Als MND panic- please help me!

[kyllikki]

I think “honesty” is a decoy in some senses. I can use my “insight” to fool doctors and psychologists and family into thinking I have a better handle on things than I do. When in fact I am actually an out and out nut job!!
xxx

Oh my goodness, Jojo, I could have written this sentence myself. I sound so reasonable in print or via words but the inside of my head is significantly less rosy!

Someone I knew who was brilliant but had all sorts of issues used to put it like this: "If your best friend had all these exact problems and concerns, what advice would you give them?"

I like to think NMP (and the likes of Pulisa, BlueIris, others who I know I am rudely forgetting...) is here for that. But good grief it's hard to take one's own advice at times! Hugs.

[jojo2316]

So a little update. I am now nearly 10 months into this flare up. And am still struggling every day. I think this is the longest unremitting bout of HA (and specifically ALS HA) I’ve had. I’m hyper hyper aware of things that should happen unconsciously. Chewing and swallowing feel all “wrong”. My tongue feels like it gets in the way. I worry that my voice is slurred or hoarse or nasal. I read through my entire thread last night and could see how I return to the same worries again and again.
Anyway. I spoke to my doctor again yesterday, who is going to refer me to a psychiatrist (not a neurologist as I would like!!!), and she has increased my dose of sertraline to 150mg. I really didn’t want to go that high. But right now I’d take anything not to be feeling like this!

[BlueIris]

Sending love and good wishes. You know you're stronger than this, and I'm around to talk any time you want.

[jojo2316]

You are the best BI. Right now HA is winning the battle. But the war is a long one. I’m long overdue a turn of having the upper hand!! Hope you are ok love?

[BlueIris]

I am. Tired and a bit frazzled but still me. You're a wonderful person and you can make it through this.

[pulisa]

Jojo,you will probably get a far better response on the highest dose of sertraline if you are going to see some improvement on this med so don't be worried about the dosage level. My daughter was on 200mg daily in her teens. I think you will get far better care seeing a psychiatrist at this stage after such a prolonged bout of unremitting HA. It's all sensorimotor stuff now as you realise but it's very challenging to manage unless you mentally tell these fears to do their worse and relinquish your need to control what normally comes naturally xxx

[mjh82]

Hello,

I'm currently in the midst of a flare up myself but what I will say is that hyperfocusing on your swallowing and speech can definitely send you into a spiral.

I went through this exact same issue years ago when I had a limb EMG that was all clear. What did I do? I googled and read about bulbar ALS. What happened next? I became convinced I couldn't swallow. I lost 30 lbs. because I was afraid to try and eat. Worried I would choke and confirm in my mind that I had ALS. It got so bad that there were times where I literally had trouble initiating a swallow because I overanalyzed every single swallow. My throat would seize up from the tension and hyperfocus. Guess what? That was 6 years ago and all that weight is back and then some lol.

Me telling you this is to let you know that there is a path forward. Wake up every day and fight the anxiety. Speaking with a psychiatrist is a good idea IMO. I've recently started to do yoga to help with all my twitching, tension, tightness. Try anything which can reduce your stress. Throw everything at it. Hopefully, something will give you some peace.

Most importantly: You are not alone and you can overcome this in time.

[jojo2316]

Hello,

I'm currently in the midst of a flare up myself but what I will say is that hyperfocusing on your swallowing and speech can definitely send you into a spiral.

I went through this exact same issue years ago when I had a limb EMG that was all clear. What did I do? I googled and read about bulbar ALS. What happened next? I became convinced I couldn't swallow. I lost 30 lbs. because I was afraid to try and eat. Worried I would choke and confirm in my mind that I had ALS. It got so bad that there were times where I literally had trouble initiating a swallow because I overanalyzed every single swallow. My throat would seize up from the tension and hyperfocus. Guess what? That was 6 years ago and all that weight is back and then some lol.

Me telling you this is to let you know that there is a path forward. Wake up every day and fight the anxiety. Speaking with a psychiatrist is a good idea IMO. I've recently started to do yoga to help with all my twitching, tension, tightness. Try anything which can reduce your stress. Throw everything at it. Hopefully, something will give you some peace.

Most importantly: You are not alone and you can overcome this in time.

Exactly yes! I have become afraid to eat or drink in case my swallow malfunctions and triggers a panic! And the most absurd thing of all is….. I too went through this exact same thing some years ago. Sorry to hear you are struggling lately. Have you been posting about it? I will look out your thread….

[jojo2316]

Jojo,you will probably get a far better response on the highest dose of sertraline if you are going to see some improvement on this med so don't be worried about the dosage level. My daughter was on 200mg daily in her teens. I think you will get far better care seeing a psychiatrist at this stage after such a prolonged bout of unremitting HA. It's all sensorimotor stuff now as you realise but it's very challenging to manage unless you mentally tell these fears to do their worse and relinquish your need to control what normally comes naturally xxx

Its very good to hear about your daughter’s experiences…. Thank you Pulisa

I don’t know why i fear a larger dose. I suppose it just feels like I have a longer road back to being “drug free”. But as my dr assures me… these things are safe for long term use so… xxxx

[pulisa]

Its very good to hear about your daughter’s experiences…. Thank you Pulisa

I don’t know why i fear a larger dose. I suppose it just feels like I have a longer road back to being “drug free”. But as my dr assures me… these things are safe for long term use so… xxxx

But if you were able to "tame" your HA on a higher dose of sertraline ,would you still feel the same way? Along with therapy of course. Would it matter taking higher dose meds if they actually helped you? It's quality of life after all and you can't have much of that at the moment?