MomtoGiuliana

13 hours ago, Derek1987 said:

Have you ever had jump scare feelings as well?

 

I'm not entirely sure of what that is.  But I have had experiences that felt a lot like a panic attack.  Except I have no reason at all to feel anxious.  In fact I was diagnosed for years with episodes of panic attacks and anxiety--and I started to believe I had some underlying anxiety issue.  It was when I finally went to a psychiatrist that I started to get somewhere with a diagnosis bc she wrote back to my GP that she saw no reason to believe I had an anxiety disorder and believed I had something else going on.

IV fluids help me too with this symptom, among others.  

This may not help given the severity of your symptoms but another thing that has helped me in the past with this is lying on my back with my arms back behind me ( resting on the bed, like floating).  It requires you to breathe using your diaphragm only.  It can help to calm and relax the body.

So sorry.  That is a lot to process.  I am very surprised a diagnosis would be shared with your employer given privacy rules.

I hope at your next appointment they can give you much more information and a treatment plan too.  That is a long time to wait when you are anxious.  Try to talk to people who can help you find calm and focus in this very difficult situation.  The mind body connection can be powerful so anything you can do to reduce your anxiety at this time would be good.  When I got a cancer diagnosis I was terrified.  Meditation and gentle yoga was a help, as was talking to others who had been or were going through the same thing.

Agree that food can play a role--for me carb heavy meal and caffeine often make symptoms worse.  For many of us, a lot of extra fluid is needed too.  Good you feel better!

So sorry.  If you are feeling that poorly you need more attention from your doctor/s.  Hope you have a follow up soon.  

SSRI certainly does not work for everyone with POTS.  I think studies I have seen state that somewhere around 50% of POTS patients find symptom relief from SSRIs.   SSRIs also do not work immediately for most people. I do think it helped me--but not for about 2 months.   I had two weeks of worsened symptoms, with anxiety and worse heart pounding, while my body adjusted.  After the adjustment period I do think it helped calm my ANS.  

I think it can be helpful to doctors to make these measurements at home and keep a record you can share with them, especially during times you are having symptoms.

Do you have a specialist you can see soon?

This may be helpful if you have not looked at it:

https://www.dinet.org/info/pots/hyperadrenergic-pots-hyperpots-an-overview-of-a-pots-subtype-r220/

Many people are not diagnosed with a subtype, whether they have that subtype or not.  It may nor may not be helpful in terms of treatment.  My bp also rises significantly on standing.  My specialist never wanted to do any further testing beyond tilt table test, event monitor and echo.  The last two just rule out other problems.

Glad you have answers and great job being tenacious.  I hope the next step is good treatment solutions so that you feel and are better.

This link to how POTS is diagnosed might help:

https://www.dinet.org/content/information-resources/dysautonomia-disorders-diagnostics-info/autonomic-testing-for-dysautonomia-r206/

In my experience, heart rate variability can vary daily and even hourly.  But I would say when I am in a flare, and not medicated (beta blocker, lots of fluid, salt) my hr is pretty consistently elevated significantly when I stand up.

For me and I think many people, symptoms tend to be worse in the AM and improve as the day goes on.  Some people have significant relief of symptoms by the end of the day.

When getting tested it's ideal typically not to be on medications that may mask your symptoms--although that would be a discussion to have w your doctor.

When I am in a flare up my dr writes a note saying I need to work at home if I can work at all.  It has been very helpful.  I think most work places are probably not going to be very accomodating without a dr's note.  Do you have a specialist who could write a note for you?

It's hard to know without further evaluation by a specialist.  When I was first diagnosed with POTS I had been having that symptom for probably about a year (and was overall quite disabled by the time I was finally diagnosed).  The pattern of symptoms is different for each individual with dysautonomia--and symptoms and intensity of symptoms can change over time for patients.  Some people can be sick continuously for years, while others have a pattern of flare ups with good health in between, etc.

Hi Mikayla

There have been a lot of past discussions about this medication.  It is commonly prescribed for POTS/dysautonomia.

Here is one discussion that may be helpful:

https://www.dinet.org/forums/topic/31938-is-fludrocortisoneflorinef-a-brutal-medication-to-take/

When I am in a bad flare I get burning in my muscles from very little exertion. Yes I can even get it after eating and I have not physically exerted.  Exercise intolerance is common in dysautonomia.  Compression does help me somewhat with this.

Thanks Sarah.  We appreciate the information and support YOU share here as well!

Yes this happens to me.  Worse with large or carb-rich meal and moreso in the morning.  Eating smaller meals with more fats and protein helps me--along with plenty of fluids with my meal.  For me it's of course worse when I am in a flare up, but I do notice it even when not in a bad flare up.

When I am in a flare up my blood pressure on standing increases along with hr, and my blood volume is low--I benefit from salt and extra fluids--that brings my bp down.  Crazily, I will also feel dizzy even tho my bp is high (not dangerously high --generally no higher than 150/90).

 I usually get two bags (which I think are 500 ml each--??) about every other day when I am in a very bad flare up.  For me it provides relief that can last about a day.  I still don't feel normal but it prevents me from feeling so badly that I have to lie down constantly.  Along with continuing to drink fluids as well.

Typically I get the fluid over a 4 hour period.

@Sarah Tee--it may or may not be that bad.  And there are medical solutions that can help.  For me perimenopause was the worst--bc of irregular and heavy and long lasting periods.  And I think bc my hormonal state was in so much disarray and flux my POTS symptoms were about the worst ever, during perimenopause.  I actually in some ways feel the best I have felt for years.

Welcome to the forum.  

I'm sorry about the loss of your dad and that he experienced so many disabling symptoms without answers.

It may be hard to separate what is being caused by EDS and what by menopause. 

I haven't been diagnosed with EDS (although may have it, never had testing done) but I am experiencing menopausal symptoms (I'm 54).  For some women POTS symptoms improve with menopause and I think that has been the case for me.  I do have temperature regulation problems when in a POTS flare (can be either freezing or overheated, frequently) but I am also experiencing this now with menopause--although it's generally only at night--after sleeping for awhile--I can wake up feeling hot.  My menopause symptoms are otherwise mild so far anyway.  Hope your gynecologist can be helpful.

For me with yoga, I just pay attention to how I am feeling on any given day.  The thing that is great about yoga is there are many options and poses.  You can move as slowly as you need to, etc.   I feel better when I am at least doing 10 min of yoga daily.

Welcome to the forum.  

Staying active is important but it can be a delicate balance bc many of us can feel a whole lot worse after over doing activity.  Are you able to stay well hydrated including increased salt (as your dr recommends) while working?  A 10-11 hour shift as a vet assistant sounds like it would be exhausting for most people frankly!  Since the economy seems to be strong still maybe another less active job that pays as well is possible, giving you more energy to work towards your other goals?

I am able to work full time, but I have had some very bad relapses/flare ups preventing me from working.  My job is a mix but mostly a lot of sitting.  That has allowed me to work even when not feeling great.  There is no way I could do the work you are describing even if in a mild flare up.  

For exercise most days, I walk and do yoga.  

Compression garments can be very helpful.  Hope you can try that soon and see how you feel with them.

Hi MDmom

Welcome to the forum.

If you don't get a response, you might want to search for past discussions.

Here are a couple that may be interesting or helpful

https://www.dinet.org/forums/topic/29493-new-neuroscience/

https://www.dinet.org/forums/topic/20636-abdominal-epilepsy/

I've had nausea and other GI symptoms when in a flare.  In fact I often lose weight when in a bad flare.  The only things that helped were small more frequent meals, low carb foods, and lots of fluids and salt.  IV fluids also help me a lot--although not sure how much they helped with nausea/GI symptoms.

23 hours ago, Sarah Tee said:

Thanks, @MomtoGiuliana, that’s great. Did the person you were researching it for end up trying it?

That's a good question.  I am not entirely sure now.  She tried so many different treatments and I am really not sure what if anything worked for her.  She went into a remission for several years but then went into a very bad flare that so far has not resolved.

One of our past moderators did use this medication and it really helped her.  She is no longer active on the forum.  But there are posts she wrote.  Here is one she responded to

https://www.dinet.org/forums/topic/28051-is-octreotide-good-for-pots/

There have been a lot of past discussions on the forum about this treatment that may be helpful.  

https://www.dinet.org/forums/topic/19582-my-results-with-octreotide-after-two-weeks/

https://www.dinet.org/forums/topic/18241-octreotide/\

and lots of others.  Probably you have already done some searching but just pointing out for you or anyone else interested in past discussions.