feeling dizzy all the time!

[Aida A]

Hi all,

Since diagnosed with POTS and I feel dizzy all the time. Although other symptoms of POTS improved with exercise and lifestyle changes, I remain with this horrible dizziness! It’s all the time and even when my BP is fine (ex: 111/77). This does not get worse with postural changes. I feel like passing out all the time but does not happen (probably anxiety from the dizziness). My doctor thinks it’s some sort of a vertigo related dizziness but I don’t have the typical vertigo symptoms like room spinng around.I describe the dizziness as feeling that my body is floating, mild imbalance and feeling of dissociation ( like everything looks weird to me). the dizziness gets worse in closed spaces and markets. Not sure how to overcome this! I started migraine medication Lamictal for possible vestibular migraine but not helping! Does anyone experiencethe same thing and what helps with it? 

[StayAtHomeMom]

The thing that helped my dizziness was dramamine (motion sickness medication). Half a pill every so often. Prior to starting it I had constant dizziness for a few months. It was scary and irritating. Tried the medication and it cleared up totally within 2 months. I have not had it since. It has been 2 years. Occasionally I will feel it coming on in loud noisy places (like a local comic con) but I just take the half a dramamine and it goes away. 

Make sure you check with your doctor/pharmacist so it doesn't interact with anything you currently take. But it has to be worth trying. I doubted my pulmonologist because it was such a simple over the counter medication, but he is older and is a little old school. 

My dizziness was at all times as well. Would get worse with certain video games and being upright but I always had it. It was so bad I couldn't drive and barely could walk. It was definitely my most debilitating and frustrating symptom. Especially since I had lightheadness going with it. Luckily I never fainted. It is kind of surprising when I think back on it now. 

Good luck and I hope you feel better soon. Remember symptoms cycle. It will not last forever. 

[Guest KiminOrlando]

Do you have what they call 'low flow POTS'? I'm told that is a symptom. Of course, it is just one thing it could be. My understanding is that it has something to do with low O2 getting to the brain, I think... Hopefully someone here knows more about what I am trying to say than I do. I also have no idea how they test for it. 

Basically, I'm not much help.

Have you had a pulmonary functions test and everything is ok? Mine wasn't, but it is likely because of my autoimmune disease and not dysautonomia. I don't think a PFT is standard testing for dysautonomia, but it has been so long and my memory is foggy.

[Pistol]

@Aida A - I used to have this symptom, including the dissociation feeling, like walking under water … the dizziness ( almost like constantly falling through a trap door ) was actually the first POTS symptoms I reported to my PCP, months before I got it full blown. It is mostly controlled now with my meds for POTS but when it does return I take Meclizine ( Antivert ) and that helped. 

[bombsh3ll]

Hi Aida A,

Yes I too am constantly lightheaded even sitting, with normal HR and BP! I would love to know if anyone finds a solution to this. As a doctor myself I don't use the term "dizziness" as that can be interpreted as vertigo/spinning sensation which is very different both in symptomatology, cause and treatment. 

I believe it is due to cerebral hypoperfusion due to low cardiac output or "low flow POTS" as Kim mentioned above. 

Peripheral measurements of pulse and BP do not actually tell you anything about a person's cardiac output as stroke volume needs to be determined for that, which can only be done with invasive/complex tests. So no you're not crazy or alone for feeling that way despite normal readings, nor is your machine off. 

B xxx

[DizzyGirls]

So this is all very interesting!  My daughters have had vertigo since they were 12 (20 and 22 now).  Meclizine has kept it at bay for a long time, but recently has taken a nose dive.  Oldest has cervical instability (fused from C3-T4), but has been dealing with unrelenting vertigo, migraines, lightheadedness, tremors, etc.  Saw a neurologist at the Epilepsy Clinic at Stanford yesterday (came highly recommended by a very EDS savvy, well respected cardiologist) who thinks it might be a complex issue with uncontrolled POTS (which we thought was controlled) and migraines.  She'll be doing an inpatient EEG monitoring study soon and he mentioned doing a TTT while she's hooked up to the EEG.  My daughter is hesitant about that one.  The last TTT she had took weeks to recover from.  He didn't push her, just said if she was up to it, might give him more information.  Something to do with the way the brain and nervous system reacted along with her bp. 

We think a switch from propranolol (which just stopped working for both of them) to metoprolol may be an issue.  The metoprolol is a cardiac beta blocker, whereas the propranolol blocks all the betas!  Thinking the girls both need something to block more beta waves instead of just the cardiac ones.  Hope this helps, Aida.  We thought the girls' was under control, too.

Hi Kim! - I've not heard of low flow POTS!  Definitely going to have to go look that one up!

[Pistol]

14 hours ago, DizzyGirls said:

She'll be doing an inpatient EEG monitoring study soon and he mentioned doing a TTT while she's hooked up to the EEG.  My daughter is hesitant about that one. 

I spent 4 days in an Inpatients EMU hooked up to EEG and monitor. I did "score" an event  which was very helpful in determining that my seizures are non-epileptic but rather of dysautonomic origin. I actually think that doing a TTT while on EEG is quite smart - despite her understandable fear and possible long recovery. Plus it likely will cut down on the time she has to spend hooked up - as I said, I had to wait 4 days before I seized, in some patients it can take even longer.  

[bombsh3ll]

I think the more information you can get about what is going on, the better. I can totally understand your daughter not wanting to do another TTT - I also swore I'd never do another but I recently did during inpatient testing, as this was the only way they would draw my supine and upright catecholamines. It wasn't as bad, as it was only to 60 degrees, I also kept my compression tights on and had taken diazepam, which may have reduced its accuracy but made it doable where it otherwise would not have been. The kind technician also sprayed my face with cool water from my spray bottle that I use to help stay conscious during it whilst my hands were strapped down. 

An EEG during tilt is a great idea.  I would also love to know if anywhere does transcranial doppler during upright tilt to measure cerebral blood flow when tilted upright, as that would be really revealing in demonstrating the cerebral hypoperfusion that is not captured just by measuring BP and pulse. 

Best wishes for your daughter if she does go ahead with the testing. 

B xxx

[MeganMN]

I was reading more today about Orthostatic Cerebral Hypotension, which is a subset of POTS that is demonstrated by a lower than normal end tidal CO2 and lower brain perfusion but potentially normal heart rate and BP. Unfortunately, did not find any literature on how to treat it.  I am currently in the same boat- stabilizing heart rate, normal BP but almost.constant dizziness some days. It is when I am up moving around mostlh, and is NOT vertigo. It feels as though I will just fall over, like my head is 'buzzing'. Not fun.