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Aida A

POTS and vertigo!!!

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Hi all, 

Is POTS associated with vertigo! I've been suffering from bad vertigo since started to suffer from POTS symptoms. I was diagnosed with a tilt table test. My vertigo is almost every day but waxes and wanes. It feels like I'm floating in water and sometimes dizziness with right head turn with tinnitus. It gets worse when I'm on my computer or cellphone and when shopping. I stopped driving due to this issue. When it's bad I have imbalance in my gait. It's frustrating. When I get these vertigo episodes my BP and HR is usually normal like 108/78 and HR in the 80s which makes everything more confusing. My neurologist thinks it's vestibular migraine and started me on lamictal. I also take zoloft and read that dizziness is one of the side effects. When the episodes are bad, I'm unable to move a lot from bed and can't go to work. I'm worried that I'm going to lose my job over this problem 😥

Do you guys experience similar thing and what do you do to help with it?

Your input is appreciated. 

Thanks,

Aida

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I was diagnosed with vertigo before I was diagnosed with dysautonomia. In fact, it became a significant part of the diagnosis. My primary made the initial diagnosis with a Dix Hallpike test right in his office. I do have gait and imbalance problems, I have short term memory problems and sensory overload, especially to vibrations and loud sounds. The cardiologist, EP, neuro, primary, ENT and DPT are all working as one team to keep me from tripping and falling over, nobody denies vertigo is part of my symptoms. The good news is that it does get better with treatment. I go to physical therapy for balance and core, I make an effort to reduce my sensory overload triggers, and I have a script for low-dose valium (diazapam 2mg) which is a muscle relaxant. I take a half-pill to start and it's enough to take the edge off of my reactions to vertigo producing stimuli. For sensory overload reduction I shop stores at their slowest hours or have most things delivered, I wear shades when it's bright or I am in a brightly lit store, and I also can add sound-muffling headphones which I sync with my phone--I put on music just loud enough to cancel out the sound of voices around me. Good luck. Vertigo is an awful feeling but you can get help for it. 

PS...there is an OTC motion-sickness drug named Bonine which you may find helpful in the meantime until you can get a diagnosis. 

 

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18 hours ago, WinterSown said:

I was diagnosed with vertigo before I was diagnosed with dysautonomia. In fact, it became a significant part of the diagnosis. My primary made the initial diagnosis with a Dix Hallpike test right in his office. I do have gait and imbalance problems, I have short term memory problems and sensory overload, especially to vibrations and loud sounds. The cardiologist, EP, neuro, primary, ENT and DPT are all working as one team to keep me from tripping and falling over, nobody denies vertigo is part of my symptoms. The good news is that it does get better with treatment. I go to physical therapy for balance and core, I make an effort to reduce my sensory overload triggers, and I have a script for low-dose valium (diazapam 2mg) which is a muscle relaxant. I take a half-pill to start and it's enough to take the edge off of my reactions to vertigo producing stimuli. For sensory overload reduction I shop stores at their slowest hours or have most things delivered, I wear shades when it's bright or I am in a brightly lit store, and I also can add sound-muffling headphones which I sync with my phone--I put on music just loud enough to cancel out the sound of voices around me. Good luck. Vertigo is an awful feeling but you can get help for it. 

PS...there is an OTC motion-sickness drug named Bonine which you may find helpful in the meantime until you can get a diagnosis. 

 

Thanks a lot WinterSown for your reply! No one seem to know what causes my dizziness! some blame it on anxiety and other on zoloft and some on migraine. They keep throwing on me medication in hope that something will work. I'm tired of this and can't go on with my life like this. I just hope one day I wake up and it goes away on its own. 

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Hi @Aida A, I've experienced a few different types of vertigo over the years with my POTS and migraine. My POTS related vertigo makes me feel like my head is all over the place and is directly related to a physical thing that I have done (walking, lifting something, going from laying to standing, etc.) and it affects my overall level of consciousness.

Then I have what I think of as my migraine associated vertigo, and these are episodic and can come in clusters, and they're always random. I can be working on the computer and then suddenly it feels like everything just tilted off axis or on bad ones I can get a sudden feeling in my head like I just rolled over backwards or something. These ones usually don't affect my level of consciousness at all but they can be either mild or quite strong, and often happen when I'm just sitting and looking at a computer for too long, or if the weather is off.

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My daughters have been dealing with vertigo for the past 10 years.  It has morphed into different types over the years, but what we do know is that POTS has a whole lot to do with it.  Several years ago, my youngest had a horrible bout with gastroparesis, had a feeding tube for 2 months.  During that time, her diet was anything but normal.  She craved ramen noodles and Lipton noodle soup.  During that time, she had been dealing with horrible vertigo as well.  As the weeks went on and all of this salty soup was consumed, I noticed that her vertigo had improved some.  It wasn't gone by any means, but better.  She was moving around the house (no rides in the car yet, or normal activities) without as much caution.  I started looking up vertigo and high salt intake.  I stumbled across POTS and here we are!  The two definitely go hand in hand.  Make sure you are consuming enough salt, as it might help.  My girls also take a benzodiazepine and use meclizine.  The oldest recently saw an epileptologist, as an EDS/POTS savvy cardiologist recommended her to him in case the vertigo was a form of seizure.  After seeing him the other day, he thinks it might be a complex issue of POTS and migraines.  He was trying to explain it to where I could understand, but, even after researching every day for 10 years, it was a bit much!  He said it is not a simple POTS or migraine issue, it's very complex, he said.  She's going to have an inpatient EEG study to see if he can pinpoint the issue.  He would like to do a TTT while my daughter is hooked up to the EEG leads so that he can watch her brain activity and her blood pressure/heart rate all at once.  That being said, my daughter is having a hard time convincing herself that it would be a good idea.  Not sure how your TTT went, but it took my daughter weeks to recover from hers.  All this being said, it is possible to function with it, but that may include different meds.  Make sure you are doing everything possible for your POTS.  Are you on florinef or any beta blockers?  Good luck to you!

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A number of years ago I was diagnosed with endolymphatic hydrops, this condition for me is accompanied by tinnitus and sensorineural hearing loss (SNL). (ENT convinced autoimmune SNL but could not find evidence)  So yep will need hearing aids soon, I am in my mid-40's and my hearing has been waxing and waning for the last 12 years.  From time to time I do get vertigo also.  Not severe vertigo like those who develop Ménière's disease, like my Mum who on her first attack the vertigo was so severe that she could not stand up due to the spinning room and severe vomiting.   She now takes stemital and this seems to curb the severity of the symptoms.   

My night time balance is not good.  I used to be able to get up the stairs in one piece in the semi-dark.  I now loose my balance if I try this nowadays.  If I am moving around, turning to the left and right I can feel dizzy (not dysautomia related) and become a little unstable on my feet.  Closing my eyes for a moment helps. 

I do get ocular migraines, where I get an aura only but no headache - lol kinda out there with the aura shapes.

 

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Dear @Shepard1 - this sounds absolutely awful, I am so sorry you have to go through this!!!!!

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On 4/8/2019 at 3:52 PM, Aida A said:

I also take zoloft and read that dizziness is one of the side effects

Hi Aida,

I have always just experienced plain lightheadedness/presyncope rather than vertigo - there is a definite difference, many on here will know exactly what I mean - but lately I have had some vertigo type symptoms as well - a bit like being on a boat or moving when you're not. 

Is the zoloft a recent addition and do you feel it is helping in any way? It certainly could be a side effect and may be worth discussing with your doctor. I am a bit leery about the use of antidepressants in dysautonomia - I did try fluoxetine and zoloft early on in my illness, not for the depression which is a natural response to being unwell, but because there is a school of thought that they can favourably modulate the ANS - however they did not help me and I came off due to feeling uncomfortable about being on psychiatric medication when we already have enough difficulty with some doctors mistaking our disorder for a psychological one, even after we are formally diagnosed. 

I would definitely have remained on them despite any stigma if they had benefited me at all though. 

I hope you find something that helps. I may try the otc remedies suggested above myself. 

B xxx

 

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3 hours ago, bombsh3ll said:

I am a bit leery about the use of antidepressants in dysautonomia - I did try fluoxetine and zoloft early on in my illness, not for the depression which is a natural response to being unwell, but because there is a school of thought that they can favourably modulate the ANS - however they did not help me and I came off due to feeling uncomfortable about being on psychiatric medication when we already have enough difficulty with some doctors mistaking our disorder for a psychological one, even after we are formally diagnosed. 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3956655/

Dear @bombsh3ll - this article describes a bit more in detail why the use of SSRI and SNRI is helpful in the treatment of POTS. They are not actually used as "psychiatric" medications but rather because of their ability to regulate neurotransmitters. I myself have taken Lexapro for years for POTS and my sister has greatly benefitted from Buproprion for the treatment of her POTS. It has proven to be helpful for many people suffering from dysautonomia.

Here is another, more simple, explanation from standinguptopots: Quote: 

Antidepressant medications: Bupropion (Wellbutrin), Paroxetine (Paxil), or Sertraline (Zoloft)  These medications can help people with POTS who are prone to fainting by raising the blood pressure and modifying the brain’s response to low blood pressure signals. They are also beneficial to those who have depression or anxiety issues. ( end quote ). 

Many people feel uncomfortable taking psychoactive medications due to others labeling them as "crazy" if they take them. However - in the treatment of POTS the use of SSRI/SNRI is due to the influence they have on neurotransmitters causing dysautonomic symptoms and there have been many studies conducted to prove their effectiveness for the treatment of POTS. 

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35 minutes ago, Pistol said:

Many people feel uncomfortable taking psychoactive medications due to others labeling them as "crazy" if they take them. However - in the treatment of POTS the use of SSRI/SNRI is due to the influence they have on neurotransmitters causing dysautonomic symptoms and there have been many studies conducted to prove their effectiveness for the treatment of POTS. 

Hi and thanks for sharing the article! It was this reasoning that led to me trying the SSRIs in the first place, & had they helped then I would have happily continued to take them irrespective of their licenced use. I know a lot of people report benefit and I certainly didn't mean any disrespect towards anyone taking this class of medication whatever the reason if they find it helpful. For me though, I chose to stop due to lack of benefit and secondarily the perception by less well informed healthcare providers on seeing an antidepressant on the prescription list, which sadly I know from my working days happens. 

I do take as required diazepam which equally carries psychological connotations, but the difference is that does help me, so that outweighs however it might be perceived. 

I also think in many cases, people with POTS are on SSRIs as a result of initial misdiagnosis, & once their condition is correctly diagnosed they remain on them as either the prescription is never reconsidered or they try and come off and experience withdrawal symptoms which make the therapeutic value of the medication appear greater than it actually is.

I have had a look at the study above, & it seems to conclude sertraline showed no symptomatic benefit despite altering clinically measured parameters. As far as I am aware the only evidence supporting the use of SSRIs in autonomic disorders is anecdotal & no formal studies have demonstrated symptomatic improvement, but I could be wrong & would still be really interested to read any studies that do show symptomatic benefit though, if anyone has come across any. 

B xxx

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Aida,  I am so sorry to read of your suffering.  I would not wish vertigo on my worst enemy.  I was diagnosed with POTS 13 years ago.  Vertigo was and continues to be my most challenging symptom.  Over 13 years, I have been treated by 4 different neurologists and tried what seems like hundreds of abortive and preventative migraine treatments.  Nothing has taken the vertigo completely away.  The doctor has stated he feels my condition is permanent. Thru therapy, I have re-focused my efforts on living the best life I can within the confines of my symptoms.  I have not worked for several years now, nor have I driven.  I continue to receive periodic physical therapy for balance issues. I pray that you continue to remain strong, and I pray for your recovery.    

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Hi Aida, I'm so sorry you're dealing with this. I can relate strongly to that feeling of floating (I felt like I was on a tilting boat and couldn't get off). I had to walk holding onto the walls when it was acting up, and it also seemed to happen regardless of what my stats were like. Mine seemed to track very closely with how bad the POTS symptoms were though...it actually improved significantly over time (although now that I'm having a POTS relapse, it's more noticeable again). One doctor suggested vestibular rehab might be of possible help, although I didn't get the chance to try it yet. I'm also curious whether your neuro ever thought any kind of vertigo or balance testing might be helpful in pinning it down?

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On 4/9/2019 at 10:16 AM, Aida A said:

Thanks a lot WinterSown for your reply! No one seem to know what causes my dizziness! some blame it on anxiety and other on zoloft and some on migraine. They keep throwing on me medication in hope that something will work. I'm tired of this and can't go on with my life like this. I just hope one day I wake up and it goes away on its own. 

You may want to see an ENT and have your ears checked for abnormalities. I've met some wonderful ear doctors along the way. ENTs are very sympathetic to patients with vertigo and balance issues and will set up the right tests to determine cause if there is something physically wrong. They can also prescribe PT to  help diminish your symptoms and get you strong enough that you can catch yourself and not careen over and smash onto the ground. 

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