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laila

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Everything posted by laila

  1. Ok well I posted about this before but its way on page 2 now, I had noticed my arm fatigue and pain which was hardly there, has gotten worse, to the point where I could barely type last weekend. After a lot of rest I feel better, my arms still feel worse than before. A steady slow noticable thing. I saw the neurologist today and he did order a few blood tests, I heard electrolytes, muscle enzymes, sed rate....I should have asked his nurse if that was it. I have CFS and Fibromyagia too, but for 10 years it hasn't really changed much except the pain level in legs is bad everyday now, to where I have to take 1 ultracet pill a day. Will those tests show if anything is seriously wrong? Thanks for any advice! He wants me to try 100 mg of Neurontin, and work on just one problem at a time, as I have gone for migraine help, the above, and severe shakes and trembling in the morning despite using xanax and beta blockers. He seems a little abrupt but at least is doing something... Whoops I just noticed my scared silly post did move up. ...sorry about repeating things....
  2. OK Well I saw the neurologist today, as I expected he tried to tie my symptoms to fibromyalgia,CFS but he did order some blood tests, for muscle enzymes, electrolyes, and SED rate was all I caught. He had never heard of using Singulair as a preventative for migraines, and again said he would try to work on one problem at a time, as I have come to him for the migraines, muscle problems, and shaking/trembling upon awaking. He wants me try 100 mg on Neurontin a night for now. I had tried the 300 mg and felt like I was completly zombied out. So we'lll see. I feel better but the arm thing is still there.....I think he saw me trembling but I was more nervous that I would get brushed off. I feel a bit better knowing he did some tests.
  3. I currently am on 2.5 mg of Zebeta, have asthma and Copd, and probably should not be on this med. Is clonidine as helpful? I am going to my cardiologist with this question tomorrow. The beta blocker has helped so much for my racing morning heartrate, but I still feel terribly anxious, in the a.m. , and am also on anxiety meds! No one can figure it out! Maybe I need to double the doses, which has been suggested. But my cough is so awful when I wake up. PS I have quit smoking but the morning cough won't go away, its been a couple of years. I guess I waited too long to quit! :
  4. I am also on Zybeta and only take 2.5 mg in am. How low is too low with the blood pressure? I've had mine as low as 85/65 is that bad? Sometimes it is normal to slightly elevated. I think when I am stressed or overdoing. I think my doctor said to keep the top number around 110, will check tomorrow. The beta blocker definately keeps my heart rate down but I still feel shaky and anxious. It was suggested I double the BB and then am supposed to take midodrine to raise it back up! (the lowered blood pressure.)I find the midodrine tends to make me cranky but I really can't tell if thats what it is.
  5. Those are some good headache links. I was just diagnosed with migraines after half my life thinking they were sinus headaches. Even had sinus surgery. Just saw neurologist recently and due back this week. I tried Topomax and the side effects were awful....anxiety, tension, upped blood pressure, all over weirdness. I was given triptan samples of zomig, but have been reluctant to try....he even said I may not be able to tolerate due to pots. So am I supposed to try it and see if my heart goes crazy? Here is another good link re: headaches: http://headaches.about.com/cs/diagnosis/a/sinus_migr.htm. The funny thing is that everytime I got these headaches I would take Biaxin, an antibiotic, and feel sooo much better the whole time on it. No doctor can explain why. Makes me think I have some other kind of infection in my body cause I have such good energy when on this med. Futurehope have you ever tried ultacet? I take it for fibromyalgia and can function quite well I usually take one pill in the afternoon when the pain gets too much then I rest and can then function for rest of night. I do feel kind of grouchy, but its better than vicadan for me.
  6. Thank you all for your kind replies and the website. I will call my neurlogist tomorrow. I have felt better today after a long sleep but something seems off....just not normal. The ER idea is out, I agree unless its really bad that would be a big waste of time. I guess I had a mild panic attack. Today I went around town and took care of errands with dear sweet husband, so I would have more free time tomorrow, I was working myself into a frenzy cuz too much to do. I did fine with walking and even cooked supper but the arm and leg stuff still there. Yes, Futurehope, I see a neurologist in Crofton, I beleive we both saw a Dr. K near Baltimore at one time, I remember talking to you about that. I found a great cardiologist in Crofton who diagnosed me with POTS and has been a big help, he is so nice, it was a miracle to fianlly find someone. I was just recently referred to the new neuro, who seems ok so far, just a little abrupt and well, you know, like most doctors. I have recently found a gem of a pyschiatrist, and PCP, too so I guess I'm getting spoiled. I know one thing, if this guy tries to blow this off or won't test further I will find someone else. I'll let you know what happens. Thanks again for the support. You can only find here. My husbands great but he can only take in so much, no one really understands how frustrating all this is except the one's living it.
  7. Hi, All of a sudden a couple weeks ago I noticed my arms were starting to hurt and feel weak, ie: brushing hair, reading in bed, and now my arms and legs are really weak and wobbly. Stressors have been real bad for me also. But have never felt this way before. I had actually just seen a neurologist before that and am due to go in Thursday, for Migraine stuff. All of a sudden it hit me real hard today and I got scared. I have had CFS and Fibromyalgia for years and never felt this bad. Could I be spiraling into polymyostis or something? I have been working extra hard around the house but overdoing has never caused this before, just temporary fatigue. My arms hurt just to type. Like all my muscle are pulled. Should I wait till monday or go the the dumb er. I guess since I can breathe and swallow ok it is not life threatening. My neck muscles have been hurting too. Too much computer? dumb old sickness.
  8. Maybe sinus related? I get sinus infections where the pain is all around my eyes, upper and lower jaws, stabbing pains sometimes, if let untreated it spreads to top of my head. Sometimes I don't even have fever or yellow mucus just bad pains. And start feeling weak and sick. It can start around one eye and then spread and then I just feel worse and worse, I have even had sinus surgery but still get this. My sinus dr had me get a cat scan after my surgery and another bout of this and said there was absolutely no sign of infection! He suggested maybe it was TMJ which I also have and prescribed a muscle relaxer. which I hated then just quit going to him. I do get them less frequently but the only thing that helps my "invisible infection" is antibiotics. My new PCP provider will prescribe these, she said sometimes you just can't explain things. (Especially for me ) I do use a nose inhaler too, Nasonex.
  9. I have a cardiologist who knows about POTS and is very very nice. He works out of Crofton and Riverdale. He handles all my POTS medications.
  10. I was diagnosed with both Chronic Fatigue Syndrome and Fibromyalgia, way before POTS. Then I kept feeling like something else was going on and finally got the POTS dx as well. I do know that if I get enough rest I do feel better, but just walking from the car to the store feels like I am walking through water and so painful then I'm usually better in store. I take ultracet for the pain and it seems to give me an energy boost, maybe cause the pain is gone? I take that at night. I first noticed it in 1995 when brushing hair, cleaning windows, etc that my arms hurt. Then it spread to legs. Sounds like Fibromyalgia and/or cfs. Ive read they can be connected with POTS. Do you still want my cardiologists name in Maryland? He is a very caring doctor and had my diagnosed with POTS in three weeks after 8 years of farting around with clueless docs.
  11. Here is my experience: I think drinking that slimy liquid was the worst, but I just worked real hard to do it as fast as possible and it helped for it to be cold. My mom had one and had to take pills and some sort of phospate stuff which she said was not bad. Then I've heard some people are put under and some aren't. I was wide awake and I believe they used versed and fentynl and when he was putting in the instrument I got a real bad pain at first in my stomach like a real bad gas pain and I said OW OW OW! and I heard him say more fentynl to the nurse and then in seconds I was ok. I actually watched my colon on a tv screen and even commented that one part looked like a cinamon roll! I guess I was pretty loopy. Maybe it would be better if you asked not to be put completly under so if you have pain you can tell them. Good luck!
  12. Hi there, You can email me at lailavia@aol.com and I will give you the names. I don't know the exact protocol for that on this site, but this cardiologist must be one in a million. Even his nurse raves about him. I have even been to one of the "top" cardiologists in the state and was not diagnosed. I happened to pick a new PCP after getting disgusted with old one, who immediately sent me to him and I was diagnosed within 3 weeks! This is after 10 years of echos, ekgs, panic attacks, event moniters, etc. He works in Riverdale and Crofton. I live in Bowie.
  13. I have been dx with POTS, cfs and fibromyalgia and all I can say is that if I get enough sleep I generally do ok but some days I just get ssoooo sleepy I have to lay down and it really su==ks, but if I try to fight it it just gets worse. I have also noticed that if I take 1 ultracet pill in the early evening it takes away most pain and gives me an energy lift. This was prescribed by my rheumatologist but my POTS doctor now will prescribe it. It does make me kind of cranky sometimes though. I have been waking up all stiff and stuff but I only take it at night. Cause Im on so much other stuff.
  14. I finally decided to try some lexapro since I found a new psychiatrist who actually gives you 45 minutes and listens! She upped my meds from 4mg xanax xr to 4mg regular xanax for day and up to 2 mg clonopin for sleep. I was trying lunesta which made me feel sort of woozy next day. I am also taking 2.5 mg zybeta a beta blocker am for morning tacky and midodrine as needed. Anyway I tried low dose of Lexapro and got so depressed I did not even want to get up. Granted there are a lot of personal problems going on but I at least try to start out at some point. It didn't seem to give me any weird physical problems like all the other anti deps I have tried for 10 years. Except depression. So now she wants me to try Respiradol. And cardio agrees. He is the best doc I ever had. AFter 10 years of crappy docs and no diagnosis I finally found the best ones in Maryland I beleive. The problem is I still have this awful morning shakyness that will not go away when I have to get up unless I lay down for awhile. Its such an awful feeling. At least I feel like someone is helping me now!
  15. I take 2.5 mg of betatoxal in the early morning before I get up as I only seem to have morning tachs. The prescribed dose was 5 mg. I still get extreme jitters and shakes even though I am now on 4 mg of xanax a day and 2 mg of Clonopin to sleep and I just started 5 mg of Lexapro. I have anxiety issues. I think that if I know I can sleep in its better a bit, but if I have to get up I shake like a leaf and have to lie down after using the bathroom for like 30 minutes at least. Just started all these increased dosages, wonder what new doc will say. Maybe I should up the beta to 5 mg. It's such a weird uncomfortable feeling, not like a panic attack or even anxiety attack, but something like that. Been working for years to solve this and finally have some good docs helping!
  16. I think drinking the stuff is worse than the procedure.....I just tried to get it down fast.....salty slimy sea water!
  17. Ok I am printing this thread, the only time I feel halfway decent is if I am on Biaxin, forchronic sinus problems, and my ENT also said it has an anti-immflamatory effect. But this has been for 10 years now! If I"m not on it I feel weak, shakey, rubbery legs all day. IF it were lyme can you stay on them forever? I guess I'll bring this in and show my doctor. I am just finishing up a 28 day course! I can almost do everything I want when on this stuff. I still get bad leg pain and take 1 ultracet a day at the most, which really helps the pain and keeps me going longer.
  18. Hi everyone, My mornings are awful too, the beta blocker early a.m. has bought down the heart rate but I have really awful shakes for awhile. I can't stand it anymore. I even have tried doubling my xanax doesn't seem to matter. I have to lie down ,turn on the radio to make myself get going, then it gets better. If I don't lie down the shakes last for hours. Then I sit up in bed and try to make calls or lists, or balance my check book. My blood pressure and pulse were tending to jump up in the morning, then drop. So now I take Midodrine after I get up and feel better. Why am I shaking like crazy? Oh and if I am not on an antibiotic (Biaxin) for chronic sinus infections I shake all day and feel weak and my legs feel like rubber. Thinking about the lyme thread. Have had western blot and been to an infectious disease doc for a million tests, all negative. Maybe I need Klonopin.
  19. Go the the Dr. or ER. My mother had an ulcer that perforated and she almost died. I would call the hospital or Ask a Nurse now! Severe pain like that sounds like a problem.
  20. I was once concerned about it being partial seizures but my doc asked if I was aware of it, I guess if you are its not considered that? Like it would be if someone tried to talk to you and there was no response.....
  21. Regarding the blood presssure and heart rate, that is what the anesthesiologists job is, so he better do it right! Or else! They stare at the moniters and they will adjust stuff if needed. I looked up your procedure. You usually talk to the anesthesiologist too so maybe you can voice your concerns then. Good luck and let us know how it went.
  22. My teenage daughter has a sweat problem and her doctor prescribed something you have to get with a prescription. You put in on at night and then wash it off in the morning and then put regular antipersperant on. I don't think she is using it right though. You know how teens are. She doesn't smell as much just sweats. She won't even wear light colored t-shirts.
  23. Is there any possibility she could be sick? My son whos 24 just ran a high fever for 5 days thankfully no one else has gotten it. He went to the Doctor and was prescribed antibiotics, I asked him what they were for and he didn't know! He's shy and said the Doc handed him the script. It was actually a physical first one in like 7 years he was going for and he has social anxiety and tried to get out of going, I pushed him to go in case he did need the antibiotics. Still not sure if if was a virus, maybe the doc thought he was getting bronchitis, he had a cough, body aches, etc. I hope I don't get it I will be layed flat for a week! My temp tends to run low and alot of times I feel feverish and it may be 99, but I rarely get high fevers. I just feel like I'm sick half the time anyway.
  24. I have had general anesthia several times when I was in my twenties I did fine. I had a bad reaction after my hysterectomy, but that may have been from the demoral I could self medicate with, it was right when I came too and I started puking then they gave me a shot or something in the iv that stopped that. Then after my sinus surgery I was perfectly fine, I was so nervous because of the other time. I mustv'e been a little"high" cause I kept babbling about how great I felt even though my face hurt really bad. Well just a horrible uncomfortable place to have surgery. I think it depends on the kind of anesthia used, the guy who did my nose thing said its different stuff they may use depending on the procedure. Just make sure you have a loved one near, to help voice your concerns, after the procedure. My husband had to leave with my poor little girl after the hysterectomy ( I thought I would be ok) so she wouldn't see me puking. But it passed really quick. And that was Major surgery, actually made my pots worse and the recovery period was not 6 weeks! It was more like a year! I could barely fold laundry or walk for a month. I had a c section when I was in my 20's and bounced back like a rubber ball. After this one when in 40's I felt like I had been flattened by a mack truck. I literally couldn't move in the bed for 24 hours. But they make you try to sit up, etc, then I took a shower by myself the next day almost passed out! Ok I am just rambling now but I think you'll be just fine. The worry is worse than the actual procedure, for me anyway.
  25. Well it sounds like you need to get your throat looked at! You may have strep throat! And with your sister sick who's going to look after you both if it gets worse. I hope you feel better. Is there mumps out break there? It's strange but I heard on the news that there have been outbreaks in part of the U.S. Get thee to a doctor! The allergies have been so bad here that my eyes got infected and I had to get real expensive eyedrops. Then the next doctor said they were infected, and I had to get antibiotic drops. Its a real bad pollen season here in the northeast U.S. I heard on the news that old people who have never had allergies are having them. I know I have never had such problems with my eyes I had pink eye in Feb too! It's like I just keep getting more new problems. Nice to chat with someone from around the world! I think I'm addicted to the internet now! I tried to go on it and my computer was acting weird and I started getting upset!! This is sometimes my lifeline to sanity.
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