New to group Norotryptyline Questions...

[Fitz5]

Hi all, don't know where to start. PCS diagnosed after a car accident last May. Balance issues, headaches, and when not wearing a baseball cap- I stutter. My Speech Therapist discovered I also have some short term memory loss. My neuro suggested I go to a concussion specialist who put me on Norotryptiline-this is in addition to Propanalol. After about 3 weeks on the Noro my balance improved and stuttering stopped. BUT when I wake up my back is so very sore as are my knees- I feel like a little old lady! And I'm not THAT old -lol. Its been over a year now, I've lost my job gained 30 plus pounds and am wondering if this is all my "new Normal". Any help or hints or experience with Norotryptiline would be greatly appreciated!!

D

[Kirk5w7]

I see you are on propanalol too, this is a betablocker, i was originally prescribed this whilst in hospital for my bloodpressure but it is also prescribed for anxiety.

The norotryptilene is an anti depressant in large doses but also used for nerve pain . Why have you been prescrbed these?

I can tell you my experience of amitryptilene which is prescribed like norotryptilene. I was prescribed it for nerve pain but it did not suit, i was hoping to get rid of neuropathic pains in my arms which it did but it didnt help the pressure headaches i had. So i dropped the amitryptilene and now have pregabalin which works for the headaches.

I no longer take the propanol l because my GP prefers other medication for high blood pressure.

Hope this helps

Janet x

[Kirk5w7]

Can i add that when i was taking statins they made me feel like you, an old lady and i may be 65 but when i stopped taking them, my GP wasnt happy but i needed as much back of my life as i could get.

I now take a very low dosage as compromise but if over time i develop those aches and pains and stoop and shuffle when i walk I’ll stop them again.

Janet

[Fitz5 in reply to Kirk5w7]

Hi there Janet.

THey put me on Propanalol for my headaches that were daily. Then the Norotryp for the balance issues and headaches as well. I'm hoping to get off both especially the Noro. Are you still on the Gaba??

[Kirk5w7 in reply to Fitz5]

Yes I’m still on the pregabalin, I’ve tailored it my means, 150 mg a day was too much but 100mg not enough so I take 1x 50 mg and 1x 75 mg each day, balances the side effects too.

I don’t eat too much but I’m unable to lose the weight I’ve put on, about 10 kilos, which I’m very unhappy about, never been this overweight except when pregnant and never reached this then. The doctors just shrug their shoulders at me when I tell them. Grrr!

Janet

[steve55]

were you told this would put weight on ? because you should have been.

[Fitz5 in reply to steve55]

No I wasn't but I have noticed that I can't stop eating. And I'm not a small gal to begin with so that's a bit concerning!

[steve55 in reply to Fitz5]

the same happened to me when i was put on epilim for my moods, although i had to be reminded to eat and i ate sensibly, my weight ballooned from a muscular 14s7 to just over 23 st. ( before my stroke i lifted weights and trained several days a weeks, after my stroke the muscle gradually turns to fat ).

have you applied for pip?

[Fitz5 in reply to steve55]

What is pip?

[blackperil]

I have been on Nortriptyline for over a year and a beta blocker for headaches. I have tried others and the trouble is all the side effects, they are all the symptoms one is trying to stop. I am waiting for a NHS Nuerologist before making the next change, but I recommend reducing or stopping to see the impact after trying medication for a while. Just to be clear, adjust your medication with your Doctor.

My knees crackle going up the stairs and my fitness has dropped due to fatigue and headaches. I have back aches, but also have 2 bulging discs.

one year may be a bit early for new me thinking, two years seems to be an arbitrary time quoted here where any subsequent recovery is seen as being limited.

I have still not accepted the new me, it is hard to come to terms with.

[Fitz5 in reply to blackperil]

Omg I am on a beta blocker for the headaches too- propanol and my knees are killing me- which has been since I started the Nortryptaline I thought I was losing my mind!!!

[Fitz5 in reply to blackperil]

I hope that you find some thing that works for you to make you feel better.!!

[steve55 in reply to Fitz5]

dont listen to blackperil about reducing your medication on your own it could be harmful, ive recently stopped taking epilim and that took 3 months to gradually reduce the amount i was taking and introduce carbamazapine.

do you have a neurologist or a psychiatrist?

[Fitz5 in reply to steve55]

I have a neurologist and I sooo know that you have to taper down on these meds... because it really can be dangerous

[steve55 in reply to Fitz5]

sorry

[Fitz5 in reply to steve55]

??

[steve55 in reply to Fitz5]

i was saying you need to come off gradually which you already knew so i apologised for assuming you didnt.

[Fitz5 in reply to steve55]

Aww thank you. No need to apologize but ❤️❤️.

[blackperil in reply to steve55]

Updated my post to be clear to adjust medication with your doctor.

[Tortie14]

I had PCS after a fall in 2013. This group and Headway helpline saved my sanity as all medical professionals treated the musculo-skeletal issues but denied the head injury. Got a diagnosis at the NHNN, took 3 neurologists before I found one who spoke human (and listened to me) he was fantastic and his tests helped confirmed what was and wasn't affected and his colleagues helped me with strategies to deal with symptoms until time did it's work. It was slow, they said 2 years is normal time for change in symptoms but mine kept on improving. I am now 90% recovered just some noise sensitivity (I love my earplugs!). I was on propanalol for anxiety due to stress related depression before the accident and it helped me a lot. It took a couple of tries to find the right anti-depressant so my advice is if it doesn't suit you and side effects are bad - ask for an alternative. I hope you have a good GP who listens, makes a huge difference. With my depression, I used conventional medicine but also anything else - complementary therapies, talking therapies, nutritional supplements etc. Together they got me through the other side - sadly only drugs available on the NHS. Good luck with finding your way through and don't settle yet.

[Fitz5 in reply to Tortie14]

Thank u! I am on Propanalol too for my headaches. Good luck to you and thanks I’m going to check out Headway!

[sealiphone]

Many drugs can have side effect for some people, I'm on Mirtazapine. My friend said don't take it, lots of bad stories out there. Weight gain being a big problem, hence I was called in after 3 months to see what had happened and according to them I'd lost weight.

I was lucky but my Neuropsychologist made a point of saying other drugs to try if it doesn't suit you.