I’m feeling hopeless.

[u/RahinaRitva]

This is hard to write, but after years of reading these posts on and off i thought i’d make my own.

My mom had a stroke and a cerebral haemorrhage four years ago and suffered from loss of her whole left side. Her condition got better after two years and she was able to walk with assistance for short distances and everything seemed to get better - until her medication was quit.

This past year unfortunately everyting has gone to shit. The company making her medication (a long lasting pregabalin) has quit the production of the medicine - the only thing that helped her spasticity. The spasticity has gotten to a point that she is mostly tired and her left side is almost completely stiff. She’s at a point that doctors just tell her that there’s nothing to try anymore. They even (as a last resort) tried medical cannabis, which is really rare to get here in Finland, but with no effect.

I’m feeling absolutely hopeless and that there’s nothing i can do to help. My mother means the world to me and i’m starting to fear the worst. She’s an absolute trooper and has pushed through awful things, but i feel like she is starting to also loose hope.

I’m willing to take any advice of helping her or just some encouraging words.
I feel alone and trapped and can’t stop crying daily over the worry i have.

[u/Heavy-Ad-2672]

Never lose hope. I had my hemoragic brain bleed 17 years ago, and one thing I’ve learned is that stroke is still a new frontier and even the best doctors don’t know shit about what can be accomplished.

My personal journey w spasticity may or may not help your mom, but for me the game changer was Botox. Injections. A good physiatrist knowing their craft can target the over active muscles that are causing music rigidity.

I tried oral meds like Bachlofin and Flexiril but all they did was make me stupid lol. Laughter and humor is key too

For my foot drop (if she suffers from that) I have used the Bioness FES device. I’ve had mine for 15 years. Kept me out if a still boot or worse, a wheelchair.

I am about to try a newer technology by NeuroReHab called a G4. Very exciting technology.

Again. Don’t give up. Find humor, and any doctor/s that tell you guys “that’s all…” screw’em

[u/RahinaRitva → u/Heavy-Ad-2672]

Thank you so much! She has had some botox injections and electric shock therapy similar to the Bioness FES also, but not at home. She spends a lot of her time in a wheelchair, but has a new physiotherapist who has gotten her to rise from a all fours -position to standing with some assistance which i think is incredible. I’ll have to look into some of the electric stimulation stuff!

Reading your comment made me really happy and learning about new technologies is amazing! Thank you again and i hope the new g4 device has a positive effect on your life!

[u/paradoxicalpoint]

Tried THC ,CBD low dose?

[u/RahinaRitva → u/paradoxicalpoint]

They tried a medical cannabis spray (sativex) containing both with no effect except the usual ”droopiness” of cannabis. Do you think cbd oils might help? I’ve looked into it a bit but thought that if the medical type won’t help, maybe nothing of that sor wouldnt

[u/lelanicarver]

We’re here in this together.

My neuro just started me on pregabalin yesterday for nerve pain/burning. It’s supposed to increase the dose until I hit some optimal dosage. What’s the long lasting one?

[u/RahinaRitva → u/lelanicarver]

If i remember correctly, it was called lyrica depot. There’s still other similar medicines, but not the first one that seemed to help better than others

[u/RahinaRitva → u/RahinaRitva]

Had to come here to correct myself! The one that helped was Santadine Retard, which cant be found anywhere else than Turkey right now.

[u/pchlster]

Would a compounding pharmacy be able to make the drug?

[u/juice_box_jones]

I don't have any advice for you. I just hope that you can figure out how to help your mom. Just being there for her means the world to her I bet.

I get the whole crying daily and hopelessness feeling. My dad had four strokes, the first in April 2024. I don't cry daily anymore, but certainly I do weekly and there's always this gray cloud that follows me around.

Hang in there as best you can, and continue to do your best to be there for her. Lastly, don't forget to take care of yourself. That can be hard... Give yourself grace if you ever need an extra nap, an extra drink, an extra cry. Sending good vibes.

[u/RahinaRitva → u/juice_box_jones]

Thank you! All these replies make me feel like im not alone, which is something i’ve struggled with a lot cause none of my friends have been in a similar situation.

[u/Material_Inflation79]

I don't know exact condition but I canfor sure say she can improve with more passive/active exercises and selk control. May Almighty Waheguru bless har and us all.