New to board and Neurontin question

[rajenki]

Hi...

I feel silly typing this message again. I posted one yesterday, but thanks to the hacker, it's no longer here...so if this sounds familiar, I apologize. And if you responded, I didn't get it

My name is Becki, I'm 31 and I live in Tacoma, WA. I've recently self-diagnosed RLS as the cause of the "shooting" pain down my left leg and sometimes through my groin area that starts just as I'm about to fall asleep, and is somewhat relieved by moving my leg. It started 3 years ago while I was in the rehab unit of a hospital after sustaining an incomplete spinal cord injury.

In the 3 years that I have been complaining about this, nobody EVER said "RLS"...I discovered this through research online (I'm avid about that kind of thing) and finally heard the tv-commercial for this website last week. I have tried the following drugs (I apologize in advance for the spelling massacre that's about to happen):

Tizanadine - couldn't get out of bed the next day due to fatigue

Percocet - helps me sleep, I think takes away pain. Doc made me discontinue because of concern for depression (as if being paralized wasn't already causing depression)

Cyclobenzaprine - works but renders me useless the next day

Methocarbomal - did I even take something? Tried max dose...NOTHING, full pain and not even a little sleepy! Maybe it was fake, cuz it did absolutely NOTHING

There's one more I tried...can never remember the name, but my dad urged me to get off of it because it has a negative history. It didn't work anyway, so I had no problem discontinuing.

Currently Using:
Lorazapam - Helps me sleep and I think actually takes the pain away, concerned about addiction
Vicodin - helps me sleep, but still notice the pain...just don't care. Concerned about addiction

Neurontin

Here's the thing with Neurontin. Initially I was on 200 MG every night and 400 when the pain was bad. First two weeks I was skeptical because it wasn't working, even at 400...but after 2 weeks it kicked in and worked WONDERFULLY! I had 2 months of restful sleep every night with NO pain. I was THRILLED! It makes me sleep a tiny bit late...but I'm totally functional the next day.

Then I started having a problem breathing. I was ALWAYS yawning or taking a deep breath and most of the time I didn't feel like I was "completing" the yawn or the breath...I never felt satisfied. At the time this started I was on a ton of meds: BCP, Wellbutrine XL, Neurontin, Atenalol, One-a-day vitamin and Valtrex. I have been on BCP and Valtrex for years...I was SURE that wasn't it. I've been on Wellbutrine for 6 months...pretty sure that wasn't it. Docs didn't think it was the Neurontin because it's not listed as a possible side effect. 2 docs recommended tapering and discontinuing atenalol (blood pressure med...I'm a mess. I'm cutting out a bunch of my problems to make this long story short-ish). I stopped atenlol and started Lisinopril. Breathing problems didnt stop and Lisinopril was starting to give me an annoying cough (common side effect).

By the way, I was also tested for Asthma and Allergies in this time...both came back negative. Blood oxygen level, even though I was feeling "short of breath" was always 100%. Chest x-ray showed nothing, and no congestive heart failure.

Finally out of utter desperation to BREATH, I stopped the heart med and the neurontin. I just couldn't stand it any more! Well...2 days later, the breathing started to improve. I had a week of fairly normal breathing, taking Lorazapam at night for the leg pain. Then one night the pain was real bad and I was desperate...so I took 400mg of Neurontin, then did it again the next night. That SEEMS to have lead to 5 more days of breathing problems. At this point I'm not on Neurontin at all and am breathing relatively normal. Still yawn a little more than normal, but am able to complete each yawn, wich is so nice.

I'm going to test the Neurontin ONE MORE TIME, to see if it is in fact the culprit. I'm REALLY disappointed. It was working so well for me!

I am currently alternating nights of Vicodin and Lorazapam. My scrips are VERY limited because of how they are controlled. I'm allowed 10 Lorazapam a month, and 30 Vicodin before I have to call doc for a new RX...I'm petrified of looking like a drug seeker! I called the doc's office today and told them that this is what I have resorted to...I haven't been able to talk to the nurse about their response yet.

Today I also called a sleep clinic at Swedish Medical Center in Seattle. I have an appointment next month with a sleep specialist that specializes in RLS...I am so anxious for this appointment! I wish I didn't have to wait so long.

So...I guess I just wanted to get my story out there and see if ANYONE had a similar experience with Neurontin. Like I said, I'm gonna test it again, but only after a couple of weeks of real good, normal breathing. If it turns out that is it, I will start the BP meds again. My cardiologist is keeping an eye on me.

I'm not sure what my next "medication" should be. I've been reading over the different things...I just don't know how severe I am and how deep into the meds I should go. I know my problems aren't as bad as many of yours. I do have the pain while sitting sometimes (like right now), but it doesn't get to me as bad as it does at night or during a nap...probably because I can just go ahead and move my leg right now. I've always described the pain as a "electrical charge" going down my left leg...usually from knee to ankle, sometimes higher, and like I said, sometimes in the groin area, which is a real joy, let me tell you. How do you move your groin to make it stop? Hmmmm....

I'm so happy to have found this forum. I look forward to seeing your responses and getting to know you.

Hugs from the Pacific Northwest,
Becki <----who is popping a pill and heading off to bed....eenie, meenie, miny, moe...looks like Lorazapam tonight!

[LadyFox]

I was on 300 mg neurontin for a different problem (easy explanation: severe back pain caused by nerves being pinched). It worked amazingly well for me. Took away the pain and helped me sleep. I had NO side effects that I'm aware of. I know that's a lower dose than you were using tho.

I know everyone reacts differently, it's unfortunate that this medication seems to be the culprit of your breathing difficulties. I hope you're able to find something else that works again, your story sounds so long and complicated.

Hugs
Laurie

[ViewsAskew]

Becki, if I wrote about my experience with the dopamine agonists along with 1000 other users, you'd think I'd taken a different drug! At low dosages, this drug destroyed my life in a way, yet it helps the vast majority of RLS users.

If you tried it two separate times with the same results, IMHO I wouldn't take it again! You know your body better than any doctor, regardless of what most people have happen.

Since Neurontin worked, maybe one of the other antiseizure drugs would, too. Of course, I'm not a doc, but there are three or four of this class used for RLS. Keppra and Gabitril being the newest. Oh, and Topamax. By newest, I mean the newest in terms of treating RLS - I'm not sure how long the drugs have been used.

It is so hard to wait - one time I had to wait 5 months and I was in the middle of a nightmare RLS period. I kept calling and asking my name to be called in case of a cancellation. They did call and I got in more quickly. If you have a schedule that you can change somewhat easily, it's worth a try.

Did you have RLS before the spinal cord injury? It does often occur secondary to spinal cord issues, but could be primary, too.

Check out the Mayo Clinic Algorithm. It's a good, basic look at how to treat RLS - which meds based on which symptoms. The link to it and many other good articles and sites is in the following thread:

http://www.restlesslegs.org/phpBB2/viewtopic.php?t=549

This thread contains a link to another thread that also has many links in it. Between the two thread, there is a vast amount on drugs and RLS. Until your appointment you can't probably change drugs, but reading this will help arm you with information so you can assess how well your doctor is informed of current theories, etc. And get an idea of what you want to happen next.

One last thought. I have a similar breathing problem. I've had it for years - thought it was severe anxiety, but would never be all that anxious when it happened; it would cause me to become anxious!. I could never get a full breath; it is otruly an awful feeling. A few years ago my sister and I followed Dr Elston Hass diet for finding basic food allergies. When I added corn back to my diet after not eating it for several weeks, within a 1/2 hour I was bloated and soon I couldn't breath. I stopped eating corn for a couple of years. Last year I started eating it once and awhile, and no problems. Then I ate it more frequently. Guess what happened? Indeed, I started having the breathing issue. It lasted for 2 weeks after I stopped eating the corn. A few weeks later I ate some by accident (didn't realized it was in something) and I couldn't breath right again for almost a week.

I'm not saying your intolerant or allergic to corn like I am, but it cold be a similar mechanism. My DH also gets the breathing thing sometimes and he's a celiac. We have always assumed that it is a leaky gut thing and the weird bloating from the gut's reaction to a certain food causes the inability to breath correctly. Again, this is just our take on it.

Ann

[cornelia]

Hi Becki,

I have the breathing problems with Neurontin too. I don't have it all the time though, but when I have it I say to myself not to worry, it's only the Neurontin. Then I forget about it. Apparently I have it not as bad as you. It was an eyeopener when I read about the yawning. I experience exactly the same thing!
Like Ann already said: you can try another anticonvulsant like Topamax or Lyrica. They may not have the same side-effect profiles.

Corrie

[Guest]

Laurie, you mentioned my story is sounds long and complicated...*giggle*...I'm a walking (albeit with crutches) medical marvel...I feel like I am always at a doctor for something and I worry they think I'm a hypochondriac. When I was 28 my gyno found a fatal congenital heart defect. It was during the surgury to repair it that I suffered the spinal cord injury. I swear before all this happened I went to the doc once or twice a year. Now I max out my "annual out of pocket expense" regularly

Ann, your suggestion about an elimination diet is something I actually considered a couple weeks ago. Frankly, I wouldn't be surprised if it's a combination of the medication and a food allergy. I want to try it, but I'm weak willed when it comes to food....but since I would LIKE to use the Neurontin because it works for me, I guess I should buckle down and do it.

Corrie! AHHHH....I found someone with the same side effect! Yay! After all the research and asking around, I thought it was weird I was the only one that this ever happened to.

Thanks for all the info everyone! I really do appreciate your responses. Sorry for the novel...I'm a little verbose.

Becki

[ViewsAskew]

Becki, the food elimination is easier than it sounds. Mu sister and I made excuses for weeks before we did it. We thought we'd only give up a couple things at a time, then we thought we'd do half. In the end, we just went out and bought replacements for dairy and wheat, used no-sugar-added jam and almond butter for a sweet tooth, etc. It wasn't nearly as bad as I thought. The best part was that I lost 10 pounds of bloating the first week - I didn't know that I was so intolerant to dairy and corn and sugar. Because my then boyfriend was a celiac, I stayed gluten free, too. Now that he's my DH, I still stay gluten free for the most part, although I admit to eating gluten anytime I eat out and he's not with me .

Ann

[rylaff]

When someone has to take multiple drugs for different things, it is really difficult for even the best of mds or pharmacist to know how they all will interact with an individual. While you have had difficulties with neurontin perhaps one of the other meds used for similar treatments will do well for you. I am presently on requip, which is a godsend. RLS gone, not a bit of a problem and no side effects for me. I also take atenolol and some other meds. Give it a try.