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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 19 of 19. This is the beginning of the thread.
Posted by Nilsouka on March 25, 2011, at 16:14:44
I have bipolar 2. I've been on Lamictal and Topamax for about 8 years. They worked for about 2 years and since then I've been adding one booster or another trying to find something to stabilize my mood.
In November the pdoc prescribed Effexor which caused severe TMJ and restless leg syndrome. I was miserable. And, since it seemed I've been miserable for years, pdoc and I decided we'd clean the slate and then start over. So, I've been weaning off of everything for the past month.
Effexor withdrawal was torture. Had the brain shivers, nausea, fatigue, sleeplessness. Now I'm weaning off of Lamictal. I am having HORRIBLE body aches. Everything hurts all the time.
I have a history of pulmonary embolism so the primary doc made me have CT scans of my chest to make sure I didn't have new blood clots because the chest pain was so intense that it painful and difficult to breathe. It was negative and they diagnosed me with costochondritis - inflammation in the sternum.
While that would account for the pain in my chest, it doesn't account for the pain in my shoulders, neck, legs, toes, fingers, head, jaw, hips...basically every where else.
Is it common to have such painful withdrawal from these medications? What do I do about it? How long will it last?
Posted by Phillipa on March 25, 2011, at 19:16:59
In reply to Lamictal, Effexor withdrawal - severe body pain, posted by Nilsouka on March 25, 2011, at 16:14:44
Oh my that is horrible. Will have to google what you have of sternum. Never heard of these withdrawals before. Could the meds been masking something else? PE is serious is there a reason you get them? Older or younger as wondering if could be arthritis or fibromyalgia? I do know withdrawals are horrible for some. And that is pretty quick to withdraw down to nothing? Phillipa
Posted by Phillipa on March 25, 2011, at 19:26:44
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by Phillipa on March 25, 2011, at 19:16:59
Here is a link to what you are dignosed with and both arthritis and fibromyalgia are mentioned. Are you taking antiinflammtories? Phillipa
Posted by BetweenDreams81 on March 25, 2011, at 20:00:56
In reply to Lamictal, Effexor withdrawal - severe body pain, posted by Nilsouka on March 25, 2011, at 16:14:44
Nilsouka,
I'm really sorry to hear that you have been in so much pain. My own experience with Lamictal is a bittersweet one (short lived though it was). I was titrating up and felt a positive change mentally, but physically, I had the symptoms you describe...PAIN in all of my joints and muscles...back pain like I have never in my life experienced (and I have had a several really hard falls off horses, so I know pain!) Then as I went up to 50mg, I had visibly inflammed lymph nodes, flu symptoms (chills and hot flashes) with a fever and a day or 2 after the 'flu,' got what I was told was the "real" Lamictal rash...I also for the first time was experiencing joy, and colors were truly brighter, waking up feeling full of life and energy...but I guess living is kind of important.
So, I guess to sum up a long answer to your short question: It wouldn't surprise me if those were considered "normal" withdrawal symptoms. I hope they subside quickly. Tylenol sort of helped, but I do remember it being a deep down to the bone ache. Best wishes for a quick recovery.
Posted by MatthewDavid on March 25, 2011, at 20:18:27
In reply to Lamictal, Effexor withdrawal - severe body pain, posted by Nilsouka on March 25, 2011, at 16:14:44
Hi Nilsouka, best of luck to you. Effexor is known for aweful withdrawels, Upon discontinuing paxil after years the withdrawels were aweful, I wish I would have known what I've learned since. Benzo's (xanax, klonopin), can be given with most SSRI's/NSRI's and are commonly prescribed as combination therapy. What I learned is anytime I start a new med that may take a while to kick in or discontinue a med, Benzo's can really help take the edge off.
Posted by Nilsouka on March 25, 2011, at 20:22:40
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by Phillipa on March 25, 2011, at 19:16:59
Thanks for responding Phillipa. The PE's are caused by anticardiolipin antibody syndrome.
I'm 38. My mom had fibromyalgia and Ive been wondering if that could be it. I've had varying intensity of body aches for years but nothing this intense or generalized (yet, there are some very specific points of pain as well). I always assumed it was because of weight and depression. Are suggesting that the psych meds have been masking fibromyalgia?
I was prescribed a 7 day prednisone pack for the costochondritis as well as Celebrex which is an NSAID. I wouldn't consider taking prednisone any longer as I didn't want to risk a manic episode. And, because I take the blood thinner Coumadin to prevent PE's, I can't take the NSAID either. (NSAID can increase the risk of internal bleeding. The fact that the primary doc even prescribed this stuff to me was a red flag indicating that he clearly doesnt understand the significance of all the factors or isnt willing to try to help me manage them.)
I took a good month to wean off of Effexor and I'm weaning off of Lamictal over about 3 weeks. I'll start coming off the Topamax once I'm totally off the Lamictal. I should be off of all psych meds by mid April.
I am seeing a new primary doc on Tuesday. I like togo I prepared, with some ideas already. Since a lot of primary docs are sort of clueless about psych meds, I thought I'd find out if what I am experiencing could be related to the psych drugs.
Posted by Nilsouka on March 25, 2011, at 20:28:48
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by BetweenDreams81 on March 25, 2011, at 20:00:56
Ugh! That's awful. It's so hard to find a medication to help your mood and then when you do, your body rejects it! Blast! My best friend had a similar experience. She's since found "bliss" with Abilify and Wellbutrin.
I've heard of people having body aches as they INCREASE their Lamictal dose which is why it occurd to me that maybe coming off of it could cause it as well. I don't know.
Posted by BetweenDreams81 on March 25, 2011, at 20:54:25
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » BetweenDreams81, posted by Nilsouka on March 25, 2011, at 20:28:48
That really is the pits to be dealing with...I am so sorry :( I "hope" (for want of better word!) that it truly is just a withdrawal symptom and not something longer term.
A little off topic, but not unrelated...I was out of meds (long story w/ d@mn online pharm and delivery address mix up) and resorting to supplements and homeopathic remedies. Arnica 30X for my wrist pain, but wouldn't you know it elevated my mood! (I think!) and since I didn't have Ambien, I tried the Hyland's Insomnia formula and that worked better than the Ambien (didn't wake up foggy). So, I wonder if you can take the Arnica 30X tablets for the pain since it is not an NSAID? I took 4 under the tongue every 15-20 min for the first 2 hours, and now 3-4x/day, you can go up to 8x/day. Also now taking the Hyland's Bioplasma Cell Salts for general health. I do think it has made a very noticible, positive impact. Meds finally came in today after 14 days to deliver!!! So, the week supply ran out a week ago and had to resort to alternative. I will discontinue using Ambien for the time being. Do not think this is all just a placebo.
Homeopathic is supposed to be compatible with prescription meds and not interfere. I would check to make sure, but really recommend giving the Arnica a chance to work for you. Again, really sorry you have to deal with such pain.
OH! Just remembered another thing that worked really well for me, it was an herbal supplement for inflammation...herbal doesn't always mean safe though, just make sure it doesn't act in the body the same way an NSAID does, but Inflam-Away (think that's it's new name...it used to be End Pain by Enzymatic Therapy)
(((hugs))) keep us updated
Posted by Phillipa on March 25, 2011, at 22:12:00
In reply to Re: Lamictal, Effexor withdrawal - severe body pain, posted by Nilsouka on March 25, 2011, at 20:22:40
Hi okay another diagnosis to google but that's for later tonight. Is it some sort of autoimmune disorder as they seem to go together. Cymbalta had back pain didn't know I had when off of that. I know have osteoporosis, orteoarthritis, terrible pain also. I noticed that one of the trigger points for fibro was where your pain in chest is. I feel you should see someone very knowledgeable in medical disorders. Not doubting that withdrawal cause cause some of this. But with the medical problems perhaps a rheumatoid doc and cardiologist as well. Start there. So referrals from Gp. Please keep me posted. Phillipa
Posted by Phillipa on March 26, 2011, at 0:53:22
In reply to Re: Lamictal, Effexor withdrawal - severe body pain, posted by Nilsouka on March 25, 2011, at 20:22:40
If I googled the right dx and will do again does this mean it could also be lupus related? So you do have some sort of autoimmune disorder. Reminds me of when they were trying to figure out if mine was lymes or autoimmune relate. Phillipa
Posted by Nilsouka on March 26, 2011, at 7:41:28
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by Phillipa on March 26, 2011, at 0:53:22
There are two types of Antiphospholipid Antibody Syndrome which indicates the presence of antibodies for the one I have (cardiolipin) And lupus anti coagulant. I only test for the first one, not the lupus anti coagulant so it's not lupus.
It deosnt rule out autoimmune in general, though, just that one. I think you're right. I need a complete work up by some docs who know their stuff and may need to see a rheumatologist as well.
What's the difference between DO, internist, fami doc, etc? I
Posted by Phillipa on March 26, 2011, at 21:42:44
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Phillipa, posted by Nilsouka on March 26, 2011, at 7:41:28
DO is doctor of osteopathy, family a general practioneer just sore throat stuff usually here at least refer out to specialists, internist more in depth knowledge of internal organs also refer out. A rheumatologist, endocrinologist, maybe even infection control speicalist. If you are female is this the fertility one? Phillipa
Posted by Phillipa on March 26, 2011, at 21:44:58
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Phillipa, posted by Nilsouka on March 26, 2011, at 7:41:28
Also DO's seem to also deal with the whole body and also believe in wholistic. Massage, manipulations easy ones, supplements. I had a great one as a pdoc. Did psychtheraphy too. Phillipa
Posted by Nilsouka on March 26, 2011, at 22:52:13
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by Phillipa on March 26, 2011, at 21:42:44
I'm female. The doc I'm seeing on Monday is a DO and my last - best doc ever - was as well. We'll see what happens. I'll let you know how it goes.
Posted by Phillipa on March 27, 2011, at 18:55:11
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Phillipa, posted by Nilsouka on March 26, 2011, at 22:52:13
Please do. And the very best of luck!!!! Phillipa
Posted by desolationrower on April 4, 2011, at 2:30:13
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Phillipa, posted by Nilsouka on March 26, 2011, at 7:41:28
> There are two types of Antiphospholipid Antibody Syndrome which indicates the presence of antibodies for the one I have (cardiolipin) And lupus anti coagulant. I only test for the first one, not the lupus anti coagulant so it's not lupus.
>
> It deosnt rule out autoimmune in general, though, just that one. I think you're right. I need a complete work up by some docs who know their stuff and may need to see a rheumatologist as well.I can't quite parse this, and don't know anyting about it specifically.
But it sounds like you really shoudl be on asparin and fish oil at least, i hope you are?
effexor w/d was the worst.
-d/r
Posted by Nilsouka on April 4, 2011, at 9:17:29
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by Phillipa on March 27, 2011, at 18:55:11
The new doc was a bust. Total jerk. So I still have to find someone new. I went for a reiki session last week and the body aches have subsided considerably. It was my first time and I don't know if the relief was a result of the reiki or the drugs just leaving my system. Either way, I'm feeling better. In fact, I'm feeling better than I have in years! I hope it lasts! Thanks for the feedback!
Posted by Phillipa on April 4, 2011, at 20:35:34
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Phillipa, posted by Nilsouka on April 4, 2011, at 9:17:29
Wow that's great. So how long now since the meds out of your system? And what did the Reiki person do as once saw a lady who claimed she was doing it but felt not a thing? Phillipa
Posted by Phillipa on April 4, 2011, at 20:39:42
In reply to Re: Lamictal, Effexor withdrawal - severe body pain » Nilsouka, posted by BetweenDreams81 on March 25, 2011, at 20:00:56
Lamictal sure must be nasty stuff. I once got to 50mg and had constant spitting saliva poured out of my mouth so discontinued it? No withdrawal though? Starting to feel I'm extremly wierd. Phillipa
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