Ataxia / menopause

[Tazwaz]

Is there any chance that menopause could efffect ataxia I'm going there the menopause but it seems like my ataxia symptoms have got worst my ataxia has been a slow progression but it seems different now hormones have affected me in all diffrent ways I was just wondering if it could affect ataxia symptoms

[HarryB Administrator]

Dear Tazwaz

Any stressor on the body can affect ataxia symptoms, for example infection, any illness, fatigue, low mood etc. These changes are not permanent. When the stressor improves ataxia symptoms will revert to how they were 'pre stressor'. With this in mind, the menopause can absolutely affect ataxia symptoms.

Best wishes

HarryB

[wobblybee]

I was going through menopause when ataxia symptoms hit..

I didn’t know what was happening to me, and couldn’t make any sense of it, not much was discussed re menopause, I was very depressed and confused, and at the time (late 90s) GPs were even less aware re ataxia..At one point a GP recommended I try Evening Primrose Oil, but it seemed to make me worse.

🙂 But I did get through it, and my ataxia has been slow but progressive (Idiopathic)

[Tazwaz in reply to wobblybee]

Thankyou mine was slow but I've noticed since the merit seems of got worst especially my walking and speech I even got sent to a stroke clinic by a GP that didn't know much about ataxia seeing consultant in June might be able to shed some light o it I know my self it's got worse suddenly

[Tazwaz in reply to Tazwaz]

I should of put menopause instead of merit

[wobblybee in reply to Tazwaz]

At the start of my investigations I’d been experiencing falls .and I was sent to a Falls and Syncopy Clinic...because my GP didn’t know what to do with me. He said that generally speaking it was elderly people who have unexplained falls..As it turned out he did me a favour, I had a Tilt Table Test which resulted in being sent for an MRI.My symptoms seem to come and go re severity, I have them 24/7 and they are progressing..but I can still walk using a walking stick for safety.

I cope with poor balance -eye problems-dizziness after bending or turning abruptly-choking issues- tongue/cheek biting-disorientation when multitasking-overwhelming fatigue-and brain fog ..to mention a few 😉

[Tazwaz in reply to wobblybee]

Not there yet my speech and balance is the worst I get teeth are falling out got dentures but with my speech so bad hardly ever wear them wish I could get used to them j look 20 yrs older lol

[Ataxia17 in reply to wobblybee]

You sound just like me!

[liz1190 in reply to wobblybee]

I have the same symptoms of getting really dizzy and lightheaded even without bending over, sometimes it feels like full blown panic attack, which I suffer from too.

[wobblybee in reply to liz1190]

🙂Are you recently diagnosed with Cerebellar Ataxia.

I’ve experienced this ‘sensation’ virtually from the onset of symptoms..way back in the 1990s.

I cope with physical symptoms too..but my Vestibular issues seem to outweigh anything else.

Testing hasn’t yet found a link with a specific type or cause.

[anihol in reply to wobblybee]

Have you tried riboflavin 400mg daily, you have to buy them yourself and it makes your urine bright yellow but my ENT consultant suggested that I try them and it stopped my vertigo , I still feel dizzy and unsteady but I was dropping to the floor with every attack I had, and this stopped that.....probably worth a try. P.s. you can get them off Amazon vit b2 400mg

[wobblybee in reply to anihol]

🤔 Riboflavin hasn’t been suggested. My symptoms are usually confined to extreme dizziness, not vertigo…thank you for the suggestion. As far as I know I’m not deficient.

[Tak1967 in reply to wobblybee]

That is interesting as I tried Evening Primrose oil and if affected my Ataxia .. so does Vitamin E it really ramps up the dizziness .. very unexpected .

Tracie Ann

[Tazwaz in reply to Tak1967]

I've come off HRT to many side affects still have a few stomach problems I've gone gf by order of my consultant but I didn't know HRT could affect my ataxia I think everything is a mine field I was thinking about taking vitamins but not sure which teeth are getting loose dentist wants me to have dentures but dont know about that

[Tak1967 in reply to Tazwaz]

im taking B1 and B12 and a magnesium and vit D supplement .. which I seem to tolerate but it is a minefield and I dont really know if they are doing any good as I have relatively good days and then an awful day following ?? Dentures .. do they know why your teeth are falling out .. can they not fix that issue? sounds awful really sorry to hear that

[wobblybee in reply to Tak1967]

🤔 Back in the day..I was ‘misdiagnosed’ with Temporal Lobe Epilepsy…and experiencing Perimenopause. (This was a decade before being diagnosed with Idiopathic Cerebellar Ataxia..when Epilepsy was dismissed)

My GP recommended I try Evening Primrose Oil..I don’t think it agreed with me. I’d been experiencing DeJa Vu episodes and they seemed to be more frequent.

More recently..it was suggested that DeJa Vu…could be linked to Silent Migraine, a symptom related to my Vestibular issues.

[PatsyIpswich]

Strangely I hadn't thought but on reflection, yes it did. Dr Giunti advised stopping hrt and I regretted doing so. I still get hot flushes at 79 but pregabalin helps with mood. X

[crazycat18]

I am going through the menopause as well and have noticed things getting worse. My sight is the worst. I am in a wheelchair as I can't walk at all. I have been transferring easily for many years but now I wobble a lot.I will do what you are and that is talk to my consultant when I see her next. Many GP's don't know much about Ataxia and don't really know what to do for the best.

Hopefully all goes well and we'll both get through this without things progressing too much for us. Take care

👍

[Tazwaz in reply to crazycat18]

I wonder if itx the hrt

[Marz]

Some symptoms of other conditions can and do overlap. In my case I was diagnosed with a thyroid problem due to auto-immune issues and a B12 problem due to surgery and find many of my symptoms linking to Ataxia.

I take a thyroid hormone and self-inject B12 weekly.

Hopefully you have had the correct thyroid tests done along with B12 - Folate - Ferritin - VitD - to rule out other issues. Our bodies are so complex and menopause can be a stressful time for the thyroid - the conductor of the hormonal orchestra !

[Tak1967]

Hello Tazmaz

I am going through the menopause and my Ataxia symptoms are definitely affected. I noticed previously that my dizziness and nystagmus got worse when I was in my periods and now when they change my HRT patch to a higher estrogen level I was brought to a standstill.

My auntie who has the same Ataxia as I (SCA 6) is coping soo much better with her Ataxia now she is out of the menopause.

Tracie Ann x