:

I tried it tonight with a pulse oximeter I have. I worked on getting my heartrates into the 70’s and was successful. I worried less about my oxygenation levels. If I see a 97-99 on oxygenation I relax and if moves around pay less attention to that. I started in the 90’s pulse and got it down to 70’s. Is that how you do it? 

 If you are interested in biofeedback, it might be helpful to  look into a more formal method that has been researched and shown to be effective.  There are machines you can buy, apps for your phone, etc.  There might be some info on posts in the forum - but better info out there on google, etc.  The idea is that if you do the same exercise over the long term, your HR lowers a little in average - and then you can also use the same techniques to help manage in a flare.

On 9/15/2019 at 11:17 AM, KaciCrochets said:

Except this mostly happens when I'm lying down. Unless my heart rate slows enough to not pump blood efficiently when I'm relaxed. But I'd think that would be more of a consistent thing. ???

It's complicated.  Your doctor could best explain the mechanism but usually dysautomia symptoms tend to act up when the brain isn't getting enough blood, which and happen in any position. Both the HR and BP drop during sleep, combine this with dysautonomia, not a great mix. Some patients even faint in their sleep.  

Everything you described is fairly common including waking up from a dream to  have all of those symptoms and more in the middle of the night. You mentioned an echo - make sure you get a full cardiac workup - stress test ECG, etc.  Through these tests your cardiologist can tell you if you are at risk for a heart attack and when to go to the ER.  Most of us who have been cleared have been told there is no need to go.  

CBD can lower your blood pressure.  Have you checked with your dr whether it makes sense for you? Are you measuring your blood pressure and HR when these symptoms happen?   Drink water + salt at night and first thing in the morning  has helped me deal with the morning symptoms caused by low blood pressure and dehydration in the morning.  

Hope you feel better soon.

On 9/12/2019 at 8:56 AM, KaciCrochets said:

Who else gets emotional and mental symptoms with a POTS flare? I get anxiety and a kind of desperate feeling like I'm trapped and there's no way out. When I'm dumping norepinephrine at night I get these weird, warped thoughts floating through my head that make me feel sick, like my brain is on a carnival ride that both spins around until you puke and has you looking into a funhouse mirror where everything is wavy and a little unfocused. These mental and emotional symptoms are, for me, the absolute worst and I can't stand them, they are unbearable. If I don't have them, everything else I go through is tolerable. Am I the only one who gets these symptoms?

When not enough blood goes into your brain, it is a natural reaction for the mind and body to start to panic.   I also get POTS symptoms along with PMS which is already a time of the month when I feel more anxious than normal. 

2 hours ago, bombsh3ll said:

I am not at the point of making this decision yet, & am not asking for advice but am very interested to hear what other people would choose;

A small but rapidly growing cohort of people with severe dysautonomia, most of whom have diagnosed or suspected EDS, have experienced dramatic improvement & in some cases complete cure, by undergoing craniocervical fusion surgery. The skull is lifted up, then fused to the neck in a rigid position, & the neck is also fused. There are variations on this theme but the procedure in my particular case would remove all movement in my neck, permanently. 

There is no guarantee the operation would help. Obviously this procedure is only performed where craniocervical instability is diagnosed, it is not done in the absence of this. (I have been diagnosed with cranial settling, which is a form of craniocervical instability). 

The mortality rate from the operation is 0-0.6% per the most recent research. 

Once I have definitively ruled out a spinal CSF leak as the cause in my case, this surgery is the next (& last as far as I can see for now) option to explore. 

So.. what would you do - permanently sacrifice ALL movement in your neck to have a chance (but no guarantee it would work) at being able to live again, or stay miserable syncopal & supine & not risk your neck?

B xxx

A risky surgery with neck damage and no guarantee for improvement doesn't seem like a great option. If other people are starting to try the surgery, it might be better to let them be the guinea pigs.  Not sure how long you've had dysautonomia but most people do improve over time.  It takes trial and error - sometimes years of trying different things - but surgery isn't your only option.

Glad you are under the care of your doctor and will be getting meds.  High blood pressure for a few seconds probably isn't as concerning to doctors as sustained high BP.   Also it is a normal response to have BP increase during activity - so that might not be the best time to measure.