Some Tentative Good News

[Sparklingsunshine]

I'm hesitant to jinx things but I've spoken several times on the forum about my battles over the last two years with dizziness and severe balance issues. Which literally came on overnight. Was diagnosed with Vestibular Migraine which I've never really accepted, I think the Neurologist and ENT consultant both added together the fact I was dizzy 24/7 and the fact I get migraines and made 5.

I tried several meds, struggled with side effects, unfortunately I'm very med sensitive, finally went on Venlafaxine very reluctantly in January 2023 and saw a lot of improvement in migraine frequency but no great improvement in balance and dizziness.

In October I decided to start coming off it, very gradually as Venlafaxine can be notoriously difficult to quit. I took several months to come off 112.5mg a day. Had my last 9mg tablet a few days ago.

I also decided to see a Chiropractor about my neck. I have Ehlers Danlos and my Vestibular Physio suggested cervical spinal instability could be causing many of my residual symptoms and put me on a waiting list to consult with a Rheumatology Physio. Knowing this was likely to be a long wait, plus as she's based at Oxford and I cant get there anyway there didnt seem much point.

I've seen the Chiropractor twice, going again next week, she's manipulated my neck, done some deep massage and heat treatment and I've not experienced the neck pressure and balance issues for several days now, which feels so wonderful. I'm just hoping it lasts 🙏

[GlowCoach Administrator]

I've had previous success with various issues with a chiropractor but unfortunately didn't last.

Now trying omega 3 which I was found to be deficient in and keeping fingers crossed. It takes many months to work. Its early days but I do have a good feeling about it.

[TiggerMe Ambassador]

This is great news 👏👏

I finally took myself to the local chiropractor 3 months ago and she has worked wonders... it's remarkable the things they pick up on and correct... non of my neck was correctly stacked which can cause migraines and histamine issues, I had a rib out of place and my pelvis was all seized up!

[Buddy195 Administrator]

I’m so pleased SS; really hope the adverse symptoms do not reoccur 🤞

[FallingInReverse]

Love hearing good news! Enjoy it!

[Charlie-Farley]

I had a lateral pelvic tilt (looked like a typewriter with carriage to one side). Chiropractor sorted it in two sessions. If it works- boy it works! I’m keeping fingers and toes crossed for you. 🤗

[Sparklingsunshine in reply to Charlie-Farley]

Thank you, I'm not going to lie I've had some very dark moments over the last two years, it really felt like what was the point when I couldnt function or do the things I enjoy.

I'm used to physical limitations due to other conditions but the dizziness and balance issues were unrelenting 24/7. I used to dread having to get up off the sofa 😪. I only felt " normal" if I was seated or in bed.

I could feel my personality changing and becoming someone I didnt want to be. I'm sure that will resonate with many of us battling thyroid or other conditions.

[Charlie-Farley in reply to Sparklingsunshine]

I can totally understand that- I gave myself a year to get sorted when crashed through gross under medication. Having been left on 25ug of levo for 6 months, my tank was empty. My husband fought for me and got me the dose increase I needed and thank goodness I found this forum….. I am good now but will never forget and hope with all my heart you continue to improve 🤗

[Batty1]

Im currently suffering with bouncing vision do you have this issue?

[Sparklingsunshine in reply to Batty1]

I have had, also supermarket syndrome, which has now gone was one of the worst symptoms for me.

[Batty1 in reply to Sparklingsunshine]

Supermarket syndrome??

[RedApple in reply to Batty1]

alteaphysio.com/visually-in...

'Visually induced dizziness or supermarket syndrome is caused by the complex and visually stimulating environment of a supermarket. This environment can overload the brain with too much information, making it difficult to process sensory input properly.'

[Sparklingsunshine in reply to Batty1]

Yeah symptoms of dizziness, visual vertigo, nausea, disorientation and balance issues in busy environments with lots of patterns, colours, people, movement, lights, noise. In visual rich situations. I found my symptoms were worse indoors, better outside as there's more space and its less oppressive. Its known as supermarket syndrome. I'm guessing its a kind of sensory overload.

[Batty1 in reply to Sparklingsunshine]

Wow never heard of this…so interesting

[humanbean in reply to Batty1]

Im currently suffering with bouncing vision do you have this issue?

Could you have nystagmus?

en.wikipedia.org/wiki/Nysta...

I don't know anything about treatment, but it might be worth you researching the condition if it has symptoms that are similar to yours.

[McPammy]

Have you got your latest thyroid blood results. Are your levels optimal do you know ?

Could it be your thyroid hormones need checking to help with your many symptoms.

[Sparklingsunshine in reply to McPammy]

No its not thyroid, had my levels checked and tweaked them. I've had high in range T3 and T4 and its made no difference. The chirocpractor resetting my neck has helped massively though.

[McPammy in reply to Sparklingsunshine]

Oh apologies. I read your account and it said hypothyroidism. I was just thinking maybe your levels are not optimal.

[Murphysmum]

Hoping you pick this reply up Sparklingsunshine as it’s been a few months.

I’m reading this post as I sit suffering from another bout of dizziness. They’ve become much more severe recently and although some aspects fit the BPPV diagnosis, many don’t. Like the fact I’ve been like this for several hours now and have a full headache to go with it.

I anted to ask - how are you now? Did the chiro treatment work?

I have what I think is rather a stiff neck and a limited range of movement. Often just turning my head too far with induce dizziness that last a short time. But these spells that come on suddenly are new.

I’m on T3 only, quite a high dose, so I fear the GP may jump on that. But reading this post has ticked a number of boxes for me so interested to her how you are now ☺️

[Sparklingsunshine in reply to Murphysmum]

Well it comes and goes, its certainly a lot better than 2 years ago but its never gone away. However I might need some blood tests for antiphospholipid syndrome, APS for short, an autoimmune condition which causes sticky blood.

Balance issues can be a symptom of that and my medical history is suggestive that APS could be a possibility. I've never had dizziness or spinning feeling off balance when I'm upright or walking.

[Murphysmum in reply to Sparklingsunshine]

Hmm, sounds familiar.

The more severe dizzy spells I’ve had recently are like I’ve been playing that drinking game of spinning on a broom handle - the room properly spins and my eyes are tracking back n forth trying to focus, really horrible. But more often it’s more a feeling almost of my brain spinning in my head! Does that make sense? So like you, I’m not in danger of falling over, I just feel like my head is spinning, and it generally brings on a dull headache, predominantly at the base of my skull.

I wakened with the severe dizziness during the night last night, and this morning it’s just the dull spinning feeling and headache. I’m fairly sure this is low thyroid hormone as it’s always been a symptom for me, but the more severe stuff is new to me.

What are the other symptoms of sticky blood? I had surgery not that long ago so i’d have thought something like that would have been picked up, but maybe not!

I also suspect I have female hormones at work - they’re definitely fluctuating recently as I am of a certain age 😂.

I have a GP appointment later to rule out anything else but your comments regarding vertigo, and neck issues rang true, so I suspect this could be a possibility. It certainly sounds as if getting on top of that has helped you?

[Sparklingsunshine in reply to Murphysmum]

They have to test for certain antibodies so its not a standard test. Basically I had severe pre eclampsia in my first pregnancy, a miscarriage, a blood clot in my leg. Have bad migraines, pins and needles, joint pain, foot pain. It ticks all the boxes unfortunately. It needs diagnosing quickly as it can lead to strokes, blood clots on the lungs and heart attacks if left untreated.

[Murphysmum in reply to Sparklingsunshine]

Oh no, poor you that’s horrible. Ok, so don’t sound like my issue so that’s one thing I can rule out.

Let’s see if the GP can rule out anything else - like a simple ear infection, and I’ll take it from there.

Thanks for your help