Antihistamines Are Helping

I recently posted how Nort joined my ever growing graveyard of medications tried. I’ve had quite a bit of recent success with the following. I get Promethazine Hydrochloride on prescription as a sleep aid as I have Fibromyagia. So two 10mg at night. In the morning I’m taking a Certrizine 10mg daily and 3 times a day a Betahistine 16mg, again I was prescribed these when my GP didnt know what my issue was. I’ve had a good week balance wise and on this regimen my symptoms are pretty well controlled. I’d say between 70% to 80% of how I was prior to becoming unbalanced. I’m also taking 5HTP at night for sleep.

I dont know which one is helping or if they’re working in synergy. I probably need to elimanate each one to see if one is helping or not but I’m just enjoying not feeling so unbalanced. The relief is palpable. I’d forgotten how it felt to be up and about without feeling drunk or clumsy. I didnt realise how apprehensive I’d become at having to walk.

Its also made me question how its helping as all the info I’ve seen says antihistamines dont help MAV/PPPD. Which is now makng me wonder if I’ve been misdiagnosed and I’ve got an ear problem. My right ear has issues with fluttering sensation and hyperacusis. Its making me wonder if I need a second opinion?

I had room spinning vertigo accompanied immediately by a headache. Zyrtec (started for ear fullness) has caused mine to go away for years now. Still have the ear fullness though, just a bit less. Amitriptyline is not only an antidepressant but also an antihistamine. And cyproheptadine is an old antihistamine that can be used for migraines in kids.

I wouldn’t personally rule out a MAV diagnosis because an antihistamine appears to help. Regardless of what you want to call it, if it works I say keep it up.

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I have some experience with Promethazine Hydrochloride 25g once a night. It was the only thing which reduced my vertigo in the past. What I was told is that it has a sedating effect, which I personally experienced. I suspect the sedating effect can lessen your triggers of vertigo, but I am by no means a doctor its just what it felt like for me.
One thing to mention is that you should definitely check with your GP about how long you can take it. I do not think it is meant for long term use. I took it for 5-7 days and was having some side effects once I stopped.

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I’ve been taking it on and off for years, long before all my balance nonsense started as a sleep aid for Fibro. I’m very med sensitive and cant take traditional Fibromyalgia drugs like antidepressants or antiseizure medications. So my GP suggested Promethazine and I take that.

Also wanted to ask knowledgeable people on here, one area I definitely notice breakthrough symptoms is supermarkets and other shops. Which have been an issue for me from day 1. Going into shops really aggravates the symptoms of imbalance, even though walking around outside and at home is easier on my current regimen.

I know this is a very common MAV/PPPD symptom, but do you get it with other vestibular disorders like secondary hydrops, Menieres or vestibular hypofunction?

So I recently updated how I’m getting on, slow and steady. I’ve dropped the daily certrizine tablets and not noticed any increase in symptoms. Still taking the promethazine at night for sleep and Betahistine 16mg 3 times daily. I’m sure the 5HTP has helped as well. I feel much less anxious, I’m not obsessing about my symptoms, if I get breakthrough wobbles I’m not catastrophising. I’m just accepting it will pass. 5HTP increases serotonin levels in the brain so it makes sense.

The real reason I’m postng is I’ve just started Low Dose Naltrexone. I’ve gone private as LDN is not licenced on the NHS due to lack of clinical evidence, there are current trials going on in Europe to see if it helps with Chronic Fatigue, Fibro and also other pain and autoimmune conditions like Lupus and Rheumatoid Arthritis. It’s more accessible in the States.

I’m taking it for Fibro but am interested to see if it has any impact on migraines and PPPD. It is sometimes used for anxiety as it increases endorphin levels. I’m starting on a tiny dose and titrating upwards very slowly.

I was just wondering if any other members have tried 5HTP or LDN for MAV/PPPD?

And meant to add my Neurologist, after my GP contacted him following my failure to tolerate Nortriptyline, advised GP to start me on Candesartan 4mg. However I looked at the side effect profile and thought nope. I already have lowish blood pressure.

I’m doing better without meds and if this is more PPPD than MAV, which is what I believe, then I dont see how blood pressure meds would help anyway.

Looks like I spoke too soon, had two migraine intensity headaches this week, eyes have been sore and sensitive and the wobbly off balance has been bad all week. I also started CBT this week and had felt more positive but its easy to feel like that when you feel like your symptoms are abating. I’m not sure I’ll be so upbeat next time.

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.

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Yes to finding Benzos helpful. :face_with_hand_over_mouth:
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. :heartbeat: