Amitriptyline - anyone take it?

Yes after gabapentin gave me restless leg i tried this. Made me fidgety and restless so i stopped after few days. I was told it may help with the numbness & buzzing.

Girlie,
Low levels of some anti depressants can absolutely help with nerve pain. Before I went into remission from CRPS/RSD I was taking cymbalta and it did help.

Even better was Savella that I had tried before cymbalta,but could not take due to it increasing my blood pressure too much.

For me it worked better than the Fentanyl patch, nerve blocks and other pain meds that never touched my pain.

I cant speak to how it would help with nerve pain driven by Lyme and co. But I just wanted you to know in case it might help you.


Take care and I wish you the best of healing , Jo

When I was in my twenties, I was told by my Neurologists and Rheumotologist that it would possibly burn out in 20 to 30 years. It took 25 yrs. The last 4 years of that time I took only the savella then the cymbalta.
Then I kinda just went into remission.

That was all after many years of trying many different medications and therapies.

Early on I had extensive craniosacral massage/therepy, Myofascial release therapy, biofeedback, rolfing(type of massage), hydrotherepy and a spinal implant.

The only other drug that helped take the edge of the pain was Methadone, I did not take that long it caused headaches.
I'm not promoting narcotics as they are not for everyone and can have side effects and do damage to our bodies but I would say in the first 15 years of the illness I wanted to just cut my arms off. I don't know how I made it through it all.

Then when I got Lyme and co last year I was very worried the RDS would flare up. It has not. I am so fortunate.

Girlie the key must be to calm down the sympathetic nervous system. I am not sure what the newest treatments are that are available today.

Sorry post is so long. Take care, Jo

They tried to give it to me as a migraine drug and it made me so incredibly and uncharacteristically rage filled that I stopped taking it after 2 days... a lot of these types of drugs have a SHWACK of side effects AND drug interactions (even with natural stuff) so be really careful!

Topiramate which I'm currently taking (to reduce CSF production) has over 600 drug interactions...

Cerebral Spinal Fluid production... it has a ton of different uses but I *THINK* this is how its helping me. I always complain of feeling too much pressure in my head and have only ever gotten relief of that from lumbar punctures and topiramate. So I *THINK* that my problem is that there's too much volume of _____ in my head. Or things are swollen? Lack of drainage? So by reducing the volume of stuff it reduces the pressure and keeps me from falling over and stutter/stammering.

Hows this for fun... they can't SEE it anywhere and it gets better and worse... but yes, probably IIH. They just won't call it that. They prefer basilar migraine. Tomato.... tom-ah-to....

Edit:

Oh, and no... never had ANYTHING before this. Never even had a headache...

I messaged on it ;)

I'll have to look into DMSO.

To answer your question on THAT thread... I was never diagnosed with IIH (I don't have ocular nerve damage, or elevated opening pressure BUT that being said was never tested while symptomatic - they like to "schedule" lumbar punctures) but my symptoms improve from all of the things one would expect IIH to improve from... ie. LP's, Topiramate. They'll literally stick the needle in and I'll be moving my face around telling them "it feels like the dental freezing is out of my face and the pressure in my head is gone". They had to stop doing them because a. they're not exactly NOT dangerous and b. I have a borderline chiari malformation where my brain dips a little bit into my spinal column and any negative pressure could pull it further down and kill me. SO, no more LP's.... BOO!

Interestingly, I AM diagnosed with convergence insufficiency, which is something that is incredibly under diagnosed and I bet a lot more of you guys have... which is that my eyes aren't working together. It wreaks havoc on both your ocular and vestibular system.

Moonchez said...
I messaged on it ;)

I'll have to look into DMSO.

To answer your question on THAT thread... I was never diagnosed with IIH (I don't have ocular nerve damage, or elevated opening pressure BUT that being said was never tested while symptomatic - they like to "schedule" lumbar punctures) but my symptoms improve from all of the things one would expect IIH to improve from... ie. LP's, Topiramate. They'll literally stick the needle in and I'll be moving my face around telling them "it feels like the dental freezing is out of my face and the pressure in my head is gone". They had to stop doing them because a. they're not exactly NOT dangerous and b. I have a borderline chiari malformation where my brain dips a little bit into my spinal column and any negative pressure could pull it further down and kill me. SO, no more LP's.... BOO!

Interestingly, I AM diagnosed with convergence insufficiency, which is something that is incredibly under diagnosed and I bet a lot more of you guys have... which is that my eyes aren't working together. It wreaks havoc on both your ocular and vestibular system.

How many mm do the tonsils dip down? Did you have the Chiari prior to lyme?

I did have an mri to check for it. But, after I had it I read that an upright mri is better - the tonsils descend more.

Mine was not more than 3 mm and no blockage of spinal fluid so negative for Chiari.

Did you also have mri's of your cervical and thoracic spine?

Moonchez said...
Ok, googled DMSO...

Where do I GET it?

best place with actual pharma grade dmso is

dmsostore.com

they also sell on amazon.