and another thing this neuro said

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catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 10/14/2010 12:44 PM (GMT -6)   
not only do opiates "not help", but I should also get off my ambien because it also doesn't help one sleep. All it does is "knock you out" so you don't remember if you slept or not but it really doesn't help one sleep. Instead she gave me a prescription for zanaflex which I did not fill until I talk to my PM>
Anyone ever hear of this?
cat
sick and tired of being sick and tired

Tirzah
Veteran Member


Date Joined Jul 2008
Total Posts : 2317
   Posted 10/14/2010 1:09 PM (GMT -6)   
Catahoula,
It is true that Ambien/Lunesta/etc. do not actually induce true sleep but rather a sleep-like state. Your body does not get all the benefits it would get from real sleep, though I agree with you strongly that it is way better & healthier to at least not be awake 23 or 24 hours of the day.

I'm not sure I agree with it, but this does seem common with Headache Clinics based on my own experience with a few of them. They basically want a clean slate to start with -- especially with addicting medications b/c it does take time to get someone weaned off of a med & basically they can't be bothered with that (or so it seems). At the Diamond HA Clinic in Chicago they wanted me to go in-patient for a few weeks but I was teaching at the time so that was just not possible. I went to another HA Clinic (small practice) & they had the same rules, though ironically after all that they ended up putting me on a much stronger opioid that I was on before after reviewing my MRI, conducting a number of tests & trying some of the triptan meds (some of which actually did get rid of my migraines, but I also had issues with nerve pain which triptans don't help with).

My guess it they want to try you on the muscle relaxants b/c they are trying to rule out tension headaches. In any case, the muscle relaxants very likely will make you sleepy so it might be worth a shot. They helped my pain in my shoulder/between shoulder blades, but for me the issue was long-term I seemed to get weaker. But in my case there is a lot going on -- genetic neuro condition, nerve damage, atrophied muscles & muscles that overcompensate b/c of they are neighbors of the atrophied ones, plus I get migraines sometimes [though not nearly as often as I used to]. They got the migraines under control almost immediately with the HA clinic. Then we had the nerve damage which my PM treats. And now I am VERY slowly working on building up those muscles that overcompensate so that they don't cause me pain too (which sometimes can radiate to my neck & head).

It sounds like you maybe have a very complicated case as well. Unfortunately, I've yet to have or meet anyone who has a doctor who can manage all those issues. It takes a team & often they don't agree with each other. When I went, the HA Clinic's view was that some meds -- like triptans -- can actually break a pain cycle. You take one or two doses & the migraine actually goes away. You might get another one, but that one's gone. With muscle relaxants, you take them for a few weeks, maybe longer, and have a chance to rest the overworked muscles & then they (best case) heal and stop causing you pain. Opioids must be taken over & over again and they don't actually stop the pain, they just block the signal.

I'm obviously not opposed to them since I take one, but they are less than ideal. If the opioids are working for you & you are able to live some kind of life, then if I were you I'd find a pain clinic that would work with me & forget the HA clinics and neuros and all that. If the opioids are really not cutting it & you're just miserable beyond reason, (and I've been there -- literally hospitalized for migraines) then maybe it's worth considering going through the misery for 8-12 weeks or whatever it would take to get off of your current meds & into the hospital for 3 weeks at the clinic. Maybe they will find something that the other doctors missed or maybe they know of a new treatment that will work & get you 90% back to your old self. That's always the tricky part, isn't is? To decide whether to stick with what is barely working or to decide to endure even more misery in the hope of finding some kind of cure.

I can't tell you what to do. It's a horrible decision to have to make. But I'm sure you'll make the right decision for you & we will support you either way.

hugz,
frances

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/14/2010 1:40 PM (GMT -6)   
Cat it would really really help if you could just add this on to your other posting
as I get confused easy with so many postings...
Healing Hugz
(((((((((((((((((((((((((((Cat))))))))))))))))))))))))))))))))))
I'm sorry, sorry

Post Edited (Chartreux) : 10/14/2010 12:46:58 PM (GMT-6)


Stac/Catz4
Regular Member


Date Joined Feb 2010
Total Posts : 358
   Posted 10/15/2010 7:07 AM (GMT -6)   
Cat,
I absolutely love, love, love my Zanaflex! I have horrid muscle spasms and it brings them down to a level I can almost deal with and as I take two 4mg at night (plus my ambien, but I would NOT advise anyone to do that without a doctor involved!!!!!!!) I get 2 to 5 hours sleep at night now! I feel like...well it feels better and I would not go on any other muscle relaxer ever! They have helped tremendously with the spasms. As far as what your doc is saying about all the rest? It's a crazy mess as far as I'm concerned/in my opinion! Let us know what happens.
Stac/Catz4
Stac/Catz4
DX’d-Syringomyelia C-1 to T-1, DDD, Diabetes Type II, Migraines, Chronic Muscle Spasms, IBS, Panic Disorder, ICC, Hypothyroidism, Bipolar Disorder, Fibromyalgia. Emergency surgery for ruptured bowel in '05 w/colostomy and takedown in '06. Frozen Shoulder and Torn Rotator Cuff in Left Shoulder. Surgery for shoulder recently, now in Physical Therapy.

Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 10/16/2010 7:11 AM (GMT -6)   
Hi again,
 
I take Ambien too (20 mg per night) and don't think I would ever sleep a wink without it.  I did try the zanaflex and it was a wonderdrug, but then I had a problem with my throat swelling and couldn't take it.  I also can take other muscle relaxers, so it's not all that surprising.
 
Anyway, I don't mean to be a party pooper, but please be careful with the zanaflex.  I have a friend and her husband who both use it.  She takes the prescribed amount and it does wonders for her....for him, however, it has become his "drug of choice" so to speak and he abuses it.  We don't even know why or what it does for him, but he always wants to take way too many and has been hospitalized multiple times for overdose from taking so much.   Of course he is CP (from getting crushed between two cars working with law enforcement) and does take additional pain meds, but he would seriously give up oxy to take a zanflex any day.
 
Just be careful, please.  It's a good medicine if taken correctly and my friend gets really good relief from it, but I wanted to caution you about taking that one extra....never, never try it.
 
All my best!
Retired Mom

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16757
   Posted 10/16/2010 3:05 PM (GMT -6)   
I was on Zannaflex for many years and out of all the muscle relaxers I have taken in the past this one worked the best for me. It really helped me a great deal with spasms and I did not get any medicine head from it. So many of the others always gave me the grogginess the next morning, I was also able to function while taking Zannaflex. I hope it works well for you.
Moderator Chronic Pain Forum

catahoula
Regular Member


Date Joined Dec 2009
Total Posts : 184
   Posted 10/21/2010 11:26 AM (GMT -6)   
well I finally saw my PM and she said go ahead with the zanaflex. ( I really wanted to talk with her before adding anything new). Her recommendation was 1/2 ambien for 1 month then every other day for a week and start the zanaflex right away. Neuro had ordered to take 1/2 ambien for 1 week and then stop all together but the PM said that was WAY to quick. So I took both last night. Unfortunately did not sleep at all. I had gone for 16 more nerve blocks in my face and head yesterday and when they called to check on me today the nurse said that the steroids will keep some folks awake so tonight should be better.
I have decided that the Headache Clinic is not for me For the first time in 10 years I am begining to feel something is changing with this pain doc. I can't say what and I can't sat its a miracle but its "something" so I don't want to mess with that. My old PM insisted that there is only one location in the head to inject for the occipital nerve so for 5 years we injected the same place and found no relief. What is that joke about the guy who walks down the street and falls in a manhole but continues to walk the same route and gets the same result? This PM injects from the base of the skull up the head, around both ears and pretty much anywhere we find a "sore" spot. I've gotten to taking an laundry marker and "marking" my head where the pain is raging so we know where to inject. It looks funny but no funnier than when they shaved 1/2 my head (right down the middle) to implant the nerve stimulator!!)
Neuro is not happy, pain doc says "well they will always be there sometime in the future. PM also took me off the embeda and by my request went to 2-norco, 4 xs a day. I have never had any luck with morphine and thats the base of the embeda. In any event, I keep "knocking on wood" hoping that whatever help I am feeling is really helping this time and not just wishful thinking.
thank you all and I wish you a pain free day
cat

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16757
   Posted 10/21/2010 2:32 PM (GMT -6)   
Cat don't be surprised if you are still wide awake tonight too from the steroids. Anytime I did injections I was up 48 hours and then crashed. Back in those days it was incredible what I got done in those 48 hours, lol. It also sped me up really bad and I would work like a maniac. My daughter told me the other evening that she and her husband were going down memory lane about how the they remembered when it was time for more injections I was barely able to move, then once the injections were done, it was this crazy woman for 48 hours with energy like the bunny.

I hope the Zannaflex will work for you, I have never had anything work as well as they did and loved no hang over from them.You know if you have this gut feeling going on about your PM dr then stick with him if you are happy with how he is treating you. You know how these medications work, a lot of people get no relief from Morphine, its all trial & error. If it does not work for you then you don't need to be on it, glad your PM dr agrees. I did great with Norco until they quit working.

I do hope you get some much needed relief.
Moderator Chronic Pain Forum

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 10/21/2010 4:13 PM (GMT -6)   
Straydog was that you in the pink engerizer bunny suit???lol just joking...
Cat sure hope your doing better and getting some relief, that's the main point
for those doctor's. I can't take anything other than Norco and Flexmid for pain control
as the other meds make me so weirded out...Zanaflex did help but made me feeling
fuzzy headed and I would forget things. So these medicines can be a hit or miss
but I will hope you can get relief.
healing hugz
((((((((((((((((((((((((((((Cat)))))))))))))))))))))))))))))))
keep us posted as to how your doing..
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

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