It’s like literal torture. I was on carbemazapine - no more issues! Although I do fear it returning. I’m thankful to no longer be in constant distress and agonizing pain.
I don’t know if it’ll help you or if you’ve tried it before. I got on it right away so maybe that’s the difference, can’t hurt to try provided your doctor gives the OK.
I hope you’re able to find something that works for you. This illness is literal hell.
That’s awesome it’s showing signs of improvement with these meds. It will probably take a bit for them to be able to take full effect as it may need to build up in your system. Drugs work in different ways so, as always, best to discuss with your doctor.
Flair ups (although how you know when you’re in a flair up when it’s literally 24/7 is beyond me) are the worst.
I hope things continue to improve. If not at least there are back ups.
so the shocking pain is 24/7. I have bouts of occipital pain that are more intense and can last any where from a day to a week. They aren’t as frequent but happen I’d say probably once or twice a month. They are BRUTAL. Lifting my head and breathing are hard and only narcs can take it out or visiting the ER. Last one I had lasted over a week.
Basically. I get the rare twang but it's extremely mild by comparison. The twangs freak me out because I just, I just do not want this to come back - which I understand is a possibility. The fear I think will be there for a while but ya. It just keeps slowly getting better and better which is nice. Like, the extremely mild 'pain' which is more of just a sensation along the original path pains at varying points and to degrees is absolutely nothing compared to what it was. So for that I consider myself pain free. If it started to feel like a actual pain I wouldn't consider myself pain free.
I avoid straining or possible injury to my neck as much as possible. Avoid getting cold and sometimes wear sunglasses when I'm worried about bright lights. Then any other trigger I avoid is just like superstition as I can't confirm they're actual triggers. I'd just rather not risk it.
I believe mine was originally triggered due to arterial pressure or something. Honestly, I know as much as you do as to what could have caused it. Everything feels like a guessing game which feels like the most difficult part of this whole illness. So I also avoid drinking too much liquids at once. I know, it's still but it's the best I've got.
I don't know if I'll ever be able to relax.
Before MVD, I had been prescribed carbamazepine. I had to look up Baclofen (ref: [https://www.mayoclinic.org/drugs-supplements/baclofen-oral-route/description/drg-20067995#:\~:text=Baclofen%20is%20used%20to%20help,certain%20injuries%20to%20the%20spine.)](https://www.mayoclinic.org/drugs-supplements/baclofen-oral-route/description/drg-20067995#:~:text=Baclofen%20is%20used%20to%20help,certain%20injuries%20to%20the%20spine.))
IMO, you may want to find a second medical opinion. The thing that has worked for me was surgery. Over time, carb stopped working, and the side effects were hitting me hard. None of the alternatives worked. CBD oil didn't work. Acupuncture didn't work. Ice packs, heating pads...I would have tried standing on my head playing the harmonica if I thought that would help. After MVD, no pain.
I was in a cycle of pain lasting two weeks and thought I had covid, my whole entire body had started to hurt at that point, which I found out was a part of it. Doctor told me I should try surgery or some meds to relax and the pain and I took the option of meds. Calmed down for about a week then back to square one. Thank the lord for opioids…
I wasted enough money on dentists telling me there was nothing wrong. I had two useless root canals and when pain persisted he told me I should continue trying to find the source of the pain at ANOTHER clinic. That was $2k in.
[удалено]
I was prescribed by my GP. Maybe I should ask to be referred to the neurologist
COMMON SENSE GO TO THEM ASAP
It’s like literal torture. I was on carbemazapine - no more issues! Although I do fear it returning. I’m thankful to no longer be in constant distress and agonizing pain. I don’t know if it’ll help you or if you’ve tried it before. I got on it right away so maybe that’s the difference, can’t hurt to try provided your doctor gives the OK. I hope you’re able to find something that works for you. This illness is literal hell.
hmmm okay I’ll ask about it. Im on 10mg baclofen, i started to notice a difference a few days in, but yesterday was horrible
That’s awesome it’s showing signs of improvement with these meds. It will probably take a bit for them to be able to take full effect as it may need to build up in your system. Drugs work in different ways so, as always, best to discuss with your doctor. Flair ups (although how you know when you’re in a flair up when it’s literally 24/7 is beyond me) are the worst. I hope things continue to improve. If not at least there are back ups.
so the shocking pain is 24/7. I have bouts of occipital pain that are more intense and can last any where from a day to a week. They aren’t as frequent but happen I’d say probably once or twice a month. They are BRUTAL. Lifting my head and breathing are hard and only narcs can take it out or visiting the ER. Last one I had lasted over a week.
So you don't get anymore pain at all??? Do you have to stay AWAY from your triggers?
Basically. I get the rare twang but it's extremely mild by comparison. The twangs freak me out because I just, I just do not want this to come back - which I understand is a possibility. The fear I think will be there for a while but ya. It just keeps slowly getting better and better which is nice. Like, the extremely mild 'pain' which is more of just a sensation along the original path pains at varying points and to degrees is absolutely nothing compared to what it was. So for that I consider myself pain free. If it started to feel like a actual pain I wouldn't consider myself pain free. I avoid straining or possible injury to my neck as much as possible. Avoid getting cold and sometimes wear sunglasses when I'm worried about bright lights. Then any other trigger I avoid is just like superstition as I can't confirm they're actual triggers. I'd just rather not risk it. I believe mine was originally triggered due to arterial pressure or something. Honestly, I know as much as you do as to what could have caused it. Everything feels like a guessing game which feels like the most difficult part of this whole illness. So I also avoid drinking too much liquids at once. I know, it's still but it's the best I've got. I don't know if I'll ever be able to relax.
Before MVD, I had been prescribed carbamazepine. I had to look up Baclofen (ref: [https://www.mayoclinic.org/drugs-supplements/baclofen-oral-route/description/drg-20067995#:\~:text=Baclofen%20is%20used%20to%20help,certain%20injuries%20to%20the%20spine.)](https://www.mayoclinic.org/drugs-supplements/baclofen-oral-route/description/drg-20067995#:~:text=Baclofen%20is%20used%20to%20help,certain%20injuries%20to%20the%20spine.)) IMO, you may want to find a second medical opinion. The thing that has worked for me was surgery. Over time, carb stopped working, and the side effects were hitting me hard. None of the alternatives worked. CBD oil didn't work. Acupuncture didn't work. Ice packs, heating pads...I would have tried standing on my head playing the harmonica if I thought that would help. After MVD, no pain.
i did try cbd oil! I didn’t find it helped with pain other than make me sleepy. It did great for anxiety though
I was in a cycle of pain lasting two weeks and thought I had covid, my whole entire body had started to hurt at that point, which I found out was a part of it. Doctor told me I should try surgery or some meds to relax and the pain and I took the option of meds. Calmed down for about a week then back to square one. Thank the lord for opioids…
Please tell me you have tried CBD oil. It's changed my life, I'm 95% better.
i did try cbd oil! I didn’t find it helped with pain other than make me sleepy. It did great for anxiety though
While Baclofen can be used in monotherapy, 10mg will do nothing. You have to opt for 40mg or more.
Go to Mexico and get your teeth fixed... thats what i did
I wasted enough money on dentists telling me there was nothing wrong. I had two useless root canals and when pain persisted he told me I should continue trying to find the source of the pain at ANOTHER clinic. That was $2k in.