Posted by BearNCrow on December 23, 2010, at 14:16:03
In reply to Re: Going Off Meds - Possible Misdiagnosis Of Bipolar, posted by mellow on December 23, 2010, at 5:11:06
Mellow and anyone else reading this,
Thanks for responding. I have had two psychiatrists since moving to my city this past January, and neither have ever checked my lithium level. With memory impairment caused by lithium, remembering to ask for it was hardly my responsibility. My PCP checked it a few times earlier in the year, but some times she ordered it with my other routine every 3 months bloodwork and I asked the phlebotomist to ignore it because it was a time of day that would have given a very inaccurate reading. I regret not knowing my level. I imagine it was extraordinarily high, more so as weeks progressed and ridiculous the weekend that the dehydration hit me. I'm over it. I'm never taking lithium again. I know for a fact that the lithium was the culprit and was for other things too.
I am in no way, shape or form feeling great because I am slowly swinging into mania. I sleep at least 12 hours a night and am tired all day, am clear headed, and have done nothing manic-like. All that is happening is that I am waking up from 11 years of lithium use that deadened me from the inside out. I have never been manic, and hypomanic is pretty hard to pin down too, hence one of many reasons I and my treatment team think I'm probably not bipolar, or if anything have a mix of anxiety and occasional agitation and sleep issues, i.e. sleeping 4-6 hours a night rather than 10-14. Not manic.
I was taking 1200mg lithium, 300mg seroquel and 2mg klonopin for a long time. I cut the seroquel back to 200mg first, then gabapentin was added for nerve pain relief (doesn't work) and to try and help me get more restful sleep (not happening). The gabapentin has been adjusted a lot this past month. I went off klonopin with no adverse effects. Then I went cold turkey off of lithium, moved seroquel back up to 300mg, went on klonopin 1mg twice a day and the anxiety that surfaced after going off of lithium has been gone without a trace left behind for a week. Back down to 200mg seroquel, increased gabapentin to 600mg morning and 1800mg night. Know that in the past I was on 1000mg seroquel with little effect and 3600mg gabapentin which was like sugar pills. Clearly my body chemistry has changed drastically. Will address that in a minute. This med cocktail is small stuff compared to previous cocktails. All that was making me sick was the lithium.
I have a PCP who I love. I've seen her for a year. She is amazing and highly reputable. Gives me so much time and care. At one of the oldest teaching hospitals in the country which I love. She is the type who will relive med school and go to the medical library and research stuff for me. I have a PCP, a psychiatrist who I like and don't envy, a therapist in California that I am ending with and am looking for a new therapist here in my city at an extremely inopportune time. I am starting a DBT group 1/13 to give me skills to deal with going off of meds. I see a psychiatrist who is a family medicine doctor and nationally known as a fibromyalgia expert who primarily treats aches and pains and is trying to address my fibro related sleep disorder of years of only stage 2 sleep (no wonder I always feel like I'm having an out of body experience - I never really sleep - and I dream all night which everyone says is impossible but it is possible if you're in stage 2 sleep all night!), and I have and am consulting with different orthopaedic and neuro surgeons about back treatments as well as PT people and pain management folks. I think that covers my health care folks. Less than previously believe it or not. I just had my lipid panel checked for other reasons and will try and get in with my PCP to check my kidneys. My psychiatrist could order it too as could my fibro doctor. I'm not super concerned. I'm quite resilient.
I was so ill 10 days ago that nothing that was important a week before that was important then. I just wanted to live through it and figure out the rest a day at a time. I feel amazing compared to 10 days ago, but have a long way to go. My wife is pregnant and the due date is April 22, so I am on a mission to make myself better so I can be a better husband and a great father. At age 33, back surgery is a sad reality, but I want to be able to walk which I can barely do now at certain times of the day, I want to be able to hold my child and stand for longer than 5 minutes, so I have to pursue some kind of intermediary back surgery. All that is keeping me from buying a cane is pride.
I wish more than anything I could get 3 good nights sleep in a row. I wonder how much sleep I would need once my sleep disorder might be resolved to sort of catch up. I have been clean and sober for 13+ years, so no worries about alcohol consumption. Diet Mountain Dew is my biggest vice, and I'm down to 2 cans a day for headache control mostly as the caffeine does nothing to help me feel awake, and I very occasionally drink coffee. I long for the ability to go for walks. I just can't these days because of my leg. The nerve pain can be excruciating down my thigh, and the pressure and shin splint like pain in my lower leg feels like a python is wrapped tightly around my leg. They say you are in real trouble when you no longer have the back pain but instead have leg pain. I have completed the history with this new doctor and he has my MRI and report. I think it will be great for him but bad for me. I start deep heated aquatic therapy in January, but I am realistically not expecting much. I have tried EVERYTHING they say to try before having a spinal decompression consult, and NOTHING has helped.
I do worry about a diagnosis of bipolar if it isn't accurate. If it is a road map for docs, why would I want them to have the wrong road map? My bipolar diagnosis, which has been questioned by therapists and psychiatrists for 11 years yet they continued to shove meds down my throat, has been the most stigmatizing thing for me and has been the biggest obstacle to receiving quality health care, way more than me being transgender. If I go off of all bipolar meds, I will forever be stigmatized by having had the diagnosis. Docs will still treat me like I'm crazy, maybe more so because how in the world could someone be bipolar and then not be?! Maybe because they never were! If it comes to it, I may just lie and leave it off all medical history once I move to a new city. I have already contracted with my wife that if I become really manic or really depressed that I will go back on meds and/or be hospitalized against my will. Believe me, it will not come to that.
My experience is that me finally asserting that I'm not bipolar after 11 years of giving in fully in all possible ways to a bipolar diagnosis and identity and victim status even when my care givers were questioning the bipolar has not at all been seen as confirming that I'm bipolar. Instead everyone in my life is on board me deconstructing my bipolar diagnosis, going off unnecessary meds and having a truly accurate diagnosis of anxiety disorder. I refuse to be a victim ever again. I am empowered now for the first time in my life. Everything is a new ballgame. I will be a much better and different patient from now on.
I'm not trying any new meds for now. Anticonvulsants never worked. Been there done that with Lamictal. Stopped it cold turkey a few years ago with no adverse affects. I offered to go on a new drug just to go back off of it when I stopped lithium cold turkey, as I'm not trying to prove anything to anyone, I just want to be healthy, happy and well, but he insisted that seroquel would be enough and it has been, too much in fact, it seems. The plan is to go off of seroquel, stay on klonopin for anxiety relief for now and maybe always, use gabapentin for non-psychiatric reasons, and have a baseline!!!!! and go from there.
I know I will be ok. I've always known that even though I've been through the ringer a sh*t ton of times. I believe everything happens for a reason, everything always works out, and no regrets ever. Sad to have not received any other responses besides yours. This is the one place I have gone to before where I get the best advice and support. Oh well.
Now for the transgender part and then I'll shut up. My anxiety goes back to my memory to age 7ish, always my primary problem and most feared mental state. Age 10 was the last time I remember being happy until now. In 4th grade I used to sneak into the coat closet before school and take off my training bra and then sneak back in after school and put it back on to go home. I started my period in July before 6th grade began and by September I was deeply depressed. My depression persisted ruthlessly for 22 years. There has been maybe 10 times when I kinda sorta maybe had some atypical signs of hypomania in those 22 years. I have had OCD problems. Obsessive handwasher in middle school. Tried drinking myself to death. Countless alcohol poisonings. Stage 1 liver failure at age 18. Sober before ever having a legal drink, and if I hadn't would have been dead by 21. Drug addict and got clean at the same time as getting sober. Was a cutter for a long time. Wanted to destroy myself or be destroyed by others. Prayed for diseases and brain tumors. Went years where I was suicidal and depressed. Attempted suicide a few times, once with a lithium overdose. Never knew a thing in the world about transsexuality and transgenderism until age 31. Not sure why but that's my story. Made a few statements regarding gender confusion to a few therapists but never talked about it further. In Israel where I lived for 14 months 2007-2008, I told me therapist that I didn't want breasts or a period but didn't know why, that every time I had my period from the first time I felt like I had a hatchet between my legs that only I could see. June 2009 had chest reconstruction and a hysterectomy. Lived as "genderqueer" and androgynous for a year and it was the most miserable year of my life yet my family was happy thinking I was happy and that I hadn't gone on hormones. I was always a tomboy and very masculine and "mistaken" for male from a very young age. Started hormones (testosterone) May 2010. Began being perceived as male full time within 4-5 months. I'm happy as a lark now. No signs of depression for months. No mania. No feeling or even having suicide at the bottom of my list; it's not even on my list. Brain is being wired correctly, finally, by the correct hormones. My doctors think my brain is literally rejecting the meds that it doesn't need. I have transitioned fully medically and legally and socially within 7 months of being on T. All I have left to do is take T injections weekly, have genital surgery hopefully in June 2012, and live and love life, finally, after all of this misery. Give me some surgeries and hormones and a new name, etc. and voila! If only it had happened 22 years ago. But no regrets, right? It saddens me deeply that transgenderism is in the DSM. It is a birth defect, a medical condition, and research in America and around the world supports that. I am proud that I have never been diagnosed with Gender Identity Disorder and that I've never needed a gatekeeping letter from a therapist for anything I have done to correct my birth defect. My PCP administers my hormones hence the every 3 months bloodwork. Transsexuality was added to the DSM by Harry Benjamin in the 50s yet there has never been a screening or assessment tool created for it yet there has been for virtually every other disorder in the DSM. It is a tragedy of epic proportions. I know fellow transmen from online who were misdiagnosed as bipolar as adolescents or young adults, medicated wrongly and then after starting T they became stable and happy and are all off meds and have no co-occurring mood instability. And I know there are others out there. Again, a tragedy of epic proportions.
I've certainly written enough at this point. If you've made it to now you're amazing! If anyone has questions for me or any advice about going off meds and finding the ones I truly
need, please speak up. I know I have an anxiety disorder. I know DBT will help me a lot. My psychiatrist said after 11 years of heavy medication my brain may be impaired in its ability to produce all of the neurotransmitters it needs on its own again, so regardless of whether or not I'm actually bipolar or not, I may need some mild bipolar meds so my brain functions properly. And I may have some agitation issues that may need to be addressed, but who knows how. I clearly have ADHD and always have, but treating me for it medicinally may be impossible because they are stimulants, and again, whether or not I'm bipolar or not is irrelevant if my brain has been taught over time that it is. Klonopin may be my only anxiety med option since anti-depressants also can cause agitation.Again, I am not anti-medication, anti-psychiatry, or anti-bipolar diagnosis. I definitely am anti-lithium, with just cause. I just want to do things right for the first time. What a long strange trip....
www.findingnewhopethemovie.com - a 7 minute documentary film in the making that sheds tons of light on the transgender community for anyone interested in learning more
Be well,
Ami (Ah-Me)
poster:BearNCrow
thread:974354
URL: http://www.dr-bob.org/babble/20101218/msgs/974432.html