New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/9/2007 8:53 AM (GMT -7)   
I was very recently diagnosed with lupus.. which doesn't mean I haven't had it for years, I've been sick on and off since I was about 13 years old, and I'm now 25. In the past few years I've been having seizures, and horrid migraines (The migraines I've had since I was a teenager.. the seizures, I've only had for a few years.), which I've been told now is because of the lupus. I was put on a list of medications, depakote being one of them, for my migraines and seizures. I was wondering if anyone else has taken the drug.. I always get a bit nervous taking new medications. I was also put on Lyrica, for my fibromyalgia.. zantac, for my Biliary chirosis (sp) , metrapolol, for my high blood pressure and a-fib, and ativan for the tremors that come before seizures and with FM.

I was also curious if anyone else has had such a hard time being diagnosed. From what I've read from other people, I know I'm not the only one.
Like I said I've been sick from the time I was about 13, with horrid migraines, joint pain that was written off as arthritis, and even unexplained fevers. My mother would take me from doctor to doctor asking them what exactly they think could be the reason even for just my fevers and they could never tell her.. then I was diagnosed with fibromyalgia when I was pretty young too.. since then I wasn't able to work much, I wasn't even able to finish high school, after I turned 18, I could no longer be on the insurance my mother had, and I could only go to the ER and random doctors when I could afford it which was few and far between... every time I went into the ER, they treated me as if I was just crazy and drug seeking. Apparently it didn't matter that I had obvious problems like high blood pressure, tachy cardia atriel fib, and even seizures. I finally got to a free Christian clinic that was a total God send, I told him all my symptoms and the first thing he said was lupus.. I was tested, and many different tests came up with the conclusion I have lupus.. I haven't yet started steroids or any anti-malarials because my central nervous system and major organs are involved, and the steroids could possibly increase my already increased heart rate. I know it sounds crazy.. but I feel as if getting diagnosed with lupus was a weight off my shoulders. I no longer feel as if I'm crazy... I feel for everyone that has to deal with it or know someone that does. It seems as if lately though, I've had far more bad days then good.. with both the FM, and lupus. I'm not sure if it's because of age, or what it is exactly. When I was younger it seemed as if I was able to deal with it a bit better than I can now.

One more thing I was wondering, sometimes I tend to get a bit mean.. and yell and scream, and cry.. I tend to get really snappy with the people around me, that are nothing but supportive, on my really bad days. I was wondering if it was just me.. or if other people have had this problem as well. I always feel horrid afterwards.. but my friends and family around me, have been nothing but supportive and I thank God for that, without them I doubt I could deal.

My best wishes and prayers to those who deal with the pains and flares of both lupus and FM..

mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 11/9/2007 12:45 PM (GMT -7)   
Hi Rebecca,
   Welcome to the forum. I took Depakote two years ago when I was having seizures everyday. I didn't like the medicine myself, but we are all different. It made me so drugged I couldn't function and was in a daze all the time. Hopefully, it won't affect you in the same way and work well for you.
  As far as getting snappy.... :-) !! I think we are all guilty of that at times. Dealing with a chronic disease and everyday life is very hard.
  It sounds like you have been through alot. I hope things turn around for you soon. Ask all the questions you want. This is a wonderful group that will help you in anyway possible. Please keep us updated and take care. You will be in my thoughts and prayers.
                                                                  Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:Methotrexate,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folic acid,prednisone,lunesta,Chantrix,Tramadol,Nitro.
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


mom7
Regular Member


Date Joined Oct 2007
Total Posts : 33
   Posted 11/9/2007 1:55 PM (GMT -7)   

Rebecca,

So sorry for your troubles.  My daughter is the one that has Lupus she had a brain clott, seizures and headaches etc like all the other Lupus symptoms she has CNS Lupus affecting her brain.  Leading up to this there were subtle signs in gradeschool and things started to change when she was in Grade 10, 2 years ago.  She had major mood swings prior to her serious episode in the summer.  Now that she is being treated her personality is completely changed, her brother and sister can't believe they actually like her again.  Hopefully you will get the treatment you need and feel better soon.

Sharon


Sharon-Mother of a 17year ol with CNS Lupus(brain),SLE,APS,Stoke


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/9/2007 9:43 PM (GMT -7)   
Actually, my mother said I've been on depakote before.. (for migraines) but it was a smaller dose, and it wasn't ER (which this is) and that it made me a bit groggy and zombiesh then too. My long-term and a lot of my short-term memory seems to be gone anymore. A lot of times I either have to write down what the doctor says, or take my mother with me, because it just doesn't stick. I can't remember a word anyone said.
Thank you for the warm welcomes. I'm so glad to find a place to discuss what I'm going through with people who understand.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/10/2007 12:44 AM (GMT -7)   
Hi Rebecca--
My 19 year old son was on Depakote and Depakeen and so was my boyfriend. Besides the general fatigue and flulike feeling they got from it, my son, who has epilepsy, got very moody from it. I don't think he really slept well on it and was very sleepy during the day and like konked out at night, but he felt like even though it can put you into a really deep sleep, its not like a real restful restorative sleep, probably because it might make snoring and sleep apnea worse in people who have it. He switched to trileptal and is doing much better. There are newer medicines like topamax that handle seizures and migraines, but in your case, I hope that they are investigating a vascular (blood vessel/blood pressure) cause for your seizures, because some of the meds effect your blood pressure which can make things worse or better depending. My son has very low blood pressure and trileptal is the only thing that has helped him. He also has a heart problem, syncope like wolff-parkinson-white and has a heart monitor. They refuese to test him for lupus or any autoimmune stuff even though I have it. Depakote lowered his blood pressure so much he started fainting and nearly dying like. It was bad. If you have high blood pressure, like my bf then it brings it down to normal, which is nice.

Depakote is very hard on the liver and even though it does lower the blood pressure, it may not alleviate any portal hypertension from your liver and is known to be very harmful to the liver. Most of the meds are. My thoughts are that you take the portal biliary cirrhosis very seriously and try to see a hepatologist at a good center (Mayo clinic has a program for seeing underinsured or uninsured, if you have that problem or the patient advocate website can help you to find someone who will see you) and I would let a good hepatologist review your currrent drugs and make some suggestions for alternates. Portal biliary cirrhosis is scarring in your portal blood vessels in your liver, where all your blood vessels have to go through to supply blood to the lower half of your body. The liver is like a big filter between the top and bottom half of your body that your blood goes through. Portal biliary cirrhosis causes the blood to back up in the top half of your body, including your brain, which may contribute to your migraines. People with pbc often are larger on the top of their body and carry weight around the middle, at least at some stages of the disease. By irritating the liver more, the medicine you take for migraines and seizures might make things worse. You need to keep taking it until you see someone and odds are it may be the best thing to be on, but I just feel very strongly that when you have any type of liver disease, but esp something like pbc, you need to see a real hepatologist (liver specialist MD, not just a gi doc) and he needs to be very involved in what drugs you burden your liver with.

It sounds like you have multiple serious problems and I'm worried for you and hope that you have access to good medical care. Please try to see a real hepatologist if you havent and involve them in your medicine decisions, and if you think that there is any way that the heart, migraines, seizures and pbc are related and your hepatologist disagrees, follow your gut and get a second opinion. I've never heard of xantac for pbc, but I don't know what all they prescribe, I have NASH (nonalcoholic steatohepatitis) which is a different type of disorder that also causes some other problems like PBC does. The liver effects many things and can cause autoimmune disease. PBC is an autoimmune disease.

As for the moodiness, liver disease causing or caused by autoimmune problems seems to also cause alot of autoimmune endocrine problems, and the drugs we take like prednisone and other steroids, then if you take any type of estrogen for birth control or whatever, or if you need it and don't take it, it will make you very snappy. If you have irregular periods or are menopausal or postmenopausal, you may need some hormones and a check up from the gyn. I got polycystic ovary disease and severe endometriosis from my liver disease and finally got a hysterectomy and every one liked me better once I went on the estrogen patch and I felt alot better, more energy. Then I developed hashimotos hypothyroid, so when I finally got that dx, they put me on thyroid hormone too and I'm even better. A good hepatologist should explain to you all the other problems that could occur with the disease, and you can search the web on it. I can post some links if you want me too. It's sort of all interrelated, which is bad in a way, but good because when you get one thing under control, the other problems usually get a little better at least, if not more.

I will keep you in my thoughts and prayers and if you need help getting health care or something let me know and I or someone will give you the patient advocate site and they have real people at 800 numbers that will find what is available for you in your area and help you in many ways, even making calls and trying to get a doc to see you at a discounted rate or billed later, or both, they are great they will make sure you get to see the type of doc you need. Let me know if you need more help and my heart goes out to you (((hugs))) and hope you feel better. Also, lyrica is really bad on the liver too, there might be something better for you on that end too.
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 11/10/2007 8:40 AM (GMT -7)   
Hi Rebecca and welcome. I'm sorry to hear about everything you have been through and that it took you so long to get a diagnosis and that you are now really sick. Sadly it takes a lot of us a long time to get diagnosed, myself included. For me it took about 3 years which seems to be pretty standard and I guess I could consider myself lucky because I hear a lot about people like you and others that have been sick for a lot longer without a diagnosis and proper treatment. I do know what you mean about feeling a sense of relief about finally being diagnosed. None of us wants to be sick, but when you are sick, you want it validated and you want a name for it.

I'm really glad you joined us - we have a great group of people here. Feel free to ask any questions or just vent if you are having a rough time.

Take care
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

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/11/2007 1:26 PM (GMT -7)   
Thank you very much... and thank you with all the welcomes.
There were other things I wanted to say, but sadly enough I'm pretty drugged up
at the moment. I was wondering though, if anyone has used 50mg Lyrica and it helped
for their FM?
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/11/2007 6:08 PM (GMT -7)   
I realized in the past few days since I started the depakote, I have less seizures but it's emotionally screwing with me.. I sleep a lot during flares, which is what I normally do, but it's made me really touchy, and I've cried and cried and cried. I've fought with most of the people that mean anything to me, and I'm used to people not understanding my situation but for some reason in the past few days all I can do is snap at people and wonder why in the hell they can't understand. It's 500 mg Depekote ER... so, I don't know if it's the medicine but I'm guessing it is. I can't bare to take myself off of it, because it's going to be 3 weeks before I can go back to the Dr. I just want to find something that helps, but I feel as if I'm going nuts.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/12/2007 1:35 PM (GMT -7)   
cured4real? said...
Hi Rebecca--
My 19 year old son was on Depakote and Depakeen and so was my boyfriend. Besides the general fatigue and flulike feeling they got from it, my son, who has epilepsy, got very moody from it. I don't think he really slept well on it and was very sleepy during the day and like konked out at night, but he felt like even though it can put you into a really deep sleep, its not like a real restful restorative sleep, probably because it might make snoring and sleep apnea worse in people who have it. He switched to trileptal and is doing much better. There are newer medicines like topamax that handle seizures and migraines, but in your case, I hope that they are investigating a vascular (blood vessel/blood pressure) cause for your seizures, because some of the meds effect your blood pressure which can make things worse or better depending. My son has very low blood pressure and trileptal is the only thing that has helped him. He also has a heart problem, syncope like wolff-parkinson-white and has a heart monitor. They refuese to test him for lupus or any autoimmune stuff even though I have it. Depakote lowered his blood pressure so much he started fainting and nearly dying like. It was bad. If you have high blood pressure, like my bf then it brings it down to normal, which is nice.

Depakote is very hard on the liver and even though it does lower the blood pressure, it may not alleviate any portal hypertension from your liver and is known to be very harmful to the liver. Most of the meds are. My thoughts are that you take the portal biliary cirrhosis very seriously and try to see a hepatologist at a good center (Mayo clinic has a program for seeing underinsured or uninsured, if you have that problem or the patient advocate website can help you to find someone who will see you) and I would let a good hepatologist review your currrent drugs and make some suggestions for alternates. Portal biliary cirrhosis is scarring in your portal blood vessels in your liver, where all your blood vessels have to go through to supply blood to the lower half of your body. The liver is like a big filter between the top and bottom half of your body that your blood goes through. Portal biliary cirrhosis causes the blood to back up in the top half of your body, including your brain, which may contribute to your migraines. People with pbc often are larger on the top of their body and carry weight around the middle, at least at some stages of the disease. By irritating the liver more, the medicine you take for migraines and seizures might make things worse. You need to keep taking it until you see someone and odds are it may be the best thing to be on, but I just feel very strongly that when you have any type of liver disease, but esp something like pbc, you need to see a real hepatologist (liver specialist MD, not just a gi doc) and he needs to be very involved in what drugs you burden your liver with.

It sounds like you have multiple serious problems and I'm worried for you and hope that you have access to good medical care. Please try to see a real hepatologist if you havent and involve them in your medicine decisions, and if you think that there is any way that the heart, migraines, seizures and pbc are related and your hepatologist disagrees, follow your gut and get a second opinion. I've never heard of xantac for pbc, but I don't know what all they prescribe, I have NASH (nonalcoholic steatohepatitis) which is a different type of disorder that also causes some other problems like PBC does. The liver effects many things and can cause autoimmune disease. PBC is an autoimmune disease.

As for the moodiness, liver disease causing or caused by autoimmune problems seems to also cause alot of autoimmune endocrine problems, and the drugs we take like prednisone and other steroids, then if you take any type of estrogen for birth control or whatever, or if you need it and don't take it, it will make you very snappy. If you have irregular periods or are menopausal or postmenopausal, you may need some hormones and a check up from the gyn. I got polycystic ovary disease and severe endometriosis from my liver disease and finally got a hysterectomy and every one liked me better once I went on the estrogen patch and I felt alot better, more energy. Then I developed hashimotos hypothyroid, so when I finally got that dx, they put me on thyroid hormone too and I'm even better. A good hepatologist should explain to you all the other problems that could occur with the disease, and you can search the web on it. I can post some links if you want me too. It's sort of all interrelated, which is bad in a way, but good because when you get one thing under control, the other problems usually get a little better at least, if not more.

I will keep you in my thoughts and prayers and if you need help getting health care or something let me know and I or someone will give you the patient advocate site and they have real people at 800 numbers that will find what is available for you in your area and help you in many ways, even making calls and trying to get a doc to see you at a discounted rate or billed later, or both, they are great they will make sure you get to see the type of doc you need. Let me know if you need more help and my heart goes out to you (((hugs))) and hope you feel better. Also, lyrica is really bad on the liver too, there might be something better for you on that end too.




Actually, a site or numbers to call would be awesome if you could. I'm currently having to go to a free clinic, who sent me to a rheumotologist (sp) and I've been too a few other doctors, GI.. ect, but not one specifically for the PBC. Currently, they didn't know what else to put me on except zantac.. I was on Nexium, just for the access bile, and some heart burn and whatnot I was having.. and I don't take predisone, but I do get cortizone shots for my arthritis, and COPD flares, and for the lupus.. which seems to be messing with my stomach even more. I've researched a lot, and the I'm concerned about taking the Lyrica too. The depakote has been helping though with the seizures, I was having one almost every day.. I'm trying to get to various doctors, so I can get on disability which will be a long and painful road from what I've heard. Recently though, my snappiness has gotten a bit worse, and I cry at the drop of the hat.. and I do have a large non cancerous tumor on my ovary that's been causing me a lot of problems as well. It seems like when you get one thing under control, another one pops up. All I can do is research different things, and have other people such as yourself tell me what I might not already know. I appreciate it.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 11/12/2007 7:02 PM (GMT -7)   
Hi Rebecca--

There are several patient advocate sites and some are just not the right ones.
The good one is:
http://www.patientadvocate.org/
1-800-532-5274
I called them and they helped me find the free docs and help for my son, how to handle social security during the waiting period, trying to get medically necessary medicaid and stuff. They are very good at fighting for you and do more than just fighting with insurance companies, though they do that too.

I wish they would sticky this link!
Love, Marji
--Doctors are men who prescribe medicines of which they know little, to cure diseases of which they know less in human beings of whom they know nothing.--Voltaire (1694-1778)
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Klonopin, Soma, Ultram, Vicodin, Restasis, Albuterol,steroid injections, Protopic & Triamcinolone Acetonide ointments


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 11/12/2007 10:00 PM (GMT -7)   
cured4real? said...
Hi Rebecca--

There are several patient advocate sites and some are just not the right ones.
The good one is:
http://www.patientadvocate.org/
1-800-532-5274
I called them and they helped me find the free docs and help for my son, how to handle social security during the waiting period, trying to get medically necessary medicaid and stuff. They are very good at fighting for you and do more than just fighting with insurance companies, though they do that too.

I wish they would sticky this link!


Thank you very much, I will look into that.. I appreciate it. It's really hard to get into all the doctors I need too, since I can't work and I have no funds.. and we won't talk about all the hospital bills I've wracked up. Hopefully I'll find out everything that is wrong.
Thank you again.
Diagnosis - SLE, FM, high blood pressure, A-fib, tachy cardia, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis.
Medications - Depakote, ativan, lyrica, metrapolol, zantac.

New Topic Post Reply Printable Version
Forum Information
Currently it is Wednesday, December 07, 2016 7:20 PM (GMT -7)
There are a total of 2,734,410 posts in 301,211 threads.
View Active Threads


Who's Online
This forum has 151329 registered members. Please welcome our newest member, OleMiss1990.
391 Guest(s), 7 Registered Member(s) are currently online.  Details
Rikky1, Ravineman430, Sarebear89, Xmaslover, Charmed3, Suffering34, k07


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer