Had a letter from my neurologist yesterday recommending I try Candestartan at 4mg titrating to 16mg. He also suggested Clonazepam 0.5 mg at night. I’ve requested both from my GP. Does anyone find Benzos helpful. Feeling a bit down and defeated today.
Yes to finding Benzos helpful. 
I’m in a similar situation to you, but I have Fibro, VM, Joint Hypermobility Syndrome, Menieres (with hearing loss) and finally Menopause.
I’m currently taking 2x Loratadine a day due to my ears blocking (I think due to Histamine Intolerance due to my hormones being all over the place and being on HRT)… currently waiting to see a Menopause specialist.
Pretty sure my VM, with its Vertigo attacks and general “at sea” feeling, are down to Menopause. Whilst the HRT is helping a bit, I can’t take more because Histamine Intolerance is now kicking my butt.
I currently have a very understanding GP, so have Diazepam 2mg on repeat prescription; I only take it after a vertigo attack or if my anxiety goes thru the roof, but it works a treat. I find that my vertigo attacks make my muscles cramp up, so the diazepam works for that too.
Hope your new meds help. 
I have Fibro and joint hypermobility/EDS as well. I’m post menopause and have been on HRT for about 6 years. I’ve struggled with meds due to side effects so I’m not taking anything for MAV currently. Really felt better a couple of weeks ago but this week has been bad. Hoping the Benzo will help. Thank you.
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Benzo use in UK for vestibular conditions is frowned upon because:
- It hampers compensation
- They are hard to come off of once you’ve started and withdrawal is tough, apparently!
Then again, it’s your condition, but use discretion.
Looking from outside I wonder how much of MAV-like conditions are exacerbated/extended by the amount of anxiety which comes with reaction to the symptoms, so if Benzos can attack that … ?
We have a whole Category on Benzo’s : #medication:benzodiazepines
I’ve moved your posts on Benzo’s here.
Thank you. I know Benzos seem harder to get hold of in the UK but I’m willing to give them a go. Hoping to start Candestarten at the same time. To be honest a lot of medications for anxiety, depression, pain are addictive.Doctors still prescribe them however.
I was on Morphine for Fibro for years before I realised it wasnt helping that much and weaned off it, ditto Pregablin and various other medications. Even humble old Levothyroxine, which replacs your own thyroid hormone. It doesnt top it up. So if you stop that sudenly it can make you very unwell as your own thyroid is often defunct at that point.
I’m less bothered about habit forming drugs and just want something to work at this point. If I do get it prescribed and it does something then are we back to the old anxiety defence again? Does that mean MAV is mostly anxiety driven then? I’m not sure I’m buying that.
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So I’ve got the prescription issued and am hoping to collect it today, the neurologist stated 0.5mg at night for Clonazepam but the literature I’ve seen and from what I’ve read on here seems to show its effects last 8-12 hours. So taking it at night means the effects will have worn off by morning presumably.
I’m not dizzy in bed, have never had any dizzy or vertigo symptoms unless I’m either upright or walking. I want it to help with the intrusive daytime balance issues. So would I be better taking it during the day. I’ve also seen some medical literature that says 0.25mg twice daily can help vertigo, has anyone tried this?
Finally is it an as and when medication when needed, or one each day. I know it can be highly addictive which I’m not happy about but after 8 months today as it happens, of imbalance and feeling rubbish I’m getting desperate for some relief.
I take diazepam and it halps a lot. Originally prescribed by my ENT to help when i had vertigo attacks and it was the only drug that helped. I now take it when i have depisides of dizziness and nausea and they always help. Have 5mg pills sometimes 1/2 a pill is all i need but if im really feeling bad i take a full one. Probably average 1/2 a pill a day. Doesn’t make me feel high or happy but just takes away the issues I’m having.
Started as meniers type attacks but now I’m told it was always tied to MS which I had bad attacks of this year (lots of lesians in my brain, spinal column, and optic nerve). In either case, the diazepam helps me and i dont see any negatives.
Dave
Thank you for the reply, wishing you well. I took half a Clonazepam last night and it did really help, also started on half a Candestartan 4mg as a preventative. Woke up with migraine aura this morning ironically and feel pretty nauseous which I dont often get.
If the Benzo helps and gives us some quality of life and control over symptoms then as you say why not?
Valium helps me sleep. If im having a bad stress day it helps. Bad weather, stress, sinus infections, migraines all give vertigo. I stopped looking for a cure or even a slither of hope, sorry just have live with it if you are proned to it. My started after my dog died and i cried for 3mos, busted blood vessels in nose. Have not been right since. Doctors are clueless. You could be falling over in a chair, they would rush you to hospital run crazy tests, you get the bill, its just vertigo of whatever kind it is and say here take this to physical therapy to regain balance with those eye exercises. All I say is nothing will prevent from coming back, everybody is different on treatment plan. My plan is stay mad and bitchy til its gone.
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I’ve been gradually titratig up the Candestarten, just started on 12mg a day, on the plus side minimal side effects, on the minus side I dont know i its doing anything. I’ve been taking Clonazepam daily as well, 0.5mg a day so its hard to know which one is helping…
I honestly think its the Benzo. I’ve not taken one today and my balance and wobbliness arent great. I’m scared of taking the Benzo daily due to addiction concerns but I also am scared of my symptoms not being under control. I dont know if the Candestarten is going to help in time or whether its another dud.
I’m having a tough time right now, my mum passed away just before Xmas, it was expected but even still. So I’m dealing with grief and stress and I dont want to have to cope with feeling physically ropey as well when I’ve got a lot to organise and sort out. So do I just take the Benzo daily and worry about the potential addictiveness later?
Sorry to hear about your mum. 
If it was me in your situation, I’d take the Benzo, rather than let stress/grief make things worse than they already are; I find stress is my worst enemy when it comes to my VM.
If you’re really worried about “addiction” maybe try half the daily dose, or one every other day and see how you feel. The way I see it though, you can deal with getting off the Benzos when things are in a better place for you. 
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Thank you, bless her she chose my husband’s birthday to pass away, not great timing, losing a loved one is always hellish but around Xmas time is even worse. I’m glad she’s not suffering anymore but its hard to be grieving when all around you people are happy and celebrating, and there are lights, decorations and festivities everywhere.
Its been such a crap year for me and this was just the icing on the poo cake. I’ve struggled a lot since I got this damned thing and can’t really see any light at the end of the tunnel right now.
So decided to stop the Candestarten, started feeling weird during exercise,really fatigued and not enough in the tank, very unusual for me. I think it was adversely affecting my BP. I’ve always had low normal BP but I took my BP the other day, 110/55.
Candestarten can also mess the electrolyte levels as well. I also was getting lots of palpitations, which was annoying. Despite the long list it was the best drug trialled so far in terms of side effects. If I’d found it helpful I might have tried to stick it out. But sadly it did nothing for my symptoms. I’m definitely veering towards Effexor and hoping to trial that.
Still using the Clonazepam which does help temporarily. Calms the brain down, I’m not thrilled about taking it but with my recent bereavement and all the stuff you have to sort out when a family member dies, I’m not in the mood for MAV/PPPD as well. Hope we all have a happier and healthier New Year.