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Lyria

Just letting you know that the dizziness with Lyria has greatly decreased. I'm taking the Dilantin 3 hours after Lyria. Don't no if that is the reason but I am sure not going to take them together again and see if that increased the dizziness! Its really too soon to tell if it is effecting the pain. I have not experience any squeezing, burning, or shooting pain for two days. I can have several good days and then pain will strike again. Will see what happens for the next 2-4 weeks. The fatigue remains. The arms feel so heavy. I have tried Provigil for fatigue and it did nothing. I did notify my neurologist of the changes. Have not heard from him yet. Thanks Beth.

Re: Lyria

Beth, keep us updated on the Dilantin and Lyria (it's not Lyrica, right?) I took Dilantin and the dizziness did wear off. I feel like it might have been working but not fast enough as I was having some terrible episodes at the time that I started it. So, I the doc gave up and I started a new drug (this was before genetic test confirmed MC). I have thought about trying Dilantin again at some point.

Re: Lyria

Hi Judy,
Just wanted you to know that, over time, Provigil actually had a rebound effect on me, and I felt worse. Glad you stopped taking it. Mary

Re: Lyrica

Hi,

I corrected the spelling of the drug, sorry. I wanted to tell all of you that since April 1st, (this is not a joke) that fatigue is totally gone, absolutely no stiffness, and I only experienced pain in the right leg after standing and walking for hours and not the usual "just after minutes". I went camping and was out in the cold (30's) at night and did not become stiff. No squeezing pain to arms, clavicle area, left chest, ribs, or legs. My family can not believe it. I thank God and hope this isn't temporary. This weekend, I intend to work hard at home and in the yard. I'll see how I feel after a day of continuous work. My husband can't wait to be relieved of his housework duties. I continue to be weak, but now feel like exercising. (Physical therapy always caused fatigue and muscle spasms - I hope this does not happen) This is a very, very, good feeling. I feel so light and alert. I brought the book "The Vitamin D Cure" by Dr. James Dowd. I started taking Vitamin D 2000 I.U. about 6 weeks ago and Magnesium 500 mg. Lyrica was increased from 50 to 150 mg one week ago. Dilantin and Klonopin were slowly stopped by April 3rd. These have been the changes in medication. Since I started Lyrica and Vitamin D about the same time, I don't know how much Lyrica is relieving the pain because Dr. Dowd stated in his book that Vitamin D relieves pain associated with Fibromyalgia and arthritis and more. My family members have started Vitamin D at 2000 I.U. Each one is going to tell me how they feel in 6 weeks. Just wanted to let every know. Will update you on my process so maybe someone else will benefit from this news.

Re: Re: Lyrica

I have been diagnosed with MC since I was 30 (I'm 49 now). The MDA thought I had MD2 but further DNA tests confirmed that it was MC.

For the past few years I have been dizzy most of the time. I have taken dilantin years ago and that did nothing for me.
I never thought that MC involved dizziness so my doctor & I have gone down other roads. My stiffness is not all that bad but lately I'm having alot of muscle spasms mostly in my legs.

I'm interested in Lyrica and am amazed at what I'm reading. I am so tired of being fatigued and dizzy!

Thanks for the info.

Re: Re: Re: Lyrica

Hi Doug
I was wondering what meds you take because the dizziness sounds more like a side effect of meds or maybe an inner ear problem or any new problem that is.....I havent heard anyone as of yet complain of dizziness from MC but there are others here who maybe have heard of it. My daughter gets dizzy when she has too much ear wax in her ears and that is awful. I would keep pursuing what the problem is though either way because that shouldnt be happening. Maybe even Chronic fatigue syndrome. Good Luck to you, I hope they find out what is wrong very soon. :)

Re: Re: Re: Re: Lyrica

Jody:
Thanks for your reply. I have been dizzy for years and thought it was due to my sleep apnea. Until recently I have not been taking meds. Last Oct I had surgery on my deviated septum thinking the dizziness was from not using my BiPAP machine. The surgery was not much success and the ENT referred me to an Allergist which took care of my allergist. Since January I've been taking all sorts of meds. When I spoke to her she said that's not allergies or inner ear problems doing that. Dizziness can apply to a number of problems and CFS is definitely one of them. I'll be seeing my GP soon and see what direction he has for me!
I'm learning more about MC all of the time. Thanks again.

Re: Re: Lyrica

Judy,

I'm sorry I have been so slow in getting back to you, but it sounds like you have been doing well anyway. I'm impressed that you were able to get off the Dilantin and clonazepam as fast as you did. It sounds like your new regimen is a winner so far. It's too bad you can't be sure which compounds are doing the job since you started them at the same time, but it seems that's the way it always is. I too have a difficult time changing just one thing at a time. Are you taking the Elavil that you mentioned in your March 14th post?

Lyrica is an interesting drug. It doesn't do any of the things that one might think it would do such as block sodium channels or opiate receptors. It also doesn't affect serotonin and dopamine receptors and doesn't inhibit serotonin, dopamine, or adrenalin reuptake. It binds with a subunit of voltage-gated calcium channels in the central nervous system, but its mechanism of action is unknown.

Thank you for keeping us updated as to your progress. I hope we will hear further good news in the future.

Anne H.

Re: Lyrica

Sorry, Just reread my post. I meant to say, I'll update you on my progress.

Re: Lyrica

Anne,

Yes, I am still taking Elavil at night. I sleep without any muscle discomfort but have been waking up with my hands and fingers (except the little finger)numb and with pain. This has been happening since January. I have had one nerve conduction test that indicated carpal tunnel (2 years ago) and one that indicated not. Went to see a plastic surgeon two weeks ago and he said I do not have carpal tunnel and to go see a specialist in St. Louis that deals with nerves in the hand.

I read about Lyrica and I would not have thought it would help me, but, so far it has. Still no pain. I worked continuously for 5-6 hours in my home for the first time in about 8 months. I got tired but not like the fatigue I had from doing nothing. I think the actions of magnesium are relieving the stiffness, vitamin D relieving fatigue and pain, and Lycria relieving pain,also. I once stated, from my experience as a Hospice Nurse, it took as least 3 medicines to relieve pain with my patients.

I'm so glad, Anne, that you and others so freely respond to one another. I have learned more from this website than from articles and doctors.

Doug -- I don't know why you are dizzy. Dizziness can be caused from side effects of meds, inner ear problems, toxicity from meds and vitamin A, low blood pressure, and so much more. I hope you can find an answer. It seems like those of us with MC have unexplainable problems.

Jan -- missing your input. You are still in my prayers.

repetitive stress injuries like carpal tunnel

Hi Judy - Just wanted to put in my 2 cents' worth about CTS and EMG's. You don't necessarily have to have Carpal Tunnel, or de Quervain's. You should really read Dr. Emil Pascarelli's Guide to Repetitive Stress Injury. It is revealing and helpful. I bought mine used on amazon.com - I think it cost me about 4 dollars - it was suggested to me by one of my platoon of hand therapists, because my MC made real therapy a torture for me. Anyway, had I had this book before my multiple surgeries, I probably wouldn't have had the surgeries. It's enlightening, and everyone who has even a twinge of RSI, or who does a lot of any type of repetitive upper extremity activity ought to read it. Well, that's it for now! lois