concerned about new symptoms

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Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/16/2008 5:51 AM (GMT -6)   
When I was in the hospital I started getting migraines.The doctor put me on Maxalt. I've had about 6 this month. Tonight was terrible. I was setting at the computer and all the sudden the pain hit my eyes and forhead. I had to cover my eyes and quickly move away from it. I've been up and down all night with nausea. It even physicallly hurt to touch my forehead. This is all real strange to me since I never suffered from any type of headaches for the better part of my life.
Now I have noticed a considerable amount of muscle jerking. Especially in my right arm.
All I want to do is go to bed and cover up my head and not come out until summer. This nausea is awful! I am so sick of this I just want to cry. Do you think these new symptoms were brought on by the pnemonia? It seems like most people start showing Lupus signs right after they have gotten seriously ill from flu like symptoms. Do any of you have these symptoms? What do you do about it? They put me on aciphex but it doesn't seem to be helping the nausea. I wish there was somthing they would give me so I would sleep for about 6 months so I didn't have to feel like this anymore. Plus I never had any trouble with plaquenil but now that they had me off and back on it seems to be bothering my stomach too.
I don't want to be sick anymore! I just wanna cry. How many more symptoms are there anyway?
sorry for whineing I just am tired and miserable. How often do you get migraines? do they just come and go or pretty steady? Is there a a better (food group) that will make the nausea easier to handle?
thanks again for all your help.
love ya
God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Jan 2007
Total Posts : 610
   Posted 1/16/2008 5:55 AM (GMT -6)   


I am sorry to hear about your pain.  I have no experience on that drug, but I suggest you to call the doctor.  I do not know if it is caused by the drug.  Hope you feel better soon.

DX SLE 1988; Pred 10mg, Cellcept 2500 mg, Verapmil 120 mg (for migraine headaches), Famotidine 20 mg BD, Volteran 150 mg (temporary), Calcium + Vitamin D 1200mg

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 1/16/2008 6:17 AM (GMT -6)   
Hey Okie,

Hang in there sis. Oh my . . . *sigh* . . . so sorry you've got migraine and nausea. Light does feel like injury with the migrain. You can try cold or hot compress. Some of the migrain meds need to be taken AS SOON as you notice onset . . . you don't want to wait for it to explode. The nausea . . . I think its an issue of the stomach just shutting down because of the wack head issue. The BRAT diet is the easiest on the stomach . . . but since it really isn't a stomach issue, per say, your appetite might be the best guide. BRAT is bananas, rice, applesauce and toast. Those foods are very easily digested and therefor allow the stomach to rest.

Sending you a hot cup of tea and a hug sis.


In His Grip

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Psalms 139

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UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis

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Regular Member

Date Joined Apr 2006
Total Posts : 46
   Posted 1/16/2008 7:29 AM (GMT -6)   
Hi Okie. I am also on aciphex & just yesterday I was reading an add in a magazine for it & one of the most common side effect listed was headache.So did these headaches start since you started taking this med? Hope you start feeling better soon.

New Member

Date Joined Jan 2008
Total Posts : 4
   Posted 1/16/2008 8:39 AM (GMT -6)   
Hi Okie - So sorry to hear that headaches and stomach problems are hurting you. I too struggle with headaches. I've had every test in the world and they can't figure out why. I have found that massage really helps my headaches. A good professional can work on you neck and upper back and release some of the pressure. My PT can touch spots in my back and neck and take the headache away instantly. Too bad I can't have her around all day!!! I have found that Phenegran really helps me when I have nausea. It makes me sleepy too which sometimes helps the headache. Take Care of yourselfand I hope you find some relief.
Take Care

Veteran Member

Date Joined Jun 2006
Total Posts : 1650
   Posted 1/16/2008 12:00 PM (GMT -6)   
Carol I'm so sorry you're going through all this pain and nausea (((HUGS))). I don't get migraines, but I know they can cause severe nausea (along with the pain and light sensitivity).  I also agree with Rosie that if you take your meds as soon as the symptoms begin you might get more relief.  I do get nausea and take phenegren for it.  To the BRAT diet add chicken broth, saltines, and jello.  I sure hope you feel better soon Sis.  Love, Butterflake
Dx: SLE ('05), depression, diabetes, fibromyalgia, gerd, sleep apnea (use a CPAP), hypertension, IBS
Tx: plaquenil methotrexate Imuran prednisone prozac celebrex lisinopril actos lipitor nexeum seroquel arthritis tylenol multi vitamin C calcium/D flaxseed oil  
PRN: ambien neurontin promethazine xanax
             Better living through chemistry :D    Donna

Barbara Lee
Veteran Member

Date Joined Sep 2003
Total Posts : 2889
   Posted 1/16/2008 12:15 PM (GMT -6)   
Hi Carol:

Gentle (((((hugs))))) for you. We just talked about this the other night. I'm so sorry that you've got a migraine and the nausea. The achiphex your taking is for reflux and it does nothing for nausea. You need either, phenegren, compazine, zofran, or reglan. All of these drugs are for nausea. I take all of them daily the others have offered good diet ideas to help.

I know you don't want to be sick anymore, I understand I truly do Carol. If you need to crawl into your bed and stay there for a day or two. I do it frequently when I'm struggling with the overwhelming battle I have to face daily. Know that I'm send all my best energy to you and lots and lots of prayers. It's alright Carol to feel as if you can't do this anymore, we're here to help you carry the load. You rest and worry about the rest later, just focus on you. Close your eyes, breath in and out and try to relax all your muscles in your neck and shoulders. Things are going to improve these things just take time. Hang in there and I hope you're feeling better today.

Love ya,
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.

Regular Member

Date Joined May 2007
Total Posts : 482
   Posted 1/16/2008 10:32 PM (GMT -6)   
((((HUGS))) Feel better, Okie!
Take care,

Dx: Lupus, sjogren's, celiac, severe allergies.
Daily Meds: Plaquenil, Imuran, Zyrtec, Prilosec, Nasacort, Prozac.
As Needed Meds: Epinephrine, Benadryl, Proventil, Xopenex, Tylenal, Prednisone.

Veteran Member

Date Joined Jul 2007
Total Posts : 1048
   Posted 1/16/2008 11:09 PM (GMT -6)   
Okie, One thing you said really concerns me. The muscle jerking. I had severe headaches with light sensitivity and involuntary muscle movement which turned out to be lupus cerebritis. I pray it's not. With all the meds and issues it's hard to know what''s what; but I really think you should call your doctor. Hang in there and know you are in my thoughts and prayers. Maybe they will at least call you in some phenergan. They gave me Zofran the other night in the ER (I was vomiting) and it did real good. I had taken it before with chemo iv, now they have a sublingual tablet you just put under your tongue. Anyway, I hope you get some relief! God bless you heart, Judy

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 1/17/2008 12:32 PM (GMT -6)   
Carol, I'm worried about the muscle jerking too and I'm concerned about how severe your headaches are, especially since they are new. I'm not sure if the muscle twitching could be a side effect of one of the new meds - you could call the pharmacist or the doc and check it out. I had muscle twitiching after starting a new med and it took me a while to realize it was the med. I was talking to my doc about it and together we figured out I was having a bad reaction to the new medication.

I know you are sick of doctors appointments, but please call your pcp about this - he may want you to see a neurologist.

I can't tell you how sorry I am that you are so sick. I don't blame you for being sick of being sick and wanting to go to sleep for a few months. Any new on home health?

Please take care of yourself and like Barb said, go to bed for a few days if you need to.

Lots of love and prayers,
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears



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Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 1/17/2008 5:39 PM (GMT -6)   
  ((Hugs)) Bless your heart! You sound like you are miserable sweetie. I hope by now you are feeling a bit better. I'm also concerned about the muscle jerks. Have you had a brain MRI recently?
  Please take care and keep us updated. You are in my thoughts and prayers.
                                                      Love, Babs
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 1/17/2008 6:14 PM (GMT -6)   

Thanks everyone for your thoughts and concerns. I was just gonna throw this out to ya since you have mentioned drug problems posible or God forbid something worse. Since my hospital stay I have been put on 4 new meds and taken off of none. mad My new ones are diovan, for blood pressure. which concerns me because I am already on triamterene for BP and she wants me on both. I have never heard of such of thing. I'm kind of thinking that may cause the headache. I'm also on singular achiphex and I have to take z-pack once a month for the ever it seems. She gave me a perscription for 12 months. I hate the thought of being on antibiotics every month. What will that do to my immune system. (that hasn't already been done).

I have a pcp appt monday and I decided I'm not taking this new BP med again until than. They can take my BP if its high than we can discuss it. But the triamterene has always worked for the past couple years without help. I know I needed a little extra in hospital because of the high doses of meds I was on caused my BP to go up but now that I'm home I really am questioning this.

I have another rheumy appt the 31 with the same one the says I have PBC. I feel like this is gonna be just another wasted trip. My head doesn't hurt today so far but my nose has been bleeding. and I still have the jerking. I am going to ask for an MRI. at least  it will tell me what it isn't. because I too find this very unsetteling.

anyway I jut wanted to thank everyone for their help with this I need all the help I can get. Man I can't beleive how many things can happen to a person.

Oh yeah the people are finally gonna be out tomorrow from the home health care. she called me twice to make sure i was gonna be here so I think they will actually show up this time.

love and prayers


God Bless
Lupus like symptoms, with pbc symptoms, stage 4 COPD w/CHF,  Cancer survivor.  Osteoporosis,osteoarthritis
Prednisone,Plaquanil800mg,vicodin 4x5mg,Evista60mg, Effexor 150mg, HCTZ25/Triamterene37.5mg,Xanax x3,Singular,nitro spray, aciphex, diovan. 
Only two defining forces have ever offered to die for you: 1. Jesus Christ 2. The American G. I

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 1/17/2008 8:03 PM (GMT -6)   

Hi Carol,

Sorry I came in late to your posting here... Been away a bit this week.  I'm sorry you're now dealing with all this nausea and headache crap.  Plus the muscle spasms to boot.  I want you to know, you're not alone in all this kind of stuff.  I'm still dealing with complications too.  It never seems to end does it.  One stupid thing after another.  I also wonder how much one person can actually take.  I'm asking the same questions hon.  I wish we had an answer to them.  It's hard to stay positive isn't it?  I hope we can offer you the encouragement you need.  Just remember, you're not alone....  Here's something for ya to munch on.... I've had 10 doctors appointments in the first 2 weeks of this month!!!  Yep. I have ISSUES!!!!!! eyes   So, when you get down and feeling like there's no end to all the crap you're going through, just think of me and I'll go through the crap with ya!!!  We can be crap sisters.  LOL.

I think your idea to not take that extra bp med is a good one.  Just wait and talk to your doctor.  I'm struggling with bp meds right now too.  Nothing is working for me..... Listen to your instincts, you know your body best.

Lots of hugs to ya, sweetie,


I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Veteran Member

Date Joined Dec 2007
Total Posts : 2113
   Posted 1/18/2008 11:59 AM (GMT -6)   
Once all of the other problems are settled if your plaquenil is still making you nausous then you might want to try nibbling on toast or pretzels twenty minutes after you take it and then not letting four hours go without eating. I just went back on plaq after seven years and had stomach problems from it and this really helped.
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