Life has become unbearable: Please help me... - Dystonia Society

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Life has become unbearable

Whitefooted profile image
28 Replies

Please help me. The cervical dystonia pain in my neck is becoming truly unbearable. I refuse to keep living like this. The only medication I take is Klonopin, but I've been taking it too long at about 1 milligram a day. It doesn't help anymore. Im not going to live much longer with this pain and pressure and slight head tremors. My neck wants to turn to the right. I'm no longer a normal human being

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Whitefooted
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28 Replies

Hello Whitefooted..i see ur in the U.S...so im gonna suggest what i use n helps me with my Dystonia n my Dystonic storms..medical marijuana.. it stops what ur describing n givrs me relief from the horrific pain.

I used presc meds for over 25 years with no relief n just horrific side effects.

Mm has given me my life back n im a med mess.If ya have any questions about the mm feel free to pm me.

It wont cure it but it will let ya live again.

Whitefooted profile image
Whitefooted in reply to

Thank you so much for your kindness. People like you give so much hope to the world by their caring. I'm definitely willing to try mm. Sometimes in the past the marijuana has given me a bit of anxiety. Is there a certain strain that removes the anxiety from the marijuana? Drinking alcohol and then smoking has had good results but of course I can't drink all day long or have the capability to do so. Even drinking alcohol has helped me but I can't take the hangovers at my age.

in reply toWhitefooted

Would be more than happy to give ya more details on the mm i use n etc n chat more.

If its ok with u ill try messaging u within the hour n i can chat with ya then.

Whitefooted profile image
Whitefooted in reply to

Ok sounds great. How do we chat, by texting on this site right? I'm new here

in reply toWhitefooted

Oh ok..a newbie..cool.Yeah on this site n ill message u n u will see it at top of ur screen when i do.

in reply to

Tap on the message bubbles at top of your screen,should be a 1 next to it.Then tap on person messaging u

in reply to

Heres the answers to ur questions.

Medical marijuana has different results for different people.I suggest a dispensary that sells organic,tested mm.U can ask what strains can cause anxiety.

As far as drinking n using medical marijuana..i wouldnt suggest it as alchohol is a depressant AND it can change what the strain ur using does to help u.

Also medical marijuana is TOTALLY different than recreational n is grown specifically for med reasons.

Whitefooted profile image
Whitefooted in reply to

Hi, sorry for my late response. Can a doctor prescribe mm for me? Or do I have to go to a dispensary?

in reply toWhitefooted

You need to check your states rules on medical marijuana first.Usually first step is having ur doctor fill out ur mm license application. You pay a fee for your yearly license n then u take it to a dispensary of your choice.You need a license to get into mm dispensaries.Recreational dispensaries dont require licenses but they also dont sell medical marijuana.

Whitefooted profile image
Whitefooted in reply to

Oh ok. I'll check the rules of North Carolina then.

Whitefooted profile image
Whitefooted in reply toWhitefooted

medicalmarijuanainc.com/nor...

It doesn't look too promising in North Carolina

in reply toWhitefooted

Sorry to hear about ur states mm laws.i think it should be accesible to any/all who can benefit from it😣

Whitefooted profile image
Whitefooted in reply to

Yes. I went to a neurologist Monday and all she recommended was Botox. Next time I'm in Florida I will get some mm cause it's legal there. Thanks for helping me out sir.

Whitefooted profile image
Whitefooted in reply toWhitefooted

Oh and she also recommend that I take a pill called cymbalta

in reply toWhitefooted

Gives u something to try!?

in reply toWhitefooted

No problem..hope to find something that helps u.

Btw..im a female,lol

Whitefooted profile image
Whitefooted in reply to

Lol..poops😀

Whitefooted profile image
Whitefooted in reply toWhitefooted

I mean ooops.

in reply toWhitefooted

Lol..its all good😁

Adaboo profile image
Adaboo

Hi, have they not offered you botox shots? It’s the only thing that made life worth living again for me. Like you I became immune to klonopin, I weaned very slowly down to a quarter pill a day and then upped it again. It worked again then. Please ask your neuro for botox.

Whitefooted profile image
Whitefooted in reply toAdaboo

Thank you so much Adaboo. I did try Botox shots but they didn't seem to help me much. I even tried acupuncture a few times. Monday I'll be going to a new neurologist in North Carolina. I'll keep all you wonderful people up to date on what she says to me. I hope she doesn't recommend a pill cause I already feel addicted to Klonopin although it barely helps

Adaboo profile image
Adaboo in reply toWhitefooted

Botox took a few times to work, there are also different types of Botox. Good luck

Peacelovelight profile image
Peacelovelight

Hi

I so feel for you as I'm walking your path also and know exactly what you are going through. I take clonanazepan, naproxen and venlafaxine all on a low dose. I find heat is the best. Please message me at any time. There is so little support and understanding for this condition and we need to be there for each other. Sending you love and light x

Whitefooted profile image
Whitefooted in reply toPeacelovelight

Thank you peacelovelight. You are so kind. People like you lift my spirits so much. I truly appreciate your kindness. I will try to explain my condition in more detail later on.

Carpediadem profile image
Carpediadem

Hi! Have you tried a Neck Hammock? Google!!

Whitefooted profile image
Whitefooted

No I haven't.ill have to look into it. I've never heard of it before. Thank you so much Carpediadem

NUTZ profile image
NUTZ

Hi,

Thanks for your honesty.

I can only encourage you to try and hang in there and don't give up. Don't let this illness get the better of you.

Of course this is easier said than done.

Due to the lockdown I have not had any botox treatment for 7 months and same for regular acupuncture sessions. It has been a horrendous time (trying not to get stressed as have been off work for many months ) and to me feels like all the good progress made in over a decade has been wiped out. Ask your GP if you could try an anti-spasmodic medicine which could be beneficial.

Take each day as it comes. You are strong and it will get better.

Take care now.

Whitefooted profile image
Whitefooted in reply toNUTZ

Thanks for your beautiful kindness nutz. I'm thinking we all must carry some sort of burden in this world. This one happens to be ours. I try to remain strong. Many times now the desperation and sadness takes over me. C'est la vie..yes? I hope and wish your economic life gets back to a comfortable level. I also hope you can get your treatments back again. You are extremely kind and it's people like you and with your golden heart that makes people like me feel better. Thank you again.

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