emotional liability or panic attacks?

[rocmg]

hi all... so i'm wondering if what i'm experiencing with my mum is emotional liability or whether she has been having a series of panic attacks. the bouts of crying do not seem to come out of the blue and i feel like an insensitive ass for even suggesting that her emotions could be in some way related to her condition -- if someone had told me i was dying from an incurable disease, i'm pretty sure i would reserve the right to cry as loud and often as i liked.

anyway, i'm wondering if we should be seeking medication for these crying bouts, or whether it's enough to just be there to calm her down once it has all subsided.

Also, BethU I read that you had been very successful with a drug for emotional liability on trial and felt your voice was positively affected taking it. Is this drug available yet in America? Or can it be compounded and bought directly from the pharmaceutical company?

I'm feeling very let down by the services for MND patients we have here in Northern Ireland.

 

[joelc]

I would suggest you talk to your doctor about getting some medication. It will not make any difference whether it is EL, depression or anxiety, the medication is the same for each of these. I wish you luck!

 

[Harry77]

I agree, talk to your doctor. The day my wife got her DX, the Neurologist also gave her a perscription for a sleeping aid and anti-anxiety medication. ALS is tough enough to deal without depression and loss of sleep. You'll still have good and bad days, but hopefullly more good days with the medication.

 

[John1]

rocmq,

Your mum will know whether she has emotional lability or not. I have it a bit and it is an exaggerated or inappropriate response to a situation; eg. laughing at learning of a death or going into a crying jag over a sad story. If she is genuinely upset at at her situation, crying doesn't sound to be inappropriate. Without pretending to be a therapist, every PALS has to deal with his loss in some way. The first few months can be very difficult but then things generally get better emotionally. Personally, I think medicating for grief doesn't help in the long run. It is something that a PALS has to pass through and avoiding it by medication can leave him stuck.

If a PALS doesn't emerge from his grief and becomes genuinely depressed, then perhaps medication is an option if therapy doesn't help.

 

[brooksea]

Get your Mum's doc to contact Avanir Pharmaceuticals, as the drug they trialed has not yet been approved for distribution for PBA. However, they will give you the compound formula so you can obtain it from your local compounding pharmacy. We were told insurance would not cover this. Don't know how things are over there in Ireland, as far as that goes.

This drug worked very well for my husband. He now takes an anti-depressant that is covered thru his insurance.

Here is a link about the trial study:

http://www.clinicaltrial.gov/ct2/show/NCT00573443?term=avanir+pharmaceuticals&rank=1

 

[BethU]

Hi, Rocmg ... CJ's information is right on. The drug "Zenvia" is approved for diabetic neuropathy and available by prescription for that condition, but it's not approved for use with ALS yet in the US

I'm having my prescription compounded by a San Diego pharmacy, and I have to pay out of pocket. (It's about $60 for a 30-day supply, 2 capsules a day.)

The dosage I'm being given is 10 mg Quinidine 2x a day. There is a second ingredient that is not listed on the bottle, and I can't remember what it is. In addition to "curing" my emotional lability ... and I seem to have a whopper of a problem there ... I also felt a little physically stronger with this med, and the neuro said it is because Zenvia works on the entire bulbar region. Not a huge improvement, but I'll take anything I can get.

I agree that the place to start is a discussion with your doctor. I had no side effects, but they were concerned about including me in the trial because I have heart disease ... there were contraindications there ... but my neuro worked closely with my cardiologist, and I had no heart problems at all.

As CJ said, there are also other meds that treat EL successfully, and your mom's doctor has a choice of approaches. I think it's terrific that we now have some symptom control with ALS.

Good luck.

 

[BLPhill]

Rosheen,

I think I have a most extreme case of emotional lability, amotriptoline has worked well for me.

 

[rocmg]

hello all... thank you for all your comments. i just emailed the lady at the pharmacy department at the hospital to see if she can give me any advise on how to go about getting Zenvia... she has been very nice to be before, so I'm hoping she'll be able to help me figure out how to obtain it. I would like mum to try Zenvia based on the positive feedback it has gotten here on the forum. Beth -- anything that helps her mum's speech even slightly is great my me.

Mum also stopped taking Rilutek about a month ago. She felt it was making her symptoms worse and it was honestly draining her. We going with the vitamins, supplements and organic diet -- for better general health if nothing else.

We haven't had a great deal of support from any of the health professionals. Our G.P. has never had a patient with MND and is, in my opinion, quite frightened and intimidated by the whole thing. She has been good enough in returning my calls and seeing us short notice, but with regardless giving medical advice, she has simply taken on board my suggestions and signed her name on the dotted line for certain things that i may have read about on here and suggested mum be allowed to try. MND nurse has not been in contact with us since the day she upset us both greatly. I shan't have her back again unless she is going to offer sensitive and constructive advice. No point upetting mum any more than she already is.

 

[rocmg]

Hi folks... I just did a search for restless legs as an ALS symptom and posted this in another thread, but it's over in the PLS forum. SO here it is again here -- didn't want to create another thread!

up until now, my mum's walking has been unaffected by the disease. she has weakness and muscle loss in both arms, the right is a little more affected than the left. her speech is slow and a little slurred, but totally intelligible. this last week she has been complaining of "restless leg" -- when she is sitting still, she can't have them still and has to move them around. She was also kicking the quilt up in bed -- she thought it was annoying her legs. i'm wondering if this is the first signs of leg weakness. i was hoping and praying that her legs would be spared for a good long time to come. but it seems like it's going to be relentless on her. we're trying our best to keep it together, but i feel like she's fading a little bit everyday and i'm petrified. i think it might be faster than i had hoped.