Question For Those With Dizziness

[HopeSprings]

I may have asked this before, but can't remember. Does anyone else feel dizzy all the time, rather than just episodically? I don't mean vertigo or the type of lightheadedness you get from standing up, but that weird, spacey, floaty, drunk, can't focus your eyes kind of dizzy. As I was walking outside today feeling this thing I always feel, I felt so alone. It's hard for me to imagine there are other people feeling this way too. It's been with me for 14 years morning, noon, and night. I tried in vain to see another ear dr. today - I won't even get into how frustrating and disappointing this appointment was - you all know. So does anyone have this as a constant symptom? How have you learned to adapt to it?

[jenglynn]

I am sorry Naomi. Did I read that right that you have lived this way for fourteen years continuously? I can't even imagine.

I also have constant dizziness that is always with me but only since I was diagnosed... Diagnosed with POTS in July 2011 but didn't start getting disabling symptoms until Oct. Since then, I have been dizzy all the time. A lot of the times when I am looking at something, it looks like I have 2 or 3 in my hand, eyes won't focus correctly, and like I am just kind of blindly trying to make my way from A to B when I was able to go outside to do anything. It has only been a couple of months for me and I just can't even imagine how you've tolerate for as long as you have. ((((( HUGS))))) I don't know if you get relief from lying down, but that is the only way I do. If I am lying down in bed then I don't have the feeling. Any other time, even sitting in a regular chair, wheelchair or especially walking, it's with me.

Jen

[julieph85]

I've had pots for 2 years but since October i've been dizzy constantly. It's like a general light headed feeling that I always have with me except when i'm laying down. I also get bouts of extreme dizziness when I move my eyes suddenly, like look up from looking down, or If I turn my head suddenly. It is miserable and I think the same thing when I go out in public! I wonder does anyone else feel this way and why is this happening to me?

[Tzipora]

I've been dizzy constantly since last March, right before my 21st birthday actually. I'm completely unable to drive at this point and have a rough time riding in the car too. It's not vertigo and it's there all the time but movement makes it even worse. I HATE it! I only just got diagnosed so I am hoping maybe something will help but who knows... I hate it. I feel like I can't do anything at all anymore. As I type right now I feel like my head is so lost in a cloud. Makes me feel "stupid". I'm due for an eye exam I suppose but I don't even know if it's worth it because my real vision troubles are not the kind of thing a new prescription is going to help. Before it became constant I would sporadically go through spells of wonky vision. Now my vision varies and the severity of the dizziness varies at times too but the dizziness is ALWAYS there. I've started waking up in the middle of the night with it really bad sometimes too.

[anna]

I have been constantly spaced since I can remember. I can remember sitting in class at junior school (7/8) feeling like I was not in my body and trying to see the words on the board, but the actual dizziness that causes my vision to really fuzz up that make me feel sick I only get periodically.

My one son was a major dizzy space head for a number of years Dr. put it down to ANS stuff, but it was making doing anything quite difficult. After trying one thing and another we found specialist tinted lens glasses worked well to reduce the dizziness. My son has high functioning Autism and we had heard about this therapy, so thought we would give it a go, he found instant relief when they found the right colour and contrast for him, now he uses the glasses when he is very symptomatic and finds he can concentrate as well!!

All 3 of my children have found that the tints help reduce the fuzzy head thing, all my children are diagnosed with Dyspraxia but we think the dyspraxia is an ANS dysfunction symptom as it waxes and wanes with their autonomic symptoms!!

[Katybug]

Hi Naomi,

I had that feeling constantly for about 4 years (drunk, dizzy, floaty, spacey). Just recently, since I have started to have some better days, I have been without that feeling for periods of time (some says I don't have it at all right now.) It gets worse/comes back when I am tired or have done too much because I was feeling "better" that day. I still have it constantly on the "bad" days. The only two things I can definitely link it to are my level of fatigue and my level of cerebral perfusion. When I have the cognitive issues like word search and slurred speech, this drunk, dizzy feeling is always worse (that's why I think cerebral perfusion.)

As far as adapting...hmmmm. I won't drive anymore when I feel like this because I feel like my reflexes are delayed (the docs swear my reflexes are fine but it doesn't feel that way to me when cars are whizzing past me at 70 miles an hour on the beltway!) For me, the driving with this particular symptom was the scariest part of it because I feel like I am a fraction of a second behind the rest of the world. I try to get as much rest as possible when I feel like this mostly because I know this is the precursor to much worse things to come if I don't cool my jets. My compression stockings help a little so I wear them during the day even if I'm laying around the house. Salt loading/fluid loading helps to some degree too (which I do everyday but I can tell when I haven't loaded up enough because this is definitely one of the first symptoms to get bad.) Because I also experience the cognitive issues with this sensation, I now keep a detailed calendar of appts or dates I need to remember and I also write myself notes and make to do lists because I'm so used to the feeling that sensation that I sometimes don't notice that I am "3 sheets to the wind" and won't remember what happened or a name/date 5 minutes later.

[brethor9]

Hey Naomi!

Hugs! Just wanted to sympathize!! I too have this as my 24/7 worst symptom for almost 5 years......it is horrible to walk around feeling stroke-like symptoms every minute of the day....I would love to get some relief from it one day Hang in there...

Bren

[kmichaelson]

Hi Naomi and everyone, Yes, I do have dizziness constantly, and I totally feel for you! I've had mine for about 2 1/2 years, but I was just finally diagnosed with POTS in October. I can totally identify with going to the ENT, neuro, etc. for answers to no avail. Unfortunately I haven't found much that helps. I've tried antivert, but that doesn't seem to do much for me. My neurologist thought I was having vestibular migraines, so I tried some anti-migraine meds as well, but that was before I knew I had POTS, so really I think POTS is at the root of it.

Actually this morning as I was trying to get out of bed and feeling extremely dizzy and nauseous, and thinking about why this is so bad. Like others have mentioned, I feel like it's an issue sometimes of my eyes trying to focus or refocus. A doctor I went to once noticed that my pupils react very differently to light (during the test where they shine a light in your eye), and I was wondering if a lot of my dizziness is due to my eyes not working together properly to focus on things. It seems like this could be a function of the autonomic system... anyway, just thinking 'out loud' here.

(Edit: I would say the eye issues would be in addition to the blood not reaching our heads since we know that's an issue, but again, I'm just typing as I think.)

This constant dizziness is definitely my most troublesome symptom, and I feel for you for having dealt with it for so long! I hope working together on this forum, we can find some relief!

[lgtaylor100]

Naomi - I think you are an amazing woman that you have had this symptom for 14 years and are still pushing forward looking for answers and raising two children at the same time.

I also have the constant dizzy, foggy, spacey feeling. It rarely goes away. Sometimes in the evening when I am lying down I feel a little better. I have had this for a little over a year and a half and it has been an enormous struggle.

I would like some relief but no luck so far.

[HopeSprings]

While I wouldn't wish this symptom on you wonderful people, it's comforting to not be the only one.

Anna - Those glasses sound interesting. How does that work? And what type of Dr. deals with this?

Katy - great you're having better days and less dizziness! What do you think is helping?

[Clairefmartin]

Just a random thought regarding the cerebral profusion - have you been checked for a Chiari Malformation or had your corrotid(sp?) arteries scanned?

I have this feeling a lot as well, and I always chalk it up to not enough blood in my brain and fatigue. Resting/sleeping seems to reset my body some days, and i will start the day feeling clear headed, but by afternoon, can't think.

Very frustrating, I hope you find answers! Best of luck!

Claire

[Katybug]

Hi Naomi!

Let me first qualify "better days"...I can leave the house by myself 3-4 days a week right now for about 2 hours at a time. More than 2 hours is asking for trouble (and the trouble usually starts with this sensation you are describing of being dizzy/drunk/disoriented.) BUT, I'm not complaining as I was house-bound (except for when my mom would take me to the docs or to run to the pharmacy) for 3 1/2 months, so any time out and about is great!

Two things that I started doing differently was forcing myself to walk my dog and we found a better profilactic migraine med for me.

I was already doing the recumbent bike but that never really makes me feel like I am getting a workout (I was reallly fit before all of this.) But, my poor dog really needed some activity as she is a working breed. So, I started getting up really early to avoid the heat in early Sept., and would take her to the end of the block and back. It may have only been 5 minutes at first. Since Sept., we have worked our way up to longer and longer walks. Our major victory was this past weekend at the State Park Trail where we actually made it for 40 mins. and 2.5 miles. I cried some happy tears at the end. There are some days, like yesterday and today when I could only do 15 - 20 mins. because I wasn't feeling too well, but, I still try to do some so I don't backslide too much. There were days that I had to sit down on the curb and take a breather and I am careful to pay attention to what my body is telling me...if things are going down hill, we turn around and go home. Now, with cooler temps, I wait until afternoon so I don't get cold and spend energy shivering (shivering always makes my POTS go nuts.) I also accept the fact that I will feel like "ick" when we finish our walk but I am willing to deal with it for the benefits for me and my pupperdog. When I stop walking, I almost always crash to some extent because I have sudden pooling in my legs. This is how I know when I can go a little farther...if I don't crash for a few days then I know I can start going a little farther. It has been hard some days but I push myself as hard as I can without it being dangerous. I have to say that seeing the progression has also helped me mentally...like maybe there's some hope for me yet!

The migraine med, Depakote, doesn't help my POTS symptoms but I was getting severe migraines 2-4 times a week so not having the migraines seems to be allowing my body to deal with POTS a little easier. I don't have severe pain on top of all the shaking, dizzy, pre-syncope, tachy.

So, no big medical revelation. I just knew I had to try cause I was not getting better on the couch and I was bored to tears. I sometimes wonder if its just a fluke that I am going through a good spell. But, I just take what the day deals me and try not to worry about how I will feel tomorrow. If I can walk the dog, get coffee with a girlfriend, and go browse Target for 1/2 hour then I do. If I pay for it tomorrow, oh well. I still struggle the other days each week but I'll take the baby steps.

I hope you can find something like this that works for you.

[ramakentesh]

Pretty normal description Im afraid although with me I tend to get episodes that improve after time. When I had my first tilt table they did a simple ultrasound that they used to measure blood flow reductions in the carotid arteries on tilt. Mine reduced by a fair bit.

Abnormal cerebral autoregulation, reduced cerebral blood flow either permanently or in fluctuations caused by the autoregulator deficits explain this. some patients can also experience hypocapnia posturally.

[chipper]

-Naomi,

When I first discovered that there were so many that suffered with this illness, it was heart breaking and still is, but the support on this site is amazing. Yes, dizzy is constant. Lying for some time will usually make it much better. The riding on wave type is there, when lying down, caused by being upright too long. My dizziness is better. Constant dizzy, with no relief, was with me for sooo many years. So sorry for your suffering. I will never give up on our experts that are trying to help us. One of my sons is a scientist, that picked his life's work, because of seeing the great need for medicine through my illness. Much good can come from being sick but that does not make it any easier. Sometimes this seems like a bad dream. Hoping there will be a better day soon, With love, Mary

[HopeSprings]

How come people are getting their brain blood flow checked left and right and when I ask Dr's for this test, they look at me like I'm speaking a foreign language? If someone could SHOW me that blood wasn't making it to my brain, I'd feel satisfied - at least this would make sense!

I did have the carotid doppler, but was laying down. Chiari didn't show up on MRI.

Katy- It's admirable that you've pushed yourself a bit. So many people have said that exercise has helped them.