Constant dizziness while upright

[Amyschi]

Hello everyone, 

This is my first post, so hope I am doing it correctly.   I suffer from dysautonomia, with features of POTS, but my main problem is constant dizziness.   I am just wondering how many out there have this as their primary symptom, even when you do not have low blood pressure with standing, but just whenever you try to move or do anything.   I can have POTS, but then also many times do not have the tachycardia, but am just extremely dizzy with loss of balance.  I have read in other information that vestibular problems are common with dysautonomia, and also that it can be due to the faulty circulation, but just wonder if others present this way.   I am a 57 year old female who has suffered mainly from dizziness since age 23, and then five years or so ago the dysautonomia symptoms came on; i.e. the orthostatic intolerance.  Just makes you wonder if it is two separate problems, very confusing.   Thank you to all out there who share their time and stories.  It certainly does help that one is not alone.   

Edited August 27, 2016 by Amyschi
Wrong subject title

[Amyschi]

So sorry, I gave this post the wrong heading.  Thank you

[MomtoGiuliana]

Hi Amy Welcome to the forum.  Is the title OK now?  It seems to be but just double checking!

Dizziness was a prominent symptom for me when my POTS was severe--including as you describe--not associated with standing but just in general.  But I had other symptoms as well, including rapid hr on standing, and general weakness.  I never had severely low blood pressure.  Have you tried medications or other kinds of treatment?

I do remember my doctor speculating a separate explanation for the dizziness, however I don't believe that to be the case, in my case.

[corina]

Hi Amyschi, welcome to DINET! It struck me that you mentioned knowing one is not alone as that's how it was for me when I joined this forum. It made everything so much more bearable. If you'd want the title of this topic to be changed please let me know (here or via pm) so I can change it for you (moderators and admins can do that for you).

Could the dizziness be caused by low blood pressure? Menieres could also cause dizziness of course. Have you been tested to figure things out? I feel that with dysautonomia there are so many things involved that it's difficult and exhausting (as in a daily task) to find out what is going on and what is causing what. Hope you will find the answers you need!

 

[Amyschi]

Thanks you  for the responses and welcome, and for offering to help me fix my title!  I discovered after I posted notice of the error, that I could just hit the "Edit" button and change it!  Sorry you both have to be here, but grateful and you are so right, this forum is so helpful.  I'm sure I will get a lot of useful info and tips.   I personally find that it is difficult for family and friends to understand, but all of you do.   I find being thankful for all the things I don't have to be helpful, as I'm sure you do too!   And isn't it absolutely amazing how having this condition makes you so grateful for little things, like just being able to get up and do something minor!

Interesting your responses on the dizziness, and you are right, it is very difficult to decipher whether things are from the dysautonomia or something else, but I personally think it all goes together.   I also have what I believe to be fibromyalgia due to severe muscle pain, but, as an example, the neurologist told me that having fibro is often confused with being due to neuropathic pain of the dysautonomia condition itself.    Although you are right, Corina, one could have other conditions along with it, such as inner ear Meniere's, but I don't typically have vertigo which would be characteristic of that ( I feel for anyone who has vertigo with their dysautonomia, the scariest).   And "mom." interesting, but unfortunate, that you have had the chronic dizziness also, not due just to standing or low blood pressure.   Sometimes I will even get what I call attacks where if I get dizzy laying down, my tachycardia will start up big time and I'll get extremely weak to the point where I can't get up, and that is without being upright, so there has to be more of a mechanism going on with these conditions that just getting the symptoms of POTS when you stand.   Not sure what your type of dysautonomia has been diagnosed as, but I feel for all.   Wishing you a good day -

[Kaitlyn]

Wow. It's amazing how similar your story seems to mine. It is so incredibly frustrating when you can't make sense of the symptoms or divide them up into reasonable piles. Ok this goes with that diagnosis etc. my main presenting symptom when I 'hit the brick wall' was dizziness and balance. It turned out I had Dysautonomia and POTS and a few other associated things, but I also have vestibular migraines. This is not related to an inner ear problem. It is basically migraines that can come with or without a headache with imbalance as one of the main features. I am in a constant state of it now and take maintenance meds (low dose benzos and Topamax) and then Decadron for rescue when I have a flare. I also can be dizzy lying down, rolling over, even just sitting, tilting my head back ... The list goes on and on and on. It is definitely NOT always related to low BP though I do have very low BP. I have been able to figure that much out for sure. Another thing is that the violence of the dizziness during a migraine flare completely trumps the lightheaded dizziness I feel with a drop in BP even if it drops to the point of passing out.

hope this was helpful in some way :-)

hugs

kaitlyn

[DizzyGirls]

Can really relate to everybody's symptoms!  My daughter's have had vertigo for years now. 

Kaitlyn - you describe perfectly my daughter's vestibular migraines.  There is no vertigo like the sudden onset of a vestibular migraine!

For anyone interested, I've been doing more research again on different kinds of vertigo, dizziness, lightheadedness.  We have been seeing a headache doctor at the university near us and he had mentioned, in an article that he wrote, something called "chronic subjective dizziness".  Looking at other articles in addition to his, it appears that it is started by vertigo, but the "chronic" part of it isn't necessarily considered vertigo (although, I believe there is a fine line between the two).  What my daughters explain in trying to describe what we have always considered "vertigo", is the motion of themselves moving/spinning, they really do move, you can see it (as opposed to the room).  It is worsened by any kind of stimuli (i.e. busy patterns (wallpaper, carpet, someone's shirt), music that is too loud (the bass is especially bad, can cause my youngest to pass out in a matter of minutes), environments that are too noisy, busy, hot, etc.) )  Apparently this "chronic subjective dizziness" (which, by the way, is exactly what my daughters describe) is treated by medications (namely SSRI or SNRI's), Cognitive Behavior Therapy, and Vestibular Rehabilitation Therapy.  In one of the articles I read, it said that Cognitive Behavior Therapy (CBT) doesn't work well if a person has had it longer than a few months (my girls have had it for years).  From what I've picked up, the CBT is to make sure a person doesn't avoid things because they are "afraid" it might make them dizzy.  My girls definitely don't fit into that category.  They will push themselves until they collapse because they like to do things (although, because of constantly pushing themselves, my oldest is in pretty bad shape.  Don't think CBT could have prevented that.)  This is where it gets interesting...SNRIs are prescribed when there appears to be an overload of norepinephrine being pumped into the body.  Sounds a bit like HyperPOTS to me.  I'll bet if they interviewed a group of people with "chronic subjective dizziness", think they might find a good number of them had a lot of POTS symptoms, too.  So, is it POTS or is it "chronic subjective dizziness" or are they all part of the bigger picture of "Dysautonomia". 

One of the articles that I read about this gave it the title of PPPD (Persistent Postural Perceptive Dizziness), but it's the same thing as chronic subjective dizziness.  It was given the name of PPPD in 2014.  That's how new all this research is.  I know a lot of you on here have a lot of trouble with either vertigo, lightheadedness, and/or dizziness.  It's an extremely debilitating thing to live with.  Reading these articles shows me that people are researching this and maybe one of us will stumble across one good doctor, who, through spreading the word on this site, might be able to help us all.  But, for now, when people share their symptoms and we can all brainstorm, find new studies/information or, at the very least, encourage each other and know that we are not alone in this. 

Hang in there!!!

Edited August 31, 2016 by DizzyGirls
change PPPV to PPPD (Persistent Postural Perceptive Dizziness)

[yogini]

Dizziness was my worst symptom. You also mention loss of balance which Is lsss common for POTS.  Before your orthostatic issues started did your doctors have thoughts about what caused the dizziness?

Everyone has different causes of dizziness. Mine is from pure POTS.  A more common cause of dizziness (and loss of balance) is inner ear issues. PPPV is an example of an inner ear condition.  The type of dizziness is often a clue to the condition.  With some of the ear conditions, you feel like you are spinning.  I feel like I am moving up and down, not spinning.  I don't think spinning is typical for POTS.

I was so dizzy that my doctor didn't think it was from POTS. I went to an inner ear doctor.  I went through 3 months of therapy which should have cured my dizziness, but it came back in full. That's when we knew it was POTS.  

Some people on this forum actually do have both inner ear and POTS.  I would encourage you to keep digging to find out the proper diagnosis for you.

Edited August 31, 2016 by yogini

[Kaitlyn]

This is definitely a challenging subject. No wonder we make the doctors heads spin as well. No pun intended. There are so many types of dizziness and as Yogini pointed out there are many different causes - inner ear being the first thing they did a whole gamut of testing on for me to no avail. In addition dizziness is a very difficult symptom to describe, at least I have it to be. Possibly because with the overlap mentioned, when you have a couple of different conditions that can cause dizziness of one form or another it is hard to separate and distinguish symptoms initially and challenging to articulate. I have experienced vertigo, and also a constant sway/motion but mostly I have what I call dizziness and imbalance.

Yes it sure would be nice if this were easier to diagnose and FIX. It can be overwhelming. I have a small Chiari that I am still not clear on whether or not it is impacting my symptoms and also stenosis in my neck (cervicogenic dizziness?) Dealing with daily Dysautonomia and POTS makes it challenging to do more discovery in these other areas. I guess all in good time.

Am I whining? Lol it wasn't my intention but thanks to anyone who listened ?

[Amyschi]

Thank you all for the info regarding your dizziness.   Wow, it is amazing how all these conditions go together.  I am so sorry to all who suffer from the varying degrees of dizziness because, you are right, it can be extremely disabling.   The vestibular migraine and any form of vertigo is especially disabling.   Like most of you, I have done quite a bit of research on different causes of dizziness and how it relates to dysautonomia.   I am sure there are separate conditions, such as the vestibular migraine, BPPV, and inner ear problems that cause a more severe and distinct type of dizziness from the POTS, but from what some of you have said too, such as Yogini, dizziness can be due strictly to the dysautonomia.   You definitely had to go the whole gamut to find out it ended up being the POTS, so like anything else, the cause has to be properly diagnosed in each case I guess.   I had to actually ask the neurologist I am seeing to do vestibular testing to see where the problem is originating from.   I think he just automatically thought it was from the dysautonomia, probably because I do not generally get vertigo (for which I am grateful, that is so scary and the worst).    When I first started having dizziness many years ago, it was not typical of inner ear vertigo, and tests showed a "weakness" in the ears, but nothing was ever definitely diagnosed.   So I then saw a neurologist (this was all many years "pre-dysautonomia" diagnosis) and he said, after typical testing for MS etc,, that I definitely had something wrong with my nervous system, but he just didn't know what.   (This was over 30 years ago, and I don't think dysautonomia maybe was even a diagnosis back then).  Then subsequently I just gave up and lived with it for many years, until being seen for the dysautonomia.   So I think it is possible that dysautonomia may initially present this way.   DizzyGirls, I am so sorry your daughters suffer from such a degree of vertigo.   It must be so hard for them, but they have a great advocate in you, that's for sure.   I agree about the "chronic postural perceptual dizziness".   This sounds a lot like what I have, and may be separate from the dysautonomia.   The one thing I read about this condition that I disagree with, however, is that is has a psychological basis.   You can certainly tell from your girls that this is not the case, that they do not avoid activities so as not to become dizzy - just the opposite.   I think the anxiety comes from having the dizziness all the time; not the other way around!  Same thing when doctors say anxiety is causing your dysautonomia symptoms.   I have read also that vestibular problems, not necessarily inner ear disease, are common with the dysautonomias.   It probably will turn out, as in your case Yogini, that the circulatory disturbance of dysautonomia causes a general lack of proper blood flow to the head, thus causing the chronic dizziness; that is just my gut feeling, of course.   It is a very complicated thing to decipher, and I appreciate all who chimed in.   If I find anything out from the vestibular testing, I will let all of you know.  

I just wanted to mention to Kaitlyn, or anyone else who has cervical arthritis/stenosis, that I find this definitely contributes, but to what degree I don't know.  I don't know how severe your stenosis is (mine is like 9.5 mm at C5-C6, I read anything underline 13 I think it was is abnormal), and a doctor friend of my sister's at John Hopkins, who is well known in these issues, felt this could be problematic.   So this is, as you said, another piece of the puzzle, as to what is doing what.  I had sent him my MRI and he was kind enough to look at it for me.   My sister has a friend whose daughter was dealing with dysautonomia for several years.   They finally checked her neck and found a congenital stenosis.   Well, she underwent surgery at John Hopkins, and was completely cured of her problems.  I know there is a lot of research into this area as far as a cause of fibromyalgia and chronic fatigue syndrome also.   I find there definitely is a connection, because when I try to type on the computer and my head goes forward in an awkward position, afterwards I cannot even walk and keep my balance, so something is definitely being cut off in the neck.   Same thing with the Chiari, of course, you have to wonder how much of that is contributing.   Again, very complicated.   This friend of my sister's was just a teenager, as your girls DizzyGirls.   I am just throwing it out there, and wondering if they have ever been tested in that regard?    Of note, too, I read where there have been others with the stenosis that have had surgery but the dysautonomia remained, so that is not always the case.   I so feel for anyone here dealing with more than one chronic condition causing dizziness - you are all a special breed!

Just a quick question too, has anyone had a "bubble test" done along with a cranial Doppler test?  I am a little leery of having that done.   They inject you intravenously with a gaseous solution and see how it passes through the heart/lungs and whether it goes up into the brain.    From what I read, I guess it is actually a heart test to check for a PFO (patent foramen ovale).  Just curious.   Thanks!

[DizzyGirls]

Amyschi,   So I just Googled spinal stenosis because I hadn't actually heard of it.  My oldest had neck x-rays done a couple of months ago and I will take them back to her chiropractor (who is really good at ready x-rays) and ask her about it.  She's the one that has identified a good many of my daughter's issues and where they are coming from.  I seriously think she has a photographic memory because she remembers everything that she's ever read!  Amazing!  Both of my daughters have been evaluated for Chiari and, so far anyway, doesn't appear that is the case.  Now, that being said, I do know that an upright MRI is the most accurate in diagnosing Chiari, but your insurance also has to agree with that and so far we can't the doctors, insurance, or anybody else to help us out with that.  I do know, though, that both of my girls have very hypermobile necks, thanks to EDS III.  I have seen tremors go away instantly when our chiropractor adjusts my daughter.  That is what is really confusing, too.  Seems her neck is having something to do with all of her muscle spasms, nerve pain, tremors, etc. 

Regarding the Chronic Subjective Dizziness (Persistent Postural Perceptive Dizziness) I totally agree with you that this is not triggered psychologically.  We have an appointment with one of the doctors that wrote a medical journal article regarding this and he agrees that there is an amount of psychological issues in people with this.  I am going to set the record straight that there is a dynamic group of people out there that suffer from "dizziness" and it is NOT as a result of anxiety or any other psychological issues.   No study needed.  Just spend an afternoon on this site, and that would be study enough.  I found one article that said they believed it is from dysautonomia.  The article our doctor wrote was just published in February of 2016, so he might as well be made aware that they are totally missing a whole group of people.  (Of course, I'll be nice)

My mom is 72 and her beloved family doctor diagnosed her with dysautonomia roughly 30 years ago also, but there really wasn't anything they did about it.  He read and read, but medical advances being what they are, took until now for these doctors to finally put the pieces together.  It's complex.  That we all know.  Hang in there and maybe we will all help these doctors put all these pieces together so that it doesn't take another 30 years for ourselves and our children to feel better. 

[Amyschi]

Hi DizzyGirls, Glad you researched the cervical stenosis, and yes, it would be good to mention it to the chiropractor as just one more possible piece of the puzzle.  I am so sorry your girls are dealing with EDS also; that may very well play into the whole picture, and I think it is great that you have a doctor in your chiropractor who is so good and willing to explore everything.   It does not surprise me that adjusting your daughter's neck helps with some of these issues.   I'm sorry that you cannot get permission for the upright MRI because, you are right, I think they do need to be done in an upright position to adequately rule out Chiari.  I could get insurance approval, I'm sure, but unfortunately there are no facilities nearby that do them.  

Amen to what you said on the PPPD.  I read too where they think it is psychological because what they think happens is that someone has an acute episode of dizziness and then for some reason later it becomes a psychological fear that they will always be dizzy, they can't do the proper physical compensation that is necessary, so it becomes a chronic perpetuating and "self-profilling" problem.   There may be cases of that, but you are so right that there is another whole group of people out there.   Very interesting about recent articles that have been published, especially by your own doctor, wow.   Would be very interested in reading that if you ever get the info.   I myself am kind of an interesting case as to whether or not it is due to dysautonomia or whether it is a co-morbid condition, as I basically had dizziness for many years, but not dysautonomia symptoms until the past five years or so, so the question is whether it is all part of the same syndrome with just different symptoms at different times?  My hope for your girls is that, being younger, they will outgrow most of this.   I find it really interesting that EDS runs in the family and also that your mom was diagnosed with dysautonomia too.  There must be a connection there, unfortunately.   So sorry for your mom, but also admire her for dealing with it for so many years.  I am encouraged that she is still rolling along with it at 72 - there may be hope for me yet!   Could I ask how she is affected and how she manages it?  Is she on meds?   I know there are more "elder-onset" forms of dysautonomia such as multisystem atrophy, but being that she has had it for many years, hopefully that is not the case with her.  Amen also for them to find more answers in the near future for all the unfortunate people who suffer from these very life-altering conditions.   Thanks for responding!

[DizzyGirls]

How my mom manages - hmmm... well, a stiff cup of coffee in the morning (caffeine helps), sheer determination, and, yes, a lot of meds.  She knows I need her and her granddaughters need her.  She may not be able to remember as well as she used to, but she is still a wealth of information.  She's printed out a ton of medical information that she's ran across over the years and she has a little box that she keeps instructions from her old, beloved doctor, as to how to treat some of her severe issues that have come up.  She's been dealing with headaches (migraines and other) since she was 13 years old.  Hope you do well and find some help soon!