Have benzo's helped?

[seamuspg]

I'm curious what people's experiences are with Benzodiazepenes for dealing (treating?) with their FND.

My symptoms were progressing so quickly and it was becoming full body and brain involvement. Huge congnition issues, tremors, jerks, lim weakness etc...Hence, my anxiety began to become an issue as well.

I finally gave in and decided to take a .5 Ativan...and it helped tremendously, but not just with anxiety. I slept without "jerks" for the first time in months. I started to get some strength back in my right side. My cognition improved.

I am now 18 hours removed from taking the pill, and symptoms are slowly returning. Am I being too simplistic, by viewing this experience from a diagnostic standpoint, and beginning to think that a big part of my problem is anxiety? With this being said, I DONT believe it's conscious anxiety. (I didnt FEEL anxious when all my symptoms began. ) Butit would be feasible for me to believe I have subconscious trauma that is resulting in massive amounts of anxiety and wreaking havoc on my body.

I am curious if other people have had similar experiences?

[thinkin]

Hi

I've found that FND and anxiety can increase at the same time. It's not the anxiety or the FND that was causing my symptoms, it was histamine. Not the type you can treat with antihistamines from the chemist, but rather the stuff in my diet and that is released from mast cells.

Sometimes anxiety and FND feed off each other too - like an itch-scratch scenario, but when you are in the midst of it it can be hard to break. I'm an asthmatic, something some put down to anxiety and not breathing properly, but is in fact my body not producing enough sulphite oxidising enzyme resulting in too much histamine being released. I also have thyroid antibodies which can stop my body from being able to use or absorb vitamins sufficiently - turned out a rather toxic combo. So I live on a sulphite free, low histamine diet and take lots of extra nutritional supplements. Can you hear me rattling from there?

Have you thought of keeping a food diary? You may be histamine intolerant - a complex thing to learn about - try finding "Histamine intolerance - the current state of the art" an online article.

If taking a benzodiazpine helped then perhaps try and research what it does to the chemicals in your brain - or if you have a medically minded friend to do it. They are addictive and may have a reduced effect over time - but you probably already know that!

I know it's hard to de-stress when symptoms are flaring, but we do produce histamine when we are sick, distressed, have an infection, have allergies etc and histamine is a neurotransmitter that controls others.

B12 and diamine oxidase with P5P (a form of B6) can help your body break down histamine. Lessening histamine and histamine releasers in your food may also help.

This is a whole body thing. Everything is connected. Look into any other health problems you have to see if you can improve them - even if the ideas seem strange at first. I certainly know when I've eaten something I shouldn't. I had terrible anxiety at one point and it's not helpful when medical practitioners dismiss us because of the anxiety - it's a sure way of making anxiety worse. It's a sign that you are unwell rather than the cause of being unwell.

Mindfulness should not be dismissed as something that can help. I had to put myself on a strict sleep schedule too. You can get CBT for sleep on the NHS if you are in the UK. It can take time though.

Sounds a lot - sorry. Maybe one thing at a time. It takes time to seek out your answers. COVID is making many people's FND worse too. It's dangerous times for us.

take care xx

[Yasmin-C]

Hi, I haven't taken Ativan but have diazepam as a 'standby' when I feel a functional seizure coming on and that really helps. I think the truth is that the medical profession is as baffled as we are by FND, same as ME or Chronic Fatigue Syndrome (Epstein Barr in the USA) which I have also been diagnosed with. I had a consult with a specialist here in the UK and he admitted that they don't know. Obviously they mean well and would like to be able to help but the diagnosis covers such a wide sweep of symptoms that they don't really know where to begin. I have also been diagnosed with PTSD since the head injury which started this whole thing so I feel like my diagnosis is basically about initials - sort of 'what's your initial diagnosis, doc?'! FND, M.E., PTSD...

Maybe if you asked for a low dosage of diazepam to get you over the worst of your symptoms as you withdraw from Ativan might help, although here in the UK there is an intrinsic reluctance to prescribe it, I don't know why. I was on Sertralin and Amitryptaline, both of which played havoc with my digestive system and were hell to get off whereas with diazepam I don't need to take it on a regular basis so I don't get addicted.

And of course we all feel anxious when given the symptoms, whatever they are, and then the diagnosis which no one really knows how to treat and then Covid, Delta, Omicron....

Financial issues also play a part for me as I haven't been able to work for the past 9 years.

I do hope some of this helps. Peace and quiet and mindfulness help, connection with one's 'higher self' which, somewhere, does know what we need.

I wish you all the best on your journey.

[christopher_cms]

benzos in general slow down the nervous system which is why you see some relief from ativan ... can you or someone give me a simple definition of FND ?? thanks

[seamuspg]

Yes, but if FND is truly flawed communication between parts of the brain, settling the nervous system wouldn’t necessarily play into symptoms decreasing, unless they are directly anxiety related. At best it would seem effective for those symptoms that arise due to the anxiety caused by FND.

[thinkin]

Glad it's been of help for you. Sprouting peas for their DAO content will help you tolerate histamine better, with P5P as it's coenzyme. You have to play around to find the right amount for you.

I've been self experimenting again and I'm trying luteolin which is a natural mast cell stabiliser that crosses the blood brain barrier - it has been used in Chinese medicine for years. It seems to be helping. Not cured yet. I know I'll pick up with the spring sunshine. Not long to go now. 😀x