Terrible waking shakes and tremors

Discussion in 'Fibromyalgia Main Forum' started by nightngale, Nov 18, 2006.

  1. nightngale

    nightngale New Member

    I have been having a problem as soon as the alarm goes off and I know I have to start the process of getting up my body starts shaking and trembling real bad. It's not as bad at 5 or 6 am when I wake up but still there. I take xanax, and a beta blocker at 6:00 am then have to usually get up at 8:40. I have to sit in bed for up to half hour or more before the shakes stop. This has been going on for a few years. I have tried doubling the xanax and beta blocker at doctors suggestion but it just makes me more tired and still shake. I am now just seeing a neuroloigist who has prescribed 100 mg of Neurontin. I had tried 300 mg and felt completely doped up till the next afternoon! I am really freaked out by this. Does anyone else have this problem? He did do some bloodwork too, for electrolytes, enzmes, sed rate, and I'm not sure what else on Friday. Also, my arms are suddenly getting painful and fatigued, used to be just legs! Can this happen after 10 years? I also have CFS, GAD and panic, anxiety, POTS. Thank you for ANY help!!! They keep saying it is anxiety. I can also take clonopin but it makes me depressed and more tired.
  2. sues1

    sues1 New Member

    But not as bad as yours. My regular Dr. had a MRI done on me and thinks I have PD, Parkinson Disease. He prescribed I think it is called Sinemet.....something like that, lowest dosage, I told him I am senstive to meds.

    Only way to tell of PD he said is to try meds and if it works.......well they think you have PD then.

    I recently went to a Neuro. He had a EEG ran on me. My next appt. is first week of Jan! But said they would call if thy found anything, He said that I do not appear otherwise to have PD. I have to agree. But he wondered since the meds are doing me some good. I explained that many CFIDers have used PD meds for shakes and tremors. He did not know that.

    So time will tell. The med I am using for the tremors does help some and I have a little less pain and a little more energy!

    Except for today and last night. I have not slept since I got up on Friday! I am in terrific pain I know it is weather related. It is about 10:30 PM here in Ohio. Possibly some snow in a little while here.

    I can cope with this for I know the pain will not go on as bad forever. I have learned to go with it. Even though I do not live a normal life, there is much to be thankful for. I refuse to be my illness......I am more than that.

    Blessings and Good Luck to you..........Susan
  3. findmind

    findmind New Member

    Well, I only have one question: does this happen in the daytime also?

    I know if I don't eat a good nutritious snack 1 hr before bed, I'm shaky the next morning. Maybe our blood sugar drops overnight?

    If it is only in the immediate waking hour, that may be the reason. Actually, waking up takes up a lot of energy when one has FM and/or CFS. The heart slows while sleeping, and it needs to pump it vigorously just to wake up our brains, and many CFS specialists say we have a heart FILLING (diastolic) problem.

    Well, when we wake, it may not be filling adequately!

    Maybe a 24-hr Holter Monitor would show a problem; maybe not, but it's not invasive and may give a clue to you.

    Hi Sues1, nice to see you...so glad the PD meds help you! I have a friend who shakes most of the time; she claims food helps it, but I haven't seen that, and she does not eat much protein.

    I think PWCs need lots of good protein for energy, and that means (to me) some lean meat often because CFS uses up the cholesterol surrounding our cells in order to perpetuate itself, if mycoplasmas are present, especially. Therefore, we must replenish that cholesterol being stolen.

    Best to you both,

  4. nightngale

    nightngale New Member

    Thank you so much for the replies. I have had a holter moniter and two times the event moniter....blood work always good except for EBV, and yes the worse stuff is in the morning. Though lately I have noticed , like today, that the tremors are there more...had an MRI in 2002 what is an eeg? This new Doctor seems like he wants to just lump my symtoms into one and not really look at the NEW ones. Well he did do the bloodwork. Sues do you have it worse in the morning too? It's almost like I just don't want to get up yet and I know I have to that it sets off. But even if I sleep in as late as I want it happens! So how can it be anxiety. And the pain....don't you have something to take? I take 1 ultracet pill a day and it makes me feel so much better...sometimes I take it as early as 12:30 pm and it seems to give me energy and strength. Was there anything on your MRI that suggested the PD? Mine was ok but can't things change in 4 years?
    [This Message was Edited on 11/19/2006]
  5. findmind

    findmind New Member

    Last time someone asked what an eeg was, I told them about emgs! LOL, was too funny.

    If you do a search, you'll probably get better answers than I give but now I know an eeg follows your brain wave patterns somehow.

    BTW, please make shorter paragraphs; they are so much easier to read and don't get so blurry, thanks.

    Yes, things can change in 4 years, and I think you need to insist on more testing to find the root of the problem.

    Best to you,
  6. shar6710

    shar6710 New Member

    I don't have the kind of problem you are describing but I have tremors after exertion. I had an EEG a few weeks ago. It was normal of course even though had a mild case of tremors during.

    In an EEg they use sticky stuff to attach electrodes to your scalp and then record your brainwaves. They may have you hyperventilate and/or flash lights to see if that provokes seizure activity.

    Good luck,

  7. Goldyfm

    Goldyfm New Member

    I especially have the hand shakes in the morning. I shake so hard I don't trust carrying a cup of coffee across a room without something under it. It usually subsides in a couple of hours. One more reason to have another neuro workup.
  8. quite bad, and then kind of go away after a while. It *can* be blood sugar related, but, I was diagnosed with intention tremors, by my neuro a couple of years ago, as I have them throughout the day, too.

    Clonazepam, and a higher dose anti-convulsant help control them, I'm on the clonazepam for severe twitching & jerking, usually also at rest, but, can ocasionally about jerk me out of a seat, out of nowhere. But, without medication, they are insane! (RE: the twitching/jerking:
    I always get an electical jolt, so violent it almost makes me sick, and my heart races, then some limb(s)(1 or both legs, normally 1 arm at a time, or my spine has jerked so hard, it nearly 'threw my back out').

    My legs-from the knee down, mostly, will fly up, flop around, then drop back down in bed at rest. Both legs can flop up in the air like fish flying out of the water, flapping around-- it's an awful (but painless) feeling. My own hand has slapped me repeatedly in the head/poked my eye before...laying on my side, with my hand up near my pillow.

    But, regarding the tremors, specifically, to my *knowledge* they did not show up on any of my tests, and my neuro did all types (no EMG on arms, though, just right leg, for buckling, causing falls) I've had 2 EEG's due to severe confusion (bouts, thank goodness that hasn't happened in a long time...) that caused him to suspect some type of seizures..(I have time lapses, too, though not nearly as frequent as in the past--I'd just go to the bathroom--then- have no idea if I'd been in there 2 minutes, or 20! Scary.) Honestly, I think I was over medicated. I got severely confused on elavil.

    My tremors, were either masked for 3 yrs, by clonazepam, or they were *induced* by SSRI's, NRI's, and Lyrica.

    On Paxil, Effexor, Remeron, and Lyrica, they became SEVERE. The last 3 drugs mentioned, being the worst. The tremors interfered with me dressing myself, causing me to get extremely weak/worn out in showers, short of breath, frustrated just buttoning shirts, I couldn't stand long, in front of the mirror-i.e. to put on make up etc.

    I know the meds at LEAST made them worse..but, I had never had them, nor been on clonazepam, until I was put on effexor 4yrs ago. It was then, also, that I developed heart palpitations(effexor)-and I am still left with 'sinus tachycardia'(normal heart rhythm, but beats too fast) and have been on heart med, every since quitting Effexor.
    So,..*I* believe, mine were drug induced/intensified,(doctors can say/argue what they want, WE know our bodies better, and time of ONSET just kinda fits-exactly.)

    Apparently these things are permanent, but, with so many diagnosis,,& meds..it's that great old 'chicken, or the egg"? Question once again, my neuro admitted, even after 11 days OFF of remeron, which caused my head, neck, torso, etc to jerk, standing, sitting, laying, etc...that it "could be the remeron" but gave 3 other possible causes...gee, thanks for being so concerned & specific, huh? He just increased my anti-convulsant, at the time.

    I'm way overdue for a visit with him, as, I was on Lyrica last winter, and had the *severe* jerking again, (wasn't on clonazepam), and my pain doctor insisted I go see him, that it was HIS JOB to figure out the *correct, & specific* cause/name for the problem, the definite reason/diagnosis. I told her, he was a great guy, but, had seemed to burn out, after over 3 yrs of 'monitoring' me for MS, and just didn't listen anymore, and would just say "it's part of fibromyalgia" to which, she got angry, and said "IT IS NOT JUST part of FIBROMYALGIA" and HIS JOB to look into...(hmm, yet, I told her he dx'd intention tremors, and to that she said "what's that?" Kinda worrisome..but* she is an ansethesiologist/pain doctor, to be fair..)

    Still, she has *somewhat* a vaild point, but, nothing that concerned me, and said, it could be anything, a virus could've damaged nerves....

    Well..if SHE wants to give it a go, as to which came first, what causes what, etc....lol step on up...be the next contestant. Probably never know, I just do know for a fact, I wish I'd had more of a backbone, and not felt 'pressured' to try every drug doctors wanted to put me on, JUST for fear of being labeled "uncooperative" if I didn't. In doing so, the # of meds, has been in the 100's in 6+ yrs, and Certainly, some have left their 'mark'.

    Have you ever* checked your blood sugar, with a glucometer, in the morning, before having anything to eat or drink? (Fasting blood sugar) If mine's too high or low, I get extremely shaky, but, a lot of other feelings come with it, not just shaking arms.. (sweating, nervousness, almost a panic like urgency feeling to make it go away, horrible weakness & rapid heart rate..)

    Just a thought. Stay on the neuro to figure it out, & diagnose it correctly, ASK if it could be any med (even if he says no....look it up. They aren't even aware* of the majority of side effects, basically just maybe the top 3-5 most common ones.)

    After 2 yrs, I found out Topamax, was increasing my hair loss (already lose a lot), causing complete* anorexia, and most importantly---it was the reason my hands were so terribly numb/pins & needles, NOT MS. I know this, because I quit it, it went away. I took ONE 100mg tablet, almost a yr later- was up all night, in AGONY from numb/tinlging hands/forearms, and weak, heavy, numb legs. Hours of agony, when I was EXHAUSTED and needed sleep. I walked the floors, then sat, then walked, then sat, my legs felt HORRIBLE, and it was scary.

    I don't know, but, do believe--it was also responsible for the worst burning pain in my feet, nearly constant, every single day...that had me having suicidal 'idealation" (no real intentions, ever, just total desperation for it to stop) It truly felt like I had thousands of tiny, hot coals, deep into the tissue of my feet, burning me.

    I haven't had the burning feet since, thank god. I thought Lyrica had stopped it, in the 3 months I was on it, but, I now believe whole-heartedly, it was topamax. Only way I'll know 100%, is if it never returns (pray to god!)

    Anyways, my suggestions are to stay on the neuro to figure it out, and not just *treat*, because, most anti-convulsants, eventually have to be increased, over time, over and over, and can affect liver enzymes, increase groggyness, decrease awareness, slow thinking, etc...or worse. I don't hear too much bad about neurontin, but weight gain (ppl on high doses, the worst, like ? 1800-3600mgs) and groggyness.

    Check med side effects, right down to the "rare but possible" list. A lot can cause tremors, but, so can many illnesses like fibro, don't know about CFS, I'd think maybe just the general weakness illness can bring, might make us have tremors, at times....who knows...

    And, lastly, consider the blood sugar, if no other reasons can be found, you may just mention it. They can run tests for that also. It doesn't sound* blood sugar related, to me, though, because, like I said, usually more symptoms to it, than that.

    I cant even be near alarm clock when it goes off--I get instantly nauseated, over-production of stomach acid, and if forced to get up quickly- will vomit. My body just "jolts" awake, and I physically get sick, i.e. nausea, weakness..and maybe tremors..

    Since I've been sleeping in spare bedroom, with phone turned off in there, I don't get startled or jolted so much, except when dogs bark suddenly...I'm not as "amped up" but, still battle nausea/vomiting, even when woken gently, if my body isn't ready. I can't have morning doctor appts, due to it.

    Our bodies are sure strange. I know I don't recognize a thing about mine anymore, and I'm 2 months shy of *29* yrs old. Been ill since 22 & 1/2.

    Anyways, best of luck to ya, stick with it for a diagnosis/effective treatment (and, I'm going to revisit my neuro, after 20 months!) For tremors, jerks, and muscle spasms/pain. Also past due for brain MRI. Time to see the mechanic(s) LOL

    Wish you luck, & rest.

  9. nightngale

    nightngale New Member

    Oh thank you all I have felt better actually getting some insights. That thing about the alarm going off and you going crazy inside just sounds like something's the same. My stomach churns and I have to hit the bathroom.

    I googled my symptoms once and got some info called Anxiety Startle Syndrome.

    I also have a lot of stress in my life due to my kids problems. This is the third neuro I've worked with, and he is rather abrupt, but seems to know about things. He just sort of gets up and walks out after saying to try something and there aren't even any other patients in the place! I will see what the bloodwork says, she said it would be ready tomorrow.

    I do love my cardiologist, he has helped me the most and my pcp, I could change to another doctor if I want to. It's such alot of effort. I have a condition called POTS Postural Orthostatic Tachacardia that has now been linked to CFS and Fibro, here is the website if you want to check it out. I always thought I had something more than regular anxiety going on and had to find this info on the internet it took years to finally find doctors to diagnose it! Still working on that too. http://www.potsplace.com/

    I will keep pushing for answers, believe me after so long I have found you can find a good doctor but you have to keep trying!

    By the way, I also hate having morning appointments and have 2 this week so I'd better go get in bed. Before I had a hysterectomy in 2002 I'd get up at 6:45 and go to work. Now I just can't get up till like 8:30. Sweet Dreams!
  10. Yep, that's how I've described it to my doctor, the slightest noises, that wouldn't normally illicit such a strong* reaction from other people, in the last few years, has gotten terrible for me. My whole illness (besides arthritis-painful neck/collarbone after car wreck, and hip pain daily since age 18) started off with nausea/vomiting, so severe all I could tell doctors was 'no, no particular food/lack of food, any one thing, could be pinned down to triggering it, it's 24/7." and I continually told them "I just feel like I've been poisoned, my stomach, the severity, and the type of nausea, all I can say is I feel like I've been poisoned" (not even knowing what that felt like, since i'd never 'been poisoned' it was the ONLY way to describe the type, the feeling, and severity, that constantly stayed with me)

    Turns out I was partly right, I DO have mercury & bismuth toxicity. 3.5 times safe mercury levels, and over 25 times the 'safe' bismuth level. YIKES.

    My integrative medicine doctor believes, (along with fillings in my mouth) I have 'vaccine injury' or poisoning. I had over 19 shots/vaccines for military, and nursing home/hospital work, including having *started* the Hep B vaccine THREE TIMES, before a full 3 shot series was ever completed(in the military--the nursing homes never followed through with the 2nd & 3rd shots)

    I had all those, within 2.5-3 yrs.

    I've referred to that "startled" syndrome, when I had heart palpitations, add electical zaps from my chest through my arms, and then also when I have my severe muscle twitches & jerks--the heart races, and takes quite a while to slow again, normally I'm hit with more, before my heart can settle, without meds to control it, and again, the only difference in the feeling is I get a massive jolt down my spine, that shoots out through the limb or limbs, that jerk/twitch. It causes nausea from the jolt, & heart racing.

    Other than the electrical shock sensations, it IS just like someone constantly coming up behind you and yelling "BOO!" Our bodies "fight or flight" syndrome, amped by about 100, I hate meds, but, for the jerks, twitches, tremors, and heart probs, I will stay on those, because, it's AWFUL, to constantly feel all "jolty" like being over-amped all the time, it's draining the bodies adrenaline & other 'fight or flight' hormones, & ones needed desperately for any ounce of energy we can get.

    My doctor is getting ready to check my cortisol & other things soon. We believe i'm having major adrenal issues, which lead to hormone issues I also have, and my body doesn't regulate it's temperature well, along with thyroid problems.

    Again, good luck to you....sounds like you need to yank that neuro by the arm, "Wait a minute buster! I wasn't done!"

    Three* of my doctors, that seemed great, concerned, & caring, have gotten that way in recent years, they're overworked, frustrated, understaffed, whatever the reason.

    My primary doctor is flat out baffled, and feels helpless as she told me about 2 yrs ago, "you know, I'm seeing more and more patients like you, young women in their 20's, with odd complaints, digestive problems, normal labs, or 'borderline" but nothing I can nail down"

    So, I know she's very frustrated. She's also a D.O. but is in a practice, and she's the ONLY D.O. out of probably 8-9 doctors there and I think feels frustrated, because she cannot do all the "out of the box" thinking and treatments she'd like to, due to what her peers might think, as, it is somewhat frowned upon by other doctors, also liability issues (possibly), pressure to stick to regular, modern medicine protocols, then toss em to another doc. or blame the patient if treatment doesn't work- type of stuff. She also seems the type that overdoes (yet-under*treats, and UNDERlistens, nowadays) but, I think SHE feels in her mind, a need to keep up with, or OUTDO her male collegues..

    As for the other two doctors, gastro & neuro, LOL, don't know what* their deal is, burn-out, who knows. My gastro, I haven't gone to in over 2 yrs, though I've been told to now, 3 different times, (nausea/vomiting episodes--they passed, I lived, LOL) he flies in & out of rooms, over & over, he's just totally scatterbrained, always wayy overbooked...he went out on his own when half the old practice went to California, or their home state, etc to practice. I think he probably got tossed ALL their patients,, still...do we as the PAYING patients, deserve short tempered, or even friendly, but very abrupt treatment...sheesh. Higher more help, take a vacation, whatever, but, provide adequate, correct treatments, and LISTEN like they used to/or should...

    I sympathize, the 2 morning appointments. I used to just have to go, since my mother drove me, and mornings were easier on her, (has fibro too) or hubby would, and went to work at 2:30pm and in the 'beginning' I was scheduled for tons of tests, that had to be 'empty stomach' "be here early to drink barium for 3 hrs, etc!" ick. I had to take a trash can, double bagged, in the car or truck with me, & just suffer.

    Now, I won't do that to myself. It's not so urgent anymore, we know *some* of my problems, so, unless I have surgery, I try HARD not to have AM appointments. Just can't do it.

    Take care, & rest well
  11. b~kay~b

    b~kay~b New Member

    hi nightngale i have the shakes too i shke all the time thoguhtmy legs hands head and jaw and tongue i walk wierd now too just to make sure i dont fall i do that alot so i walk with a can i am on mirapex a parkinsons medincine one doc said he thought i did have parkinsons but he is a family md and not a neaurologist so he cant make that call the nauro #2 said pd i dont know the third said no i dont think it is pd fibromyalgia can have those tremros and have that walk and it looks llike pd i guess i will find out as the years go by is wha t i figure. from what i heard if the medicine helps control it then it is pd. well mirapex helps calm it down the shakes not all the way just like what the information said but i tried not taking it and i was sjaking so who know s sometimes i thinks docs dont know until it is far along maybe not in the beginning years who know i hope that the doc #3 is right its fm and not pd but i cant help to still wonderbecause of some of the tremors and jerking i saw michael j fox recently and my body will do that but my hands and head was shaking like katherine hepburn not as hard but just about i know when i researched it, i fit it to a "t" who knpows. i understand it takes some time to diagnose that(PD) meanwhile i will be darn if they take me off mirapex because my experiment showed me i am not crazy lol take care bkay
    [This Message was Edited on 11/19/2006]
  12. nightngale

    nightngale New Member

    Thank you, and you are as good as you were, just on the inside...if you don't mind me asking...what meds are you on? I am getting ready to try the neurontin 100 mg tonight which SHOULD kill four birds with one stone. HA HA.

    Meaning my fibro pain, my anxiety, my migraines, my tremors....most likely I will have worsening of all the above...I took 300 once and felt drunk till the next afternoon....and had horrible morning anxiety!

    I have to keep trying something to get relief. This morning was horrible getting to a 10:30 appt! I only had 5 minutes to eat and nibbled on a granola bar...then when I raced up to the docs, she was running late. I went to get a flu shot and ask one question she spent over a half hour with me! People were pacing in the waiting room but she acted like I was the only one there, God needs to send more angel Docs like that down here. She helped with some other health issues I have and told me to keep working with this neuro and if I want she well refer me to someone else if it doesn't work out...but to give him a chance.

    She even gave me info to try to get into a CT scan study for lung cancer, as I have Copd and want a ct as an ex smoker. Apparently unless something shows up on an xray the insurance will not pay for the ct! and its been all over the news about how to get cts once a year. I called the hospital, near Baltimore, MD and they are calling back tomorrow. I guess you have to be half dead before they will pay for anything. Though her opinion was that a chest xray would be adequate...said she went to a conference and gave me new meds for that too.

    I am starting to worry about PD, I have seen it mentioned once too many, bkayb, I hope you don't have it. My grandfather died of ALS....I don't have any big twitches or spasms...more like just really jittery...

    It does seem like low blood sugar...maybe tomorrow am I shall have some treats by my bed..though I was tested for that long ago, too. I need to make a list and go to my Primary care doc, she seems to listen. What is D.O.?

    It just seems odd that it goes away. I went food shopping on a practically empty stomach after that and I feel ok now. But here comes another morning. I have to get up to get my daughter to school or work on most days,,,,so I have to give myself an hour and 15 minutes just to get up and take a shower and get dressed. That is pathetic.

    Good night.[This Message was Edited on 11/20/2006]
  13. which I plan to talk to my primary doctor about, wednesday. (Sounds like you're getting *somewhere* with those docs.

    My integrative doc, though, after 2 yrs in practice, is getting busier, and doesn't call me on his own about once a week to check on me (he's so awesome!)

    He still always has me in mind, at conventions, conferences, etc...I'm the one he thinks of most, and would this or that new info, or supplement help me. He sees me as his *responsibility* and still a human being, that deserves a shot at life-not just a shot at it, the *Best* shot he & I can come up with. He calls other doctors, e-mails professors, about my case, etc.

    He knows exactly the he** I've been through, and how I've been treated, and is always kind, respectful, and wants mine AND my husband's opinions, info & questions on things.

    I hope he never changes, like so many others have, even that weren't* jerks in the beginning, but turned that way either out of burn-out, or frustration, after everything seemingly fails..

    Anyways, for the time being (I say this because *everything* is too low, to be effective, and I see no point in ANY of them, unless raised, or changed)

    Atenolol-for heart rate, 12.5 twice a day,

    Fentanyl patches-50mcg (1 every 3 days. not worth a darn, generic brand "Sandoz")

    Gabitril-just like neurontin, but diff in dosing, etc I'm on 8mg a day, and that's just rediculously low, to treat my different types of nerve pain. Baby dose. Same as when I STARTED ON IT.)

    Clonazepam(Klonopin) I'm on--1.5mg a day--which makes no sense, I was on 2, and then 3mgs, of it previously, and took myself off it, due to inadequate care/monitoring by ANYONE, and I felt 3 yrs on it, with NO one caring, was too long, so weaned off, but, quickly put back on for the jerking & twitches. It needs to be much higher (at least 1mg higher, I'm having horrible cramps/spasms, jerks, still. Recently, even after HOT showers--I'm spasming in my legs. reallly stinks!)

    I take a progesterone 'dominant' birth control pill,(Zovia 1/35)I think, for about the third time in these 6 yrs, for an ovarian cyst, that's been on my left over for SIX years.

    It never works, they say it'll "shrink" the cyst....I went through probably 6 diff b.c. pills several yrs ago, with ultrasounds every 6-12 wks. It's grown by .4 cm's. Not a whole lot-but, it shouldn't even BE there, and is the size* of my left ovary. They come and go on the right ovary, but they said this last one 'was bleeding into itself'??? but on left, just the same one, that won't go away. All the pills do, is raise my b/p to various numbers (it's very low, without pills, so, it's usually not increased into HIGH blood pressure, but has in the past on certain pills...)

    I just quit these meds, due to ineffectiveness:

    Norco-7.5/325- 4 a day for "breakthrough" pain--that would insinuate that I have times NOT in pain--I don't. It's continuous and my guts don't need more* erosive drugs..

    Steroids-of anytime. OUT, never again, ever. TOO HARD on me.

    Aciphex-for reflux- not effective--though, I seem to have more acid now, than before I took it. Like I'm flooded with it now...but, i plan to control my DIET better, not take stupid proton-pump inhibitors forever, which have been linked loosely to stomach cancers.

    Lunesta-3mg, for sleep- It didn't help one bit, neither did ambien CR. I just stick with my sleep naturally supplement...better than rx meds, and better than nothing, though, sometimes works, sometimes doesn't.

    Provigil-I have samples left over 200mg--I take them *ocasionally* because, they're about only good for a splitting sinus/tension-type headache, for me. It helps keep my eyes open--sometimes, but, that's about it...still no good to anyone if "the lights are on, but nobody's home" just a zombie with open eyes, then...

    But, very *rarely* I can take it, manage to stay up the whole day (just existing) and then I will sleep better at night.

    Here lately, NOTHING can help me sleep, due to horrible hip pain, & lower back pain (L5-S1 herniated disc) & inflammed S.I. joints. My hips are horrible...have hurt for almost 11 yrs now, but I think steroids have done further damage (they can cause necrosis in hips & shoulders, over long term)

    So, I plan to ask my doctor for something specifically for spasms (though, flexeril, zanflex, have failed) or to increase the clonazepam, to at least my previous dose..

    And discuss other, new meds, (more permanent side effect fears, though, & costs) and see how she feels about a TENS unit, and ask for other suggestions...I don't think any pain medication is going to help me, even if we tried Methadone, the minute *side effects* wear off for me, so do the EFFECTS of the med. Within a week, things quit working.

    I will probably go to neuro for anti-convulsant help, he understands my trigeminal neuralgia more than any other doc, since it is a neuro condition, and only one to treat it effectively. 8mgs of Gabitril won't do it. I was on the maximum dosage of Trileptal, then had 3 procedures for the pain, since the trileptal was getting too high in my blood/liver on tests...

    *sigh* I wish a gluten free casein free diet would solve ALL my problems, but, right now, I'm not even eating every day--don't even know why, but, been through this so many times, I don't even CARE why either. It'll pass in time, or one of my docs will finally "freak" when I've lost 20+ lbs, from it, and put me back on Protein shakes(also refuse) or rx appetite stimulant.

    *sigh* again. What a life/ a cycle, to go through, huh? Things that send people RUNNING into ER's swearing to god, this "is the big one" and that they're dying... We live with many many of those things everyday....And in time, learn WE are not dying...just get to live with em. And, having the stuff 'cycle', just zaps ya, bums you out, cuz it's not gone forever...and yet, some of my doctors don't understand why, I won't go back to gastro AGAIN, to have $10,000's + of tests run---when *I* can tell them how to do the tests better than they can, and KNOW yes, I'm sick as he**, for the time being* i'm not dying..and ALL they can do after those tests show something---is throw the SAME drugs at ya, over & over. They don't get my "nah, I think I'll pass" attitude. When I feel* it's time for a check-up, I'll go....and then in 4-5 more yrs, go again. I can't get it through their heads, that I've already FOUGHT these battles, over and over, and lost, or tried every stomach, etc med that is AVAILABLE. sheesh.

    The time DOES come, when a person* has to say NO MORE. We're either UNDERtreated, or TESTED (the SAME TESTS, rather, than try something "out of the realm of their typical routine") until we're broke, and have more health problems from the tests, preps for the tests, medications, etc.

    whew.....what a tangent! LOL Can you tell I'm dreading even seeing my PCP wednesday!? And, I've still got em down my neck about neuro & gastro, & dentist! UGH! I can't even leave the house- back off people! LOL

    Also--a "D.O." is an MD, who has had additional training, more along "whole body" treatment, d.o. = doctor of osteopath(y), they've had more schooling & additional training, than the MD, and seem to be more "out of the box" thinking, in treatments, Mine would LIKE the balance of traditional medicine, and hollistic/natural medicine..due to her practice collegues, though...she hardly ever does anything non-traditional, against modern medicine beliefs.

    Don't really see any point to her D.O. schooling, if she's afraid (peer pressure) to use it.

    Anyways, hope this helps, take care, hope neurontin helps & doesn't make you feel drunk/nausea, etc if so, it should pass in time, give it it's trial, hard as some meds make that to be, I always try to rough it through the first 2wks, then, if still having trouble, I quit em.


  14. lease79

    lease79 New Member

    My kids come in & out of my room throughout the night & them waking me alone is enough to start my body into full blown shakes.
    Scares me & takes a good 1/2 an hour to an hour sometimes for it to fully settle down.

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