My dear Sisters, I know we have discussed this topic many times and I'm sure I did already receive an answer to this question, but my suffering continues and is so bad that I just spent an hour in an empty parking lot hysterically sobbing because I don't recognize myself or the world anymore.....so please please please....can someone answer this?

Has anyone here who suffered through really bad Derealization/depersonalization since entering peri actually got their minds back? Whether is was from an AD, BHRT, BCPs, diet, supplements, thyroid meds, actual Menopause.....whatever....i don't care, I just want to know, has anyone who thought they would never "see" the world or "feel" themselves, remember their beautiful memories, have a normal sense of time and past/present/future events, feel JOY and LOVE, and not be affected by changes in light, sounds, smells. Please give me something to hang on to. I can't imagine spending forever living in this horrible place that is my own altered perception.

Please just let me know if anyone has come out on the other side of DR/DP and really felt like who they used to be.

thank you so much.....god bless you all......Dee

i can tell you my experience to hell and back !!!! it was 2 years ago totally lost it , had phychotic break, was in hosp. physcic ward for 3 days of pure hell , from meno-phychosis induced by not sleeping or eating for 7 days and yes today i am living a pretty good life i have my minor complaints of peri but emotionally its 100 percent better, the only thing thaat gets to me is the thought of losing control again, but thats out of my control , my faith has helped alot , but it was terriable what i went thru, seeing and hearing things that werent there, losing reality scariest thing ever, i hope you will feel better soon, and know if i came out of my severe phychosis you will too, just hold on to all of us .... i had to learn to not fear things that i thought was gonna happen- and not worry so much, worrying will not add one day to your life, but it can ruin the quality of that one day....i also had bad health anxiety , i always thought i was dying or had a terminal disease now when i get that i welcome it like oh well at least i will be out of my misery and be with my heavenly father and when it passes im still here- oh well sorry to burden you with my problems ttyl.......bye

No, youre not burdening me at all. I am so scared. I dont know what's happening. Thank you for sharing all that you did. Though I dont know if what I have is considered psychosis -- yet. Who knows what the future holds for me. All I know is that all of this started in April (the worst of it with the mental stuff) after a horrific series of panic attacks and its like my brain never reset itself back to "normal" After the derealization set in, its never left. But I had a really good month in August thinking the worst was behind me, then it came back so bad, with no break....its like mental torture. Thank God you are well and staying that way. I am so happy to hear that. I am unsure as to what is causing this horrible stuff in my head, but it all happened when my period changed, the anxiety hit, and I was never the same. I know you were in the psyche ward for 3 days and I cant imagine what that was like, but how long did it take you to really feel better? Love, Dee

they had given me some meds to zap me back to reality and luckily it worked, within a month of being home i was back to " normal " what ever that is- but its always still in the back of my mind, but i also know it started out as deppression, which progressed to severe deppression with phychosis, and know if i ever got any of those symtoms again to head for the doc asap to get a.d.

Dear Dollie i had the feeling of not being there or my house not feeling right or looking right i always had some kind of bad thought in my head early in the morning and adrenaline rushes through my body from sounds outside. xanx did help for a short time but i needed more.Until one day i deicided to take the Ad my doctor wanted me to. So ever since october 2007 i been pretty much feeling my oldself. again. and i am hoping so much that you do soon!!!! Hugs Terry

I don't know if what I went through is exactly like what you are going through Dee but I have/had been a mess since January, it started with health anxiety, worrying about annual testing, freaking out over the results, very very focused on every little thing, doom and gloom feelings that encompassed me, my thinking became obsessive, every little thing set me off, it was like all my thoughts just went in a loop, I would hold on to a thought and run it round and round and round, my body was tensed up, I felt disconnected from everything and everyone and I lived in this terrorized state, it was like I was being held by a terrorist and that terrorist was me. I swear I gave myself Post Traumatic Stress Syndrome I was depressed and barely functioning. I felt like I was in a living hell. Did not feel connected to anything. I tried Prozac, it didn't work. Had a few manageable months and then it started back again. I finally decided to go to back to my psyche Dr. and asked for Lexapro, heard it helps anxiety/panic/depression. So, here it is about 5 weeks later and I am able to push back the scary thoughts easier, I just tell myself you are here today, you'll probably be here tomorrow, so enjoy the day, even if that means laying around all day or whatever I choose to do. I take Xanax as well if I need to. However, to be honest, my anxiety is pretty decent now. I do take it to sleep. So, for me (unless my hormones are being nice to me which to be honest I hope it's the Lexapro and not my hormones, I trust that better than my hormones these days) I feel way better than I did. Not perfect but I'm not in any emotional pain. I am not sure if you have tried anything yet. Everyone reacts diff. to meds but it's worth a try. I personally am more comfie on the AD and Xanax then hormones but trust me if the AD stops working or if it didn't work I would have went down that route for a quality of life. I am so sorry you are in such pain, I know in my own way how blind sighted i felt when this happened to me. I can only imagine how scary it is for you. Many of us have had our various experiences and found our way out. I have faith you can to. Hang on and reach out (I know that seems counter productive but you know what I mean ) ((((Hugs)))) Mich

Dearest Dee,

Of all the sisters I've met through PS, you and I seem to have the most similar experiences, symptoms and (unfortunately) misery. I wish I could say for sure that I knew why, or definitively that this will go away. I know that what you're describing is what I went through for months on end, and it started with several sleepless nights, a bizarre "buzzing" sensation and absolute terror (couldn't tell you why though!!!), then it morphed into horrifying derealization, depersonalization and near hallucinations.

I had episodes of feeling like my brain was being pulled out of my body, of having dimness that made me think I was losing my vision altogether, and such bizarre and horrific perceptions and feelings I don't even know how to recount them all. That's the really bad news.

The good is that over time things have gotten so much better. I'm back and work, going out and doing "normal" things and even recently volunteered to be the team parent for my son's football team (HS Freshman). But are things really OK? Not at all. I find that I'll be going along and doing quite well and then all of a sudden I have this "wave" come over me of feeling like I'm not really in my body (that's not even really what it feels like, but it's so hard to explain). Or, I'll suddenly feel these odd sensations in my head, kind of like a wobbling or bouncing that remind me that all is not well. I also find that I lose my balance and feel dizzy, disconnected and just plain strange...

I don't know if I/we will ever know for sure what this really is. My doctor says that he thinks most of it is due to me having lyme/babesia and bartonella, but I don't know. He also says that the only definite with me (which may be different than you) is that I was severely anemic from having had such heavy periods for months, before they slowed down drastically, then stopped for 4 months, then had one period, and now I have no idea what my body is doing, sigh.

What I think I can say for sure though is that I don't think I'm psychotic, nor do I think you are, because we are aware of this experience, aware that things are distorted and able to describe it as something abnormal, whereas someone who is truly psychotic can't distinguish what is real and what isn't.

I know that this may not be the answer you're looking for. I wish I could tell you for sure that this will go away, and when. I can't do that. But I can say that things are so much better than they were for me, and I think they will get that way for you too. I know that this is so hard, but you've got to be patient. I'm here for you. We'll get through this TOGETHER.

Lots of love!

Cindy

Dearest sisters,

Thank you all so much for your replies. My gut instinct tells me this is all hormones (on top of Lyme, stress, poor adrenals, etc) but hormones nontheless. I havent tried BHRT yet and I can only hope that somehow once I do, my brain chemistry will be somewhat fixed enough that I wont feel like Im living in a nightmare forever. If anyone out there has more success stories, especially a recovery from derealization -- the most horrofoc thing on earth-- please please share. I am just clinging to hope at this point.

God bless you all....love, Dee

Cross18:
did you get my PM? If so, please post as much as you feel comfortable with for Dee.
Avi

Dee,

A year ago, I was at a small dinner gathering with friends. We were celebrating two October birthdays, one of which was mine. I had to leave.

I was sitting there but felt as though I wasn't there. I had had a lot of episodes like that leading up to my hospital stay. That night--at dinner, I had to leave. I didn't even order. I told my friends that I wasn't feeling well and that I had to go. The experience was that they were conversing and living it up. But I wasn't there. I was like a free-floating alien who couldn't connect to what they were doing or saying in any way.

On the walk home that night, it took all of my concentration to make it back. The world was surreal. I felt as though I'd been drugged by some sort of hallucinogen.

In the hospital, they convinced me to try some medicine. I fought them for three days before succumbing but I finally agreed. It was the best decision I could have made.

I would love to be off the pills someday but the truth is that I need them now.

I was up to 150 mgs. of Seroquel in the hospital but weened myself off it over the course of about 6 months. I've come upon a particularly stressful time this fall (including 1-year anniversary of my breakdown) and my psych suggested I go back on the Seroquel. Another good call. Fortunately, it only takes 12.5-25 mgs/day to do the trick now. (I'm also on 50 mgs. of Zoloft.)

All this to say, that progress can be made.

I truly thought I had lost my mind. Lost myself. Would never return home to my body. I did. I still struggle but I know the territory now so can make better decisions about it.

To anyone suffering like this, I highly recommend Hope and Help for your Nerves. It's dated but offers some wonderful insights and coping skills. I carry it with me every day to work and read as needed. I've read it twice already.

Love and support to you all,

Sukie

Dearest Sukie,

Thanks so much for your kind reply. I dont know whats happening to me, except to say that things have morphed into something even stranger than what i was experiencing before. At least before there were moments/days even of relief, this is like a 24/7 drug-induced trip. The weirdest thing is that I do not have any anxiety like before. I used to be in panic mode and believed that was causing the DR-like episodes. But this is just out of the blue, I feel mentally ill. It all started with my last period. I had almost no bleeding at all, and as soon as it was over, I went into this crazy, scary horrible place. I just tried some progesterone cream last night and this morning though things seemed slightly better, I still feel like Im in a very bad place. I did read claire weeks book, but it cannot take away this emotional torment since I still really dont know what is causing an otherwise normal brain to become "insane" ....its so sick, I cant even describe it. Im afraid of taking Seroquel or any of the other mind altering drugs because some of them have severe side effects and I am scared to death of doing more harm then good. Something inside me just thinks I should exhaust all other options first, like bhrt, thyroid meds, lyme treatment. But I thank you from the bottom of my heart. I just want to feel normal again, even if I dont feel like me anymore, I want to not feel insane, thats all......Love, Dee

Dee:
Just wanted to say that I never took a single psych med..my strongest intuition/inner guideance said "NO" and I honored that. I now know why. Taking meds is a personal choice; however, if you have had a resurgence of Lyme, then psych meds are not going to fix that and may even mask the problem. Many times docs are a little too quick with the prescription pad for the wrong prescription if you get my drift.
Avi

Hi Avi,

I got your PM -- thank you from the bottom of my heart for all you said/advised. I will respond personally in a little while. I just wanted to add that I feel that while some women strongly benefit and actually recover with the aid of ADs/Psych meds, I just know that i cannot go that route. I did have DR about 3 years into having contracted Lyme....i was 24 and I remember walking through Disney World on a family vacation trying to hide how mentally ill I felt and how distorted and scary everything looked around me. It actually went away without abx back then, the only thing I was doing at the time was taking mega vitamins and diet, but it never came back. I do remember being SO sick back then, riding the bus to work and looking at everyone's faces turning into monsters...I will never forget how horrible that was. It seemed to resolve on it's own, but Lyme DOES do horrible things to the mind/nervous system. I will let you know what my results are when the tests come back. Once again...thank all of you....you are my lifeline in all of this. God bless you all.....Dee

Hi Avi,

I ended up forwarding relevant parts of your PM to Dee via email. Thanks a lot for your words of advice. I talked to my lyme doctor afterward and am temporarily stopping the antibiotic I was taking and trying an herbal remedy for a while. I'm really sensitive to these heavy duty meds and it seems that for a while it was the antibiotic that was making the derealization worse. I'm still not back to "normal" -- don't even know what the heck that is any more -- but doing better the last few days without the levaquin.

Thanks again...and maybe for more lyme discussion, please contact me via email @ mochadiva36@aol.com.

Cindy

When I first had what were later diagnosed as lyme symptoms, the HMO doctors I saw tried to dismiss me as having an anxiety disorder and kept pushing psych meds, both benzos and an AD (Celexa) on me. They literally almost killed me when I tried them in desperation. I started seeing trailers on things and having other near visual hallucinations, and also had auditory hallucinations (voices telling me I should die). It was the most horrifying, hellish experience I've ever had because I've NEVER had psych problems before and have always dealt with stress (2 bad divorces, my house burning down, etc.) pretty well. This was different. My lyme doc actually says that it can be downright dangerous to give ADs or other psych meds to lyme patients having neuro psychiatric symptoms, because the infection messes with your brain chemistry anyway. And while people with lyme may get very anxious or depressed, it is not the same as someone who has a "psych" diagnosis at all, e.g., bipolar or psychosis, etc..

Cindy

Dee,

By all means, defer to the women who understand Lyme's Disease. I'm simply sharing my experiences with depersonalizaton which were independent of any other problems.

You have a good head on your shoulder and are clearly sifting through the comments and taking what is useful and tossing the rest.

Please know that I support you 100% in that process and urge you to continue to trust your gut--as each of us must do, as well.

Big hugs,

Sukie

Dee,

How is your vitamin D level coming? Since visiting with you in May, my anxiety has become manageable, DR is 95% gone, and I've raised my vitamin D level considerably. I don't think this is a coincidence. Give yourself the nutrition (and sunshine) you need and time to heal. I've read that Vitamin D can also help your immune system hold Lyme at bay. Things WILL get better, Dee! Hold onto that hope and know that I think of you often.

Hugs and Prayers,

JC

Dearest Sukie -- thank you for being there! For sharing your painful story with me and how you were able to come back to the other side. I wouldnt hesitate to try the meds if I thought this was really an imbalance in my brain chemistry, but as you said, I will see if I might have an issue with Lyme, which is possible, though I am feeling in my bones that this is ALL hormonal HELL brought on by a series of incredibly stressful events.


JC!!! I COMPLETELY agree with 100% about the Vit D levels. When I was first having severe panic attacks and the DR first hit me so badly that I could barely function I took many blood tests and one of them revealed my vit D level at 18! I started supplementing right away with 2,500 ius a day and in about a month I felt a siignificant reduction in all my worst symptoms. When my bottle ran out I didnt bother to get another one for a long time and that was when everything started sliding backwards for me. I read that stress and natural againg depletes your D levels and that without proper levels you can have so many biochemical problems. I never could have imagined that a little tiny vitamin like Vit D was responsible for so many functions in the body. So, needless to say, I am back on it and taking a 10,000 iu weekly, hoping to get my levels back up again. Thank you all SO much for the constant support. Sometimes the only thing that makes me get through another day is all the advice, support, suggestions and love that I have found on PS. Thank you all from the bottom of my heart....love, Dee

Oh, Dee! You need D!

I'm so glad that you're starting back on the vitamin D since it worked so well for you in the past.

It is so unfortunate that this whole experience is so mystifying for all of us. We all suffer but our symptoms and what helps us is so different.

Also: I know what you mean about brain chemistry. I'm actually not convinced there's anything off with my brain chemistry. Estrogen has a role in regulating cortisol in our bodies. (I think I'm getting this right from my studies. M.D.s are free to correct me!) When the estrogen drops, it's not just about estrogen dropping; it's about all sorts of other hormones deregulating which can cause all manner of mood shifts.

Because I've never experienced such debilitating depression or anxiety in my 44 years on this planet, I'm quite certain that peri has something to do with it. And I chose low dosage meds--for me--because they help remove those hideous symptoms.

I hope, hope, hope, hope, hope that your vitamin D regimen and your new approach with Lyme's will bring you to a state of relief. I do not know much about Lyme's but I have seen quite a few posts out here from women who were suffering from peri-type symptoms only to find out that their diagnosis was something else.

You've got a lot of courage and drive and determination.

Hang onto that!

xo

Sukie

Cindy:
Thanks for forwarding important things to Dee. I hope you didn't misconstrue my PM as advice to go off your antibiotic. Once this little monster is in your CNS, it is very important to get it out. It is interesting that your doc has you on Levaquin..it is not usually a first line choice for Lyme, but is sometimes used for bartonella. I had to "kiss a few frogs" with antibiotics before I found something that I could take. Doxycycline caused me to herx so severely and have such a severe headache (doxy has a rare side effect called pseudo tumor cerebrii) that I thought my head was literally going to explode..I also took Omnicef in combination with Zithromax and Septra...eventually settled on high doses of Amoxicillin which I couldn't take with Probenecid..I thought I was going to go completely over the edge so we had to discontinue it.
If you want to know more about Lyme diagnostic and treatment guidelines, google ILADS (International Lyme and Infectious Diseases Society) 2008 Lyme Treatment Guidelines.
Avi

Dee:
Your Lyme may have gone into a remission of shorts, but it is not going to "go away" on its own and vitamins/minerals, indeed anything less than antibiotics is grossly inadequate treatment. Your symptoms, like my own (I also had misc neurological "stuff" tremor, facial drooping, pins/needles sensations, severe vertigo, just feeling "sick" like your body feels when you have the flu and more)indicate Central Nervous System involvement. In that case, it is of CRITICAL importance that you get treated. If you don't feel like you can read (e.g., concentrate) some of the books articles that I shared with Cindy, order yourself the DVD "Under Our Skin" http://www.underourskin.com (my doc is in the movie). I take Lyme very, very seriously..I know what it can do..I don't mean to scare you or add to your pain in any way, I mean to save your life both figuratively and literally; but you need to know that Lyme can be fatal.
I've included a link below to Brian Fallon's Assessment on N-P Aspects of Lyme. I have to re-read it myself when I start to be in denial or start feeling better and want to come off my meds.

http://library.lymenet.org/domino/file.nsf...1f?OpenDocument


It might be helpful to know what tests your doc ran...if they were anything less than a Western Blot (and I suggest an expanded WB by Igenex, Florida Research or similar lab) then I would press on even with a negative result. What/who diagnosed you with Lyme to begin with? What was your treatment?

Avi

Dee,
I am so sorry that things are not any better with you!!!! You have been on my mind, but this is the first chance I have had to come to PS. We have been doing so much cleaning out and working around the house I have been too tired to get online for very long. Dee, I understand what you are experiencing and it is the most horrible indescribable feeling in the world... utter, utter helplessness. Please, Dee, lean on your family right now. Can you go over to your sister's or your mom's? I think it is so helpful to be around those we love when the world is such a scary place. I am glad you began your D again.... this is so important. As I have said before this is not YOU.... it is your hormones. Maybe the Lyme is causing you to go through a terrible peri/meno just like the Hashi's is causing mine to be a nightmare.

There is nothing in the world worse than this DR/DP. I know I have it in varying degrees every day and do not understand why it goes up and down so. Maybe someday we will look back on this time and understand it a little bit better, but for now while we are in it, it is a nightmare. Please hold on to what faith you have and know that someday it will get better. This is what everyone tells me. It is SOME better for me and it has now been over one year I have been in this state. You know it will have to even out soon.

Please, please hang in there and be so extra, extra good to yourself right now. I am sending you lots and lots of hugs..... ((((((((((((HUGS)))))))))))).
LOVE,
mood_swinger

JC!!! I COMPLETELY agree with 100% about the Vit D levels. When I was first having severe panic attacks and the DR first hit me so badly that I could barely function I took many blood tests and one of them revealed my vit D level at 18! I started supplementing right away with 2,500 ius a day and in about a month I felt a siignificant reduction in all my worst symptoms. When my bottle ran out I didnt bother to get another one for a long time and that was when everything started sliding backwards for me. I read that stress and natural againg depletes your D levels and that without proper levels you can have so many biochemical problems. I never could have imagined that a little tiny vitamin like Vit D was responsible for so many functions in the body. So, needless to say, I am back on it and taking a 10,000 iu weekly, hoping to get my levels back up again. Thank you all SO much for the constant support. Sometimes the only thing that makes me get through another day is all the advice, support, suggestions and love that I have found on PS. Thank you all from the bottom of my heart....love, Dee
[/quote]


Dee,

My vitamin D level was 17, so I think I can understand how this might be affecting you. Yes, peri & meno are tough, but it shouldn't be impossible to get through this (and I felt it was). I have steadily supplemented D3 for six months now, and I'm convinced it has made a great difference for me. It was slow, partly because I only took 500 IU/day for the first couple of months. As I researched this, I realized I could take more than my doctor had prescribed. I currently take 2,000 units of D3 per day as well as fish oil caps. I'm down to a couple of hot flashes a day and one or two mildly anxious moments, which I can breathe through. My tremors have also subsided considerably and are not even present 90% of the time.

You're right, Dee, stress and aging do affect vit D levels; in addition, lower estrogen affects our skin's ability to synthesize it from sunlight. There's a lot of research connecting vitamin D to hormone and immune regulation. Here's one brief quote from Womentowomen.com:
"A recent study by scientists at the University of Massachusetts found that a diet rich in calcium and vitamin D can help control some symptoms of PMS, such as tearfulness, anxiety, and irritability.

PS Sisters, if you haven't had your vitamin D level checked, please do! Hugs to you, Dee, and all of you wonderful ladies on PS!

JC

Mood Swinger,
Good to hear from you. What a sweet post to our friend Dee, which we can all benefit from. I've been thinking of you as well and hope you are smiling and finding peace more often than not. Hang in there!
JC

I know in general I feel better when it is sunny out, but I'm not sure if that's related to vitamin D or other factors. When I was tested, my levels were very low (I forget, either 14 or 17) and one of the doctors I saw recommended a prescription of 40,000 units in soft gels that I take once a week. My levels the last time I was tested were in the low normal range (34) and I'm still taking the D. I am feeling overall much better, but honestly I don't know how much is the D, how much is the antibiotics I took for lyme, how much is the bhrt I took (have stopped for about a week) and how much is just the passing of time. I feel like I'm going to get a period, but have no idea if it's actually coming. I had one last month, starting Aug. 7 after not having one for 4 months, and have no idea what my body and hormones are doing next. Boy this is crazy...

Cindy

PS Hang in there Dee. I'm here for you always. And to my other PS sisters, please feel free any time to contact me offlist at mochadiva36@aol.com. Love you all!!!!

DD, my sweet.......

I think you are familiar with my story........and yes you can deal with DP/DR........meds did not work for me, but my ever faithful T does.......talking in a therapuetic context can help.......it may not get rid of the symptoms as such, but it helps with the trauma attached to it. I often wonder if my long psych history helped prepare for the onslaught of peri(I like to think so! )

So, when the meds don't work, your mind can be just as powerful in helping you cope, but you must have the skills first.......short of this a mild anti-psychotic may help specifically with this........an AD will not necessarily address it.......but as with everything there are side effects.......When my psychiatrist had me on anti-psychotics this time, I can't really say that it made much difference to the DP/DR but did reduce the anxiety caused by it. Afterall, we are not dealing with a mental illness......we are dealing with a hormone issue that effects us mentally and there are many brain hormones at play(dopamine, serotonin etc) but for different reasons........

If you wish to speak more of it, feel free to ask......

Take good care babe.......what you are experiencing is terrifying........just a thought, have you had your inner ears checked?

Big hugs,

Michah