Introduction - newbie to site

[Taz_Mania_Girl]

Hi everybody! Just a quick introduction. I have been using Bluelight to research various drug therapies, pain relievers, and find information on general pain relief. I suffer from Multiple Sclerosis for the past 11 years. I am highly tolerated to opiates, and my long-term plan for pain relief is to get off ALL medications (I HATE the way all narcotics make me feel). I am looking into the possibility of a spinal cord stimulator to treat severe limb pain, neuropathic pain, and spasms that are part of the disease. I have an aggressive form of MS, so it has progressed to an absolutely intolerable level of pain. UGH. Overall, I am a happy and bubbly girl with a very positive outlook, and I absolutely REFUSE to let this disease drag me down.

The most horrible pain I have experienced, which is way beyond labor pain and when it hits I actually go in and out of being conscience, is Trigeminal Neuralgia. It is also known as Suicide Disease, and rightly so. It is intense pain in the face along the trigeminal nerve paths, and the pain is equivalent to having your teeth drilled without Novacaine.

To treat this horrible condition, I will be having brain surgery in February to have the nerve completely removed from both sides of my face. Dramatic solution and will cause numbness (like when you leave the dentist), but at this point that is preferable to the pain.

Look forward to reading and learning, and to share my experiences for those who suffer as well.

Warm Regards, Ashley

 

[Ziggy stardust]

Hi Ashley,
I saw your post about being from Cali. I'm from the "valley" myself..
Damn...your form of MS sounds terrible. Is the surgery your having in February a 100% cure for the facial pain? What are you going to do about the limb pain?
I really feel for you. I have lower back pain and that's bad enough...I can imagine having something called the "suicide disease".
Hope your ok today.

 

[Rybee]

Hello From London \o/

It's a shame that you've had to join BL for reasons other than fun/recreational use of drugs. I have a good friend who suffers from MS and to watch him deteriorate over the years has been hard. There are some pretty hardcore chemists here on BL that will many doctors so feel free to ask away! You'll get great advice, especially with pain management

You have my blessings, I wish you all the best in managing such a terrible, terrible condition.

Rybee =)

 

[Taz_Mania_Girl]

Thank you Ziggy! I live in Newport Beach, about a mile from the beach, so it is a beautiful place to live. Too bad I cannot enjoy it like I used to. I appreciate you took the time to post!

MS Sucks. The surgery is NOT 100% unfortunately. There is about a 60-70% chance it will take the pain away. But because nerve pain is caused by the brain sending false signals, the nerve itself is not damaged. It is the brain. The best analogy is phantom limb pain, when someone loses a limb but still "feels" it in the brain. The long term fix is to cure MS of course, but that won't happen in my lifetime. So have to get by on the technology and medications available today.

I'm so sorry you suffer from lower back pain. ugh. I know it can be totally debilitating. Are you disabled because of it? Are there meds you can take to help?

Thanks again for your warm welcome! I'm meeting with my pain management doctor today to see what else he can possibly do to get me out of this horrible pain.

Warm regards Ziggy....Ashley

---

Hi Rybee!

It IS a shame...would much rather be here for recreational fun and share upbeat stories. MS is hard because it is not only painful, but causes an assortment of delightfully horrible affects like trouble talking, walking, thinking, depression, emotional craziness, severe pain, blindness, bladder/bowel loss, trouble swallowing, etc. And it is only going to get worse

It has robbed me of my happy go lucky athletic personality, and reduced me to a blithering idiot. As an actress...I have to cancel 70% of my bookings. It all just blows.

But enough about me, I am grateful for your warm response. I adore London, and am determined to return on vacation when things with MS get somewhat under control. Blessing to you as well.

Ashley

 

[Ziggy stardust]

Hi Ashley,
I grew up in Woodland Hills and moved up north to Ventura, about a mile from the beach too. I live in the Netherlands right now.
My back problems lead me to opiates in my 20s and I just stopped all of them last April at the age of 56. My back pain is controlled with ibuprofen at the moment.
One of my good friends has MS. She was a veterinarian in Ojai. She has had to move back to Florida and move in with her parents. I've lost touch with her...I hope she's ok.
I really hope this surgery helps you out. I'm a LVN and have had patients with phantom limb pain...not fun!
Are opiates helpful? Methadone helped me deal with back pain, but I found it too restrictive as far as travel and such..
How did things go at your Drs today?

 

[Taz_Mania_Girl]

Hey stardust,

Oh I love Woodland Hills. Beautiful area, and very familiar with it. I am so glad you are able to manage your back problems with ibuprofen. Kudos! Not an easy task to wean off the opiates, but once you do it's as if your life is returned to you and natural happiness is there. Hoping I can get to that point as well. through surgeries, physical therapy, nutrition, etc. But that is the long-term plan of course.

I had a superb appointment today, thanks for asking. Was at about a level 8 pain in my right leg due to spasms. He could visibly SEE my leg was a rock, and when he flexed my foot toward my body. the right leg started shaking and freaking out.

He talked to me a long time, listened closely to my current and past experiences, and showed compassion and interest. WTH? I was truly surprised, since most of my appts with doctors are 10 minutes in and out, and I'm lucky if they make eye contact.

That said, he suggested an adjustment in my meds. In addition to increasing the morphine from 15mg to 30mg, he said I could take it 4 times a day as needed. He added Opana 10mg for extended release, which lasts 12 hours. No idea about Opana, never heard of nor tried it. Not sure if that is a tiny dose or not, but assuming it's pretty small since he's still learning about my pain. Additionally, he upped the frequency of the Lyrica to 4 times daily, and added Cymbalta. He said the two work well together to treat nerve pain, which is the hardest to treat and doesn't respond well to narcotics. He also prescribed klonopin and ambien, for relaxation and sleep.

But the BEST part of the appointment was he did a spinal block to treat my right-sided leg pain that was causing me enormous discomfort. He injected (something) into my spine which numbed the right leg....and I experienced IMMEDIATE relief. I had tears, and I hugged him. Had no idea how much that leg was hurting until it stopped. Now I feel human again...lol.

So this grumpy, pissed off poster is now a happy girl again. The spinal block will fade within a few days to a week, but can be redone as needed. And the pills will help in the interim. We have a follow up in a week, and I am documenting what I take and how often on an index card, which I update with the med, what time I took it, pain level, etc. He was amazed at my organization. A bit of a detail oriented person, haha.

Wishing the best Ziggy startdust (Bowie fan here too!)

Taz

 

[Taz_Mania_Girl]

Additional info

Hey Ziggy,

You mentioned methadone helped your back pain very well. Is this something that a pain mgmt. doc will prescribe? I have always understood it be a way to wean off heroin. I'm not going to lie..the rush and euphoria of opiates are intoxicating and definitely my first drug of choice for "fun", but not so much for pain relief. However, I'm at the point in my life that I will try anything, except illegal street drugs, if it helps. I just despise the withdrawals that accompany going OFF of opiates. UGH.

I used to be a runner, and experienced the runner's high. I asked about it once, and he explained it was the rush of endorphins (brains natural pain killers) that are likened to opiates. No wonder I always felt crappy on days I couldn't run. I was probably addicted to the high. Now the upside of running is that it has some great physical benefits obviously, and does wonders for the heart, muscle toning, etc. No news there.

But in hindsight I realized I've always had the best feeling from opiates. Some prefer alcohol, weed, acid, whatever. But none of those help much, although in a pinch I smoke weed. I find it makes me want to isolate and not talk to other people. Not really a social drug, but if I use it at night it helps me drift off to sleep and ease the pain and nausea that goes with some of the other meds. I've lost weight and want to gain a few pounds, so it's good for my appetite too. All the stimulate drugs, like coke and uppers, just make me jittery and uncomfortable. Tried acid once and hated the effects...don't like feeling that out of control of my thoughts and hallucinating isn't all that fun. Enough weird and beautiful stuff in the world that don't really need to see the walls wave around and hear voices. I guess if you want to see what it's like to feel schizophrentic, then go for it.

So with I'm curious about what your go-to drug is, either for fun or pain relief (or both), and what your take (as an LVN) is on what my pain management prescribed for me, specifically the ER Opana and Morphine for breakthrough pain. I assume there is no danger in combining this with Klonopin and Ambien? I was told to avoid alcohol completely. Is it really that dangerous? I usually have a glass of wine here and there with dinner, but don't want to if it has actual serious risk, or if they just tell you that to cover their liability.

Thanks for you comments; they have been super helpful. Look forward to hearing back from ya, or others who would like to respond as well.

Taz

 

[Ziggy stardust]

Hi Taz,
I was on methadone for 12 yrs. Its great for pain relief..you take it once a day and no ups and downs, and clock watching, like on regular pills..BUT, and this is a big BUT, I wouldn't go back on it unless I was going to be on it till I die. It's the hardest drug in the world to detox off of. It's took me three yrs to taper and get off opiates. I used suboxone at the end of my meth taper. Suboxone is the worst pain medication in the world and it's crazy to see them giving it to people in pain. It's all about liability like you said. It's almost impossible to OD on it, so Drs feel safe prescribing it.
As far as benzos and opiates...it's safe as long as you only take what your dr prescribed and as long as your Dr knows your taking them together. I can't imagine one or two glasses of wine will do much damage..
We just had my brother in law stay with us...he's a actor in France. He did a piece from Blood Moon here (Amsterdam) Thursday. He's quite dramatic..lol...a stage actor mostly. Growing up in WH I knew lots of Industry folks. My grandfather was the head chef at the MGM commissary. We live in Amsterdam because my husband is a musician. I really miss calif...I've lived here three yrs.
I'm off to a jam session...hope your having a good day.

 

[karmadharma]

Taz,

As another BL'er who has long been here but not posted, welcome! Reading your post made me ache for you, but then grin seeing what heaps of personality you have going on to help you through! And that CA weather has to help. Here in the East USA, is cold and blustery for weeks now! That really seems to make everything worse. But then again, is a good excuse to sit near a good fire and drink tea.

Good to meet you!
Karma